Journal History - 2005-2009

  • December 2009
  • November 2009
  • May 2009
  • April 2009
  • January 2009
  • December 2008
  • July 2008
  • June 2008
  • May 2008
  • April 2008
  • March 2008
  • February 2008
  • December 2007
  • November 2007
  • October 2007
  • September 2007
  • August 2007
  • July 2007
  • June 2007
  • May 2007
  • April 2007
  • March 2007
  • February 2007
  • January 2007
  • December 2006
  • November 2006
  • October 2006
  • September 2006
  • August 2006
  • July 2006
  • June 2006
  • May 2006
  • April 2006
  • March 2006
  • February 2006
  • January 2006
  • December 2005
  • November 2005
  • October 2005
  • September 2005
  • August 2005
  • July 2005
  • June 2005
  • May 2005
  • April 2005
  • March 2005

 

A Letter From Nicholas' Life-Long Friend Writing To Nicholas About Heaven, Santa Claus, And More...

Joey is Nicholas' life-long friend and this weekend Joey's parents found a letter in his backpack he wrote to Nicholas. This heartwarming, sensitive, touching letter brought tears to our eyes as well as joy in our hearts as our precious Nicholas and Joey are truly friends forever. Click here to read the letter.

And you may remember Joey from the Memorial Service and Celebration of Life where Joey wrote and read his message to Nicholas going to heaven. Click here to read that message.

We trust, we believe, and we are thankful for God's touches of love letting us "just know" that we are with Nicholas as he is with us.

 

Happy Thanksgiving or "Big Chicken Day"......

as Nicholas would call it! We are thankful for God's love and touch that enables us to "just know" that Nicholas is never gone, never far, forever in our hearts and souls. We are thankful that Nicholas said one day, even before his leukemia diagnosis, "Father, if we can't see each other or touch each other, we 'just know' that we are in each other's heart and soul!"

We are thankful for family, long-standing friends, and new friends met via our private life that blends with our lives around The Nicholas Colby Fund. We are thankful for our continuously growing and blossoming relationships with children's hospitals and array of business partners collaborating with us toward our work we call Helping Children Be Children.

We are thankful for "you" who help us and the strength and passion that surrounds The Nicholas Colby Fund so our events/experiences can continuously uplift the spirits of children our work touches...until there is a cure. We are thankful for the doctors and researchers...and when there is a cure The Nicholas Colby Fund will be "there" helping to uplift the spirits of survivors.

We are thankful and love knowing God loves you, us, and blesses our work!

Happy Thanksgiving...I mean "Big Chicken Day!"

Nicholas and Mother’s Day – A gift for ever that he must have seen

I believe Mother’s Day 2009, as every day, is a link to a moment in time providing a loving gift to/from every mother from/to their children and family. Mother’s Day 2006 was a couple of weeks before Nicholas transcended to heaven – that moment in time is when Nicholas reminded us of a Na Hoku jewelry piece that he saw in Hawaii on one of our first trips. (Most of you know Nicholas’ love for Hawaii and water). Na Hoku is Hawaiian for “Stars” and he picked out the Nalani collection that means “The Heavens” – a look as infinite and timeless as the heavens.

So on this Mother’s Day, as every day, I’m so grateful for every mother and every woman who shares their lives with children. I’m grateful for that infinite and timeless love. And for Sheila, I’m so grateful Nicholas is never gone, never far, always in her heart and soul – and vibrantly alive in our lives in so many ways. I thank God that Nicholas knew and knows that God loves him and trust & believe Nicholas is playing and having fun with Jesus. (Do you remember Nicholas playing with the dolphin Hoku Photo Number 10 ?)

This Mother's Day we spent it at Hotel Nikko (yes, Nicholas' nickname)


May 25, 2009

Nicholas' third year in heaven As I sit in the home office of The Nicholas Colby Fund...

  • I’m listening to Hawaiian music and with the window open I hear the sweet sounds of birds chirping (Nicholas loved Hawaii)

  • I’m thinking about Sheila’s perfect love for Nicholas (and our other boys)

  • I see so many beautiful pictures and touches of love (looking out at the pool its glimmering glow reminds me of Nicholas diving in and swimming; and seeing a squirrel scamper about reminds me of Nicholas saying out loud, “Mom, a squirrel is in your plants again!”)

  • I smell the wonderful scent of flowers (Nicholas enjoyed gardening with mom)

  • I feel Nicholas with me (his beautiful smile and warm, loving touch being the perfect little boy that he is).

I’m so grateful to see Nicholas in my dreams and see him in all aspects of my life. Three years ago cancer took his physical life here on earth—it didn’t take away his love or humor during his 1 ½ years living with cancer. He was a beautiful son, the perfect little brother, grandson, nephew, cousin, and friend helping us all to smile then and now.

I thank God for allowing me to know Nicholas touched all who knew him with his dynamic smile and personality. His amazing spirit, energy, enthusiasm, joy, and endless passion for caring about others provided/provides an inspiration for love and life. Everyone blessed to know him, loved him and loves him today; and those blessed to be touched today through an aspect of his love, The Nicholas Colby Fund, loves him today.

Our precious Nicholas, we are so grateful you knew and know God loves you. Remember the moments we would say “Whether I can see you, hear you, or touch you…I just know that you are always in my heart & soul!" There are many blessings we always feel and see knowing you are ever present in our lives and the spirit of the Nicholas Colby Fund – helping children be children. We are blessed believing and trusting through God that you are playing & having fun with Jesus.

You are never gone/never far, forever in our hearts & souls. We love you!

This Easter...so grateful knowing Love is always there

Love is always there and so very clear on Easter knowing that God’s love and Jesus’ touch is ever present. Remember, Nicholas and I would say, “Whether I can see you, hear you, or touch you…I just know that you are always in my heart & soul!"

There are many blessings we always feel and see, knowing Nicholas is ever present in our lives and the guiding light of the Nicholas Colby Fund. We are blessed that Nicholas knew that God loved him, and we are blessed trusting and believing that through God, Nicholas is playing & having fun with Jesus.

Nicholas' 9th birthday and his loving touch is all around us, and guides the Nicholas Colby Fund (2008 recap below)

Today…well it was Nicholas’ 9th birthday with the last 2 ½ years in heaven with God and playing & having fun with Jesus. Tonight…we had a quite, loving, spirited dinner at one of Nicholas’ favorite restaurants – Blue Ginko.

Thank you all for your emails, telephone calls, guestbook messages, and red balloons some of you held for Nicholas – the pictures you shared of this are so beautiful. We miss him so much physically and lovingly enjoy him spiritually. Nicholas is never gone, never far, forever in our hearts and souls. His touch is all around and we are also grateful for the touches of love many of you share with us. Nicholas, aside from his touches of love to us and you, his love guides the Nicholas Colby Fund.

2008 Nicholas Colby Fund Recap:
Awards
A sample of guestbook messages about our work “helping children be children”
Snapshot of events and experiences

Awards
2008 Leukemia & Lymphoma Society inaugural Light The Night Inspiration Award Recipient
2008 22nd Annual National Philanthropy Day Commemorative Award Recipient

A Few 2008 Guestbook Messages From Patients/Parents About The Nicholas Colby Fund:
Stanford-Lucile Packard Children's Hospital

Dear Lamont and Sheila, on the way home from the Warrior game last night, little Haley says from the back seat, "that was my best day ever, I went to a basketball game....and I'm only 6". After the complications Shawn suffered after his heart transplant...to see him down there as honorary captain was the most beautiful experience for this mom. I can't express how grateful I am for last night, for you care and concern over Shawn...and the love you expressed to all of us. It was the best experience.....we will never forget it.

Shawn loved it more than he even thought he would...he still has stars in his eyes....and thinks Sheila hung the stars and moon because she was into the video games! we will think of you all often & keep you in our prayers.

Thank you again for giving Shawn a once in a lifetime experience....after so many months in the hospital.

With love, Trista, Shawn, Haley....and the rest of those Stockwell's :)

On August 15, 2008 when we were in the clinic at Stanford-Lucile Packard Children's Hospital we were pleasantly surprised with tickets from your fund. My daughter really enjoyed the circus on August 16 and it was the first experience from my two little boys.

We have been undergoing treatment for a year now with little effect. Thank you for the wonderful day to take our mind off her illness and enjoy being a kid again.

Deanna Nail-Owen

Thank you so much. Our son Tomas was just diagnosed with ALL Leukemia about a month ago. When he was diagnosed it felt like our lives would never be normal again; and that for his birthday, August 16th, we would end up spending it at home or in a hospital, instead of the way we would have liked, with an outing and a huge party. Thanks to your foundation, we spent his birthday at the circus. This experience was not only something that provided Tomas with great joy, but also helped us, his parents, to see that he could be a normal kid. The experience brought tears to my eyes. We can't begin to tell you how much that day meant to us all. Thank you so very much.

Diego, Jenny, and Tomas

We first want to say, we are very sorry for your lose. It's very sad that our little guys have to go through this stuff. Our Son Matthew, is fighting brain cancer right now and we understand a little of what you went through. We want to thank you for the 49er tickets, we received from Stanford-Lucile Packard Children's Hospital. Our little guy is at Stanford now, getting his 5th round of chemo. We had a great time at the game. It was Matthew, his brother Michael, Matthew's friend Adrian and Matthew's Dad.

I hope you guys find time to reflect on all the good memories you have of Nicholas, it's one of things that can never be taken from us. Thanks for all you guys do, for others like us.

The McCullough's

 

Children's Hospital Oakland

Thank you so much for the fabulous gift back pack! We are moved not only by its generosity but how thoughtfully chosen each item is. It is perfect for our son Zach, who is one year old and hospitalized at CHO for acute myeloid leukemia. We also were thrilled with our visit from the harpists--you are doing wonderful, wonderful work.

Julie, Ben, and Zachary

Thank you for inviting Kyle to the Warrior's Clinic. Kyle had such a great time and so did I! It was the first time Kyle left school early and DIDN'T have to have any kind of medical treatment. It was also the first time Kyle had played basketball since the day he was diagnosed over a year ago. He thought it was really cool to meet Monte Ellis and Thunder. Thanks so much for having such a great event where kids can be kids!"

Jeff, Esther, and Kyle Lane

Thanks again for the Warriors Basketball Clinic. You've made it possible to have another lasting memory for Troy and I. We really enjoyed ourselves. Yes...we finally were able to meet Monte Ellis. It was very exciting. Troy really had a work out that day. He actually fell asleep on the way home.

Love, Carrie and Troy

 

UCSF - Children's Hospital

Dear Lamont and Sheila,

I will like to take this time to Thank you both for a wonderful night at the Warrior Game 12/12/08. We had a really good time! Trevon really enjoy the tour, the game and the gifts :-). You guys are wonderful and keep up the good work to making kids (Teens) happy.

Barbara and Trevon Johnson

I was fortunate enough to have the tickets to the Warriors game last night offered to me from the wonderful people at UCSF pediatric clinic where I have been being treated for Neuroblastoma. A close friend and my parents and I enjoyed the game against the team from Lithuania. I am a huge Warriors fan and love watching live basketball. My family and I have had a great deal of stress and frustration lately with treatments and insurance issues. Thanks to your kindhearted donation I was able to forget about cancer and all that I have been going through for a night to be with loved ones doing something I really enjoy. Thank you so much for your donation; it really meant a lot.

Zach Swan

Last week we were given tickets to the circus...my son has been really sick these last couple of months and he hasn't been able to go anywhere or be a normal four-year old and just play and be a kid. He was just released from UCSF after being in for six weeks after having brain surgery. It just felt really good to see him enjoy his self and be a kid again. We still have a long road ahead of us but its great to have foundations like these that can allow kids with cancer to still be able to be a kid and enjoy them self. So with all that being said me and my family just want to thank you from the bottom of our hearts.

Sharonda Payton

 

Recap of 2008 Events & Experiences:

  • Backpacks for patients diagnosed with cancer

  • Nutritional Packs for parents/guardians in the pediatric intensive care unit

  • Disney on Ice, Sesame Street Live, Ringling Brothers and Barnum & Bailey Circus, Harlem Globetrotters, and more

  • Basketball Clinics with the Golden State Warriors

  • Exclusive pre-game tour of Oracle Arena, on-court opportunities including honorary captain, and post-game holiday event with the

  • Golden State Warriors Golden State Warriors professional basketball games and San Francisco 49ers professional football games

  • Harp experiences

  • Patient Gift Giving Experience

  • Thanksgiving Day dinners

  • And more...

Complete information about these events & experiences is on the Nicholas Colby Fund website ( click here )

December 8, 2008

Halloween…the fun, smiles, costumes, laughter, and memories

Today is a day to celebrate an occasion that brings the kid out in all of us. At work, school, and home everyone seems to get into the spirit of just being a kid – “playing and having fun” as we called these types of days with Nicholas. Costumes…Nicholas loved to put on costumes and as many of you may remember he would sometimes wear multiple costumes over the Halloween days. In fact, Nicholas often created his own costumes and wore them on various days throughout the year. Remember the “Spy Kids” costume he created? (click here to see the picture) The picture is image 48 of Album 3, under About Nicholas > Nicholas In Pictures.

While it has been three months since I last wrote a journal, everyday is another on this journey of reflecting, remembering, and retaining the amazing gifts of love that Nicholas gave & gives to us everyday. In some ways, the journals are seen in the work of the Nicholas Colby Fund seen throughout this website, including the Event Calendar under Events / Experiences. It’s Nicholas’ loving touch and spirit that guides all the Fund creates!

We continue to be so thankful for all the love and help many of you provide to us and The Nicholas Colby Fund. We still receive wonderful touches of love at Nicholas’ Oakmont Memorial Park site. This week for Halloween, someone placed a ceramic pumpkin with a goblin-like figure on top with “Nikko” written on the goblin’s shirt.

It’s been nearly 2 ½ years since Nicholas has been in heaven, and 2 ½ years of Nicholas “playing and having fun” with Jesus. We are blessed knowing that Nicholas in never gone, never far…forever in our hearts & souls. Remember, well before Nicholas even got sick we had a shared understanding that whether we could see each other, touch each other, speak to each other, etc., we just know that we would always be in each other’s heart and soul! Thank you, Lord!


December 25, 2008

Hearts beating, memories surfacing, Christmas reminding...

...reminding us of God's constant love enabling Nicholas to be so very present in our lives. Tonight on Christmas Eve we watched Dr. Seuss' How The Grinch Stole Christmas and it gave us a continuous flow of Nicholas' love as we recalled so many scenes of the movie that Nicholas enjoyed "acting out." Nicholas was an amazing actor, citing the lines and displaying the body language & expressions congruent with the scenes.

Our hearts were beating with anxiety knowing we were going to experience another Christmas without Nicholas' physical presence, and the anxiety of having our hearts beating with love. We are blessed with memories that fill our lives in poignant loving ways. And on Christmas we think of the notion and words, "I wish it could be Christmas all year long..." because of the love expressed everywhere throughout the world during the holiday season. We think about this notion for another reason as well, because of the Nicholas Colby Fund and our work of "helping children be children" all year long.

Yesterday (Christmas Eve) we held our third consecutive Patient Gift Giving Experience and the smiles & loving tears from young patients and older patients in the children's hospital as they selected gifts was perfect and pure. Seeing and hearing them express thanks for enabling them to choose gifts for each of their siblings was heartfelt and lovingly emotional.

During Nicholas' leukemia journey we often talked about love begetting love referring to the incredible support from family, friends, AAA, and a host of others we met along the way. Of course, God and Nicholas' love was the catalyst creating the love... And now, love begetting love is so very much alive throughout the Nicholas Colby Fund. For example, if you look at the December 2008 Event Calendar (click here ) you will see collaboration with a Lamorinda Soccer Club team, a Moraga private school, and a Hispanic Chamber of Commerce creating and delivering events resulting in tons of toys for our Patient Gift Giving Experience as well as our backpacks for newly diagnosed cancer patients.

Love has everything to do with our lives, our hopes, our dreams, and our gratitude that Nicholas is so very present...and on Christmas as every day we believe in our hearts & souls that it is Christmas all year long.

July 13, 2008

Transforming experiences in the pediatric cancer community

In our May 17, 2008 blog we talked about something special being guided by Nicholas and two other boys (Matthew and Ben) in heaven. Along with Sheila and me, Ely & Gigi (Matthew's parents) and John & Christine (Ben's parents) have come together forming an alliance that will transform experiences in the pediatric cancer community. And last night at the San Jose Fairmont hotel we had a meeting with the Lance Armstrong Foundation talking with its president and other executives.

It's clear from our meetings last night that our alliance and the Lance Armstrong Foundation will transform experiences in the pediatric cancer community. Please stay tuned as we begin to unveil a vision and collaboration of advocacy, knowledge, and alliances that also continue the uplifting of spirits via The Nicholas Colby Fund's events/experiences "helping children be children."


July 22, 2008

Harmony from harp experiences, and kids 4-18 years old helping children be children via a Swim-A-Thon

Harp performances. Today, four young girls performed on the harp at Children's Hospital Oakland via The Nicholas Colby Fund. They performed Disney and other children's songs from stories such as Winnie the Pooh, Snow White, The Little Mermaid, and much more. The young patients, their parents, and the medical staff all enjoyed the performance in a concert setting. The performers also took the harp bedside playing for patients who were unable to leave their rooms. (You can read more about this experience provided for children by clicking on What We Do > Collaborating to Deliver More > Harp in the Hospital.)

One mother joyfully cried as her daughter experienced the harmonious sounds. And a little boy fell asleep in his grandfather's arms to the soothing, loving music.

Swim-A-Thon. The Orinda Country Club selected The Nicholas Colby Fund to be the benefactor of their 2008 Swim-A-Thon. We are grateful for their Board's support of children through the children's hospitals we collaborate with, and thankful for the swimmers' commitment & dedication to make a big "splash" toward "helping children be children."

Yesterday, the swimmers age 4-18 took to the water and swam for children with cancer. (You can see them by clicking onto What We Do > Events / Experiences > Experiences in Pictures > Nicholas Colby Fund 3rd Quarter 2008.) Following are quotes from two of the swimmers:

Elizabeth said, "This sort of program is not only donating money, but you have to give part of yourself by swimming. It's nice to know that all of our hard work is going to benefit children who deserve it."

Kyle said, "I love swimming as a sport, but it makes me even happier to swim for children who are less fortunate. I feel special that I was part of this."

And a heartwarming surprise was young swimmers that went to school with Nicholas, and a student who was a babysitter of a friend and this young girl followed Nicholas' journey then and now. Bittersweet...and we continually trust and believe in God's love.

Fathers remembering and remembered...

This Father's Day morning I was greeted with love from my wife; my sons; family; friends; and even strangers when I was sitting at Nicholas' Oakmont Memorial Park site. There were voice mail messages, text messages, and surprises at our front door. Every expression of love today tenderly touches my heart. And every expression of love is part of my life - thank you.

At our front door was a "Father And Son" figurine from Nicholas' teacher (Ms. Shirley). Along with the figurine was a card from another teacher at Nicholas' former Montessori school. It was a card about a moment with Nicholas at school and today Ms. Shirley said the card belongs to me, too. The card has a butterfly on the front and the hand-written message reads: "Many times you passed thru my classroom sporting that great smile of yours and always saying "Hi" to me. One day I was walking down the hallway and there you were in the bathroom on the potty. I doubled back to say Hi to you. You said "Hi" and gave me a smile that touched my heart. That was a moment I will never forget. Thanks Nicholas for that Special Remembrance."

At Nicholas' Oakmont Memorial Park site, while I was sitting and thinking of Nicholas (you, son) a lady walked up and began talking about Nicholas' presence. Instantly, the thought of "never gone, never far, forever in our hearts & souls" was once again a reality.

As I think about my sons' here on earth and their physical connection with me and Nicholas' heavenly connection, there are constant reminders that love is waiting for each of us every moment of our lives. Simple smiles from family, friends, and even strangers are moments treasured. And if it's hard to believe that a simple smile (and/or "Hi") is treasured...think about not being able to smile with someone or say hi. I am blessed this Father's Day to have a heavenly Father that loves in the midst of my pain. I am blessed to have Nicholas with me and me being with him through our Father. I am blessed to have a wife that is so compassionate and loving. I am blessed to have sons that care and share a love that for us is so heavenly. I am blessed to have all of you in my life and me being able to be in yours.

I'm smiling and saying "Hi" and I "just know" that Nicholas is too!

A Nicholas Colby Fund Note: Last night we hosted Stanford-Lucile Packard Children's Hospital in our suite to enjoy The World Famous Lipiszanner Stallions. It was also a collaborative experience provided to the patients via our relationship with The Matthew Tsern Memorial Fund (MTMF). The MTMF purchased food and souvenirs for the patients. To see pictures please go to The Nicholas Colby Fund 2nd Quarter 2008 photo album under What We Do > Events/Experiences > Experiences In Pictures. Friday night patients from Children's Hospital Oakland and UCSF-Children's Hospital were our guests. Next week patients from all three hospitals will be our guests to enjoy Sesame Street Live.

May 3, 2008

Images of love - another time of remembrance and the comfort of connections with families

In 22 days it will be two years that Nicholas has been in Heaven (May 25). Today I attended a "Time of Remembrance" at Stanford-Lucile Packard Children's Hospital. Like April 27 when we attended "A Day for Remembrance" at Children's Hospital Oakland, there were parents who have lost a child as well as other family members and nurses & doctors. There was conversation, music, remembrances shared, and images of love that were the pictures of the children now in Heaven.

There were parents whose children had participated in Nicholas Colby Fund events/experiences. There were parents whose child shared the joy of Yu-Gi-Oh cards with Nicholas while they were in the hospital together. Along with the images of love (the children in Heaven), the conversations were all about love. I am so grateful for God's love allowing me to trust and believe and "just know" that Nicholas is more than okay. And I am so grateful that today, I talked with Nicholas' nurses and doctors as well as parents that uplifted my spirits as we shared the joy and love of our precious children that are never gone, never far.

QUIET, PLANNING PHASE. The April 27 and today's remembrance come at a time when The Nicholas Colby Fund is in what we call a quiet, planning phase. This is the time that we reflect on our past events/experiences and plan for the series of upcoming ones. Looking back on the calendar on this website you will see continuous months of events/experiences delivering smiles and uplifting spirits "helping children be children."

CONTINUANCE OF OUR SPECIAL "PACKS." So while the next couple of months are "quiet" as we plan, please stay with us as we prepare to continue doing all that we do and more. Of course, what is always delivered throughout each month are our backpacks for newly diagnosed children with cancer, and our nutritional packs for parents/guardians of children who have to go into the Pediatric Intensive Care Unit.


May 17, 2008

They are smiling

Referring to the April 29 journal, today we spent the morning and early afternoon with Matthew's parents. We visited Matthew's spot and then went into town (Los Gatos/Palo Alto) to have lunch with his parents. Lovingly, the place they chose happened to be a small restaurant called Cafe Brioche we took Nicholas to before the leukemia. Amazing!

The wonder of God's love creates smiles in the midst of our broken hearts and souls. And, like we will always experience with Nicholas, we "just know" that we are in each other's heart and soul and feel blessed to have love in every layer of our lives. The sharing of stories, moments, and love about our boys - Nicholas and Matthew - was a gift. And there is a third boy - Benjamin - that was in our conversations. We see these three boys playing & having fun...smiling...and providing gifts in ways that create smiles blessing the lives of others.

These three boys are guiding something very, very special and the complete gift that they are providing is coming into view. We'll share more about their shared gift in the coming weeks. Next week we'll be spending more time with Benjamin's parents and soon after I plan on the six of us parents engaging together...as our boys are engaging...following Nicholas, Matthew, and Benjamin's lead of love begetting love.

April 7, 2008

Warriors' basketball star Monta Ellis played with children from the Nicholas Colby Fund

Today was our inaugural "Nicholas Colby Fund Basketball Clinic" with the Golden State Warriors at their Practice Facility. The Facility where the Warriors had just practiced on...was filled with patients from Stanford-Lucile Packard Children's Hospital, Children's Hospital Oakland, and UC San Francisco-Children's Hospital. This experience was made possible because of the Golden State Warriors' organization and Nicholas.

While this special event was planned out well in advance there were a couple things we were keeping as a surprise. The surprise was Monta Ellis, one of the stars on the Warriors. After the patients all received Warriors' jerseys to wear and keep, their parents or guardians received "The City" shirts, they all made their way to the courts. Parents as well as the patients were looking around at all of the history on the walls about the Warriors. They were looking at the bright lights, the colorful golden floor, and Warriors representatives all in position to create a great time out for them.

While the patients were engaging with the Warriors basketball camp staff (who too captured their attention), Monta made his way onto the Practice Facility floor. Many parents quickly grabbed their cameras and as Monta went to the kids, the kids seemed to smile even brighter. First, they were being treated like the stars that they are...and then they had this basketball star (Monta) come out to play with them.

We are so grateful for the love for Nicholas that the entire Warriors organization continuously shows to the Nicholas Colby Fund. We were blessed that Coach Silas came out to engage with the kids and for Thunder to help the kids laugh and smile. (Thunder is the Warriors mascot and the same person who came to our home and played with Nicholas. And the same Thunder who was the MC at Nicholas' Celebration of Life .)

There were lots of prizes and authographed items for everyone as well. And there were lots of photos with the Warriors and autographs written on just about everything. Monta was very accommodating, Coach Silas was patient and fun, and Thunder was being Thunder entertaining everyone. Thank you Warriors! (Pictures are on the Nicholas Colby Fund 2nd Quarter 2008 photo album under What We Do > Events/ Experiences > Experiences In Pictures)

Today was a good day for these kids...and we are so happy to collaborate with the Warriors toward Helping Children Be Children. After all of the hoopla and excitement in the air, and after the kids left telling their stories of what they enjoyed the most, Sheila and I packed things up with the Warriors and four of our volunteers. By the way, thank you Nicholas Colby Fund volunteers: Allie E, Katie B, Meg M, and Erin C. You were wonderful! And then, Sheila and I quietly left and went to Fenton's Ice Creamery in Piedmont. Nicholas loved going there for ice cream so we went there to be with him in another way that we can...


April 8, 2008

Video of yesterday's Nicholas Colby Fund Basketball Clinic to be shown tonight at halftime of the Warriors' game

This morning I received the following message about the Warriors' game tonight:

"Lamont, I wanted to let you know that for tonight's game, the Nicholas Colby Fund Basketball Clinic will be the "Community Spotlight" feature which will be shown during half-time on the scoreboard. It will be a minute-long video recap that will be accompanied with a brief read on the event."

- Golden State Warriors


April 9, 2008

Golden State Warriors place photo gallery of Nicholas Colby Fund B-ball Clinic on their website

After last night's half-time video presentation during the Warriors game at Oracle Arena, the Warriors informed me that they placed images and messages about our basketball clinic on their website.

Here is the link: http://www.nba.com/photogallery/gallery_popupThumb.html?sitestart=NBA&xmlfile=/warriors/gallery/Monta_Silas_NCF_040708.xml&teamHeader=Warriors

 Following are the messages the Warriors placed with the images

On April 7, the Warriors hosted the Nicholas Colby Fund Basketball Clinic with Stephen Silas and Monta Ellis at the Warriors Practice Facility.

The clinic was held for children of the Nicholas Colby Fund and their parents.

The Nicholas Colby Fund focuses on 'Helping Children be Children' by creating memories and experiences...

...that uplift the spirit of kids diagnosed with cancer, a degenerating condition or another life-threatening illness.

Upon signing in, the clinic participants were fitted with a jersey and their parents received a Warriors T-shirt.

During the clinic, Warriors guard Monta Ellis ran the kids through several drills...

...as did Warriors Assistant Coach Stephen Silas.

Thunder was also there to lend a helping hand to the clinic participants.

A total of 25 kids from the Stanford-Lucile Packard Children's Hospital, Children's Hospital Oakland and UCSF-Children's Hospital participated in the clinic...

...and they each had A Great Time Out hooping it up with the Warriors.

In addition to the basketball clinic, the kids were treated to a Q&A with Monta and Stephen...

...and those who answered the questions correctly received Warriors prizes.

Following the clinic, the participants were able to get autographs and pose for pictures with some of their favorite Warriors.

The Warriors thank the Nicholas Colby Fund staff for allowing the team to put on this event for such a deserving group of kids.

And the Warriors also thank the kids from the Nicholas Colby Fund for attending and wish them the best.


April 17, 2008

Results of local newspaper story reveal the continuance of love-begetting-love

Yesterday (Wednesday) the Lafayette Today newspaper was delivered to all Lafayette households. It had a cover page story about Nicholas and his legacy, The Nicholas Colby Fund. During Nicholas' leukemia journey we often talked about love-begetting-love and the circle-of-love to describe the wonderful, warm actions of many people who helped some of the ups and downs seem a little smoother. Even if the actions provided just a loving touch letting us know that someone else was there thinking about Nicholas and the heart-wrenching journey.

As a result of the newspaper story, yesterday and today we have received several emails sent to our info@nicholascolbyfund.org email address. There have been local businesses such as Papyrus of Lafayette and individual adults asking how they could help (with donations) toward our work of "helping children be children." And it has been equally so nice to receive emails from Acalanes high school students wanting to volunteer their time to The Nicholas Colby Fund. One student happens to know Nicholas and his email brought a loving smile to our faces and hearts.

Several high school and college students have been helping with our events/experiences. Some of them approached us toward helping them volunteer at the children's hospitals. And a couple of them have turned to the medical field to be their choice of study.

It is amazing to experience love-begetting-love and we trust & believe Nicholas is smiling too!


April 27, 2008

Gift of a child - another time of remembrance with others

Next month it will be two years that Nicholas has been in Heaven (May 25). Today, Sheila and I were at Children's Hospital Oakland Research Institute for our second participation in "A Day for Remembrance." There were parents who have lost a child as well as nurses and doctors. Live harp music played creating an angelic atmosphere to go along with a slide show of pictures of the children who are now in Heaven. Stories of the children were shared and a few of the children were benefactors of the Nicholas Colby Fund through our events/experiences.

Parents and medical staff told us stories of Nicholas Colby Fund events that the children enjoyed so much. There was a story of a boy who after a Warriors game took pictures with the cheerleaders to tease his dad. There were stories of children still living; one story is of a child who recently received a Nicholas Colby Fund backpack and how he uses it to hold pictures of his family. Remember A Book Called, The Next Place, By Warren Hanson that was read to Nicholas on May 25, 2006? A warm surprise was hearing it read today as part of the remembrance for all!

Today we cried a little more and felt Nicholas' love little more. We are so grateful for the "Gift of a child" knowing, as we all shared today, "We are who we are today because we have had a child whom we have loved. We are what we are because we have loved a child who has also loved us."

Right now we are sitting in the backyard near the pool. The sky is so beautiful, the gentle wind caressing our face, and with the warmth of Nicholas so very much alive in our hearts and souls. In the background we are playing a Hawaiian CD that we often played when we were in the pool with Nicholas...playing and having fun. Remember the song, Oh Dolphin, we talked about several times throughout the journal entries? Remember Nicholas' love for the water, for dolphins? Remember Nicholas playing and having fun with Hoku the dolphin in Hawaii? We remember everything and we are grateful for God's love as we trust and believe Nicholas remembers everything and time has heavenly stood still allowing Nicholas to simply be overjoyed with love all around him.

Next Sunday we will participate in a "Time of Remembrance" by Stanford-Lucile Packard Children's Hospital.


April 29, 2008

Comfort and love in a new way today

Today a mom and dad of a sweet, precious boy named Matthew who is in Heaven with Nicholas came for a visit. We visited Nicholas' spot, ate at one of Nicholas' favorite restaurants (Blue Ginko), and had conversations that touched our hearts & souls in ways that...well seemingly seem heavenly.

Maybe it was the anticipation of personally connecting with this couple again in hopes that it, in someway, would allow us another touch from Nicholas through his heavenly connection with Matthew. And maybe it was just "love begetting love" as we have often expressed.

The Tserns left Nicholas a loving plaque - Tranquility - that in itself lifted our spirits as we visualize Nicholas and Matthew heavenly soaring so freely and happy!

Next month we will visit the Tserns, Matthew's spot, and hopefully continue to experience the comfort, love, and touch of tranquility our relationship generates. Nicholas and Matthew, thank you for loving us as we all love you so very, very much!

Nicholas Colby Fund and AAA volunteers rally in memory of Nicholas; and an Easter story

Many of you have asked how was the March 14-16, 2008 Camp Okizu event so this journal entry tells that story via a story that ran this past week on our companies website called Passport (AAA of Northern California, Nevada, and Utah). Following is the story (and pictures are in the Nicholas Colby Fund 1st Quarter 2008 photo album, under What We Do > Events / Experiences).

Editor's note: Last weekend a group of AAA volunteers spent two days clearing trails; reparing fences; and cutting, placing, and sanding outdoor amphitheater benches at Camp Okizu, a Northern California summer camp for children with cancer. The outing was organized by AAA's Lamont Gilbert, a 28-year employee. Passport asked him to share his story with employees.

I still remember the night Nicholas was diagnosed with leukemia. With tears flowing from my wife's eyes, I tightly held onto Nicholas and Sheila, trying to grasp what was happening while at the same time trying to provide comfort and love.

Without any words to Nicholas about the heart-and-body wrenching news we just heard, our beautiful 4 1/2 year old son said, "Don't worry about me, I'll be alright!" The unthinkable thing to a parent happened to us that night and again 1 1/2 years later when Nicholas' battle with cancer physically took him from us.

Nicholas was blessed to be surrounded by so many friends of all ages - even before the diagnosis - and truly enjoyed all that life and more importantly, love, offers. And there were times Nicholas said, "I just want to be a normal kid." So creating opportunities for children with cancer to feel normal is why Sheila and I established The Nicholas Colby Fund, to create events and experiences that help children with cancer have treasured moments.

Helping children be children

Because of God's gift of Nicholas, Sheila and I are devoting our lives to help more children experience the treasures of childhood. It's a way for us to continually "care for" Nicholas and in return our hearts are massaged, if ever so slightly, while helping us help children be children.

Camping is a simple pleasure that many children without cancer don't ever experience. Sheila and I came up with the idea to work with Camp Okizu after participating in a bereavement camp there. I then organized an event that would bring together Nicholas Colby Fund volunteers with AAA employee volunteers.

When Nicholas was first diagnosed, everyone at all levels of AAA called, asking what they could do. They showed up at the hospitals. They brought food to us. This is who we (AAA and its employees) really are. Now as we carry out Nicholas' legacy they've come through again.

Our Easter story

As we decorated for Easter at Nicholas' site today at Oakmont Memoria Park in Lafayette, I though alot about a message a colleague gave me last week. I often talk about being a man focused on doing the "right" things so I will be able to see and be with Nicholas again. The message was a very present reminder of God's love. Here is the message:

We will see him again, when our work is done hear on earth. Easter reminds us of God's great promise; our time here on earth is just a blink of an eye, and glorious days, with our Heavenly Father and loved ones who have gone before us await us.

I'm so thankful that Nicholas knew (and knows) that whether or not we could see each other, hear each other, touch each other, etc., we talked about always being in each other's heart and soul. And these talks were before the leukemia diagnosis as well as during the leukemia battle. We often said, "We just know!" And we always talked and prayed about our faith, trust, and belief in God's love.

February 9, 2008

Nicholas’ birthday is Sunday…and his love because of God’s love is daily experienced

Note: This journal was written on January 25, 2008 and the February 9 date is because of an update providing a link to the 1st Quarter 2008 photo album.

This coming Sunday (January 27) would be Nicholas’ 8th birthday. And, today, Nicholas has been in Heaven for 1 year & 8 months! You know Nicholas’ passion for the Warriors…so we will celebrate Nicholas and everything about our precious son, your relative, your friend, at the Warriors’ game that evening. Some of the patients and their family from Bay Area children’s hospitals who knew Nicholas will join us. And the Warriors will deliver a half-time tribute to Nicholas (as they did last year when there was a Warriors’ game on his first birthday in Heaven).

Every single day we think about Nicholas, we talk (and pray) to Nicholas, we feel his love, and hear his words that were angelic before and now are angelic alongside God’s whisper that—truly—radiates throughout our hearts & souls. Trusting and believing God’s love, we constantly do everything we can and in everyway to reach out to you, Nicholas. Like our presence with God…our reach to you does not come back empty. Thank you for constantly loving us, son! You are with us and we love you so, so much. Our tears are because having you in our lives was, and is, perfect! In some ways the tears are perfect tears reflecting a love that is perfect & pure.

Everyday we celebrate you, son, and with every heartbeat we feel love even though there is heartache. The pain because of the heartache does not go away, however, knowing your love will never go away, unquestionably, keeps us nearer to God. And as you know seeing and being around God, just being near Him you experience nothing except love…

A Nicholas Colby Fund perspective for today: a patient from Stanford-Lucile Packard Children’s Hospital will be our guests at the Warriors game Sunday, sitting in seats on the court alongside the visiting New York Knicks.

Please click on Nicholas Colby Fund 1st Quarter 2008 to see pictures from the January 27, 2008 remembrance of Nicholas at the Warriors' game.


February 24, 2008

Nicholas and love begetting love

We are so grateful to KNOW that Nicholas knew he was loved! He was loved by us, you, and as we always have known—God. The actions with The Nicholas Colby Fund that we continue to take are actions of love, because of Nicholas' amazing love.

Relationships we continue to establish and partnerships forming as well as strengthened are because of love. Moment-by-moment Nicholas shared love as much as he clearly felt loved! So, it is no wonder that we now have a relationship with an organization called, Moment by Moment. Moment by Moment is an organization of professional photographers who provide portraits of families of children with a life-limiting illness (at no cost to the family). You can read more about Moment by Moment by clicking onto What We Do > Collaborating To Deliver More… > Moment by Moment – Portraits Taken Of Patients.

Love begetting love continues in so many beautiful ways and every single time we see & feel Nicholas. Just like the back packs that we are now providing to newly diagnosed patients with cancer. You can read more about these backpacks by clicking onto What We Do > Special “Packs” > Back Packs.

And following is an example of the circle of love we often experience. It is about a new-found friend and her actions of love toward us, Nicholas, and The Nicholas Colby Fund as it relates to the backpacks:

"I met Lamont while working on a Vision & Values project at CSAA (AAA of Northern California) and was immediately impressed with his commitment to building a values-oriented company. Even better, he and his family live in the small town where I live. When I heard his son, Nicholas, had leukemia I could only imagine how their family would handle such a difficult situation. "

Through (their website) and friends at CSAA, I followed their journey. It was a combination of inspiring highs—the wonderful bone marrow donor, the gift of another year with Nicholas—and horrible lows culminating in Nicholas' passing.

"Through it all, Nicholas was brave and kind of funny. Lamont, Sheila, and their other sons showed how love and faith can carry people through devastating times. I felt blessed to have witnessed their journey and wanted to do something to support their family. Since Nicholas' kindness and loving spirit live on through The Nicholas Colby Fund, and because he loved to read, a donation of books seemed like the right thing to do.

"I picked a combination of Nicholas' favorites and our family favorites. I hope these books will carry Nicholas' spirit to other children who face terminal illnesses. I'd also like to thank the Lafayette Bookstore for giving discounts on the books and donating Harry Potter bookmarks for the children."

— Louanne Klein and family

As life goes on, and we breathe and focus on love, we live—too—trusting and believing God’s love that He preciously holds Nicholas…and keeps us with Nicholas at all times.


February 20, 2008

We say it a lot, because we feel it a lot—Love

Tonight we had an opportunity to have dinner with a new partner, Moment by Moment. We spent time talking with Karen and her husband Scott about life. Times with family, friends, children we meet along our new paths, current events, times gone by, there boys, our boys, fun things, sad things, and overall life with love sprinkled everywhere. We talked about Nicholas and his love that blesses our lives every day. And, inside as well as outside, dealt with the pain of not physically seeing our precious son. While reflecting back on every aspect of his life, we feel and know how lucky we were and are to have Nicholas’ love.

Most of you know that the Golden State Warriors professional basketball organization was meaningful to Nicholas before the leukemia journey—well, Thunder (the Warriors mascot) was certainly meaningful to him. And most of you know that the Warriors collaborate with The Nicholas Colby Fund on a variety of events and experiences that we provide for patients from several children’s hospitals. Well, there is now a branded event with the Warriors called the “Nicholas Colby Fund Basketball Clinic” and the inaugural clinic will be held April 7, 2008.

EVENT: “Nicholas Colby Fund Basketball Clinic” with the Golden State Warriors

DESCRIPTION: Golden State Warriors professional basketball and The Nicholas Colby Fund activity at the Warriors Practice Facility.

Patients from Stanford-Lucile Packard Children’s Hospital and Children’s Hospital Oakland will be guests of The Nicholas Colby Fund…each patient and one of their parents will be treated to an afternoon like a basketball star. Most patients will arrive via special transportation with lots of “hoopla” and enjoy a basketball clinic designed just for them.

Nicholas’ love and the love of the Warriors’ organization for Nicholas are amazing…generating amazing things like this experience for children.

OTHER EVENTS AND EXPERIENCES: This new event is a beautiful addition to the many things we do such as the Nutritional Packs provided to parents or guardians in the pediatric intensive care unit, Back Packs that we are now starting for newly diagnosed cancer patients, and the array of events / experiences captured under What We Do > Events / Experiences.

As busy as life is, we find that love is never too busy, too tired, too anything except “love.” And we thank God for love!

December 4, 2007

We are blessed to experience the spirit of “caring” all year long…a gift to us provided a gift to a child

Today, The Nicholas Colby Fund received a gift toward our work of “Helping Children Be Children”. And the gift immediately provided a timely surprise for a patient (family of three) from the University of California San Francisco-Children’s Hospital. This patient and family, via this gift, will be guests of The Nicholas Colby Fund as they spend time together on December 13 enjoying Cirque Du Soleil at AT&T Park under the Grand Chapiteau. Three front row seats and an added surprise to help them purchase souvenirs are intended to help them smile a little more.

It is so inspiring to see smiles on the faces of the children and their families who have not had many recent opportunities to smile. And we are blessed to have Nicholas’ continuous touch and reach into the children’s hospitals creating a circle of love. As in this case, the generosity of an individual and AAA of Northern California believing in the continued work of The Nicholas Colby Fund helped us to create another circle of love. (You can see other opportunities generating smiles on the faces of children by clicking onto What We Do > Events/Experiences > Upcoming Events, that lead you into the calendar toward the bottom of the page. Also, click onto What We Do > Events/Experiences > Experiences in Pictures, to see the many experiences through flyers and other pictures.)

This show features KOOZA. “KOOZA is a return to the origins of Cirque Du Soleil. It combines two circus traditions – acrobatic performance and the art of clowning. The show highlights the physical demand of human performance in all its splendor and fragility, presented in a colorful mélange that emphasizes bold slapstick humor.”


December 16, 2007

It was difficult to decorate for the holidays, however, blessings have come our way

On Christmas this year, December 25, 2007, it will be 1 year and 7 months that Nicholas has been in Heaven. Nicholas (many of you will remember) enjoyed Christmas, all holidays, and really every chance to engage with people and the world. He, truly, enhanced the world in amazing ways that—thankfully—still touch our lives as we engage the world today in the ways that we do. Whether we are home, around town, talking with people across the United States…Nicholas' touch is everywhere.

While we are thankful for these beautiful touches of love, it is bittersweet not “physically” having Nicholas with us. As we cry…missing Nicholas so, so much, we cry out to God trusting His love. We do smile knowing that Nicholas is in God’s hands and playing & having fun with Jesus. And we think about “God’s speed” helping us to trust and believe God’s love that allows us to feel that Nicholas is away with God…what a blessing to know. To Nicholas…he feels that he has only been away from us for just moments. Like he is at school, playing with family & friends, taking a nap. And we pray, thanking God for helping us to know that Nicholas is never gone, never far…forever in our hearts & souls!

So as these holidays bring tears to our eyes and sadness to our hearts because we physically miss Nicholas, we are thankful for God’s love that blesses our lives. And sometimes it is still so very hard doing just about anything! We have been struggling with these holidays, yet found many moments of reflection & joy today as we completed the Christmas decorations at Nicholas’ Oakmont Memorial Park site…and decorations at home on the outside and inside. (You can see some of these decorations on the Nicholas Colby Fund 4th Quarter 2007 photo album, under What We Do > Events/Experiences > Experiences in Pictures.)

Nicholas, my son, I see you, I hear you, I taste and smell your loving scent, and I feel your loving touch as we decorated today with your brothers and knowing that you are with us…and that you are happily with God and playing & having fun with Jesus! We love you so, so very much son. But you know this because, thankfully, we talked about how we would always “just know…”


 December 26, 2007

Christmas morning...and the day & night was focused on love

Throughout Nicholas’ leukemia journey we not only focused on love, love was at the start, middle, and forever will be at the end of each day. We often wrote on these journals about trusting & believing God’s love! Nicholas always trusted God’s love as much as a child trusts their parents to love them. We constantly think about this fact because while Nicholas is not physically with us, he is with God and playing with Jesus…for us it is the grandest graduation and the perfect-pure destination one could only hope to embrace.

We are so grateful God smiles on us and that Love surrounds our lives in its omnipotent, omniscient, and omnipresent ways that are perfect and pure. Even when it is just so very, very hard to understand…in terms of questions like Nicholas’ friend Hana wrote. Remember, when she wrote a school paper about Nicholas? The theme was about “wondering why…” So as we wonder why, we also wonder about the perfect and pure joy that surrounds Nicholas. We think about Nicholas saying, mom, dad, brothers, family, and friends…if you could see me now you would not ever want me to leave this perfect place. A couple other notes about Christmas this year:

1. Remember Nicholas sure did enjoy the movie, Dr. Seuss’ How the Grinch Stole Christmas, with Jim Carrey. Remember how we wrote about Nicholas being able to act and perform many of the scenes? Christmas night Sheila and I watched this movie again.

2. We were greeted by a few surprises Christmas morning at Nicholas’ Oakmont Memorial Park site. One surprise was a card left on the flat memorial marker and following are the words on the card. “And love said, wherever you look you will find me; I will shine my light upon your heart…you are in our prayers.” Another surprise was a picture-frame ornament that had a picture of Nicholas. We are always amazed and our hearts warmed by “love begetting love” as the expressions and actions of Nicholas and all of you generate a love that touches and brightens lives in meaningful ways—not just our lives.

3. The Patient Gift Giving Experience was a success (please refer to What We Do > Events/Experiences > Upcoming Events, and go to December 24, 2007 on the calendar). The Nicholas Colby Fund was able to provide gifts to 21 children that were in-patient. Because the theme above has been about “remembering” here it goes again. Remember, the patients get to select a gift for each of their siblings so that the patient can enjoy the gift of giving by giving a gift to each of their brothers and sisters.

November 13, 2007

Now that this new website is live, following is information intended to help you better navigate it to thoroughly experience all of the content. We hope Nicholas' logo with our red signature balloon against the blue sky uplifts your days and nights...

NAVIGATION INFORMATION:

1) The main menu bar: Welcome, About Us, About Nicholas, What We Do, Donate, Participate, Contact Us

2) There are sub-menu bars after selecting About Us, About Nicholas

3) There are drop down menu items to select when scrolling over What We Do, Participate

4) You will go directly to the respective content when you select Donate, Contact Us

5) About Us, About Nicholas, in addition to its sub-menu items there are drop down menu items

6) That for the drop down menu items for ABOUT US three of the drop down menu items ("Celebrating Life," "Nicholas' Memorial Service and Celebration of Life," and "Sound Tracks") and drop down menu items for PARTICIPATE two of the drop down menu items (Journal, Guestbook), each have respective side menu item selections

SPECIAL NOTES:

5a) After Selecting About Nicholas, each of its sub-menu items have a corresponding picture of Nicholas. For example, selecting About Nicholas > Nicholas' Star In The Sky, you will see his actual star that was registered as "Nicholas Colby"

6a) After selecting "Nicholas' Memorial Service and Celebration of Life" you will be able to access the actual speeches, songs, and poems delivered by the speakers as well as a corresponding picture of each speaker

GENERAL NOTES:

Remember to scroll down all the pages to thoroughly browse and enjoy the richness of the content that more fully reveals our work of "Helping Children Be Children". You will find surprises:

1) For example, like a Proclamation after selecting What We Do > Sponsors and Partners, and scrolling all the way down its content

2) For example, a personal message from me, Sheila, and Gina after selecting About Us, and scrolling down as you look under the heading titled "Nicholas Colby Fund Facilitators...seeing the content and a picture for each of us

Or in other words, we truly hope that you just enjoy as we all reflect on love in the ways that we do..."Helping Children Be Children".

We hope you will save this new site as a favorite and we hope you see all the pictures, hear all the songs, and experience the love integrated helping Nicholas' legacy to fly and the love of other children connecting…for other children.

Lamont


November 16, 2007

Nicholas' Grandmother...Connection Of Love

Nicholas' grandmother, my mom (Eva Marie Gilbert), passed away on November 8 and this past Wednesday, November 14, we held her memorial and interment services. Of course, my mom and Nicholas shared love and their sharing continues in a myriad of ways on earth as well as Heaven.

The singer and song (Sarah Bannwart, Amazing Grace) during the interment service was heard again at my mom's interment service. Similar to the release of doves and butterfiles at Nicholas' interment service, doves were released at my mom's service. The doves were a beautiful connection and another connection is the natural love for children by my mom. In honor of my mom's love for children, my siblings (9 of us) has The Nicholas Colby Fund as the charitable organization in lieu of flowers.

You can see Nicholas and his grandmom (my mother) by clicking onto About Nicholas > Nicholas In Pictures > Image 32 and 42.


November 22, 2007

More Events/Experiences For Children And The Nicholas Colby Fund

Thanksgiving Day dinners for some inpatients and all parents
With this new website now in flight, some of you may not have fully explored the content from About Us, About Nicholas, What We Do, to Participate and all of the sub-menu items and drop down menu items. We mention this today because while we may not always talk about upcoming events/experiences on these journal entries (blogs), you can see what is upcoming by going to What We Do > Events/Experiences > Upcoming Events (by scrolling to the calendar toward the bottom of the Events/Experiences page).

What is upcoming
On November 22, 2007 we will have our 2nd Annual Thanksgiving Day dinners for some oncology inpatients and all the parents and/or guardians in the children’s oncology wing with their child. These dinners will be delivered to Children’s Hospital Oakland and Stanford-Lucile Packard Children’s Hospital (LPCH).

NOTES:

  1. Nicholas called turkeys, "the big chickens!"

  2. California Cafe of Palo Alto partnered with us for the second year sponsoring 50% of the dinners for LPCH.

On November 23, 2007 patients and their family from Children's Hospital Oakland will enjoy a night in a luxury suite watching "So You Think You Can Dance".

On November 28, 2007 we will hold our 2nd Annual after hours Christmas shopping to benefit The Nicholas Colby Fund for our work toward "Helping Children Be Children". This event is at Games Unlimited: 810 Sycamore Valley Road (West) in Danville, CA (at the Danville Livery), 925 838-6358. 10% of the proceeds will go to The Nicholas Colby Fund. If you are unable to make it to this fun event and want to participate, you may make a tax-deductible donation by pressing the “Donate” menu item above.

On December 7, 2007 patients and their families from the Bay Area children's hospitals will enjoy a night in a luxury suite watching the Golden State Warriors basketball game versus the Miami Heat.

On December 9, 2007 patients and their families from Children’s Hospital Oakland will be guests of The Nicholas Colby Fund as they spend time out to simply have some fun away from the hospital and treatment, at a San Francisco 49ers football gave versus the Minnesota Vikings.


November 25, 2007

One and one-half years in Heaven

Today Nicholas has been in Heaven for one and one-half years. As we think about Nicholas' love and joy for babies, we remember how the love was a deep, beautiful love for babies. We remember how the last month of Nicholas’ life he talked about wanting us to always be able to hold him and carry him like a baby. He said he wanted to stay small so that we could always do just that—although we told him we always would…no matter what, hold him and love him as the beautiful boy that he is.

“We do, Nicholas, every day and every moment hold you are in our arms…in our hearts…and in our souls…feel love beating with passion & excitement feeling your beautiful, perfect love illuminating from our every thought about you!”

As we talk about “He knows” referring to God, we again are so grateful for the conversations we always had with Nicholas letting all of us know that Nicholas “just knows” no matter what, no matter the time…place…or space…that WE just know that we would be in each other’s hearts and souls. Even now! “Yes Nicholas, we feel you baby and there is continuous feelings and love for you.” (One of many ways we deeply express our love for God and for Nicholas is through what we call, Nicholas’ Love under About Nicholas > Nicholas’ Love)

God’s masterpiece is created in God-speed so we will continually trust and believe His omnipotence, omniscience, and be so grateful for His omnipresence rendering us a constant parent shepherding us along the way.

Today we will read one of Nicholas’ favorite books, “I Want To Be Somebody New!” by Robert Lopshire. (All of Nicholas’ favorite things are under About Nicholas > Nicholas’ Favorite Things) And we will pray. Our prayers are grounded in love and understanding. On the understanding, we trust and believe God’s words while we do struggle so very, very much not having Nicholas physically with us. And we know, we just feel and trust that Nicholas is absolutely in a better place—even with our amazing love for Nicholas, we cannot selfishly want him here when he is lively, angelically, and heavenly flourishing along God’s side.

And we think about the song, “If You Could See Me Now” by Integrity Music, Songs of Hope. This song reveals to us that Nicholas is playing and having fun with Jesus, along side of God. Some of the lyrics are: If you could see me now, you would know I see His (God’s) face, if you could see me now, you would know the pain is erased, you would not want me to leave this perfect place, if you could see me now. (You could see all of the lyrics under About Nicholas > Sound Tracks > Sound Track Lyrics > If You Could See Me Now)

Sunday, October 28, 2007 11:28PM CDT

ONE YEAR AND FIVE MONTHS AGO (this past Thursday)
October 25, 2007 marked one year and five months that Nicholas has been in Heaven. In so many ways it seems just like yesterday…and we are grateful in many ways that it does not seem like a long time ago. Perhaps the good aspects of it seeming like it was yesterday Nicholas ascended to Heaven is the fact that Nicholas' love & spirit is so very, very present.

Remember the following song we talked about after Nicholas went to Heaven? "If You Could See Me Now," by Integrity Music-Songs Of Hope, God Will Make A Way. We think about this song today…thinking about the joy Nicholas is experiencing at God's side, playing & having fun with Jesus. Following are the words, remember?

Our prayers have all been answered,
I finally have arrived.
The healing that had been delayed,
Has now been realized.

No one's in a hurry,
There's no schedule to keep.
We're all enjoying Jesus,
Just sitting at His feet.

If you could see me now,
I'm walking streets of gold.
If you could see me now,
I'm standing tall and whole.

If you could see me now,
You'd know I'd seen His face.
If you could see me now,
You'd know the pain is erased.

You wouldn't want me,
To ever leave this place,
If you could see me now.

My light and temporary trials,
Have worked out for my good.
To know it brought Him glory,
When I misunderstood.

Though we've had our sorrows,
They can never compare.
What Jesus had in store for us,
No language can share.

If you could see me now,
I'm walking streets of gold.
If you could see me now,
I'm standing tall and whole.

If you could see me now,
You'd know I'd seen His face.
If you could see me now,
You'd know the pain is erased.

You wouldn't want me,
To ever leave this perfect place,
If you could only see me now.
If you could see me now...

NICHOLAS' OFFICE HERE ON EARTH
Nicholas is vibrantly in our lives and the lives of so many others-we know we are blessed knowing Nicholas is so loved-and through his legacy, The Nicholas Colby Fund - Helping Children Be Children.

Many of you remember Nicholas' passion for reading, learning, exploring, teaching…and before his leukemia journey a regular journey to his "office" was the order of every week. Remember Nicholas called the Lafayette Library his office? He loved to go to the library to select a book, sit at the table and read it…pick out another book, sit at the table and read it…and simply explore the wonders the library offers. When we drove by the library Nicholas would say, "There is my office." Nicholas was so happy to have his own office and when he was in the hospital, many of you may remember how he would set up a desk in his hospital room like an office. Throughout Nicholas' photo albums you will see pictures of him reading, learning via a computer (PC or hand-held), writing notes, etc. "Nicholas, we thank God, you are never gone, never far…forever in our hearts and souls. Remember, son, we just know…"

Well, today we were at the Lafayette Reservoir, another one of Nicholas' favorite spots (along with oceans, lakes, and any body of water). And aside from Nicholas being with us in the ways that he always is, we had a picture of Nicholas with us…the black & white picture with his tie on that is in the 3-picture collage you can see by clicking on View Photos (the third of 3 pictures). The connection today with the Lafayette Library is that we were on a photo shoot for a library brochure that will feature Nicholas' passion for the library to the point that he called it, "my office…" Once the brochure is published we will share it with you via Nicholas' website.

WE LEARNED FROM A FRIEND IN DENVER SOMETHING THAT IS TRUE FOR US, "IT DOES NOT GET EASIER…IT GETS DIFFERENT"
Also for us-thankfully-God's love does not get different…God loves and demonstrates love in so many ways, EVERYDAY! And in every way imaginable and unimaginable Nicholas is playing & having fun with love.
Sunday, October 21, 2007 9:46 PM CDT
REMEMBER HOW NICHOLAS CARED AND SHARED
We, of course, remember how Nicholas cared and shared… We, of course, care and share because of our love for Nicholas and trusting God. To this point, caring and sharing via the Nicholas Colby Fund, it is so inspiring to see smiles on the faces of the children and their families who have not had many recent opportunities to smile. Delivering experiences for patients from Children's Hospital Oakland, Stanford-Lucile Packard Children's Hospital, and UCSF-Children's Hospital, we continually look forward to helping many more families to have a treasured moment or two and believe we truly are making a difference - Helping Children Be Children (our tag line).

We so trust and believe God is caring for Nicholas and Nicholas is playing & having fun with Jesus…and smile imagining Nicholas' vibrant smile and sparkling eyes being in Heaven!

LAST WEEK MESSAGE FROM UCSF-CHILDREN'S HOSPITAL
Thinking about seeing smiles on faces of the children who have not had many recent opportunities to smile…WE SMILED last week after hearing the following message from an UCSF-Children's Hospital representative:

"Hi Lamont, these tickets went so quickly!

One family in particular cried when they received them. They used the tickets as a celebration of their daughter leaving the hospital after three months. She is a huge High School Musical fan, and the timing could not have been better.

Thank you so much for continuing to be such a great friend to the Children's Hospital."

REFLECTIONS AND THE NICHOLAS COLBY FUND'S GUIDING LIGHT
The reflections we talked about in the October 6, 2007 journal (under the Journal History tab) were reflections about Nicholas and continue to be about Nicholas everyday. And for you or others we know that with your reflections about Nicholas, there are others in your lives that you reflect on who have been impacted by cancer, a degenerating condition, or other life threatening illness.

The guiding light we talked about was about Nicholas and his legacy, The Nicholas Colby Fund, through his beautiful spirit coupled with the direct and in-direct support of you. Thank you!

Following is a snapshot of the last couple of weeks and a flavor of Nicholas and the Nicholas Colby Fund's continuous work:

- Events/experiences in a luxury suite at the Oracle Arena for 16 patients and their family members: last week it was High School Musical On Ice

- Golden State Warriors professional basketball games

- Nicholas' love for reading and the Lafayette Library

- Nicholas Colby Fund backpacks for patients diagnosed with cancer at the three children's hospitals. Partnering with the Gabby Krause Foundation along with backpacks provided by Samsonite, creating Bags of Fun that we will soon start providing

- San Francisco 49ers professional football games
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Saturday, October 13, 2007 11:45 PM CDT
***SPECIAL UPDATE***

Tonight's Leukemia & Lymphoma Society's LIGHT THE NIGHT® WALK was bittersweet…amazing…loving…and spectacular as we all felt Nicholas' love illuminating our hearts & souls. "And Nicholas, I trust that God and Jesus have illuminated you and everything around you in the most spectacular ways allowing you to feel the brightest love and be fulfilled with the brightest Love. Son, we can feel it, we can see it…you are walking streets of gold and playing & having fun with Jesus!"

We would love for all of you to see the faces of those that were part of Team Nikko at the Walk tonight. We would also like you to see the current Nicholas Colby Fund flyers for tomorrow night's (Sunday) first Warriors home game of the season for a patient from Children's Hospital Oakland/UCSF Children's Hospital…Monday night's second home game for patients from Children's Hospital Oakland…and Thursday night's High School Musical On Ice for patients from UCSF-Children's Hospital.

Please copy and paste the following into your web browser, which is the Nicholas Colby Fund 4th Quarter 2007 photo album:

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.a2d1ocd6&x=1&y=k8tivi
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Friday, October 12, 2007 9:00 AM CDT
***SPECIAL ANNOUNCEMENT***

LIGHT THE NIGHT® WALK (with Nicholas) SATURDAY NIGHT - October 13, 2007
Beautiful was the tone of the night as family and friends (from home, Nicholas' school, and our work) participated on "Team Nikko" in Walnut Creek last October for the Light The Night® Walk, which is the Leukemia & Lymphoma Society's nationwide evening walk to build awareness of blood cancers. Under the full moon the time spent together talking, walking, and loving Nicholas as well as all these beautiful kids who are surviving or have passed away, was beautiful.

This year we are doing it again-tomorrow night (Saturday, October 13, 2007):

- 5:00pm Registration, Check-in, Food, Entertainment, Booths Begin

- 6:15pm Remembrance Ceremony at Rose Garden

- 6:30pm Presentations Begin

- 7:00pm Walk Begins

FOLLOWING IS INFORMATION PROVIDED BY THE LEUKEMIA & LYMPHOMA SOCIETY:

Evening Host - KGO AM 810 Radio Personality, Ed Baxter
Featuring Live Music by Brad Wolfe & The Moon
Performances by College Park Cheer, Team Rave, and Lauren Bishopp

FOOD: Food is provided at the walk FREE of charge for all participants who have raised a minimum of $25 or donate $25 on the day of the walk -- sponsored by Whole Foods Market. Beverages from Naked Juice, Crystal Geyser, Glaceau SmartWater and Vitamin Water are complimentary to all those that attend!

REMEMBRANCE GARDEN: Light a candle and celebrate the lives of those no longer with us. Visit us at the Patient Services booth to receive a candle for the Remembrance Garden and Remembrance Ceremony which begins at 6:15pm -- Led By Carol Wu and Lamont Gilbert. Let's remember their life so that we can find the cure for our future!

Nicholas' spirit and love in so many ways lives on, as all those who knew him still carry a piece of Nicholas in their hearts. And lives on as all who have become to know Nicholas through his love & the Nicholas Colby Fund - Helping Children Be Children.

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Saturday, October 6, 2007 10:16 PM CDT
DAILY REMINDERS OF A LOVE SO STRONG, SO INFECTIOUS (this word used here is a good thing)
A couple of weeks have gone by since our last journal, although we know that we are blessed knowing that Nicholas loved God and expressed his love for God every day. Even when we could not understand why so many things were happening during the leukemia journey…Nicholas, thankfully, turned to God as we would hold him, pat him, pray with him, cry with him, and smile with him as we felt God's love-even when it was hard to understand why things were happening, or not happening!

Well, the daily reminders of Nicholas' love for God also generate reminders of Nicholas' love for life and everyone & everything around him. We are so fortunate to have this love as an everlasting layer of our hearts & souls.

- Today, seeing and hearing kids at play…I could see, hear, and feel Nicholas at play around our lives and know that he is playing & having fun with Jesus.

- Yesterday, looking out onto the patio at our home there was a squirrel hiding an acorn in one of the terra cotta pots/planters. Immediately I could hear Nicholas saying, "Mom, a squirrel is in your plants!" Many of you will remember this and remember that Nicholas seemed to enjoy tattling on the squirrels to see mom chase the squirrel away. We could hear his voice now and see the joy on his face-a simple pleasure that we treasure.

- And, everyday before yesterday and everyday to come, although many times it is so bittersweet, we remember our precious angel. Nicholas, we don't have to see you, to know that you're here!

REFLECTIONS AND THE NICHOLAS COLBY FUND'S GUIDING LIGHT
Helping Children Be Children is more than just the tagline for the Nicolas Colby Fund. It has always been a significant part of our lives and with our lives around Nicholas. Nicholas, remember, not just loved playing with kids (as most kids to). He loved to care about kids around him, he loved to share with kids around him, and he loved to help make them smile. So with the Nicholas Colby Fund in its second year, along with the Ringling Brothers and Barnum & Bailey circus, Sesame Street Live, Disney on Ice, the San Francisco Ballet, and a host of other events and experiences, it is reflecting on Nicholas' love that is the guiding light for our actions.

Remember, following are the current actions:

NICHOLAS' LOVE FOR READING AND THE LAFAYETTE LIBRARY
Well, along with Nicholas' connection and Nicholas calling the Lafayette library his office…Sheila and I have new connections with the library:

- Sheila began participating in a monthly "Sweet Thursday" sitting at the library that features a book and engaging with its author

- I have been selected as a Board of Trustee for the new Lafayette Library & Learning Center to help guide this $43 million entity in its infancy

And these new connections are purely connections with another one of Nicholas' love and passion enabling us to continually know that Nicholas is never gone, never far…forever in our hearts & souls. We are so thankful for God's love caring for us in these ways as we simply trust and believe that God is lovingly caring for Nicholas…and Nicholas is happily playing and having fun with Jesus.

NICHOLAS COLBY FUND BACKPACKS
This past week we received approval from Children's Hospital Oakland's administration and governing boards to begin providing the Nicholas Colby Fund backpacks to newly diagnosed children with cancer. Through partnering with the Gabby Krause Foundation out of Colorado (remember, Nicholas was in Denver, Colorado for a few weeks), Samsonite has provided backpacks for all three children hospitals the Nicholas Colby Fund works with. This new experience toward Helping Children Be Children is backpacks full of fun, engaging toys, games, and books: hand-eye coordination items, art & creative items, general learning items (about math, writing, and reading), musical items, imagination items, fun stuff, and more.

The outcome of this experience is that one of the first things a newly diagnosed child will see when they are first admitted into their hospital room is a Nicholas Colby Fund backpack just for them. We are planning on having the parents of Gabby Krause on hand when we deliver the first backpacks. Stay tuned for the start date…

SAN FRANCISCO 49ERS EXPERIENCES VIA THE NICHOLAS COLBY FUND
Remember, patients from Children's Hospital Oakland (CHO), Stanford-Lucile Packard Children's Hospital (LPCH), and the University of California San Francisco-Children's Hospital (UCSF) will be guest of the Nicholas Colby Fund at 49ers professional football games throughout the season. Tomorrow patients from LPCH will enjoy the game against the Baltimore Ravens and then patients from CHO at a following game.

GOLDEN STATE WARRRIORS EXPERIENCES VIA THE NICHOLAS COLBY FUND
Less than one month away the Warriors' 2007/2008 season begins, and the Nicholas Colby Fund will begin its second season working with the Warriors toward Helping Children Be Children as patients from all three children hospitals will be our guests to enjoy professional basketball, excitement, and fun. All these things toward giving a child a reason to smile and focus on fun, not medicine.

If you do not know or remember the amazing partnership with the Warriors, please refer to the Nicholas Colby Fund 2nd Quarter 2007 photo album by copying and pasting the following into your browser. In this album you will see the proclamation we delivered to the Warriors on June 18, 2007:

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x

Saturday, September 22, 2007 11:01 PM CDT
NICHOLAS' LOVE FOR READING AND THE LAFAYETTE LIBRARY
Throughout Nicholas' life you would find him reading or being read to…from "Chicka Chicka Boom Boom" to his Children's Bible. Whether we were home, in the car, in the park, or at the hospital, Nicholas loved books. Whether it was mom, his teacher Ms. Shirley, or even Thunder (the Golden State Warriors professional basketball team mascot who visited Nicholas at home and in the hospital during the leukemia journey). Remember how Nicholas called the Lafayette Library his office? There is a new Lafayette Library & Learning Center being built and we have met with a representatives who want to include a story in their marketing campaigns about Nicholas…stay tuned for more details over the next couple of months.

 

NICHOLAS COLBY FUND BACKPACKS
The backpack experience for children newly diagnosed with cancer is in the final stages of review by Children's Hospital Oakland. We're getting closer to delivering this new experience-details are in the August 4, 2007 journal entry under Journal History).

SAN FRANCISCO 49ERS EXPERIENCES VIA THE NICHOLAS COLBY FUND
Remember, patients from Children's Hospital Oakland (CHO), Stanford-Lucile Packard Children's Hospital (LPCH), and the University of California San Francisco-Children's Hospital (UCSF) will be guest of the Nicholas Colby Fund at 49ers professional football games throughout the season. Up next for this experience is LPCH for the October 7, 2007 game against the Baltimore Ravens.

GOLDEN STATE WARRRIORS EXPERIENCES VIA THE NICHOLAS COLBY FUND
You know all about our amazing partnership with the Warriors (if not, please refer to the Nicholas Colby Fund 2nd Quarter 2007 photo album by copying and pasting the following into your browser). In this album you will see the proclamation we delivered to the Warriors on June 18, 2007:

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x

Well, next month the Warriors 2007-2008 season begins and so does the Nicholas Colby Fund experiences at Warriors games for the three children's hospitals.

LIMITED JOURNALS THE PAST TWO WEEKS
(Remember, we have started capturing journal entries on Saturdays with some exceptions):

Friday, September 21, 2007

Thursday, September 20, 2007

Wednesday, September 19, 2007

Tuesday, September 18, 2007

Monday, September 17, 2007
In San Diego for business...yes Nicholas has been in San Diego too. So the moments were sweet-bitter-sweet and new moments of reflection created new moments of love in many ways. And trusting the moment (and forever moments) when more than just our spirits will dance together as they do now, I trust & believe love will follow generating the promise of love in heavenly dimensions-and its heavenly ways of joy,

Sunday, September 16, 2007

Saturday, September 15, 2007
A wonderful experience at Camp Okizu: Canoeing and enjoying the serene surroundings as well as thinking about our precious Nicholas who enjoyed being on and in the water. We navigated a ropes course climbing high into the trees, across wires, and cascading down...and we thought about Nicholas and his rock climbing adventures.

And once again, Sheila painted a couple of rocks we found. You can see the picture in the Nicholas Colby Fund 3rd Quarter 2007 photo album by copying and pasting the following into your browser (currently it is the cover picture):

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.byq6bxd2&x=1&y=gcteh1

- You will see a rock with a rainbow! Remember the rainbows that Nicholas painted and his streets of gold? We think about the song, If You Could See Me Now, and the words: "...if you could see me now, I'm walking streets of gold..."

- Also you will see a natural multi-colored rock that we painted Nicholas' signature red balloon onto it. The red balloon in the Nicholas Colby Fund logo is actually a balloon that Nicholas painted. We had the design company laser and integrate it with the logo.

- And you will see a majestically sculptured rock and notice it's heart shape

Friday, September 14, 2007
We are back at Camp Okizu for the second year. For information about the first year, September 15, 2007, please refer to the September 14-17, 2007 journal entries by clicking on the Journal History tab.

Thursday, September 13, 2007

Wednesday, September 12, 2007

Tuesday, September 11, 2007

Monday, September 10, 2007

Sunday, September 9, 2007
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Saturday, September 8, 2007 11:08 PM CDT
TOUGH WEEK…AND FOCUSING ON NICHOLAS' AMAZING LOVE GUIDES US
This past week we experienced two separate upsetting situations that, seemingly, tested our faith in an extremely different way. As hard (relatively) as those situations are, we turn to prayer focusing on love, on God's love, and of course Nicholas' love that allows us to trust and believe in God's love. Faith is not easy when unknown people "choose" to do things that are, simply, not right. Remember how calling out Jesus' name, praying, and just wanting to read the bible provided comfort to Nicholas during his leukemia journey. However drastically different (items removed from the memorial site), we thought about Nicholas' approach and it was another teaching to us. We often say, "Father!" as we call out to God…and His name lovingly helps us to be relatively okay. Helps us to keep focus on our work toward Helping Children Be Children, the good that people do, and hope in all ways that people desire.

A NEW NICHOLAS COLBY FUND EXPERIENCE - Helping Children Be Children
Nine months ago we delivered a San Francisco 49ers professional football game experience for a patient from Stanford-Lucile Packard Children's Hospital (through donation of the tickets to us by a parent from the Diablo Valley Montessori School that Nicholas attended). This coming Monday, September 10, 2007, the Nicholas Colby Fund begins delivery of San Francisco 49ers football game experiences throughout the entire season. The first experience will be for patients from the University of California San Francisco-Children's Hospital.

NOTES: We are getting closer to delivery of backpacks for newly diagnosed patients starting with Children's Hospital Oakland; nutritional packs for parents or guardians of patients going into the pediatric intensive care unit continue; and upcoming will be Golden State Warriors professional basketball game experiences throughout the season. (We are working to repeat the joy and smiles generated, with the Warriors organization's help via special visits by Thunder, their mascot, and player meet & greet sessions in our suite and other opportunities.)

 

NO JOURNALS WRITTEN:

Friday, September 7, 2007

Thursday, September 6, 2007

Wednesday, September 5, 2007

Tuesday, September 4, 2007

Monday, September 3, 2007

Sunday, September 2, 2007
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Saturday, September 1, 2007 11:04 PM CDT
NICHOLAS COLBY FUND - Helping Children Be Children
Backpacks for newly diagnosed patients will soon start at Children's Hospital Oakland; nutritional packs for parents or guardians of patients going into the pediatric intensive care unit continue; and all of the events/experiences delivered during the first year are upcoming.

THE TOUCH OF LOVE
We often think about what we would be doing with Nicholas and what he would be doing…today, this weekend, this new school year and the love that he would be sharing and receiving. We think about him engaging with friends, with family, and those around him as well as his interaction with nature, with butterflies, with ladybugs, playing & having fun with love.

When we are walking, riding bikes, or driving…we remember Nicholas along side us, holding hands, and holding him while we walked, while we talked, while we just gazed into each other's eyes. And what we remember and know today that our shared touch of love warms our hearts & souls. And we know, because Nicholas knew and loved God…because we trust and believe God, that Nicholas truly is never gone, never far, forever in our hearts & souls.

Nicholas is a touch of love…and for us it is comforting trusting God and for us everyday we feel the notion-some people only dream of angels, we held one, hold one, and are blessed to have one in our life. "Patting" Nicholas was very pleasing to him (remember how he loved us to hold him and pat him) so we trust that our Father, God, is patting Nicholas just right. Patting Nicholas in ways more than satisfying his desires! Remember the words we sang, "Because you live, son, my world has twice as many stars in the sky" (June 10, 2006 and July 17, 2005 journal entries, under Journal History)?

Everyday is a blessing knowing God, knowing Nicholas, and remembering the blessings we experienced and experience loving Nicholas…and being loved by God as well as Nicholas. Nicholas lives in spirit that is not limiting at all...he lives in spirit that is touching and patting lives beyond imaginations. As we have said, "Our angel Nicholas… we don't have to see you to know you are here."

SONG-BY HEART-BY JIM BRICKMAN (pianist)
Songs, music and reading, books are some of the things Nicholas loved. Thinking about his touch of love, tonight I thought about and in my heart heard the song, By Heart:

Hold me close, baby please
Tell me anything but that you're gonna leave
As I kiss this fallen tear
I promise you I will be here

Until the stars fall from the sky
Until I find the reason why
And darling as the years go by
Until there's no tears left to cry
'Til the angels close my eyes
And even if we're worlds apart
I'll find my way back to you...
By heart

When you go, I'll stop the clock
I won't ever let this moment stop
Time is stealing you from me
But it can never take this memory

Until the stars fall from the sky
Until I find the reason why
And darling as the years go by
Until there's no tears left to cry
'Til the angels close my eyes
And even if we're worlds apart
I'll find my way back to you...
By heart

NO JOURNALS WRITTEN:

Friday, August 31, 2007

Thursday, August 30, 2007

Wednesday, August 29, 2007

Tuesday, August 28, 2007

Monday, August 27, 2007

Sunday, August 26, 2007
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Saturday, August 25, 2007 11:47 PM CDT
ONE YEAR, THREE MONTHS…
Today: It has now been one year and three months that Nicholas has been in Heaven! A gentle breeze at Nicholas' Oakmont Memorial Park site today, and this evening while bike riding, generated moments of reflection that, thankfully, surround our lives everyday in ways that at least help us to keep focused on love. God's love! So like the following lyrics from a song-"if you could see me now you wouldn't want me to ever leave this perfect place"-our focus is on Nicholas with God, with Jesus, surrounded by love…playing and having fun!

WHAT WAS EXPERIENCED AT NICHOLAS' SITE TODAY?
Standing at the top of the ridge at Nicholas' Oakmont Memorial Park site, the warm/cool breeze…the rainbow pinwheel spinning and reflecting onto the gazing ball…and the reflection of EVERYTHING present seemingly glowing as you gaze into the gazing ball…the colorful plants & flowers on Nicholas' site…an airplane high in the distance with its white smoky trail illuminated by the sun's rays…the hawks soaring…the birds chirping…and then directly overhead the sound of another airplane very high in the sky provided a soothing roar.

All these things became even more magnificent as the breeze sporadically picked up causing the plants, flowers, Nicholas' sports flag on the in-ground flagpole, etc. to wave & flap. Between breezes it was calm allowing the sounds of nature to be heard in a way that each sound magnified-seemingly into my heart. Moments like these I think about the song, What A Wonderful World, and the lyrics "And I think to myself, what a wonderful world…" And I struggle missing Nicholas physically!

ANOTHER SURPRISE
Today, a "winged" statute and a second dolphin snow-globe were left at Nicholas' site. This time, Nicholas' teacher and the mother of a classmate left them. Today, like yesterday, and all the days gone by…and days to come we are thankful that love is not a surprise-love is ever present and its surprise is love that is constant and never, ever failing. Although some things are so very, very hard to understand...and we do think to ourselves, why?

 

NO JOURNALS WRITTEN:

Friday, August 24, 2007

Thursday, August 23, 2007

Wednesday, August 22, 2007

Tuesday, August 21, 2007

Monday, August 20, 2007

Sunday, August 19, 2007
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Saturday, August 18, 2007 6:40 PM CDT
NICHOLAS COLBY FUND
Last night it was the Ringling Brothers and Barnum & Bailey circus for patients from UCSF-Children's Hospital…tonight it will be the circus for patients from Stanford-Lucile Packard Children's Hospital.

Coming up:
- Continued delivery of the nutritional packs for parents/guardians of patients going into the pediatric intensive care unit at Children's Hospital Oakland.

- Backpacks for newly diagnosed patients. It will be a phased implementation to the children's hospitals beginning with Children's Hospital Oakland. (Please refer to the August 4, 2007 journal entry, under Journal History, for more information.

- And soon it will be professional football games…followed by patients having a great time out at the Golden State Warriors professional basketball games, once again, throughout the entire season.

NICHOLAS' TREASURE: HIS LOVE HE "LOVED" TO SHARE
This past week loving Nicholas and Nicholas' love that continually fills our lives in warm, sensitive ways was ever-present. From a message shared by a friend…being asked & becoming Cal's God Parents…to a message from Nicholas' teacher, love warmed our hearts as Sheila and I embraced Nicholas' love-his spirit.

Message from a friend:

Following are excerpts of a message that was shared with us. It was a message with an array of bridges amidst magnificent looking skylines, colors, and places we have all been and hope to be in. It warmed our hearts and touched our souls as the words spoke of how we loved, and love, Nicholas.

Reflections On Life
"Our life cannot always be full of happiness but it can always be full of love…
A true friend is one who holds your hand and thus touches your heart…
Always remember the words from a true friend: "I'll be there for you"…
Work, as if you don't need money; Love, as if nobody has hurt you;
Dance, as if nobody was watching you; Sing, as if nobody was listening;
Live, as if this was paradise on earth."

Our friend, Nicholas' friend, Our Nicholas Colby Fund partner and friend to its work:

This past week Gina Baker, a dear friend who founded the Nicholas Colby Fund that we have established, asked Sheila and I to be Cal's (her son) God Parents. We know about the traditions of who become God Parents and the nature of God Parents. And we, certainly, know about love and all that simply loving creates. In some ways becoming God Parents was very, very difficult…and at the same time it was and is so amazing as we love Nicholas while allowing his love to enable us to love in this new God Parent role way.

Message from Nicholas' teacher to be shared on Nicholas' site:

The Treasure is a Bench:
"As I watched the Oakmont Memorial Park gentleman tack and cement Nicholas' bench into place on Monday. I was reflecting on relics and treasures of those who have left this world before us-all too soon for most of us.

"Recently, I was thrilled to view cremation remains of Buddhas from South East Asia through a peace-keeping tour to the U.S.-including visits to monasteries, schools, civic venues, etc. There were remains from the original Buddha (or Guatama) from the beginning to the present Dalai Lama. Some were housed in a museum in Rangoon, Burma, where I once lived. Some contained bones; others held teeth, ashes, hair, etc. Some remains came from Sri Lanka, India and other countries. I marveled at their antiquity through the centuries and how those treasures from the past made me feel.

"Forward to now: I now see Nicholas' bench as one of his relics to us. Not only can we recall his mercy frolicking in, around and over it, we can sense his sweet touch and presence. Happily for us, it will now be around for a long, long time for all of us to enjoy and meditate on.

"All of this because of an astute stranger who had simply read an article (in the newspaper) and remembered! We are grateful for all the hands who helped in the return of the bench: Katherine Tam who wrote the article, Jennifer who purchased the bench, the woman who associated the bench to Nicholas' written about in the newspaper, the sheriffs department, and the Oakmont Memorial Park gentleman that installed it back into its proper place.

"With sweet memories and a Mahalo to all who helped; and sweet memories of our wonderful Nicholas!"

 

NO JOURNALS WRITTEN:

Friday, August 17, 2007

Thursday, August 16, 2007

Wednesday, August 15, 2007

Tuesday, August 14, 2007

Monday, August 13, 2007

Sunday, August 12, 2007
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Saturday, August 11, 2007 10:34 PM CDT
DREAMS…& GOD'S LOVE CARRIES LOVE TO AND FROM NICHOLAS
We learned from others who walk a path with their child in Heaven, we are walking this path, and are so sad knowing friends met along the leukemia journey are now walking this path. What we have learned and has become part of our personal experiences is that "it" does not get easier, "it" just gets different.

Thankfully, as Nicholas knew and "sees" today, God's amazing love (although sometimes it is so hard to understand) is the same from yesterday, today, and will be tomorrow. God's love is constant and endless and we trust and believe His love comforts, provides, and soothes…(although sometimes it is so hard to understand).

There is a Hawaiian singer, Israel Kamakawiwo'Ole, whose soothing and dramatic voice captures moments in a way that enables the words to warmly touch your senses. He sings the song "Somewhere Over The Rainbow" blended with the song "What A Wonderful World (May 6, 2007 and June 23, 2006 journals under Journal History; it is the version from the movie "50 First Dates"). That blended song deeply touches our hearts & souls. Most of you probably know the words to these two songs…and can sense & feel Nicholas as well as your loved ones who may have passed onto Heaven.

The words: over the rainbow, way up high, dreams really do come true, lullaby, wish upon a star…trees of green, red roses too, skies of blue, clouds of white, the colors of the rainbow so pretty in the sky, friends saying I love you.

ALSO REMEMBERING THE OCEAN AND BEACH
Well, there is another song called "White Sandy Beach of Hawaii" that Israel Kamakawiwo 'Ole sings that always elicits special meanings because of Nicholas' love for Hawaii, the ocean, and the beach. Following are excerpts from that song:

"Last night in my dreams, we were walking hand in hand, on a white sandy beach, of Hawaii…

We were playing in the sun, we were having so much fun, on a white sandy beach, of Hawaii…

The sound of the ocean, soothes my restless soul, the sound of the ocean, rocks me all night long…

Oh last night in my dreams, I saw your face again; we were there, in the sun, on a white sandy beach, of Hawaii…"

SEEING AND BELIEVING LOVE
Clicking on the "View Photos" tab above or the camera icon below (Home Page), the first two of 3 photos provide a collage of love. Please click, see, and feel love, through God's love lifting a spirit that is truly never gone, never far…forever in our hearts & souls.

ANOTHER VIEW OF LOVE THROUGH YOUNG ADULTS
Nicholas' Oakmont Memorial Park site seems to flow with love…for even adolescents in high school, young adults in college, and those out of college who knew Nicholas regularly make their way to his site to ponder and feel love. It is not uncommon for us to arrive at his site, be at Nicholas' site, or be leaving his site…when young friends are already there or show up. We are thankful for the friendship and love from all of you. And we trust and believe that all of us are helping to make this world a better place…as we again think of the song "Somewhere Over The Rainbow" blended with the song "What A Wonderful World."

Nicholas, we love you…

 

NO JOURNALS WRITTEN:

Friday, August 10, 2007

Thursday, August 9, 2007

Wednesday, August 8, 2007

Tuesday, August 7, 2007

Monday, August 6, 2007
Thankfully, it "is" Nicholas' bench and now will go back to its perch at Nicholas' site!
Sunday, August 5, 2007
________________________________________
Saturday, August 4, 2007 11:59 PM CDT
NICHOLAS' TERRA COTTA BENCH MAY HAVE BEEN RECOVERED
Hi everyone, remember the terra cotta bench that was stolen from Nicholas' Oakmont Memorial Park site on June 21, 2007? (If not, please refer to the June 21 journal, under Journal History.) This past Thursday we received a telephone call from the sheriffs office that they believe Nicholas' bench has been recovered-it will be confirmed Monday afternoon at 4:30 PM and at about 5-5:30 PM we will be at Nicholas' Oakmont site to begin the steps of placing it back at the site using a "secured" installation process.

WHAT WE KNOW ABOUT THE RECOVERY: A person purchased the bench outside the entrance of a Concord flea market from an unknown person. The purchaser took it home to have it placed as a memorial for an aunt who recently passed away. When the purchaser had family and friends see the bench, one of them recognized the bench from the newspaper article…and now we are getting the bench back. What a blessing and apparent blessings this bench-situation has generated over the past 1 1/2 months.

THE BENCH: The picture above shows the bench at the site before it was stolen.

REMEMBER: Love begetting love... how we often experienced and talked about the circle of love we have always felt beginning with God, through Nicholas, and directly/indirectly from many of you. Once again, another example and blessing of love is touching our lives-and I believe your lives-via the return of Nicholas' bench.

STRANGERS CARING AND BECOMING FRIENDS: We are so thankful for the person who purchased the bench outside of the flea market…thankful for their wonderful, loving act of arranging the return of the bench to Nicholas' site to once again be perched where it belongs. A blessing to us, to them, and many of you in different ways. What a beautiful reminder about the goodness within all of us!

Our appreciation goes to the Contra Costa Times, Lamorinda Sun, and the Martinez-Pleasant Hill Record from running the story with pictures of the bench and Nicholas in their newspapers. And the Contra Costa County Sheriffs office for the attention to this situation, seemingly, as much as any situation they encounter.

SOME OF THE MESSAGES RECEIVED: Following are some of the messages we have received about the bench's apparent return:

- "In a circular way, people made positive choices to correct the ugly deed that robbed you of the bench."

- "Excellent! There are good people in the world - to 'undo' what the bad people do!"

- "That's fantastic news, I'm so glad for you all - it's comforting to know that most people still have a lot of goodness and humanity in them."

- "I am so glad to hear this. God does work in amazing ways!"

- "I am so happy for you and Sheila. I'm sure the new bench would have been lovely - but nothing could replace the bench that Nicholas actually played on. I guess that newspaper article really paid off! YAY!"

- "That is wonderful news. Look forward to seeing future pictures with the bench back at our Angel's site."

- "This is the best news. It is really very heartwarming that the bench was recognized from the newspaper article and will finally be returned where it belongs at Nicholas' site. It is truly a blessing to see the impact this story has had."

- "That's wonderful news, and ironic that the purchaser was going to use it for the same purpose- as a memorial. Thank goodness for the news article that resonated with the purchaser's relatives."

- "I knew in my heart that you would get the bench back. I knew my prayers would be answered and most of all God is so Good!"

- "Amazing! God works in mysterious ways…"

- "I couldn't be more thrilled to hear this news. Must be another "touch" by Nicholas..."

- "That's great news. It's amazing that the other person purchased the bench for the same purpose. I'm so happy for you and Shelia."

- "I am SOOOOOOO happy!!!! I haven't stopped thinking about that bench. That is a blessing - a true mitzvah."

- "I am so glad that you were able to get the bench back. God knew what it meant to your family."

- "I am so happy you'll get the bench back. (It) brought tears to my eyes reading this!"

- "I know how much the bench means to you guys and I am so happy n glad you are getting it back!"

- "Last June, I was so distressed to hear Nicholas' bench had been stolen. It is amazing that someone saw the article, identified it and returned it to Nicholas. Nicholas sure has friends in high places. I am so happy for you and your family."

ANOTHER PARTNER
Remember the July 28, 2007 private screenings of the movie Ratatouille at Pixar Animation Studios? (If not, please refer to the July 28 journal, under Journal History.) Remember how the Golden State Warriors professional basketball team had been, have been, and continue to be amazing with Nicholas and partners with the Nicholas Colby Fund? Well, Pixar Animation Studios is now just like that-an amazing partner that cares about people and communities beyond creating wonderful movies for children and adults. This new partnership is so fitting with our tag line of Helping Children Be Children. Stay tuned to our events/experiences that will be enhanced because of Pixar Animation Studios.

***ANOTHER WAY YOUR DONATIONS HELP AND YOU CAN HELP***
WORKING TO SECURE ITEMS TO GO INTO THE "NEWEST EXPERIENCE"
The Nicholas Colby Fund is talking with Games Unlimited (toy store out of Danville, CA) toward securing items that will go into the backpacks - details below. Please let us know if you can help with monetary donations (P.O. Box for tax deductible donations is above) or relationships with toy, book, or electronic game/music vendors. And stay tuned for how you could "sponsor" these backpacks.

THE NEWEST EXPERIENCE
Through partnering with the Gabby Krause Foundation out of Colorado (remember, Nicholas was in Denver, Colorado for a few weeks), Samsonite has provided backpacks for all three children hospitals the Nicholas Colby Fund works with. The newest experience we are preparing to deliver toward Helping Children Be Children is backpacks full of fun, engaging toys, games, and books. The outcome of this experience is that one of the first things a newly diagnosed child with a life-threatening illness will see when hospitalized will be...a Nicholas Colby Fund backpack just for them.

We are planning a September 2007 start date and complete details about phasing delivery to Children's Hospital Oakland, Stanford-Lucile Packard Children's Hospital, and the University of California San Francisco-Children's Hospital will soon be shared. The backpacks will contain: hand-eye coordination items, art & creative items, general learning items (about math, writing, and reading), musical items, imagination items, fun stuff, and more.

 

NO JOURNALS WRITTEN:

Friday, August 3, 2007

Thursday, August 2, 2007

Wednesday, August 1, 2007

Tuesday, July 31, 2007

Monday, July 30, 2007
Sunday, July 29, 2007

Saturday, July 28, 2007 11:45 PM CDT
PIXAR ANIMATION STUDIOS, LEUKEMIA & LYMPHOMA SOCIETY, AND THE NICHOLAS COLBY FUND
Pixar collaborated with the Leukemia & Lymphoma Society (LLS), and the LLS collaborated with the Nicholas Colby Fund. Together, we filled Pixar's screening room, not once but twice - a second private screening was scheduled this past week for today to accommodate over 400 patients/family members that participated in the two screenings of the movie Ratatouille.

 

Through the Nicholas Colby Fund's work with Children's Hospital Oakland, Stanford-Lucile Packard Children's Hospital, and the University of California San Francisco-Children's Hospital, we saw smiles on faces from children who previously participated in Nicholas Colby Fund events/experiences...and children we met today for the first time.

We saw parents from our previous events/experiences, parents from Camp Okizu (remember, September 17, 2006 journal entry under Journal History), and met new parents today.

"Nicholas, we love you and thank God for His love...loving you and helping us to know that you are never gone, never far...forever in our hearts and souls." Sharing these words and feelings of God's love was the language we all experienced today.

PHOTOS FROM TODAY AND UPCOMING EVENTS/EXPERIENCES
Please copy and paste the following web address into your browser to access the Nicholas Colby Fund 3rd Quarter 2007 photo album containing pictures and flyers of our continued work this quarter toward Helping Children Be Children:

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.byq6bxd2&x=1&y=gcteh1

PARTNERING
Remember we talked about our partnership with the Leukemia & Lymphoma Society (remember the July 4, 2007 and May 16, 2007 journal entries under the Journal History tab). This past week we spoke on their behalf to Citigroup/Citibank. What is so warm, wonderful, and special is that children and others affected by cancers are the focus of the partners we engage with as well.

***ANOTHER WAY YOUR DONATIONS HELP AND YOU CAN HELP***
WORKING TO SECURE ITEMS TO GO INTO THE "NEWEST EXPERIENCE"
The Nicholas Colby Fund is talking with Games Unlimited (toy store out of Danville, CA) toward securing items that will go into the backpacks - details below. Please let us know if you can help with monetary donations (P.O. Box for tax deductible donations is above) or relationships with toy, book, or electronic game/music vendors.

THE NEWEST EXPERIENCE
Through partnering with the Gabby Krause Foundation out of Colorado (remember, Nicholas was in Denver, Colorado for a few weeks), Samsonite has provided backpacks for all three children hospitals the Nicholas Colby Fund works with. The newest experience we are preparing to deliver toward Helping Children Be Children is backpacks full of fun, engaging toys, games, and books. The outcome of this experience is that one of the first things a newly diagnosed child with a life-threatening illness will see when hospitalized will be...a Nicholas Colby Fund backpack just for them.

We are planning a September 2007 start date and complete details about phasing delivery to Children's Hospital Oakland, Stanford-Lucile Packard Children's Hospital, and the University of California San Francisco-Children's Hospital will soon be shared. The backpacks will contain: hand-eye coordination items, art & creative items, general learning items (about math, writing, and reading), musical items, imagination items, fun stuff, and more.

 

NO JOURNALS WRITTEN:

Friday, July 27, 2007

Thursday, July 26, 2007

Wednesday, July 25, 2007

Tuesday, July 24, 2007

Monday, July 23, 2007
________________________________________
Sunday, July 22, 2007 11:34 PM CDT
"NICHOLAS IS STILL TEACHING OTHERS…"
Here it is July 2007 and every day, week, month, and now over a year we speak about Nicholas' love and spirit that is always with us…and us with him through God. And although we naturally speak about our precious son, it is nice to see and hear how others speak of Nicholas as well. Last week we heard two stories about Nicholas from Stanford-Lucile Packard Children's Hospital and Children's Hospital Oakland.

Many of you may remember that shortly after Nicholas' bone marrow transplant in 2005, LPCH created a book about Nicholas that tells a story for others. Using many pictures of Nicholas and his journey through the bone marrow transplant process, LPCH created the book, "Nicholas' Transplant-The story of Nicholas' Bone Marrow Transplant." This book helps new patients and their families prepare for the transplant. The pictures and story reveal steps from being admitted, engaging with the nurses/doctors, decorating the hospital room to personalize it, daily activities from being weighed to playing with child life specialists, chemotherapy and radiation therapy, physical therapy and warm conversations, leaving the hospital and staying at the Ronald McDonald House, and then going home.

- Well, what we heard last week from a staff member is that "Nicholas is still teaching others…" because the book continues to be part of the welcome and introduction for patients and their families. We are thankful that Nicholas "lived" with love everyday of his journey. Following is what a staff member said when the book was first created, "The photos are wonderful and tell such as a story even without the text…"

And last week hearing about the events/experiences the Nicholas Colby Fund has delivered to Children's Hospital Oakland, one doctor wrote the following. (By the way, here too, it is Nicholas that guides what we do so he teaches us as well as what we are hearing from the hospitals.)

- "…I had no idea that the Nicholas Colby Fund had been responsible for making so many activities and joy possible for our kids and their families…"

NICHOLAS AND LAKE TAHOE
This weekend Sheila and I spent a few days on the beach at Lake Tahoe…and just about with every wave, every ray of sun, every piece of sand, and glitter across the amazing blue water we thought of Nicholas. Warm, fun thoughts because Nicholas-too-spent time at Lake Tahoe. And bittersweet thoughts physically missing Nicholas.

And today, the last day, we were so fortunate to play and have fun with friends. It was the Nieuwsmas and their four girls. Remember, the four girls who often visited Nicholas at our home, in the hospital, at the Ronald McDonald House, and played the harp at Nicholas' celebration of life? We spent last night and all day today with them…"playing and having fun"…and thinking & talking about our precious Nicholas.

A YEAR AGO AT LAKE TAHOE…AND WE ARE BLESSED TO FEEL LOVE TODAY
The lodge we stayed in this weekend is the lodge we stayed in a year ago. Looking at the guestbook kept by the lodge, we read our entry from last year. Reading that entry was another blessing to us in terms of reflecting on God's love and Nicholas (again, although bittersweet physically missing Nicholas). Following are the words from that entry:

August 27, 2006

Words and expressions of thank you are just not quite fitting enough for allowing us to have a couple of nights in your "beautiful" home. For us, it was an extremely difficult decision to be away from our home where Nicholas joyfully lived; and the tranquility of just relaxing at the beach, pondering moments gone by and moments now experiencing in your time-gone-by home brought the right balance of God's amazing love for us and Nicholas. The love in the air were beautiful reminders, as well, of His perfect peace that He has for us along with His constant care for our Nicholas. Thank you from the bottom of our hearts.

Love,

Lamont and Sheila Gilbert

PIXAR ANIMATION STUDIOS, LEUKEMIA & LYMPHOMA SOCIETY, AND THE NICHOLAS COLBY FUND
Collaborating with the Leukemia & Lymphoma Society and their work with Pixar Animation Studios, the Nicholas Colby Fund's relationship with the three children's hospitals have helped to fill 235 seats at a July 28, 2007 private screening of Pixar's latest movie, Ratatouille, where it was created. Arranging patients and their families to visit and see Ratatouille at the Pixar Animation Studios was very successful and Pixar approved a second screening later in the day on July 28 to accommodate an overflowing number of patients desiring this experience.

NICHOLAS COLBY FUND EVENTS/EXPERIENCE
Events/experiences continue like our first year…with experiences such as the Ringling Brothers and Barnum & Bailey circus for children from the hospitals coming up next…and special fulfillment of wishes like one we will be fulfilling in the next couple of weeks of a computer for a patient who amazingly endures treatment and will realize a dream of attending college. (The June 10, 2007 journal entry provides a recap of our first year: patients, hospitals, events, and partners/organizations.)

THE NEWEST EXPERIENCE
The newest experience we are preparing to deliver toward Helping Children Be Children is backpacks full of fun, engaging toys, games, and books. The outcome of this experience is that one of the first things a newly diagnosed child with a life-threatening illness will see when hospitalized will be...a Nicholas Colby Fund backpack just for them.

We are planning a September 2007 start date and complete details about phasing delivery to Children's Hospital Oakland, Stanford-Lucile Packard Children's Hospital, and the University of California San Francisco-Children's Hospital will soon be shared. The backpacks will contain: hand-eye coordination items, art & creative items, general learning items (about math, writing, and reading), musical items, imagination items, fun stuff, and more.

 

NO JOURNALS WRITTEN:

Saturday, July 21, 2007

Friday, July 20, 2007

Thursday, July 19, 2007

Wednesday, July 18, 2007

Tuesday, July 17, 2007

Monday, July 16, 2007

Sunday, July 15, 2007
________________________________________
Saturday, July 14, 2007 11:40 AM CDT
***Please CLICK ON the View Photos tab at the top of the Home Page or the Camera icon below***

WHAT LIFE BRINGS…WHAT LOVE DOES…WHAT THOSE LIKE NICHOLAS MEAN TO LIFE AND LOVE
We know that Nicholas is not the only child who have left their loved ones physically; we know that Nicholas (like others) means the world to us (to others) in every way that time cannot erase. And we have experienced life in an excruciating way…that lingers even during moments of life that generate a smile and/or warmth to our hearts. Thankfully, through God we believe, feel, and experience blessings of love enabling us to trust our beliefs, savor our feelings, and joyfully experience these blessings knowing Nicholas is never gone, never far…forever in our hearts & souls.

Nicholas seems to hold us today as much as he loved to be held-remember how he loved (and loves) us to hold him, pat him, rock him, sing to him, read with him…? We trust and believe Nicholas just knows and feels he is forever held by us. And he is held by God! Do you remember the song, Held, that was sung during the June 2, 2006 Memorial Service?

Following are the words (it can be heard by accessing www.nicholascolbyfund.org, clicking on Sound Tracks, and then clicking on Held).

"Held" by Natalie Grant, sung on June 2, 2006 by Linda Freitas:

Two months is too little
They let him go they had no sudden healing
To think that providence would take a child from his mother while she prays is appalling

Who told us we'd be rescued
What has changed, and why should we be saved from nightmares
We're asking why this happens, to us who have died to live it's unfair

This is what it means to be Held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell we'd be Held

This hand is bitterness we want to taste it,
Let the hatred numb our sorrows
The wise hand opens slowly to lilies of the valley and tomorrow!

This is what it means to be Held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell we'd be Held

If hope is born of suffering,
If this is only the beginning
Can we not wait for one hour
Watching for our Savior

This is what it means to be Held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was-"when everything fell, we'd be Held"

We'd be Held
And this is what it is to be loved and to know
That the promise was when everything fell, we'd be Held

This is what it means to be Held!

REFLECTING ON MORE MEMORIES
We have always talked about and shared how Nicholas' amazing love and spirit lives on today, simply through his love and through his legacy: the Nicholas Colby Fund - Helping Children Be Children. Another memory within a memory that vibrantly illuminates our spirits is the book, "The Next Place" by Warren Hanson.

We have all the memories of Nicholas' life so rich, colorful, and penetrating with love. A life and last breath that brought (brings) tears…while knowing God was there and He is here, today. Nicholas infused lives with memories to share! Please refer to the July 25, 2006 journal entry, under Journal History, that describes the atmosphere and environment around Nicholas on May 25, 2006 that helped him to know he was and is loved.

Following are excerpts from "The Next Place" that are permanently at Nicholas' Oakmont Memorial Park site (engraved on the back of the upright memorial marker) and in our hearts and souls lovingly reminding us of Nicholas' connection with the words:

"I'll glide beyond the rainbows. I'll drift above the sky. I'll fly into the wonder, without ever wondering why.

I'll never be alone; I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one. And the circle of our spirits will shine brighter than the sun.

I'll have the love of those who loved me, and the warmth of those who cared…the happiness and memories and magic that we shared. I will cherish all the friendships I was fortunate to find, all the love and all the laughter in the place I leave behind. All these good things will go with me; they will make my spirit glow. And the light will shine forever in the next place that I go."

NICHOLAS COLBY FUND EVENTS/EXPERIENCE
Events/experiences continue like our first year…with experiences such as the Ringling Brothers and Barnum & Bailey circus for children from the hospitals coming up next…and special fulfillment of wishes like one we will be fulfilling in the next couple of weeks of a computer for a patient who amazingly endures treatment and will realize a dream of attending college. (The June 10, 2007 journal entry provides a recap of our first year: patients, hospitals, events, and partners/organizations.)

Also, collaborating with the Leukemia & Lymphoma Society and their collaboration with Pixar Animation Studios, we are working with the three children's hospitals arranging patients and their families to see Pixar's latest movie, Ratatouille, where it was created. We are working to fill 235 seats so these patients can visit the Pixar Animation Studios on July 28, 2007, and see the movie as well!

THE NEWEST EXPERIENCE
Our newest experience we are preparing to deliver toward Helping Children Be Children is backpacks full of fun, engaging toys, games, and books. The outcome of this experience is that one of the first things a newly diagnosed child with a life-threatening illness will see when hospitalized will be...a Nicholas Colby Fund backpack just for them.

We are planning a September 2007 start date and complete details about phasing delivery to Children's Hospital Oakland, Stanford-Lucile Packard Children's Hospital, and the University of California San Francisco-Children's Hospital will soon be shared. We will also share information about our collaboration with The Gabby Krause Foundation out of Denver, Colorado toward helping to make this new experience come to life.

The backpacks will contain:
- Hand, eye coordination items

- Art, creative items

- General learning items about math, writing, and reading

- Musical items

- Imagination items

- And more

 

NO JOURNALS WRITTEN:

Friday, July 13, 2007

Thursday, July 12, 2007

Wednesday, July 11, 2007

Tuesday, July 10, 2007

Monday, July 9, 2007

Sunday, July 8, 2007
________________________________________
Saturday, July 7, 2007 11:46 PM CDT
STINSON BEACH: SAND, WAVES, WAMRTH, BREEZE…NICHOLAS' SPIRIT EVERYWHERE
Today, Sheila and I took a drive to Stinson Beach. The sky was blue…the water a vibrant blue…the sand warm…the waves crashing creating a gentle roar & an un-mistakenly white color that crashing waves generate…the breeze was soothing…and Nicholas' spirit was everywhere-never gone, never far.

The drive was nice, the scenery amazing, and the connection with Nicholas and love shared with Nicholas-thankfully-continues to be so beautiful. We flew a kite for Nicholas and his spirit uplifted our hearts a little more (to calm our anxiety just a little from missing him physically).

Sheila found three heart-shaped rocks. The picture above on this Home Page is Sheila's hand holding three heart-shaped rocks; 3 different sizes for Nicholas, Sheila, & me (Lamont). And we also see them as three heart-shaped rocks for our other 3 boys with Nicholas' spirit all around, everywhere!

THE NICHOLAS COLBY FUND IN THE 3RD QUARTER OF 2007
The events and experiences for the 3rd quarter are being developed and we know that like our first event/experience provided by the Fund in 2006, the Ringling Brothers and Barnum & Bailey Circus will be one of the first events/experiences to begin the second event/experience year for patients from Children's Hospital Oakland, Stanford-Lucile Packard Children's Hospital, and the University of California San Francisco-Children's Hospital.

Please copy and paste the following web address into your browser to access the Nicholas Colby Fund 3rd Quarter 2007 photo album that will contain pictures of the flyers and smiles from patients as we continue our work toward Helping Children Be Children:

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.byq6bxd2&x=1&y=gcteh1

NEW EXPERIENCE TO BE PROVIDED
We are now preparing for a new experience in addition to the events/experiences delivered during the first event/experience year of the Nicholas Colby Fund that will be re-created this second year. And we are continually providing the nutritional packs that are immediately available on site for every parent of a child going into the Pediatric Intensive Care Unit at Children's Hospital Oakland (please refer to the March 17, 2007 journal entry under the Journal History tab).

Backpacks to children diagnosed with cancer and other life threatening illnesses! We are thankful we were able to provide Nicholas with lots of fun, interesting things to do while in the hospital. And we are grateful for the things many of you did to provide Nicholas with fun things along the way as well. Remember how we always transformed his hospital room into a fun, playful room (please refer to the April 1, 2005 journal entry and the third album [Day 132 leading to BMT…] under Links for the pictures by scrolling to April 21, 2005).

THE NEWEST EXPERIENCE we are preparing to deliver toward Helping Children Be Children will be backpacks full of fun, engaging toys, games, and books. We will soon communicate details about our collaboration with The Gabby Krause Foundation out of Denver, Colorado toward making this new experience come to life.

The backpacks will contain:
- Hand, eye coordination items

- Art, creative items

- General learning items about math, writing, and reading

- Musical items

- Imagination items

- And more

So one of the first things a newly diagnosed child will see when going into the room when hospitalized will be...a Nicholas Colby Fund backpack just for them.

 

NO JOURNALS WRITTEN:

Friday, July 6, 2007

Thursday, July 5, 2007
________________________________________
Wednesday, July 4, 2007 11:50 PM CDT
"FIREWORKS" AND VIBRANT COLORS OF LOVE WITHIN
Again, regardless of the time that goes by…it does not get easier, it just gets different.

Tonight we took some of Nicholas' toys that illuminate with flashing/swirling colors and created our own colorful, light display at his Oakmont Memorial Park site.

This Independence Day, although you and each of us have our lives to live, we wish you all more freedom from the everyday challenges as well as love to overcome heartaches! And we hope you see the everyday blessings that are touches of love to warm your hearts and brighten your lives in some way.

HELPING OTHERS IN THE WAYS WE EACH CAN
Everyone, everywhere helps another in small/big ways, directly/indirectly, and known/unknown ways. This coming Friday, the Lamorinda Sun (local newspaper for Lafayette, Moraga, Orinda), a separate component of the Contra Costa Times, is running an article about Nicholas' Terra Cotta bench, Nicholas, and the Nicholas Colby Fund. (The June 21, 2007 journal, under Journal History, talks about the Terra Cotta bench situation.)

NICHOLAS WE LOVE YOU AND YOUR SPIRIT
The Nicholas Colby Fund, Leukemia & Lymphoma Society (LLS), and CaringBridge are a few of many entities that focus on helping...and positive impacts on what we call "Helping Children Be Children." And it is especially heartwarming to experience the concerted efforts of entities like these that generate love in the many ways they do (we do).

Recently, at the request of the LLS we collaborated with them to help toward their mission. We spoke on their behalf at one of their corporate events because we recognize that the outcomes of all the entities like ours, and similar to the LLS and CaringBridge, is for the good of children and others impacted by cancer and other life-threatening illnesses. To us the outcomes from the work of these entities, along with the life journeys that some children have to take is equally important. And our work is focused on the daily journey as well as the outcomes…helping children to smile, laugh, and have another moment or two just being a child at play.

Nicholas, we love you and reach out to you and with you-Helping Children Be Children. And know, son, "just know," that we love you every moment of every day! We trust the brilliant, vibrant, loving colors we see are reflections of your love and the love of many beautiful children at God's side.

 

NO JOURNALS WRITTEN:

Tuesday, July 3, 2007

Monday, July 2, 2007

Sunday, July 1, 2007

Saturday, June 30, 2007 6:51 PM CDT
JULY
We do not count the days, weeks, or months; however, we do reflect and say & express "I love you" over, and over, and over to Nicholas. This weekend we talked more about knowing Nicholas is not missing us because with God-and God's speed-Nicholas is simply "playing and having fun" as if he was at school for the day or an afternoon get-away with loving friends. While we know that time is slipping by, our love and feeling Nicholas' love is held ever so tightly next to our hearts and joined with our souls. We are thankful for God's love allowing us to "just know" that Nicholas knows he is loved and our love is shared through God…forever and ever. And Nicholas is full of love and "light" illuminating everything within and around him.

 

As July begins we will start the second year of the Nicholas Colby Fund and our work to surpass the 500 mark set in the first year. And this, too, is just a number-the loving touch of Nicholas and his legacy through the Nicholas Colby Fund does not need to be measured. The smiles, laughter, and love shared through Nicholas' legacy are simply beyond measure and we thank God for this as well! (Please refer to the June 10, 2007 journal, under Journal History, for details about the first year's milestones...Helping Children Be Children.)

JUNE 2007 NICHOLAS COLBY FUND EXPERIENCES

- June 7, 2007 Sesame Street Live experience for patients from Stanford-Lucile Packard Children's Hospital filling the luxury suite

- June 10, 2007 Sesame Street Live experience for patients from the University of California San Francisco-Children's Hospital

- June 15, 2007 Ball4Real Streetball Tour experience (featuring the best streetball basketball players in the world made famous on ESPN's "Streetball") for patients from Children's Hospital Oakland

- Continually, the "nutritional packs" are immediately available on site for every parent of a child going into the Pediatric Intensive Care Unit at Children's Hospital Oakland

Pictures for June are on the Nicholas Colby Fund 2nd Quarter 2007 photo album:

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x

 

NO JOURNALS WRITTEN:

Friday, June 29, 2007

Thursday, June 28, 2007
________________________________________
Wednesday, June 27, 2007 11:48 PM CDT
FEELING CLOSED IN…AND PRAYING TO FIND MY WAY OUT AND TO NICHOLAS
When traveling by air, Sheila would always get on the plane last-not last out of our family, last out of all passengers-because she wanted to be in closed surroundings as little as possible. I smiled thinking about this today, not because of Sheila wanting to be on the plane last…because it generated more happy thoughts of being with Nicholas (and our other boys). Nicholas really liked to travel and was a perfect traveler in all aspects of patience, temperament, and the joy of discovering things along the way as well as at our destinations. (There are plenty of pictures of Nicholas traveling on the three albums under Links on the Home Page.)

I thought about these things today because in some way it helped me to understand how I have been feeling lately. Sporadically I have felt like walls were closing in on me and I could not find a "door" to see Nicholas. It has been a Closter phobic feeling…and I have not liked it at all. However, this experience has helped me to understand and be more sensitive to Closter phobic situations of others. For me, remembering that God is God and His love and light shines brighter than one could ever imagine helps to free myself from any dark notion, any notion of being closed in. And I must remember and not let go for a moment of the truth that I feel Love's presence everywhere and see the light of Love through Nicholas' presence that is never gone, never far...forever in our hearts & souls.

LATER THIS WEEK
Later this week we will share information about another collaborative effort by the Nicholas Colby Fund. We will share this work and its link to our tag line: Helping Children Be Children. And as June comes to a close we will begin the second year of the Nicholas Colby Fund and our work to surpass the 500 mark set in the first year. (Please refer to the June 10, 2007 journal, under Journal History, for details about the first year's milestones...Helping Children Be Children.)

***BECAUSE WE TALKED ABOUT A PICNIC THIS PAST SUNDAY***
Did you see the 3 pictures by clicking on View Photos above or the camera icon below?

 

NO JOURNALS WRITTEN:

Tuesday, June 26, 2007

Monday, June 25, 2007
________________________________________
Sunday, June 24, 2007 9:04 PM CDT
ONE YEAR & ONE MONTH AGO…AND TODAY
Tomorrow (Monday, June 25, 2007) it will be one year & one month that Nicholas has been in Heaven! So today, what was experienced and felt was sweet bitter sweet.

TODAY
Early afternoon we were at Nicholas' Oakmont Memorial Park site (here in Lafayette) and removed the terra cotta birdbath. We brought it back home and into our yard. We are thinking about replacing the terra cotta bench that was taken from the site by someone, as well as getting another terra cotta birdbath at the same time, and then have them bolted to a cement foundation at Nicholas' site. Although the bench is gone, the love felt and experienced thankfully remains. You know what I am going to say now…"Nicholas is never gone, never far…forever in our hearts & souls."

FUNNY THING REMEMBERED: When we returned home we placed the birdbath back into its original spot and did a little gardening. Nicholas was always so helpful in the garden and yard as well. I remembered something Nicholas said that helped me to smile today:

A lot of squirrels roam our back yard and it is common to see them on the back patio running around. When Nicholas sat in the family room and saw the squirrels getting into mom's potted plants, Nicholas would call out to mom: "Mom, a squirrel is in your plants!" He seemed to enjoy tattling on the squirrels to see mom chase the squirrel away. We could hear his voice now and see the joy on his face-a simple pleasure that we treasure.

THIS AFTERNOON
Later this afternoon we went on a picnic…yes, Nicholas enjoyed picnics too (who doesn't). We took a very short drive up to St. Mary's College (Nicholas has been there too.) We stopped at a place near the soccer field that happened to be the spot we last went on a bicycle ride/picnic with our other three boys, at the ages of 14, 10, and 8, before Nicholas was born. A ladybug greeted us as we were setting up our picnic. And then there were butterflies. As we sat and gazed into the beautiful blue, serene sky there were planes very, very high above occasionally providing a soothing roaring/soaring sound. There were birds floating, gliding, and flapping around.

As we were enjoying all these beautiful things we were reflecting on God's love and what love provides to the heart & soul. It was now 4:00 in the afternoon and while Sheila was asleep (resting on the picnic blanket), in the Eastern sky the moon was rising. It was a 3-quarters moon above the rolling hills at St Mary's College.

All of these blessed moments, of course, had us longing for Nicholas physically and we again thought about God's love to bring us comfort. And then I thought about the book, The Next Place (read to Nicholas one year and one month ago tomorrow). We thought about the back of the upright marker at Nicholas site that contains excerpts from The Next Place. Those excerpts were felt in our hearts & souls...remember the excerpts:

"I'll glide beyond the rainbows. I'll drift above the sky. I'll fly into the wonder, without ever wondering why.

I'll never be alone; I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one. And the circle of our spirits will shine brighter than the sun.

I'll have the love of those who loved me, and the warmth of those who cared…the happiness and memories and magic that we shared. I will cherish all the friendships I was fortunate to find, all the love and all the laughter in the place I leave behind. All these good things will go with me; they will make my spirit glow. And the light will shine forever in the next place that I go."

LATER THIS WEEK
Later this week we will share information about another collaborative effort by the Nicholas Colby Fund. We will share this work and its link to our tag line: Helping Children Be Children. And as June comes to a close we will begin the second year of the Nicholas Colby Fund and our work to surpass the 500 mark set in the first year. (Please refer to the June 10, 2007 journal, under Journal History, for details about the first year's milestones...Helping Children Be Children.)

 

NO JOURNALS WRITTEN:

Saturday, June 23, 2007

Friday, June 22, 2007
________________________________________
Thursday, June 21, 2007 11:59 PM CDT
A SAD DAY IN A VERY DIFFERENT WAY
As you know, we visit Nicholas' Oakmont Memorial Park site here in Lafayette just about daily. We were there yesterday evening (Wednesday), and this evening when I arrived at the site I was greeted by an apparent terrible, terrible act: The terra cotta bench was gone. This is the bench in the above Home Page picture (seen in all the Nicholas Colby Fund albums) that we had placed onto the site a year ago. It is the terra cotta bench that Nicholas sat on, played on, and was at our house during Nicholas' physical life.

I was stunned! I was and simply cannot believe that someone would take ANY item from this or any site of a loved one in these situations (or any situation). While we want to believe in a positive way we thought:

- Maybe someone removed it to surprise us with something like…engraving… But why on an item like this?

- We thought maybe it was damaged…SOMEHOW…by someone on the site and they wanted to remove and replace it before we saw the situation. However, because the grounds crew knows that we visit the site almost daily…we figured they would have called us today to inform us.

- We just do not know WHY.

Because it was evening when I arrived, the Oakmont office was closed. I left a message with their answering service and left a voice mail for the grounds crew supervisor. I then called the police and they arrived and took a report.

So, this is a very sad day in a very different way. I was hoping to share some news on the journal tonight with all of you about another collaborative effort by the Nicholas Colby Fund with another organization. I do not know why the bench was taken and the situation has physically and emotionally exhausted me (and I do recognize that the terra cotta bench is just a physical item). We will go to bed tonight also praying for this situation, thinking and praying that this situation will be alright…for the person(s) involved and for someway to help us to understand and for it to be alright for us too-somehow!

PROCLAMATION READ AND DELIVERED TO THUNDER
Following is the wording of the proclamation read and delivered to Thunder at our first fundraiser dinner this past Monday. Yesterday (Wednesday) we delivered this proclamation to the Warriors' executive staff as well.

With the Nicholas Colby Fund reaching a significant milestone this month in its first year-directly helping 500 patients and their family members to smile a little more-the timing of this proclamation seems sweet. Sweet in that Warriors like many of you have helped us to generate one more smile, one more moment of laughter, one more opportunity to have fun, one more chance to play, and one more memory to cherish simply being a child. However, then it is bittersweet because Nicholas is physically not with us…and sweet bitter sweet because Nicholas we trust & believe is angelically with God and knows all the love we have and continue to have for him.

Here is the wording:

On this 18th day of June 2007, the Nicholas Colby Fund (NCF) hereby formerly proclaims that the Golden State Warriors professional basketball organization and Thunder (their mascot) have proactively infused their caring community actions into a little boy-Nicholas Colby Gilbert-generating great experiences for Nicholas. Nicholas' amazing spirit, energy, enthusiasm, joy, and endless passion for caring about others continue to amaze us all-providing an inspiration of love and life.

And the NCF continually expresses its love and appreciation for Thunder as well. As an amazing child, Nicholas, full of life, lived constantly surrounded by love and sharing love through his angelic caring ways. His legacy of love, caring, and sharing continues in a myriad of ways including the Nicholas Colby Fund - Helping Children Be Children. He is never gone, never far...in our hearts & souls forever.

We further proclaim that the Warriors organization caring, loving actions for the good of the Nicholas Colby Fund exponentially helps the NCF to deliver amazing events / experiences for children with cancer, a degenerating condition, and other life threatening illnesses. This proclamation expresses the generosity of the Warriors supporting the NCF's actions: Helping Children Be Children.

The Warriors organization continues to be ubiquitous in Nicholas' life and legacy. Not for publicity, not for praise, the Warriors organization showed up and continues to show up! Whether people are looking or not they demonstrate love, caring, and sharing. They have been much more than a community partner-they have been Nicholas' friends.

Thunder was "there" for Nicholas: playing and having fun with Nicholas at our home, in the hospital, at Warriors games, and was the master of ceremony for Nicholas' Celebration of Life. The Warriors and Thunder's caring nature in communities is realized, not because they have to...because they care.

Thunder it has been known, and now it is formerly known, that we love you and the Golden State Warriors professional basketball organization. Thunder, you are Nicholas' hero, our hero, and a hero to tens of thousands of people everywhere-near and far. And Nicholas' spirit interacts with yours harmoniously creating a great time for tens of thousands of more people as time goes by.

Gina Baker, Lamont Gilbert, Sheila Gilbert
CEO & Founder, President, Vice President

 

NO JOURNALS WRITTEN:

Wednesday, June 20, 2007

Tuesday, June 19, 2007
________________________________________
Monday, June 18, 2007 11:59 PM CDT
THANK YOU A MILLION TIMES IS NOT ENOUGH
Our first Nicholas Colby Fund fundraiser dinner was amazingly successful…because of Nicholas, because of you, because of Thunder (Golden State Warriors mascot), and because of the Warriors organization! All of you in attendance and with us in spirit, thank you a million times and more! Family, neighbors, families from Nicholas' Diablo Valley Montessori School in Lafayette, families from church, colleagues, friends from Nicholas' brothers' high school and college, friends met along the way, and new friends met tonight...

As you know, 100-percent of the funds coming into the Nicholas Colby Fund goes to the events / experiences we deliver…Helping Children Be Children. Remember, the June 10, 2007 journal entry (under the Journal History tab) highlights the events / experiences and our partners & organizations that have helped us to uplift spirits…generating smiles to over 500 patients and their family members during the first year.

THE RAFFLE GENERATED: $1,045.00 to the Nicholas Colby Fund

THE DINNERS GENERATED: TBD and within 30 days Chevys Restaurant will mail a check for 25-percent to the Nicholas Colby Fund. We will share the amount once we are informed. However, all of you helped to generate something else…love and fun toward Nicholas! It was astonishing to see the incredible number of people loving Nicholas and supporting his legacy.

The restaurant was gratefully overwhelmed and called in for more help. Watching and hearing Chevys' staff add seats and tables was a beautiful site in one respect…and in another respect we are grateful for those of you who were patient.

THUNDER SURE DID ENTERTAIN THE KIDS AND ADULTS!
The Home Page picture above and a couple seen by clicking on View Photos are just a few of the many pictures showing you and Thunder playing and having fun. Please copy and paste the following web address into your browser to access the Nicholas Colby Fund 2nd Quarter 2007 photo album to see all the pictures:

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x

RAFFLE WINNERS OF THE GOLDEN STATE WARRIORS AUTOGRAPHED ITEMS (each with a letter of authenticity)

The CLOUSES
- 2006/2007 Golden State Warriors autographed team basketball

KIRK
- Baron Davis autographed swingman jersey

LORI
- Adonal Foyle autographed hat

JOEY
- Adonal Foyle autographed poster

The MOELLERINGS
- Sarunas Jasikevicius autographed basketball

SUE
- "SURPRISE" ITEM: Self-action portrait of Thunder on canvas-red (38" x 26")

SURPRISE GIFT FROM THUNDER TO NICHOLAS & THE NICHOLAS COLBY FUND
- Self-action portrait of Thunder on canvas-blue (38" x 26")

PROCLAMATION READ AND DELIVERED TO THUNDER
On this 18th day of June 2007, the Nicholas Colby Fund (NCF) hereby formerly proclaims that the Golden State Warriors professional basketball organization and Thunder (their mascot) have proactively infused their caring community actions into a little boy-Nicholas Colby Gilbert-generating great experiences for Nicholas. Nicholas' amazing spirit, energy, enthusiasm, joy, and endless passion for caring about others continue to amaze us all-providing an inspiration of love and life.

And the NCF continually expresses its love and appreciation for Thunder as well. As an amazing child, Nicholas, full of life, lived constantly surrounded by love and sharing love through his angelic caring ways. His legacy of love, caring, and sharing continues in a myriad of ways including the Nicholas Colby Fund - Helping Children Be Children. He is never gone, never far...in our hearts & souls forever.

We further proclaim that the Warriors organization caring, loving actions for the good of the Nicholas Colby Fund exponentially helps the NCF to deliver amazing events / experiences for children with cancer, a degenerating condition, and other life threatening illnesses. This proclamation expresses the generosity of the Warriors supporting the NCF's actions: Helping Children Be Children.

The Warriors organization continues to be ubiquitous in Nicholas' life and legacy. Not for publicity, not for praise, the Warriors organization showed up and continues to show up! Whether people are looking or not they demonstrate love, caring, and sharing. They have been much more than a community partner-they have been Nicholas' friends.

Thunder was "there" for Nicholas: playing and having fun with Nicholas at our home, in the hospital, at Warriors games, and was the master of ceremony for Nicholas' Celebration of Life. The Warriors and Thunder's caring nature in communities is realized, not because they have to...because they care.

Thunder it has been known, and now it is formerly known, that we love you and the Golden State Warriors professional basketball organization. Thunder, you are Nicholas' hero, our hero, and a hero to tens of thousands of people everywhere-near and far. And Nicholas' spirit interacts with yours harmoniously creating a great time for tens of thousands of more people as time goes by.

 

Gina Baker, Lamont Gilbert, Sheila Gilbert
CEO & Founder, President, Vice President
________________________________________
Sunday, June 17, 2007 10:13 PM CDT
FATHER'S DAY
I know and remember exactly what Nicholas would have done today. "Happy Father's Day" in a soft, warm, loving way would have been the first thing Nicholas said this morning as he whispered in my ear in bed or stated running down the hall-or just after midnight last night. He would have shared love! Oh, what a GREAT son is Nicholas and so full of love as well as respect (even during terrible times in the hospital as nurse Colleen wrote about in a guestbook entry today).

Late morning there were quiet moments at Nicholas' Oakmont Memorial Park site…or as the bench reads: Saint Nicholas Park Way, The Ridgetop. Remember? Taking in the warm, calm breeze…the birds…the butterflies…and all the things of beautiful moments hoped for was a blessing. I was alone and then my oldest son, Christopher, drove up to the "ridgetop" and we shared God's love.

This afternoon the boys, Sheila, and I went out to eat…then ice cream…then we took in the coastal breeze of the Bay as we walked and watched kites big (really big, like 25 feet) to small ones (like most of us have flown as a child or adult) at a kite park on the Berkeley Marina. This is a spot Nicholas liked to have picnics…sometimes in the car to watch the sunset as well as the stars and the moon with the waves crashing in. Oh, how memorable are so many wonderful things in my life. Oh, how sweet these memories are to my mind. And oh, how I miss Nicholas…although thankful he touches my heart and soul. This is my life!

As another day comes to an end…another sets to begin. As another week begins…my life extends to all of the tomorrows and not one day goes by without Nicholas' love on my mind. Remember, sometimes I just sit and think…praying about Nicholas, the boy that changed so much in me. Thankful to be the father of my boys whether they are near or far. Thankful God is our father and trusting He is here and He is "there" with Nicholas.

LOOKING FORWARD TO SEEING THOSE THAT CAN MAKE IT-REMEMBERING NICHOLAS
Remember, you are invited to join us at Chevys Restaurant tomorrow, MONDAY, June 18, 2007 between 11:00 AM - 10:30 PM at 650 Ellinwood Way in Pleasant Hill, CA for a Nicholas Colby Fund fundraiser lunch and dinner.

- The main gathering will be from 6:00 PM - 9:00 PM and Sheila & I will be there during this time period.

- Special appearance by Thunder, mascot of the Golden State Warriors professional basketball team, between 7:00 PM - 8:00 PM.

- Raffle for the GREAT Warriors autographed items at 8:00 PM, with tickets being sold from 6:00 PM - 8:00 PM at Chevys.

- Raffle tickets are "one for $5.00" and "five for $20.00" and of course ALL of the proceeds go to the events / experiences the Nicholas Colby Fund delivers. The June 10, 2007 journal (under Journal History) highlights the events / experiences and our partners & organizations that have helped us to uplift spirits…generatig smiles to over 500 patients and their family members during the first year.

 

NO JOURNALS WRITTEN:

Saturday, June 16, 2007

Friday, June 15, 2007
________________________________________
Thursday, June 14, 2007 9:55 PM CDT
THIS WEEK HAS BEEN…VERY DIFFERENT (Although love is constantly felt)
Remember how we have been saying, "It does not get easier, it gets different"? And remember Nicholas always loved God, knowing God loved (loves) him, we love him, and love surrounded (surround) him from many of you! These loving truths keep us, however, this week for some reason it has been difficult in very different-unexplainable-ways. The smiles on our faces are real…and they are not. We have gotten through the days & nights…and in some ways we have not.

While we keep smiling (when not just sad & crying) and while we keep going into each day & every night trusting and believing God's love…we trust and believe God will be with us to see us through our lives. Allowing us to see our boys grow into their lives. And guide us into everlasting life with Nicholas.

So while it has been so "different" this week we are so fortunate that God's love does not get different-His love is consistently with us!

FUN FUNDRAISER COMING UP JUNE 18, 2007-REMEMBERING NICHOLAS
See the flyer by clicking on View Photos and the all the autographed auction items by accessing the Nicholas Colby Fund 2nd Quarter 2007 photo album. Just copy and paste the following web address into your browser:

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x

Remember, please join us at Chevys Restaurant on June 18, 2007 between 11:00 AM - 10:30 PM at 650 Ellinwood Way in Pleasant Hill, CA for a Nicholas Colby Fund fundraiser lunch and dinner. The June 6, 2007 journal (under Journal History) has complete details, including a list of the great raffle items provided by the Golden State Warriors.

- The main gathering will be from 6:00 PM - 9:00 PM and Sheila & I will be there during this time period.

- Special appearance by Thunder, mascot of the Golden State Warriors professional basketball team, between 7:00 PM - 8:00 PM.

 

NO JOURNALS WRITTEN:

Wednesday, June 13, 2007

Tuesday, June 12, 2007

Monday, June 11, 2007
________________________________________
Sunday, June 10, 2007 9:54 PM CDT
NICHOLAS…HELPING US & HELPING CHILDREN BE CHILDREN
Every day, week, month, and now over one year since Nicholas has been in Heaven we painfully miss Nicholas physically…and we are thankful God's love allows us to spiritually be with Nicholas and Nicholas with us. Remember, Nicholas is never gone, never far…in our hearts & souls forever. Nicholas, "we just know…" Nicholas was (as you probably read throughout these journals) amazingly loving & caring and his giving presence continues today through his legacy: The Nicholas Colby Fund - Helping Children Be Children.

The month of June 2007 has started out with back-to-back Sesame Street Live - Elmo Makes Music events for over two dozen patients and their families from Stanford-Lucile Packard Children's Hospital and the University of California San Francisco-Children's Hospital.

In Nicholas' first year in Heaven, he and the Nicholas Colby Fund have directly helped over 500 patients and their family members to smile a little more than they have been. One more smile, one more moment of laughter, one more opportunity to have fun, one more chance to play, and one more memory to cherish simply being a child.

OUR EVENTS & EXPERIENCES over the last year for patients from the Bay Area children's hospitals:
- Ringling Brothers and Barnum & Bailey Circus
- Professional basketball: Golden State Warriors, Harlem Globetrotters, and Streetball
- Disneyland
- Disney on Ice
- Professional football: San Francisco 49ers
- Motocross
- Professional bull riding
- San Francisco ballet
- Magic on Ice
- The Wiggles
- Sesame Street Live

- Nutritional Packs constantly on site for parents of a child going into the pediatric ICU
- Thanksgiving Day dinners
- New Year's Eve dinners and party favors
- And several other experiences created toward Helping Children Be Children

PARTNERS AND ORGANIZATIONS on our events & experiences have been our loving fortune, including all of you who directly and indirectly support our and your work:
- The Golden State Warriors professional basketball organization
- LeapFrog International
- Diablo Foods of Lafayette
- Admac Digital Imaging of Emeryville
- Games Unlimited of Danville
- Learning Technology Partners
- Hartmann Studios
- AAA, California State Automobile Association
- California Café of Palo Alto
- Mimico, and Golden West Incorporated

WHAT'S COMING UP
(On June 15, 2007 - see the Nicholas Colby Fund flyer above)
The Nicholas Colby Fund is sending patients and their families from Children's Hospital Oakland into our luxury suite to experience Ball4Real Streetball Tour (basketball). It is a 30-city tour that features top stars made famous on ESPN's "Streetball," the best streetball basketball players in the world.

(On June 18, 2007 - see the flyer by clicking on View Photos, and all the autographed auction items by accessing the Nicholas Colby Fund 2nd Quarter 2007 photo album. Just copy and paste the following web address into your browser)

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x

Remember, please join us at Chevys Restaurant on June 18, 2007 between 11:00 AM - 10:30 PM at 650 Ellinwood Way in Pleasant Hill, CA for a Nicholas Colby Fund fundraiser lunch and dinner. The June 6, 2007 journal (under Journal History) has complete details, including a list of the great raffle items provided by the Golden State Warriors.

- The main gathering will be from 6:00 PM - 9:00 PM and Sheila & I will be there during this time period.

- Special appearance by Thunder, mascot of the Golden State Warriors professional basketball team, between 7:00 PM - 8:00 PM.

 

Saturday, June 9, 2007

(no journal written)
________________________________________
Friday, June 8, 2007 11:40 PM CDT
(Today)
SAD AFTERNOON, JOYOUS EVENING, AND THANKFULLY ALWAYS LOVING THOUGHTS AND FEELINGS
Camilia is a young girl Nicholas met in the hospital and a young girl who became our friend. We were very sad this afternoon because…we attended her funeral. The night before Camilia passed away, she said something that lifted the spirits of those around her. The nurse and Camilia's mother told us of this loving moment wherein Camilia said she saw Nicholas at the foot of her bed…and said seeing Nicholas helped her to not be afraid...she was joyous and knew she was loved.

This evening there were joyous moments, Nicholas' third brother (Matt) graduated from high school along with family friends Jordan, Allie, Becky, Joe, Connor, Brett, Dustin, Stuart, another Joe, and many others.

Thankfully, our trust in God helps us to experience loving thoughts and feelings daily, although every single day there is sadness and pain deep within us. Yes, like we have learned and experience…it does not get easier, it gets "different." And thankfully, God is the same loving God everyday guiding and massaging our hearts every aspect of our lives. For Nicholas, we smile just imagining how perfect and pure every everything is for him as he is feeling, hearing, smelling, tasting, seeing and "playing & having fun" being more than just part of God's wonderful love.

NICHOLAS…HELPING CHILDREN BE CHILDREN
(This coming Sunday afternoon at 1:00)
Sunday afternoon patients from the University of San Francisco-Children's Hospital will be guests of Nicholas and the Nicholas Colby Fund at Sesame Street Live's, "Elmo Makes Music." Once again, we are so glad these children will be focusing on fun and not medicine...even if it is just another moment to smile!

(On June 15, 2007 - see the Nicholas Colby Fund flyer by clicking on View Photos)
The Nicholas Colby Fund is sending patients and their families from Children's Hospital Oakland into our luxury suite to experience Ball4Real Streetball Tour (basketball). It is a 30-city tour that features top stars made famous on ESPN's "Streetball," the best streetball basketball players in the world.

(On June 18, 2007 - see the flyer and the autographed auction items by accessing the Nicholas Colby Fund 2nd Quarter 2007 photo album by copying and pasting the following web address into your browser)

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x

Remember, please join us at Chevys Restaurant on June 18, 2007 between 11:00 AM - 10:30 PM at 650 Ellinwood Way in Pleasant Hill, CA for a Nicholas Colby Fund fundraiser lunch and dinner. The June 6, 2007 journal (under Journal History) has complete details, including a list of the great raffle items provided by the Golden State Warriors.

- The main gathering will be from 6:00 PM - 9:00 PM and Sheila & I will be there during this time period.

- Special appearance by Thunder, mascot of the Golden State Warriors professional basketball team, between 7:00 PM - 8:00 PM.

 

Thursday, June 7, 2007

(no journal written)
________________________________________
Wednesday, June 6, 2007 10:17 PM CDT
NICHOLAS…HELPING CHILDREN BE CHILDREN (Thursday night)
Tomorrow night (Thursday) patients from Stanford-Lucile Packard Children's Hospital will be guests of Nicholas and the Nicholas Colby Fund at Sesame Street Live's, "Elmo Makes Music." We are so glad these children will be focusing on fun and not medicine. And for us, helping children be children massages our hearts as Nicholas' love continues to beat and reach others.

Elmo, The Count, Cookie Monster, Big Bird, Bert & Ernie and all their funny and furry friends will be taking to the stage to share the magical world of music with the children.

CHEVYS FUNDRAISER LUNCH AND DINNER (June 18)
Please join us at Chevys Restaurant on June 18, 2007 between 11:00 AM - 10:30 PM at 650 Ellinwood Way in Pleasant Hill, CA off highway 680 between Concord and Walnut Creek. For reference their phone number is (925) 685-6651.

- Chevys will donate 25 percent of the sales to the Nicholas Colby Fund, helping us toward our work of Helping Children Be Children.

***A special flyer must be presented to the server at the time of checkout***
If you were not on the email distribution containing the flyer, flyers will be available between 6:00 PM - 9:00 PM from Kimmy Abbas (our coordinator) at the restaurant.

- The main gathering will be from 6:00 PM - 9:00 PM and Sheila & I will be there during this time period.

- SPECIAL APPEARANCE BY THUNDER, mascot of the Golden State Warriors professional basketball team, between 7:00 PM - 8:00 PM.

- SPECIAL RAFFLE ITEMS THANKS TO THE WARRIORS ORGANIZATION, and raffle tickets will be sold from 6-7:30 PM with the raffle held at 8:00 PM. The items are:

-2006/2007 Golden State Warriors autographed team basketball
-Baron Davis autographed swingman jersey
-Adonal Foyle autographed hat
-Adonal Foyle autographed poster
-Sarunas Jasikevicius autographed basketball

***Each item will have a letter of authenticity***

As you have seen and heard, the Warriors organization has walked with Nicholas before the leukemia, during the leukemia, at the Celebration of life, and continues to walk with and for Nicholas and all the children we are fortunate to help. Golden State Warriors, "We Believe!" Thank you Bobby, Neda, Brian, Jo-Marie, and Thunder!

 

Tuesday, June 05, 2007

(no journal written)
________________________________________
Monday, June 4, 2007 10:09 PM CDT
NICHOLAS, NICHOLAS, NICHOLAS, AND ALL OF THESE BEAUTIFUL CHILDREN WE ARE BLESSED TO ENGAGE
The "Home Page photo" above and the first two pictures of the "3 View Photos" show the flyers for the next three Nicholas Colby Fund experiences. We have been asked about the photos, especially the props in the pictures:

- Yes that is Nicholas' Elmo in the two pictures about the Sesame Street Live events June 7 and June 10 for Stanford-Lucile Packard Children's Hospital and the University of California San Francisco-Children's Hospital, respectively

- Yes that is Nicholas, tan pants and jacket, in the picture for those flyers in front of the Dean Lesher Regional Center for the Arts (after a performance he and his classmates went to see)

- Yes that is the outdoor basketball hoop & net at our house that Nicholas shot baskets into. And yes, the pictures in that flyer for the June 15 streetball basketball tour for Children's Hospital Oakland are pictures of Nicholas playing basketball with the same hoop & net

Note: All of the flyers for the dozens of experiences/events the Nicholas Colby Fund has provided for patients and their families contain pictures of Nicholas at corresponding events…and props like basketball jerseys, basketballs (regular and Harlem Globetrotters), characters (like Elmo, Mickey/Minnie Mouse, stick pony, etc.), books (like Martin Luther King, Jr) are Nicholas'.

NICHOLAS IN GERMANY?
Dear friends, Tina and Mitch, from Germany are on a trip visiting castles, waterfalls, the countryside and so much more of Germany. They decided to take pictures of Nicholas with them. Today we received dozens of their pictures and they are absolutely stunning: majestic, serene, and reflective.

And several of the pictures are a picture-in-a-picture as they held up a picture of Nicholas in front of a live scene in Germany behind Nicholas' picture. They then took a picture creating new pictures. One is now Nicholas and a rainbow in Germany…and Nicholas in front of majestic mountains in another. Remember, Nicholas loved to paint rainbows and said he was the king…so these pictures brought smiles to our faces.

Not only is Nicholas with the King, God, he was playing the king in Germany. Thank you for the new memories and reflections of God's love, Nicholas' love, and love begetting love.

 

Sunday, June 03, 2007

(no journal written)

 

Saturday, June 2, 2007

(no journal written)
________________________________________
Friday, June 1, 2007 11:59 PM CDT
A VIEW OF LOVE
Last night's journal (Wednesday) talked about a phrase-"I need to tell you something"-that changed every aspect of our lives and our view within the world. Thankfully, our view of God and His love seemingly became even stronger in our lives. This enabled Nicholas to live in ways he would not have been able to…and live now in ways that help us to be stronger today amidst daily-routine living that could make living excruciatingly hard.

Today I received a tiny book. The title is simple and most of you have read about the title or heard about the title's meaning. The title is-Footprints, by Margaret Fishback Powers-and talks about "footprints" along the pathway of life. Remember, it starts out by saying:

"One night I dreamed a dream, I was walking along the beach with my Lord. Across the dark sky flashed scenes from my life. For each scene I noticed two sets of footprints in the sand, one belonging to me and one to my Lord…"

The meaning continued by saying that when the person looked back over his/her life, that person realized that at the lowest and saddest times of their life there was only one set of footprints. Remember, the thinking was that God was not there during those bad times and the meaning concludes by saying:

"My precious child, I love you and will never leave you, never, ever during your trials and testings. When you saw only one set of footprints it was then that I carried you."

Back to last night's journal (Wednesday). The book I received today was given to me by a friend who had not yet read today's journal and she marked one of the inspirational messages. Following is that message that lovingly has a connection about "fear" that we talked about in last night's journal:

"If the Lord be with us, we have no cause of fear. His eye is upon us. His arm over us. His ear open to our prayer-His grace sufficient. His promise unchangeable." By John Newton.

UPCOMING EVENTS/EXPERIENCES
Following are the upcoming Nicholas Colby Fund events/experiences for patients and their families from Stanford-Lucile Packard Children's Hospital, The University of California San Francisco-Children's Hospital, and Children's Hospital Oakland:

June 7, 2007
Luxury Suite at Oracle Arena
Elmo, The Count, Cookie Monster, Big Bird, Bert & Ernie and all their funny and furry friends are taking to the stage to share the magical world of music with children. It will be an opportunity for them to count along with The Count, visit Elmo's World and do the Crumb-A-Rumba with Rosita-all this, and much more at Sesame Street Live's "Elmo Makes Music."

June 10, 2007
Luxury Suite at Oracle Arena
Sesame Street Live's "Elmo Makes Music

June 15, 2007
Luxury Suite at Oracle Arena
Ball4Real Streetball Tour (basketball). 30-city tour that features top stars made famous on ESPN's "Streetball," the best streetball basketball players in the world

The sizzling one-on-one face-offs. The crazy dunks. And much more will be brought to them by the masterminds and basketball talent behind the previous years' AND 1 Mixtape Tour. Players include AO, Main Event, Spyda, 50, 1/2 Man 1/2 Amazing, Shane the Dribbling Machine, Circus, Special FX, I'll Be Right Back, Killa Kirby, High Octane, Pharmacist, Coach Steve Burtt and Mr. 720 (formerly Air Up There), who performed the first-ever 720 degree dunk during a game in Houston last season!

HELPING US TOWARD "HELPING CHILDREN TO BE CHILDREN"
We, like many families, are so grateful to CaringBridge. And we thank you for your continued support of the Nicholas Colby Fund. We have received many requests from people asking about the ability for them to make regular, automatic donations. That ability and so much more information about (and for) the children we help (along with seeing the smiles the Nicholas Colby Fund helps to generate) will be part of our Nicholas Colby Fund website.

That website, www.nicholascolbyfund.org, should be live by the end of July 2007. In the meantime tax-deductible donations may be made to:

Nicholas Colby Fund
1547 Palos Verdes Mall, PMB 260
Walnut Creek, CA 94597-2228

Thursday, May 31, 2007 11:59 PM CDT
"I NEED TO TELL YOU SOMETHING" (words that brought fear)
On that November 19, 2004 night when the leukemia diagnosis was made we seemingly froze in time and chose to hold each other close, tight. And then it was Nicholas saying, "Don't worry about me, I'll be alright" that actually radiated warmth beyond our hearts and into our souls. We had always trusted God and that night (and today) our trust keeps our hearts and souls warm…amidst the coldness that seems to try to take hold of our lives.

 

We realize that as our trust in God is high, the level of coldness/fear becomes lower. Remember, music, songs, praying, crying, loving, etc. have always been part of our lives. And to this point we realize that it seems like God is our composer and Nicholas is the music in our lives enabling our hearts and souls to beat as one: one with Nicholas and one with God for love to beget love. We remember that God's work is perfect and pure…so we pray and trust Him for evermore.

Oh, back to the words, "I need to tell you something." Those were the words we heard on two occasions during the leukemia journey:

- Mid December 2004, about one month after the diagnosis, when the diagnosis then included Hypodiploid meaning the leukemia was classified as Very High Risk. This was the reason for the bone marrow transplant

- September 2005 when a routine follow up appointment after the April 2005 transplant resulted in hearing those words again ("I need to tell you something") and then hearing that there was a relapse: the leukemia was back

And back to God, for us "I need to tell you something" can be bitter to hear so we think of love…and we think of God's voice telling us "I need to tell you something!" What God tells us, what Nicholas shares with us, is not fear. We hear and feel love. We trust God, His love…and trust Nicholas is "playing and having fun" not just hearing and feeling love but "seeing" and "enjoying" love.

NICHOLAS COLBY FUND EXPERIENCES PICK BACK UP
You may have noticed that the Nicholas Colby Fund experiences for the children's hospitals took a break in May. With exceptions to the Nicholas Colby Fund nutritional packs that are always immediately available on-hand and provided to parents or guardians of a child having to go into the pediatric intensive care unit at Children's Hospital Oakland, the events/experiences provided eased up in May as we focused even more on Nicholas. And that focus along with the focus & love from many of you culminated into the 1-year Heaven anniversary informal gathering, dinner, and so much more that you shared. (Please refer to the May 25, 2007 journal entry under Journal History)

Following is a snapshot of the first June 2007 experiences for patients/families from Stanford-Lucile Packard Children's Hospital, The University of California San Francisco-Children's Hospital, and Children's Hospital Oakland (details tomorrow night):

June 7, 2007: Sesame Street Live - Elmo Makes Music

June 10, 2007: Sesame Street Live - Elmo Makes Music

June 15, 2007: Ball4Real Streetball Tour (basketball). 30-city tour that features top stars made famous on ESPN's "Streetball," the best streetball basketball players in the world

 

Wednesday, May 30, 2007

(no journal written)
________________________________________
Tuesday, May 29, 2007 10:46 PM CDT
NUTRITIONAL PACKS FOR CHILDREN'S HOSPITAL OAKLAND
Over the last 12 months on these journals we often started some portions with the line, "Do you remember…?" We thank God that these questions/rhetorical questions resonate from a source of love, peace, and joy…along with sadness. Sadness and elements of grieving & depression, thankfully, are overshadowed by the light from God and Nicholas' illuminating, vibrant touch & spirit this has always been felt.

So here again, do you remember the nutritional packs the Nicholas Colby Fund provides to the pediatric intensive care unit (PICU) at Children's Hospital Oakland (CHO)? Since January 20, 2007 we have prepared these packs that contain juice, granola bar, applesauce, and a Nicholas Colby Fund note of love. These packs are immediately available to parents (or guardians) of a patient having to go into the PICU and this week we will replenish the supply at CHO.

One PICU social worker said, "The snack packs, by the way, have been a great success and have provided a much needed snack to many of our families. As you know, many of our patients come to the ICU unexpectedly. These snack bags really help to keep our families nourished until their child becomes more stable, and they can allow themselves to pull away from the bedside."

NOTES:
- Thank you Diablo Foods of Lafayette for providing the granola bars and applesauce (to go along with a container of juice in each bag). And thank you Admac Digital Imaging of Emeryville for providing the Nicholas Colby Fund labels for the bags.

- To see what the packs look like please go to the Nicholas Colby Fund 2nd Quarter 2007 photo album-just copy and paste the following address into your web browser and look at the 5/29/07 pictures:

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x

NICHOLAS
Nicholas, we all remember you and know that you are never gone, never far. And with every action of caring, sharing, and loving…we do it with you.

 

Monday, May 28, 2007
(no journal written)

 

Sunday, May 27, 2007
(no journal written)

 

Saturday, May 26, 2007

(no journal written)
________________________________________
Friday, May 25, 2007 11:29 PM CDT
TODAY-NICHOLAS' 1-YEAR HEAVEN ANNIVERSARY
First, thank you all so much for your telephone messages, cards/letters, guestbook entries, flowers, and special things that you knew Nicholas likes. Nicholas must be smiling and feeling the amazing love flowing with the mention of his name and connection we all share!

- THE INFORMAL GATHERING at Nicholas' Oakmont Memorial Park site: It was really heart-warming to hear, feel, see, and certainly sense love begetting love all day long. Our boys, Sheila, and I were greeted with a sense of awe when we arrived. The flowers, balloons (of course some of SpiderMan), people (family and friends), and special things were…well blessings that warmed our hearts and souls.

- THE NEXT PLACE, book by Warren Hanson: We talked about Nicholas' amazing love and spirit that absolutely lives on today. We talked about Nicholas saying that he wanted to have super powers, be really strong, stretch real far, and to fly. We then read excerpts from the book, The Next Place, that are on the back of the upright marker at his Oakmont Memorial Park site.

Remember, Nicholas' doctor, Dr. Gore, in Denver gave it to us the night before Nicholas transcended to Heaven. And do you remember Nicholas' teacher, Ms. Shirley, read the book to Nicholas as many of you who were at Nicholas' side moments before he left us in body? Following are those excerpts that are permanently at Nicholas' site and in our hearts and souls lovingly remembering Nicholas' connection with these words long before we received this book:

"I'll glide beyond the rainbows. I'll drift above the sky. I'll fly into the wonder, without ever wondering why.

I'll never be alone; I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one. And the circle of our spirits will shine brighter than the sun.

I'll have the love of those who loved me, and the warmth of those who cared…the happiness and memories and magic that we shared. I will cherish all the friendships I was fortunate to find, all the love and all the laughter in the place I leave behind. All these good things will go with me; they will make my spirit glow. And the light will shine forever in the next place that I go."

- WE REMEMBER NICHOLAS: After sharing memories of love as well as laughter we all quietly listened to what was around us and what the gentle wind was creating…what was soaring about…and landing onto our hearts. The wind chime was ever chiming poignantly with the breeze as we heard birds chirping, saw a hawk soaring, a plane humming, the sound of crickets, a cow in the distance mooing, little kids feet "pittering" and "pattering," and seemingly all of our hearts beating as one. We suspect Nicholas was touching our hearts a little more than ever. One of the kids said, "I heard Nicholas' voice!"

Thinking about a poem Sheila and I experienced at a grieving camp (Camp Okizu), I shared the first lines of the poem and in harmony everyone followed each of those lines by saying, "We remember Nicholas!" Here is the poem and the lines:

"In the rising of the sun and its going down,
We remember Nicholas.

In the blowing of the wind and in the chill of winter,
We remember Nicholas.

In the opening of the buds and in the rebirth of spring,
We remember Nicholas.

In the blueness of the skies and in the warmth of the summer,
We remember Nicholas.

In the rustling of the leaves and in the beauty of autumn,
We remember Nicholas.

In the beginning of the year and when it ends,
We remember Nicholas.

When we are weary and in need of strength,
We remember Nicholas.

When we have joys and special celebrations we yearn to share,
We remember Nicholas.

So long as we live, they too shall live, for (Nicholas is) part of us.
As we remember Nicholas"

- EVENING GATHERING at Fuddruckers restaurant where Nicholas had friends and family enjoy his 6th birthday with him: Simply stated, engaging with new and long-term friends (we met along the leukemia journey, from Nicholas' school, from work and home, as well as family) was very, very nice. Thank you!

ONE MORE DAY
The song, "One More Day," by Diamond Rio like most songs can provide many meanings. During Nicholas' physical journey here on earth, Sheila and I listened to the words, and even now we view the essence as beautiful heartfelt expressions of wanting to always hold love close. However, the reality for us was that if that "One More Day" meant our little guy would have had to suffer, we would unselfishly give it up and take May 25, 2006 as our "One More Day" as hard as it was.

May 25, 2006 was the "One More Day" for us. God lovingly enabled us, and many of you, to fully be with Nicholas-every moment…every breath. It was with piercingly deep, mixed emotions. But just as the song says in one of the verses…that we would unplug the phone, keep the TV off, and just hold you every second and say a million I Love You's. That is exactly what our "One More Day" was like-just like the song-it is so ironic. We never really understood the links to life the words to the song expressed until after our "One More Day" had been granted.

And we think about one of Nicholas' favorite songs, "I Believe I Can Fly" by R Kelly and his response to "What are things you want?" question asked of Nicholas on April 19, 2006. Yesterday's journal included those questions and Nicholas' responses. Do you remember what Nicholas said when asked, "What are the things that you want?" One of the things he said was, "To fly!" Nicholas, son, you are wonderfully flying and full of love. And in God's speed we see and feel each other until in God's speed we are with each other in every way we long to be.

PHOTOS: Please click on View Photos where 2 of the 3 pictures are from today. And see several pictures from today via the Nicholas Colby Fund 2nd Quarter 2007 photo album-just copy and paste the following address into your web browser:

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x
________________________________________
Thursday, May 24, 2007 10:24 PM CDT
NICHOLAS' 1-YEAR HEAVEN ANNIVERSARY, MAY 25, 2007

***Excerpt From The June 19, 2006 Journal About June 2, 2006***
REFLECTION
During the Memorial Service and Celebration of Life, we used a "shooting star" (not falling star) analogy asking what do many of us say when a shooting star is seen? The common answer…see it again! Keeping with this analogy, we will see Nicholas again! Nicholas lives in our hearts in so many different ways for most, if not, all of us. Why, because of all your beautiful thoughts and prayers and "because you livvve son, my world has twice as many stars in the sky."

We then shared Nicholas' responses to questions asked him on April 19, 2006 by a Stanford-LPCH social worker that had been very engaged with Nicholas and Sheila & me since March 31, 2005. The responses were generated by an open, free-flowing conversation that we were aware of. Following are some of the questions along with Nicholas' responses:

WHAT MAKES YOU HAPPY?
-Playing with my toys
-Drawing and painting pictures
-Writing, board games, and card games
-Playing with friends
-Easter egg hunts

WHAT MAKES YOU SAD?
-I do not get sad much

WHAT ARE THE THINGS THAT YOU WANT?
-Go to Disneyland and the Monterey Bay Aquarium again
-When things hurt, for mom & dad to fix it
-I like it when mom rocks me
-I like it when dad hugs me when I do not feel good
-Super powers: being fire, really strong, stretch real far
-To fly

Well, Nicholas is flying with amazing powers at God's side, in God's hands, and in God-speed… We realize these truths AND we miss Nicholas' physical presence so much.
***End of excerpt from June 19, 2006***

***
Joyfully painting rainbows. Our precious son. Sweet, loving Nicholas. These are the captions of the three pictures currently seen if you click on "View Photos" either by clicking on the camera icon below (on the Home Page) or the View Photos button above.
***

NICHOLAS' 1-YEAR HEAVEN ANNIVERSARY
We have been asked what will we be doing tomorrow (Friday) for Nicholas' 1-year anniversary in Heaven. Following are the plans:

"L"unch at Nicholas' favorite Japanese restaurant: Blue Ginko (Lafayette)
"O"ut to the movie theatre to see one of Nicholas' favorite characters: SpiderMan 3
"V"isit Nicholas' Oakmont Memorial Park site in Lafayette with an informal 6-7:00 PM gathering
"E"vening gathering where Nicholas enjoyed his 6th birthday: Fuddruckers restaurant (Walnut Creek)

"N"ever stop kneeling down to pray
"I"magine and feel the joy that nothing can ever take away
"C"are about those around us while praying for caring thoughts to help us
"H"ave joy in our hearts and souls
"O"ccasionaly be very, very sad
"L"ament, however, know that God will find a way for us to get through the day
"A"cclimate to the day trusting God's love to be loving Nicholas
"S"ee and experience love around us knowing Nicholas is never gone, never far

THESE JOURNALS ARE NOT JUST WORDS
Providing excerpts of songs, sharing thoughts of our prayers, talking about how we care for Nicholas as much today as always is just our loving way to express the amazing gift, Nicholas, that God brought and keeps in our lives!
________________________________________
Wednesday, May 23, 2007 11:01 PM CDT
***Above VIEW PHOTOS button or the camera icon below***
Joyfully painting rainbows. Our precious son. Sweet, loving Nicholas. These are the captions of the three pictures currently seen if you click on View Photos.

THIS FRIDAY
We have been asked what will we be doing this Friday for Nicholas' 1-year anniversary in Heaven. Following are the plans:

"L"unch at Nicholas' favorite Japanese restaurant: Blue Ginko (Lafayette)
"O"ut to the movie theatre to see one of Nicholas' favorite characters: SpiderMan 3
"V"isit Nicholas' Oakmont Memorial Park site in Lafayette with an informal 6-7:00 PM gathering
"E"vening gathering where Nicholas enjoyed his 6th birthday: Fuddruckers restaurant (Walnut Creek)

"N"ever stop kneeling down to pray
"I"magine and feel the joy that nothing can ever take away
"C"are about those around us while praying for caring thoughts to help us
"H"ave joy in our hearts and souls
"O"ccasionaly be very, very sad
"L"ament, however, know that God will find a way for us to get through the day
"A"cclimate to the day trusting God's love to be loving Nicholas
"S"ee and experience love around us knowing Nicholas is never gone, never far

THESE JOURNALS ARE NOT JUST WORDS
Providing excerpts of songs, sharing thoughts of our prayers, talking about how we care for Nicholas as much today as always is just our loving way to express the amazing gift, Nicholas, that God brought and keeps in our lives!
________________________________________
Tuesday, May 22, 2007 11:30 PM CDT
REMEMBER NICHOLAS AND RAINBOWS (along with his rainbow paintings and pots of gold)

***Please click on VIEW PHOTOS to see Nicholas painting one of his rainbows***
***Above VIEW PHOTOS button or the camera icon below***

Referring to yesterday's journal, below is an excerpt of another song given to us by the nurse practitioner from The Children's Hospital-Denver. The album has amazing connections to Nicholas that she did not know…perhaps again it is just love begetting love and further realization of Love's omnipotence, omniscience, and omnipresence.

Somewhere Over The Rainbow (sung by Nicole Henry as an up tempo samba )

Someday I wish upon a star, and wake up where the clouds are far behind me.
Where troubles melt like lemon drops, oh way above the chimney tops.
That's where you'll find me.

Somewhere over the rainbow, way up high
There's a land that I heard of, once in a lullaby.
Somewhere over the rainbow, skies are blue.
Where the dreams that you dare to dream, really do come true.

Somewhere over the rainbow, bluebirds fly.
If the birds fly over the rainbow, why oh why can't I.

COINCIDENTAL AND/OR LOVING SURPRISE ON MY WAY HOME FROM WORK
As I was descending underground in San Francisco on an escalator to BART (train), something caught my eye and I looked up. It was a red heart-shaped balloon ascending upinto the sky. Do you remember the red balloon we released this year on January 27 in recognition of Nicholas' 7th birthday?

Pictures of the birthday balloon and a story through pictures can be seen on the Nicholas Colby Fund 1st Quarter 2007 photo album by copying and pasting this link:

www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
________________________________________
Monday, May 21, 2007 11:24 PM CDT
THE NEARNESS OF GOD, THE NEARNESS OF NICHOLAS, THE NEARNESS OF FAMILY & FRIENDS
By now I am sure you know that we generally approach the world and life in a positive way-we always have and with every roller-coaster turn and swirl during Nicholas' leukemia journey there was no exception. Do you remember? Loving and trusting God enabled everyday, as HARD as they medically were, to be one with focus on love and for us to be there for Nicholas-every moment. Nicholas LIVED everyday and there were countless moments of seeing joy illuminate from Nicholas during the leukemia journey.

As May 25 (Nicholas' one year in Heaven) is near there is no exception to our positive approach to the world and life; however, it HURTS. Thankfully, praying and calling out God's name continues to help. God, songs, prayers, love, togetherness, presence, and so much more were (and are) part of what helped along Nicholas' journey then & now. Following is an excerpt of a song, The Nearness Of You, a nurse practitioner from The Children's Hospital-Denver sent to us:

THE NEARNESS OF YOU (by Nicole Henry)
It's not the pale moon that excites me, that thrills and delights me…oh no
It's just the nearness of you.
It isn't your sweet conversation, that brings this sensation…oh no
It's just the nearness of you.

When you are in my arms, and I feel you so close to me,
All my wildest dreams, come true.
And in those soft lights, to enchant me, if you only grant me the right to hold you ever so tight,
And feel you in the night, the nearness of you.

THE NEARNESS OF FRIENDS CONTINUALLY LEAVING SURPRISES
Remember, Nicholas also loves dolphins. Tonight on our doorstep there was another Willow Tree figurine left for us. Along with the "Remember" figurine there was a blue "Dolphin" Beanie Baby.

- The "Remember" figurine is one of a lady with her head tilted down slightly to the right with her right hand at her shoulder. And her left hand is holding a flower, seemingly a Plumeria (The Plumeria has a warm, loving meaning to us connected with Hawaii)

- The "Dolphin" Beanie Babies note reads:
Swimming in the warm lagoon,
Underneath the summer moon.
My friends and I will zig and zag,
And play a game of water tag!

THE NEARNESS OF NICHOLAS IS EVER SO CLOSE
Tonight, at Nicholas' Oakmont Memorial Park site with the sun beaming and the blue sky illuminating, closing our eyes we held Nicholas tight. Wherever we are, we do feel you Nicholas and hold you ever so tight. Your sweetness, Nicholas, delights us with every heartbeat and every reflection on the love you provide in all of our lives (as God delights you).
________________________________________
Sunday, May 20, 2007 10:09 PM CDT
As May 25 approaches, we know that it will be one year that Nicholas has been in Heaven...we trust that in God's speed it is just a moment of endless moments of heavenly joy for Nicholas-playing & having fun...and along with trust we FEEL that Nicholas is smiling, laughing, sharing, caring, playing & having fun, and experiencing everything perfect & pure.

If your computer speakers are on, you can hear Nicholas' song-of-love playing in the background. We sometimes close our eyes and can see, hear, smell, feel, and taste love & happiness from Nicholas...through God...as the song and its words speak of Nicholas.

Today, Sheila and I amazingly experienced harmonious thoughts of our precious son-Nicholas. Although it hurts so, so much physically being without Nicholas, trusting God and sensing Nicholas wonderfully warms our hearts & souls. While we do not know what May 25 will bring to us, we do know the measure of time will be overshadowed by Nicholas' love and God's care for Nicholas as well as us.

 

Saturday, May 19, 2007

(no journal written)
________________________________________
Friday, May 18, 2007 11:59 PM CDT
A MESSAGE LEFT FOR US (thank you)
Before, during, and even now after Nicholas' leukemia journey…love massages our hearts and caresses our souls. Our journals along the way often included what Nicholas and we are all thankful for. We have so appreciated our family, friends, and new-found friends being directly and indirectly in our lives then & now. Your messages on this CaringBridge site via the guestbook, email, letters/cards, and other sources amazingly strokes our hearts & souls with love. And we know that we are loved and blessed everyday because of God, because of Nicholas.

Following is a message from an "other" source left for us:

"They say that life is fleeting, I know that this is true.
I left this world so quickly, with (a loving) goodbye to you.
I know how much you miss me, your tears fall ever light.
The pillow where you lay your head, is wet with them at night.

I know your heart is hurting, (thankful no words were left unsaid).
I love you's (not) left unspoken, are (blessings) spinning in your head.
The strength that I have carried, that served to make you whole.
Remains to make you stronger, within your grieving soul.

For you see, while you were weeping on the day I passed away,
At the gravesite near the flowers where my loved ones knelt to pray.
An angel came to see me, She took me by the hand,
She led me to a kingdom in a very distant land.

As I look down from the Heaven, and see you standing there,
Your heart so ever burdened, with more weight than it can bear.
I long to bring you comfort, I long to give you peace.
I long to hold you closely, cause all your tears to cease.

The joy I've found in Heaven, goes far beyond compare.
The love that's so elusive, can be found here everywhere.
The light is softly shining; there's no storm clouds here or rain.
There's no tear drops found in Heaven; there's no suffering, there's no pain.

You needn't be so troubled, stay close to God and pray.
That someday we'll be together, one bright and glorious day.
So (mom & dad) you shouldn't question, my (family) you need not cry,
I've gone to be with Jesus; I really didn't die."

 

Thursday, May 17, 2007

(no journal written)
________________________________________
Wednesday, May 16, 2007 11:30 PM CDT
PRAYING TO GOD, WISHING FOR LOVE
The sun rises, the sun sets, there is light by day, and darkness by night. However, we are grateful that God's love continues to provide love in ways that "pats" our hearts, calms our souls, letting us know that Nicholas "just knows…"

Praying to God and trusting His words always provided comfort to Nicholas...and always comforted us as we witnessed Nicholas' trust in God calming his soul. It no longer matters what we see or feel from nature (sun, clouds, rain, etc.) because love has found a way to warm us, light our paths, keep us comforted, and simply allow love to beget love.

And Nicholas' spirit along with love is the guiding light of the Nicholas Colby Fund - Helping Children Be Children.

THE LEUKEMIA & LYMPHOMA SOCIETY
Soon we will share information about the Nicholas Colby Fund partnering with the Leukemia & Lymphoma Society. It is a natural partnership on several fronts relative to Nicholas' leukemia journey then…and spiritual journey now Helping Children Be Children. As one year in Heaven approaches (May 25), we think back over the last 11 months and the actions that now seemed to have directed us to this partnership:

- Light the Night Walk (remember the pictures on the third album [Day 132 leading to BMT and current pictures] below under Links, and the October 7, 2006 journal?)

- Nicholas' nanny (Kimmy) and others joining the Leukemia & Lymphoma Society Team-In-Training for the benefit of children and society as a whole through research toward finding cures to cancer, including a new Team-In-Training member who recently signed up to run in Nicholas' memory.

Nicholas' story continues and love continues to beget love!

 

Tuesday, May 15, 2007

(no journal written)
________________________________________
Monday, May 14, 2007 11:47 PM CDT
YESTERDAYS, TODAY, AND TOMORROWS
Yesterday (Sunday) was, of course, Mother's Day…and everyday is a day we remember Nicholas as well as feel & sense him in amazing ways. Sometimes, even within the space of a moment we feel dual emotions.

- Painfully, physically missing Nicholas.

- Sensing Nicholas' presence thankfully through God and Nicholas' vibrant, loving spirit & touch.

As we continually experience Nicholas never being gone, never being far…we experience blessings amidst the painful, physical emotions. This is our life and all of our "todays" are days loving all four of our boys. Nicholas is forever our son and today-like every day-is never just another day because of Nicholas' spirit and love that finds a way to us as we trust our spirits and love finds ways to him. Remember, through God we just know that love is doing what love does-and that is everything perfect and pure. We trust these facts of God's love and know that we are blessed on two fronts:

- Memories and the constant realization of love begetting love.

- Love soothing our pain, along with acts of love helping children be children through experiences that generate reasons for children to act and experience life more like they were able to (and a little more) before their illnesses.

Thinking about all of our yesterdays, our tomorrows, and facing today (like every day) we think about Nicholas, about parenthood, about friendship, and act in ways that lets love guide the way. For us, it helps us get through the days although some days and/or nights more than others there is a conflict of hurt & pain along with memories & experiences of love. Thank you for your help. And thank you, Nicholas, for YOUR help-we love you, son!

 

Sunday, May 13, 2007

(no journal written)

 

Saturday, May 12, 2007

(no journal written)
________________________________________
Friday, May 11, 2007 2:30 PM CDT
SURPRISES
Once again, we are not sure who continually provides surprises for us at Nicholas' site and on the guestbook entries; however, thank you.

WHAT NICHOLAS DID SAY!
And this morning we thank that "special someone(s)" for the beautiful guestbook to Sheila from Nicholas. I can hear and feel Nicholas saying that and more to mommy because as Nicholas said on November 2, 2005, "You are the best mom I had my whole life, you make my life wonderful!" And on May 21, 2006 he said, "Mom, you do a good job being a mama-there is no doubt about it!"
________________________________________
Thursday, May 10, 2007 11:59 PM CDT
ANOTHER DAY, ANOTHER WEEKEND, ANOTHER MOMENT TO REFLECT AND LOVE…

AND I THINK OF MOM'S AS MOTHER'S DAY APPROACHES
Sheila is sleep, our other boys are living their lives, my mother is very tired, and it is late tonight as I softly think, pray aloud, and cry for peace.

As another day comes to an end…another day begins. As another weekend begins…another couple of days present opportunities to be even closer with family and friends. Sometimes I just sit and think…praying about Nicholas, the boy that changed so much in me. I pray about my son and how much he means to my other sons. I cry as well as smile because my son, Nicholas, means so much to many more than just family and friends.

And his mother, who tirelessly cared for…played with…and fulfilled his life is celebrated once again because Nicholas is the brother our other sons seemed to have dreamed for and is the boy who lived his dreams in only 6 plus years.

As I often said and say today, Nicholas is a dream of a son…and thankfully through God he is forever touching our hearts, our souls, and all aspects of our lives. So as Mother's Day approaches I, along with my sons, wish my wife Sheila a level of peace and love this Mother's Day that will be her first with Nicholas in Heaven. She has an angel that she touched who is touching her every day and night.

I think of the saying, "Some people dream of angels, we have held one!" My son, Nicholas…I love you!

 

Wednesday, May 9, 2007

(no journal written)
________________________________________
Tuesday, May 8, 2007 11:39 PM CDT
YOUR GUESTBOOK MESSAGES STILL HELP US AND…
While your guestbook messages still help us with continued reflections, we are told by others that they continue to also help them via the "circle of love" that is all of us making up the supporters of Nicholas and supporters of many children faced with life-threatening illnesses.

We have heard the medical staff talk about "the story continues" referring to opportunities to share Nicholas' illuminating sunshine, joy, and passion for caring about others that still touches hearts and lives today. We have heard from parents of a child with a life-threatening illness and parents of children who are not on a "roller coaster" medical journey. We have heard from family, friends, and new friends met along Nicholas journey then & now… We know that we are blessed to have had & have you in Nicholas' life then & now; and we are so grateful for love to beget love through the amazing stories of Nicholas helping all of us to reflect on love.

As May 25, 2007 approaches marking one year that Nicholas has been in Heaven, it is extremely hard to realize the many days, weeks, and months that have gone by. The time has, certainly, not been easy at all because Nicholas has beautifully impacted every aspect of our lives. We say "beautifully" here and have to recognize that it is hard to understand the difficulties along with the beautiful reflections as well. Difficult and beautiful is a conflict and we trust that God's love cannot generate conflicts. Thankfully, the time gone by has not just been bittersweet…it is sweet bitter sweet because the goodness of God and Nicholas individually filled & fill our hearts with love then & now. And together we realize that our lives are filled with love, which is why we continually see love begetting love and the circle of love warmly blessing our lives. Thank you!

Did you see the May 5, 2007 guestbook entry and its picture, under View Guestbook? It was and is a beautiful surprise seeing the angels and dolphins "playing and having fun" (words from Nicholas' song of love playing in the background if your computer speakers are on). We are not sure who the author, Me, is and trust our appreciation is felt.

 

Monday, May 7, 2007

(no journal written)
________________________________________
Sunday, May 6, 2007 10:42 PM CDT
YESTERDAY'S TIME OF REMEMBRANCE DELIVERED A GIFT TO OUR HEARTS
While the Time Of Remembrance at Stanford-Lucile Packard Children's Hospital yesterday (Saturday) was expected to be emotional in a sweet-bitter-sweet way, it delivered to us gifts in many ways. There was a poem read, a song sang, another song as background during the display of the children's photos, and other moments that brought tears of sadness and tears of joy…but mostly sadness even though we were and are so thankful for joy that fills even the deep parts of our souls. And Kristen, one of the child life specialists we work with via The Nicholas Colby Fund, spoke during the Remembrance about Nicholas and the memories forever in her heart. She talked about April 19, 2006 when Nicholas came out of his hosptial room to visit with Mickey & Minnie Mouse. She shared what was truly magic in the air...the amazing embrace mutually shared by Nichlolas and Mickey & Minnie Mouse. (Pictures of the embrace are in the 3rd album below under Links...scrolling to April 19, 2006.)

POEM
From The Book, "If I Get To 5," By Dr. Fred Epstein, Read By One Of The Doctors

You may remember that we often talk about how Nicholas truly "LIVED" everyday of the journey. We always focused on God, love, and living as we kept our faith and trust. Everyday, in the face of all the medical ups and downs…the roller coaster medical journey…we would do whatever helped us to help Nicholas be a child. Well, at the Time Of Remembrance yesterday (Saturday) the poem from the book, "If I Get To 5" was warmly a reflection of the loving light Nicholas continues to shine.

The book talks about how young patients have been the doctor's most important teachers and trusted guides. In this inspiring book, Dr. Epstein's patients teach lessons we all need to learn in order to live life to the fullest-lessons about seizing the moment and facing our deepest fears, about holding someone's hand, and about embracing the joy and wonder of everyday life. Most of all, they teach lessons about uncommon courage-the courage to do what's hardest, to believe in what we don't understand, to love without fear and without boundaries.

As further written by the publisher, "If I Get To 5" takes us inside a world unlike any other, from the high-stakes, high-tech OR where life and death are separated by a heartbeat to the sickrooms and recovery rooms where parents discover the limits and power of their faith. Nicholas lived and lives today in inspiring ways because of God's omnipotence and Nicholas continues to teach us things today because he is our forever gift!

SONG
There You'll Be, by Faith Hill, Sung By One Of Nicholas' Nurses-Nurse April

When I think back on these times
And the dreams we left behind
I'll be glad 'cause I was blessed to get to have you in my life
When I look back on these days
I'll look and see your face
You were right there for me

In my dreams
I'll always see your soul above the sky in my heart
There will always be a place for you for all my life
I'll keep a part of you with me
And everywhere I am
There you'll be

Well you showed me how it feels to feel the sky within my reach
And I always will remember all the strength you gave to me
Your love made me make it through
Oh, I owe so much to you
You were right there for me

In my dreams I'll always see your soul above the sky
In my heart there will always be a place for you for all my life
I'll keep a part of you with me
And everywhere I am there you'll be

'Cause I always saw in you my light, my strength
And I want to thank you now for all the ways
You were right there for me
You were right there for me
For always

In my dreams I'll always see your soul above the sky
In my heart there will always be a place for you for all my life
I'll keep a part of you with me
And everywhere I am there you'll be

BACKGROUND SONG
Somewhere Over The Rainbow, From The Movie-50 First Dates

If you heard this song from the movie you will know that it is sung Hawaiian style. And, we are sure you know how much Nicholas enjoys Hawaii. We wrote about this song in the June 23, 2006 journal, under Journal History.

A LITTLE BOY WHO LOST HIS BROTHER…
There was a boy named Ben who we never met, although Sheila communicated with his mother during Nicholas' journey because Ben was on a treatment with a drug that was available to Nicholas. Ben is in Heaven with Nicholas and yesterday at the Remembrance, Ben's little brother (Michael) literally stayed with Sheila every moment during the reception. Within moments he said, "I love you!" In fact, at one point he said out loud that he wanted Sheila to just talk with him as he wanted her full attention as they played together. Michael helped Sheila decorate a kite we made in honor of Nicholas. On the kite we wrote: Nicholas Colby Gilbert…In our hearts & souls forever; and Michael put two flowers on it.

DINNER
After the Remembrance we left and had dinner at PF Changs, the same restaurant we took Nicholas to the evening we were checking into Stanford-LPCH for the bone marrow transplant. We know it is just a name, however, it felt so nice to see a menu item called, Nico. We ordered it.

 

Saturday, May 5, 2007

(no journal written)
________________________________________
Friday, May 4, 2007 11:59 PM CDT
TIME OF REMEMBRANCE
Referring to the April 20, 2007 journal, tomorrow (Saturday) we will participate in the Time of Remembrance at Stanford-Lucile Packard Children's Hospital. Nicholas and many of us have experienced "time" and "times" that was/were/are so challenging beyond what we would ever remotely expect to face. Nicholas and too many of "all of these beautiful children" faced/face these times with amazing love and trust of their families, friends, and as we lovingly experienced-God.

Trust seemed/seems so hard (and it was); however, we experienced blessings enabling Nicholas to live in ways that "patted/pat" his and our hearts & souls. "Patting" Nicholas was very pleasing to him (remember) so we trust now that our Father, God, is patting us in ways helping us to live. And God is patting Nicholas in ways more than satisfying his desires! Remember the words we sang, "Because you live, son, my world has twice as many stars in the sky."? (June 10, 2006 journal and July 17, 2005)

Everyday is a blessing knowing God, knowing Nicholas and remembering the blessings we experienced and experience loving Nicholas…and being loved by Nicholas & God. Nicholas lives in spirit that is not limiting at all...he lives in spirit that is touching and patting lives beyond our grandest imaginations. As we have said, "Our angel Nicholas… we don't have to see you to know you are here."

 

Thursday, May 3, 2007

(no journal written)
________________________________________
Wednesday, May 2, 2007 11:59 PM CDT
THE SPIRIT OF A CHILD
This evening at Nicholas' Oakmont Memorial Park site we were greeted by more surprises. These surprises were connected to three things Nicholas enjoyed: The Golden State Warriors, SpiderMan, and being strong.

- A very unique Golden State Warriors luggage tag. The front had an outline of California and the Warriors logo. The back had a place for a person's name and address. What someone wrote was "Nicholas Colby Gilbert" and for the address-"Heaven."

- A SpiderMan sheet to create a mask

- An action figure of a "strong" man

These three things, just like the three words (I love you) are typical things that help a child to smile. We thank all of you who directly and indirectly help Nicholas to smile, help us to smile, and through your donations help us toward Helping Children Be Children enabling The Nicholas Colby Fund to help them smile.

Back to the spirit of a child, please CLICK ON VIEW PHOTOS (tab at the top of the page or the camera icon just below this journal entry) to see three different pictures: an infusion of love, joy that none can take away, and a spirit illuminating love.

Note: On May 24, 2007 the journal will contain a message from Nicholas about what makes him happy, what makes him sad, and what are the things that he wants. You can read about these things in the June 19, 2006 journal entry.

 

Tuesday, May 1, 2007

(no journal written)
________________________________________
Monday, April 30, 2007 10:37 PM CDT
MAY 2007
As May 25 approaches we are not quite sure what do expect with Nicholas being in Heaven for almost one year now. We have experienced that the days, weeks, and months do not get any easier. We have experienced many types of changes emotionally as well as physically. And we are not alone having a child pass onto Heaven; however, so many times of the day or night it feels like we are alone with our emotions and physical impact of missing Nicholas.

We regularly prayed with Nicholas focusing on God's omnipotence, omnipresence, and omniscience. Nicholas received comfort as we held him, patted him, prayed, sang, and talked about God's love…even when it felt like we were not experiencing that love. We came to always know that God was right there with us. We came to know that through God that whether or not we see each other we will always "just know" that we are in each other's hearts and souls. Nicholas, you are not away from us. Remember, we know that our shared love will always be felt-we just know that and trust and believe God is making this, too, true for you.

Previously we wrote about our prayers and talks with Nicholas that…"while life sometimes seems to have no reason or rhyme to how things unfold, when we spiritually look at life here on earth we just know that your loving touch-through the many ways your spirit embraced our hearts and souls-was not by chance. Your love, Nicholas, was and is a gift that guides us to love. And it guides our forever-memories to love in our life. You, son! You continually light up our world and your spirit illuminates our path even closer to God. You brothers are blessed because of you and love you so, so much. And son, the purity and perfection of God's arms around you must feel so, so good. You, son, are so amazing. We are sure God is more than pleased…and He is more than pleasing you."

THANKFULLY LOVE REMAINS IN WAYS THAT WILL NOT CHANGE
Please click on View Photos to see three pictures that tell a story (tab at the top of the page or the camera icon just below this journal entry). It is a story of how the joy from God touches our hearts, and our souls come alive to shine forever more in gentle loving ways…the look of love… and everyday Nicholas' amazing love caressing our lives and warming our hearts.

APRIL 2007 NICHOLAS COLBY FUND EXPERIENCES

- April 9, 2007: Golden State Warriors basketball game for patients from Stanford-Lucile Packard Children's Hospital who filled the suite

- April 15, 2007: San Francisco Ballet for a patient (and her family) from The University of California San Francisco-Children's Hospital

- April 15, 2007: Golden State Warriors basketball game and a meet & greet experience with star player Baron Davis, for a patient from Children's Hospital Oakland/UCSF Children's Hospital

- April 17, 2007: Golden State Warriors basketball game for Stanford-Lucile Packard Children's Hospital

- Continually, the "nutritional packs" are immediately available on site for every parent of a child going into the Pediatric Intensive Care Unit at Children's Hospital Oakland

Pictures for April are on the Nicholas Colby Fund 2nd Quarter 2007 photo album:

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x

 

Sunday, April 29, 2007

(no journal written)

Saturday, April 28, 2007 11:59 PM CDT
DAY AND NIGHT
This morning at Nicholas' Oakmont Memorial Park site it was beautifully warm and calm. The sounds from a soothingly quite morning were harmonious…and as a ladybug flew onto the site we thought about Nicholas even more. There are lots of memories we have of Nicholas being so inquisitive and gentle with nature as well as people. PLEASE CLICK ON VIEW PHOTOS (tab at the top of this Home Page or the camera icon below) to see three pictures. The first one is Nicholas and Sheila looking at ladybugs on the patio at Stanford-Lucile Packard Children's Hospital (LPCH) almost one month after the bone marrow transplant.

 

This evening Sheila went to LPCH to help out a mother and a child we met along the way. Many of you know the child, it is Camilia, who Nicholas played with at LPCH and is the beautiful child The Nicholas Colby Fun - Helping Children Be Children sent to Disneyland this past Holiday Season. You can see Camilia in The Nicholas Colby Fund, Christmas 2006 photo album. Just copy and paste the following into your web browser:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

(Remember links to all of The Nicholas Colby Fund albums are above on the Home Page; and links to all of the other albums about Nicholas' life and journey are on the albums below on the Home Page, under Links).

RELATIONSHIPS, CONNECTIONS, TOUCHES OF LOVE…
Guess who is Camilia's nurse tonight? It is Colleen who is one of the many nurses that several of you have directly and or indirectly met along the way…as they have been present on the guestbook entries and present in our lives in a myriad of ways during Nicholas journey "then and now." Yes, we have received several telephone calls about the Golden State Warriors in the NBA playoffs. We have heard what many have felt…that Nicholas is that little something extra helping the Warriors.

So why did we mention Colleen tonight when we could have mentioned anyone of all the wonderful nurses and doctors that are still part of our lives? Well, because of the notion of relationships, connections, and touches of love. Specifically, because her brother is Bob Fitzgerald who is a play-by-play announcer on the Warriors' television broadcast crew as well as other broadcast roles for the Warriors on the radio. On January 20, 2006 we were at a Warriors game and Nicholas helped Tim Roye (of the radio broadcast crew) interview the star of the game. Remember, we wrote about it in the January 20, 2006 journal, under the Journal History tab? Before that game we were on the floor watching the Warriors warm up and Bob Fitzgerald walked over to us and said, "You must be Nicholas…" PLEASE CLICK ON VIEW PHOTOS and see the second picture.

Well, back to the point…with so many wonderful relationships, connections, and touches of love…Nicholas is part of all the joy and wonderful moments of excitement and happiness coming the Warriors way. And Nicholas is one along with so many amazing children who share love in the ways that they do. Whether they are near or far, they touch our hearts and souls.

So we feel it too…Nicholas is part of the Warriors and is that little extra glow many longtime and new fans are coming to know and enjoy. Yes Colleen, Joey, Charles, Kimmy, Steve…, we feel it too. Win or lose the glow will get brighter and brighter creating many more wonderful moments for the Warriors, for the fans, for children, and for all of those who simply open up more and let joy come in. If only for a moment, for one more game, love & fun will grow. We LOVE YOU, son!

 

Friday, April 27, 2007

(no journal written)
________________________________________
Thursday, April 26, 2007 11:41 PM CDT
ANOTHER HEART, ANOTHER MOMENT, ANOTHER SHARED STORY OF LOVE
For those of you that knew Nicholas and have become to know Nicholas, you know that he has a heart of gold and a golden touch. You also know, like many children and adults, he loved collecting rocks…especially heart-shaped rocks. Once again, we were greeted by a beautiful surprise at Nicholas' Oakmont Memorial Park site. This time a 1-inch tall heart shaped rock-thank you!

Another month (25th day) has passed and next month (May 25th) it will be one year that Nicholas has been in Heaven. We have become to better understand life's facets of living as well as "passing" although it is still so hard to get through each day. As Nicholas' friend, Hana, wrote, "I wonder why…", is always on our minds (November 11, 2005 journal under Journal History).

Many things stated by people about a loved one in Heaven provide words/expressions that are lovingly comforting. But we miss Nicholas physically so much. And we are blessed that there is an "and"…and every moment of every day, week, month, and beyond one year, two years, three years, and forever more Nicholas blesses our lives because Nicholas truly is embodied in love that is everlasting.

As sunrises provide hope, sunsets deliver peace. With God's love, Nicholas truly is never gone, never far…being so much more than just in our hearts & souls. We are so comforted knowing Nicholas loved God, trusting God enabling Nicholas to be "playing and having fun" with Jesus, and that Nicholas is with us as we are with him. Remember, Nicholas and we, "just know…"

The Nicholas Colby Fund - Helping Children Be Children is love doing what love does and because of Nicholas, love reaches, touches, and warms our lives and the lives of so many more with each reflection of his smile, twinkle from his eyes forever remembered, and the telling of his story entrenched in God.

 

Wednesday, April 25, 2007

(no journal written)
________________________________________
Tuesday, April 24, 2007 11:47 PM CDT
11 MONTHS IN HEAVEN
Tomorrow (Wednesday) it will be 11 months that Nicholas has been in Heaven. Since Nicholas has been in Heaven, we continually say that our son, brother, cousin, companion (as Nicholas' teacher would say), friend, and angel is never gone, never far. Once again we trust God's love to unquestionably do what God said He would do-love. And with love, we just know…

The memories and new experiences continue to build beautiful connections with Nicholas. And it is a beautiful, warm feeling hearing about or reading guestbook entries (on this website) about Nicholas and the Golden State Warriors.

We said it before and saying it again or experiencing it again feels nice. We are referring to listening to the songs that make up the Video Tribute played during the Memorial Service ALONG WITH those sang during the Memorial Service and Celebration of Life. The titles alone provide a warm, loving, inspirational message: Nicholas' Song of Love…If I Can Help Somebody…Held…For Good…Step In The Name Of Love…You'll Be In My Heart…Beautiful Soul…Beautiful…Never Gone…Old Friends…Joy…Count It All Joy.

(All the songs are accessible via www.nicolascolbyfund.org, clicking on Sound Tracks, and clicking on the song you want to hear.)

Memories and things said before come back to us now. Things like it is still not easier, getting through each day and night, although it continues to become different each day and night. Becoming "different" is not bad but it is not great either. This is hard for us to understand and certainly hard to explain. However, we do trust and love God knowing He will "make a way" for us and trust He is making a beautiful, loving way for Nicholas even today.

God will make a way,
Where there seems to be no way.
He works in ways we cannot see,
He will make a way for me.

He will be my guide,
Hold me close to His side.
With love and strength for each new day,
He will make a way.

As Nicholas' 11th month in Heaven arrives, what continues to comes into view…what we see…what we focus on…and what we trust and believe God to bring to us…is further knowing that Nicholas is amazingly loved. That Nicholas is full of light. As each day since Nicholas has passed our lives have been empty AND at the same time so full of colorful, angelic, and sweet everything because Nicholas is sweet everything.

 

Monday, April 23, 2007

(no journal written)
________________________________________
Sunday, April 22, 2007 11:30 PM CDT
TODAY'S REMEMBRANCE
Referring to Friday night's journal about "A Time Of Remembrance" held and to be held at the three hospitals, today was a time of remembrance as well as connections with the Children's Hospital Oakland staff and a family met in September 2006 (at Camp Okizu's bereavement camp) and families met today.

Following is a snapshot of some of the experiences:
ENTERING to the melodies of a harp.

CREATION of a memory box by Sheila and me (Yes, we used a treasure chest-type box because you know that Nicholas loves treasures.) Other supplies available for families to use were raised-stickers of shapes and adhesive-back words as well as letters.
- Sheila designed the memory box creating the words: "Never Gone Never Far In Our" (applied a raised-heart sticker) and then the word "Forever" along stamping an ivy border on the sides.

- Using the same supplies I created a simple, heartfelt and soul filling message: Sunshine (raised sticker) "You Are My Sunshine," "Beautiful," N I C H O L A S, Star (raised sticker), Heart (raised sticker).

WE REMEMBER THEM (Poem)
In the rising of the sun and its going down,
We remember them.

In the blowing of the wind and in the chill of winter,
We remember them.

In the opening of the buds and in the rebirth of spring,
We remember them.

In the blueness of the skies and in the warmth of the summer,
We remember them.

In the rustling of the leaves and in the beauty of autumn,
We remember them.

In the beginning of the year and when it ends,
We remember them.

When we are weary and in need of strength,
We remember them.

When we have joys and special celebrations we yearn to share,
We remember them.

So long as we live, they too shall live,
For they are part of us.

READING of names followed by the chime of a bell.

SHARING of memories that began with a presentation by one of the doctors about Nicholas and his amazing spirit then and now.

HARPIST playing another song-about the ocean and how waves come & go although the ocean remains the same.

A YEAR AGO THIS MONTH: PLEASE CLICK ON THE VIEW PHOTOS TAB AT THE TOP OF THE HOME PAGE OR ON THE CAMERA ICON BELOW TO SEE…
- A year ago this month, and everyday Nicholas' amazing love caresses our lives

- A year ago this month...and the joy that illuminated from Nicholas warms our hearts everyday

- A year ago this month, Nicholas was a child at play in spite of the leukemia journey...and today he is helping us Helping Children Be Children

 

Saturday, April 21, 2007

(no journal written)
________________________________________
Friday, April 20, 2007 11:09 PM CDT
REMEBRANCES
The three hospitals that treated Nicholas held and are holding "A Time Of Remembrance" to remember the children who have passed.

THE CHILDREN'S HOSPITAL-DENVER: Last Sunday a remembrance was held at The Children's Hospital-Denver. Although we did not make it to Denver, pictures of Nicholas were part of the video presentation. And following is a writing from their program with words that echo our love for Nicholas:

To Honor You (by Connie Kiefer Boyd)
To honor you, I get up everyday and take a breath,
And start another day with out you in it.
To honor you, I laugh and love with those who knew your smile and the way your eyes twinkled with mischief and secret knowledge.

To honor you, I take the time to appreciate everyone I love.
I know there is no guarantee of days or hours spent in their presence.
To honor you, I listen to music you would have liked, and sing at the top of my lungs, with the windows rolled down.
To honor you, I take chances, say what I feel, hold nothing back, risk making a fool of myself, dance every dance.

You were my light, my heart, my gift of love, from the very highest source.
So everyday, I vow to make a difference, share a smile, live, laugh, and love.
Now I live for us both, so all I do, I do to honor you.

CHILDREN'S HOSPITAL OAKLAND: This coming Sunday, Children's Hospital Oakland will hold their remembrance and we will be there…remembering, loving, and never letting go of a life that lives on through the touch Nicholas has left virtually everywhere…and through The Nicholas Colby Fund. Photos of Nicholas will also be part of their video presentation.

STANFORD-LUCILE PACKARD CHILDREN'S HOSPITAL: On Saturday, May 5, "A Time Of Remembrance" will be held for Stanford-Lucile Packard Children's Hospital (LPCH). We will be there with Nicholas at our side, while God holds us all up high to remember his and His love that is always and forever our guide. Pictures in their video presentation as well.

SOMETHING ELSE ABOUT NICHOLAS
Do you remember how we have learned from staff at LPCH about how "the story continues…"? This refers to conversational opportunities that surface through situations like when a patient or their parent(s) asks a staff member about the puzzle piece in their plastic-name-badge holder. When asked, Nicholas' story continues as the staff member tells one of the many stories about Nicholas. (Remember, as the Video Tribute was concluding the Memorial Service on June 2, 2006, the last picture was a profile of Nicholas, the one seen on the back of the "program.". Nicholas was always asking, "Do you want a piece of me?" In Nicholas' way at the Memorial Service, he was saying, "You will always have a piece of me…" To that end, everyone leaving the Memorial Service received a puzzle piece of Nicholas-from a puzzle made with the profile image.)

Well, we just learned yesterday from the hospital that Nicholas' story would continue in another unique way. One staff member who will soon have a newborn son has decided to name the child-Nicholas-in honor of Nicholas.

A YEAR AGO THIS MONTH: PLEASE CLICK ON THE VIEW PHOTOS TAB AT THE TOP OF THE HOME PAGE OR ON THE CAMERA ICON BELOW TO SEE…
- A year ago this month, and everyday Nicholas' amazing love caresses our lives

- A year ago this month...and the joy that illuminated from Nicholas warms our hearts everyday

- A year ago this month, Nicholas was a child at play in spite of the leukemia journey...and today he is helping us Helping Children Be Children

 

Thursday, April 19, 2007

(no journal written)
________________________________________
Wednesday, April 18, 2007 11:58 PM CDT
REMEMBERING NICHOLAS: THE GOLDEN STATE WARRIORS AND NICHOLAS HELPING CHILDREN BE CHILDREN
Remember, this past Sunday The Nicholas Colby Fund hosted a patient at a Warriors' basketball game (one of many Warriors' games as well as other experiences for children since Nicholas passed onto Heaven). The Warriors, once again, helped us uplift the spirit of children. Please copy and paste the following Golden State Warriors link into your browser and see how they helped us on April 15. After you access the link you can "click" where they indicate to see pictures and captions about The Nicholas Colby Fund.

http://www.nba.com/warriors/community/home.html

TODAY WAS ANOTHER BIRTHDAY FOR ONE OF NICHOLAS' BROTHERS, AND TOMORROW IS ONE MORE
April 14 was Nicholas' oldest brothers' birthday (Chris); today was Tim's birthday; and tomorrow, April 19, is Matt's birthday. Remember, Nicholas loved to do things for others as well as sing. We could hear him singing Happy Birthday…and feel his amazing rays of sunshine warming our hearts and souls. There are constant occasions to celebrate throughout the days, weeks, and months, and Nicholas is there helping us to do just that as his story continues…even though the days, weeks, and months are "sweetbittersweet" as we have come to say focusing on God's love and Nicholas' amazing love.

 

Tuesday, April 17, 2007

(no journal written)
________________________________________
Monday, April 16, 2007 9:49 PM CDT
CIRCLE OF LOVE DOING WHAT LOVES DOES-THIS IS FOR ALL OF YOU
Remembering Nicholas loved to collect rocks and especially enjoyed finding rocks shaped like rock, someone left a big surprise for all of us. This past weekend someone left an approximately 15-inch high by 12-inch wide heart-shaped rock at Nicholas' Oakmont Memorial Park site. (Please see the Home Page picture above.)

It was another beautiful surprise, another moment that will provide lasting moments of joy. As 11 months since Nicholas has been in Heaven approaches, we are blessed to continually feel and see Nicholas' love in many ways that he has left for us, he delivers to us, and YOU help us to experience-THANK YOU ALL!

We thank God for Nicholas, his legacy The Nicholas Colby Fund - Helping Children Be Children enabling Nicholas to continue his love for people and another way Nicholas continually enables us to hold him close…and pat him just the way he likes. And it is that circle of love, again, doing what loves does. All of you, directly and indirectly, are part of the circle of love that helps Nicholas and The Nicholas Colby Fund brightly shine in the eyes of kids near and far…kids of all ages including parents, guardians, care takers at home and in the hospitals, as well as so many people who simply shows up in the lives of others helping love to beget love.

Nicholas, we will always be with you as you are with us…we trust and believe these words to be true and "just know…" that you are "playing and having fun!" We love you, we thank you, and we will never, ever forget you. Remember, we don't have to see you to know you are here! Here is a kiss for you, another kiss…and thank you for that kiss from you…and here is another kiss placed on you. I do feel you son; go on, go on and play with Jesus.

NOTES:
- That picture of a train in one of today's guestbook entries is exactly like one of Nicholas'-thank you for this beautiful surprise too. And, thank you all for the continued guestbook entries: they are still very helpful and part of the circle of love talked about.

- More pictures from one of this weekend's Nicholas Colby Fund experience and other connections of love are on the Nicholas Colby Fund 2nd Quarter 2007 album...and you can see one patient with Baron Davis of the Golden State Warriors quickly, by clicking on View Photos on this Home Page:

http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x

 

Sunday, April 15, 2007

(no journal written)
________________________________________
Saturday, April 14, 2007 11:59 PM CDT
ANOTHER SONG, ANOTHER MOMENT OF LOVE (We trust and believe…)
In July 2006 one of the journals imparted Nicholas' love for music along with the connection the words or just the music has within each of us. Just hearing songs, especially those that included God or Jesus' name, resonate deep within us generating an amazing sense of God's omnipotence, omniscience, and omnipresence. Songs have always been a significant part of Nicholas' life before he could talk.

There are so many songs that we regularly sang with and to Nicholas throughout his entire life. Sometimes we sang them the way they were written, sometimes we created songs, and sometimes we modified songs to fit Nicholas or the situations we were experiencing.

Although the pain in our hearts is constant, hearing or singing songs Nicholas enjoyed or songs about God's love amazingly delivers something deep within us that soothes our hearts and souls…if only for a moment. Songs and/or singing help to realize love!

Today, a song ("Come to Jesus" by Damaris on the album The Heart Of God) we were listening to provided a moment that was sad and also provided peace knowing God loves Nicholas so, so much. Following are some of the words to the song heard today:

"…and with your final heartbeat, kiss the world goodbye,
Then go in peace and laugh on glory's side.

And fly to Jesus, fly to Jesus, fly to Jesus and live!
Fly to Jesus, fly to Jesus, fly to Jesus,
Come to Jesus, go on, sing for Jesus, fall on Jesus,
Cry to Jesus, dance for Jesus, fly to Jesus,
Fly to Jesus and live!"

GENERATING SMILES…AND WE KNOW IT IS BECAUSE OF NICHOLAS' SMILE AND GOD'S LOVE
In three days (April 15-17, 2007) patients from Children's Hospital Oakland, University of California San Francisco-Children's Hospital, and Stanford-Lucile Packard Children's Hospital will experience a Nicholas Colby Fund event with the Golden State Warriors and the San Francisco Ballet. Please see the flyer above on the Home Page, and click View Photos where 2 of the 3 pictures are flyers for the other two experiences over three days.

TODAY WAS NICHOLAS' OLDEST BROTHER'S BIRTHDAY
...and yes during dinner outside under the stars and a picturesque sunset we thought and talked about Nicholas. We talked about a night in Hawaii having dinner outside with Nicholas. We smiled, felt love, and feel Nicholas' love helping us to smile while we often cry loving him so much.

 

Friday, April 13, 2007

(no journal written)

 

Thursday, April 12, 2007

(no journal written)
________________________________________
Wednesday, April 11, 2007 11:05 PM CDT
SWEET-BITTER-SWEET…HELPING CHILDREN BE CHILDREN
Sweet-bitter-sweet is a phrase we began to use on December 18, 2006, describing how we feel missing Nicholas so, so much. We use the phrase sweet-bitter-sweet because the sweetness of Nicholas warms our lives; missing his physical presence leaves a bitter hole in our hearts; however, feeling Nicholas' love sweetens our souls.

While the sweet-bitter-sweet notion is a blessing to hold onto, this week we also hold onto the notion of helping others (Helping Children Be Children). Two of the children we have met along the way are experiencing very, very bitter times right now:

-For Camilia, Sheila has spent the week with the family helping the mother who asked for guidance…and helping Camilia who asked for companionship

-For Troy, through The Nicholas Colby Fund and the amazing ways the Golden State Warriors demonstrates their caring, Troy and his family will enjoy a great time out at the Warriors' April 15 game and a "Meet & Greet" with one of the Warriors' star players-Baron Davis
________________________________________
Tuesday, April 10, 2007 10:59 PM CDT
HE IS OUR SON; YOUR BROTHER, GRANDSON, NEPHEW, COUSIN, FRIEND…
As much as helping "other" children be children feels right and, certainly, is what Nicholas would be (is) doing…sometimes the pain in our hearts pierces through the linings of love that surrounds us even as we help others through The Nicholas Colby Fund. The pain surfaces and cuts into what our lives are today. Sometimes although we trust and believe God's words and His love…missing Nicholas so, so much seems to stop our lives in some ways. And as we would hold Nicholas and pray with him about God's love…it feels right knowing that Nicholas is asking God to hold us as Nicholas prays with us from Heaven and from his touch that, thankfully, always surrounds us.

We still pray to God for Nicholas more than we do ourselves…because he is our son. And because God is God we know that he has never left Nicholas alone-Nicholas is God's son too!
________________________________________
Monday, April 9, 2007 11:59 PM CDT
BEAUTIFUL SURPRISES
Remember how Nicholas, like many kids and some adults, loved coloring Easter eggs…and of course loved to find the "prize" egg during our Easter egg hunts? (If you clicked on View Photos this past weekend to see the 3 pictures on this website without having to leave the website you would have seen Nicholas at Easter last year and in 2004.) Once again, this past weekend someone left a beautiful surprise for Nicholas at the Oakmont site. It was a wonderfully decorated Easter egg.

And once again, because of Nicholas' love and Nicholas being loved, someone left a beautiful surprise for us on the upright marker at the Oakmont site. The surprise for us was another Willow Tree figurine-"Angel of the Heart" for those who love and are loved.

SMILES FROM TONIGHT'S NICHOLAS COLBY FUND EXPERIENCE
Please copy and paste the following Nicholas Colby Fund 2nd Quarter 2007 photo album link into your browser to see smiles from tonight's experience. And you will see Thunder "playing and having fun" with some of the kids as well.

Nicholas Colby Fund 2nd Quarter 2007
http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x

NICHOLAS COLBY FUND PHOTO ALBUMS
Nicholas Colby Fund photo albums depict Nicholas' legacy of love, hope, trust, caring, giving, sensitivity…and reveals the smiles generated from Helping Children Be Children. To view, please copy and paste the following links into your web browser:

Nicholas Colby Fund 2nd Quarter 2007
http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

 

Sunday, April 8, 2007

(no journal written)

 

Saturday, April 7, 2007

(no journal written)
________________________________________
Friday, April 6, 2007 11:59 PM CDT
GOOD FRIDAY, EASTER
Tonight we watched the movie, The Pursuit Of Happiness, starring Will Smith. The "about" information for the movie states it is about how determination finally pays off…and that with self-confidence and the love and trust of his son the person rises above obstacles.

For me, the movie does elicit determination, love, and trust…and the feeling and sense that it left me with is the reminder that only God can bring you happiness and only God can bring us peace. It reminds me of things we used to share with Nicholas, things like the following:

***Following is an excerpt from the July 16, 2006 journal (after Nicholas passed)***

EVERYDAY LIVING HAS CONSTANT REMINDERS AND THEY ARE GOOD AS WELL AS SAD, BUT…
Today, like most days, just going through everyday living takes us to many reminders of Nicholas and we are so, so grateful for the constant memories of love & happiness. And today at Broadway Plaza in Walnut Creek (outdoor mall) and the grocery store there were people we have known a long time and a short time sharing loving memories of Nicholas and thanks for what Nicholas has taught them along the way. These are happy moments and some of these moments along with others bring sadness. Sadness because we, naturally, miss Nicholas. But below are words we have often spoken about that help us along way. It is not just about the words, it is about knowing, trusting, and seeing God's perfect work through and in Nicholas-and praying and believing God's love for all of these kids is all that all of these kids and all of us need and have.

"I walk with God along the way, and oh, it is a joyful-dominion day. No more I suffer cruel fear, I feel God's presence with me here. The joy that none (and nothing) can take away is mine, I walk with God today."

"Green pastures are before me, which yet I have not seen. Bright skies will soon be over me, where darkest clouds have been. My hope I cannot measure, my path in life is free. My Father has my treasure, and He will walk with me."

***Following is an excerpt from the February 23, 2006 journal (before Nicholas passed)***

AND ANOTHER GOOD DAY
Nicholas had another good day although it was a rather quiet day in terms of activities. He looks great, he is full of spirit, and he expresses joy! Mom & dad are grateful that he is happy and we are so happy that he understands things in relative terms. (We are using "things" in a general way in place of physical activities while on "this journey.")

What we mean here is that while he cannot run and jump like he is use to doing, he tries to do the those things and at times will say, "you know I can't run and jump but I will try." He says these things in a positive way at times; sometimes he wants to talk and pray about these things. While we are happy about his approach, we are also sad that he has to face these things. There is so much more to life than physical things and the fact that he still does these things-the best way he can-generates smiles from us and we are so happy to witness smiles from Nicholas. And we thank God for Nicholas' smiles and approach.

And we know that "this journey" is and can be whatever and however God charts the path for it to be.

THINKING BACK TO TODAY AND WATCHING THE MOVIE, The Pursuit Of Happiness
Simply put, we experience some layers of happiness calling out God's name…and we are happy" knowing Nicholas loved to pray and call out to God & to Jesus…trusting and believing that Nicholas is happy being with God and heavenly enjoying "playing and having fun" with Jesus. Nicholas must be surrounded with treasures and Nicholas is walking with God & Jesus. (Remember, Nicholas loves treasures like his pots of gold and the simple pleasures of loving…)

Our angel, Nicholas, we do not have to see you to know that you are here! And, you will find the prize Easter egg again this Easter and through God you are feeling our love and know that you are loved as you are never gone, never far. We are happy to reflect on the prayers and talks we had about how "we just know…"

***PLEASE CLICK VIEW PHOTOS TO SEE NICHOLAS AT EASTER 2006 and 2004***

We hope everyone enjoys Easter and look for ways to have happy days…we will and will do so trusting and believing God's love and that love begets love.
________________________________________
Thursday, April 5, 2007 11:08 PM CDT
HE IS ALWAYS THERE!
While journal entries were not written Tuesday and Wednesday nights, love begetting love and the circle of love that we often express through what we see & feel is always at work. Nicholas is always loved; always giving love; and never gone, never far.

We are so grateful that because God is God, He is always being God even when sometimes many of us do not receive what we want. We firmly believe and trust God's love to always provide…sometimes in ways we, certainly, do not want. But we trust and believe He will make a way for us that will be more than all right. Things may not be when and how we want today, but some days and/or some day we will realize that His love is making our days more than all right.

For us, it is hard to say that days are all right or that days are okay. It is like we wrote in the November 27, 2006 journal entry:

NEVER EASY, SOMETIMES HARDER, ALWAYS DIFFERENT, AND…We continually are thankful for being able to get through the days and nights. With time going by it has never been easy. Sometimes it is excruciating hard. It has always been different in terms of our emotions-like the proverbial roller coaster we talked about during Nicholas' leukemia journey. And constantly we feel love and a sense of calm when we need it most. We have always recognized blessings along Nicholas' journey and even today.

It is not easy to understand the blessings amidst the pain. However, as amazing as Nicholas always has been and as amazing as God is, everything perfect and pure has to be going on for Nicholas so we can hear Nicholas saying, "I'm okay" in the beautiful, playful way that he does. It is absolutely never easy; it is hard. And with Nicholas and with God-spirit and love-we have to be okay.

AS EASTER SUNDAY APPROACHES, SO DOES THE BEGINNING OF APRIL'S NICHOLAS COLBY FUND EXPERIENCES

- April 9, 2007: Stanford-Lucile Packard Children's Hospital patients at a Golden State Warriors professional basketball game, and a visit from Thunder (Warriors' mascot)

- April 15, 2007: A University of California San Francisco-Children's Hospital patient at a San Francisco Ballet with her family

- April 15, 2007: A Children's Hospital Oakland/University of California San Francisco-Children's Hospital patient and family at a Golden State Warriors basketball game, and a surprise visit is planned

NICHOLAS COLBY FUND PHOTO ALBUMS
Referring to the heading, Current Pictures, on the Home Page above the daily journal you will see the link to copy and paste into your browser for all the Nicholas Colby Fund photo albums. These albums depict Nicholas' legacy and reveals the smiles generated from your help toward Helping Children Be Children.

Below is the newest photo album:
Nicholas Colby Fund 2nd Quarter 2007
http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x

***PLEASE CLICK VIEW PHOTOS TO SEE NICHOLAS AT EASTER 2006 and 2004***

 

Wednesday, April 4, 2007

(no journal written)

 

Tuesday, April 3, 2007

(no journal written)
________________________________________
Monday, April 2, 2007 11:59 PM CDT
HEAVEN AND A HALO
Reflecting on this past weekend and the Saturday and Sunday night journals (under Journal History), we thought about the "Heaven" poem in the picture/story book about Nicholas that we recently received from friends who live in Germany. (The link to copy and paste into your browser to view the book will be kept above the daily journal on the Home Page-above. It is under Picture/Story Book About Nicholas.) The link to copy and paste is:

http://preview.picaboo.com/Webview/CoverPage.aspx?album=0000000000002E098C&user=0000000000002E10CE

Following is the poem-Heaven-that is in the book:

Now that I am in Heaven, Lord
And life is just a dream.
I don't want to hang around,
Eating strawberries and cream.

I'm really quite an active child,
And I don't need to rest.
I'll just play and do the things,
You know I like the best.

I'll play ball in Heaven, Lord,
With my halo on my head.
I'll run around the playing field,
Or use my wings instead.

I'll pick the players on my team,
And when we win the game,
I'll make the Heaven's Hall of Fame.
Everyone will know my name.

I'll fish the streams and rivers, Lord,
And lure big fish my way.
You know I'll put them back again,
To catch another day.

I'll sail the seas and see the land,
The mountains and the plains.
I'll fly the skies with open eyes,
Above the clouds and rain.

I'll even practice all the things,
An angel has to do.
But mommy (daddy, brothers, family, and friends) you know my favorite thing,
Is watching over you.

NICHOLAS COLBY FUND PHOTO ALBUMS
Referring to the heading, Current Pictures, on the Home Page above the daily journal you will see the link to copy and paste into your browser for all the Nicholas Colby Fund photo albums. These albums depict Nicholas' legacy and reveals the smiles generated from your help toward Helping Children Be Children.

Below is the newest photo album:
Nicholas Colby Fund 2nd Quarter 2007
http://www.kodakgallery.com/I.jsp?c=hzm3iu6.bqwzr5sm&x=1&y=-u2np5x

***PLEASE CLICK VIEW PHOTOS TO SEE NICHOLAS AT EASTER 2006 and 2004***
________________________________________
Sunday, April 1, 2007 11:07 PM CDT
A MOMENT TODAY EXPERIENCING NICHOLAS IN A NEW/DIFFERENT WAY
Nicholas' grandmother is back in the hospital…and Nicholas made his presence felt-it was another expression seemingly from Heaven. (Remember the August 18, 2006 2:15 AM journal entry about what was seen via clouds?)

While we were visiting my mom in the hospital, looking out the window and into the blue sky with white-whispery clouds (directly across from the window), in the midst of the whispery clouds there were clouds that formed a perfect uppercase "A". Above the "A" there was a halo! We told my mom that our angel, Nicholas, was watching over her as well.

THE AMAZING SATURDAY MORNING (Saturday night's journal)
The experience we wrote about in Saturday's journal is one, like others, that help us feel Nicholas in beautiful ways. Remember, we say…never gone, never far… As much as these moments help us to smile, they are bittersweet! And yes, we trust and believe God's love and His words. We do breathe a little harder and continually pray so much more.

UPCOMING APRIL 2007 NICHOLAS COLBY FUND EXPERIENCES

- April 9, 2007: Patients will fill the suite to enjoy the Golden State Warriors professional basketball game. And, yes, there will be a surprise visit from Thunder-Warriors' mascot-for the patients.

- April 15: San Francisco Ballet at the War Memorial Opera House for a couple of patients and their family

- April 15, 2007: A patient and their family will be up close and personal at a Golden State Warriors basketball game. A meet-and-greet time with one of the players is planned.

***PLEASE CLICK VIEW PHOTOS TO SEE NICHOLAS AT EASTER 2006 and 2004***

Saturday, March 31, 2007 10:15 PM CDT
CHOOSING TO TAKE-IN NATURE'S LOVE, GOD'S LOVE
This morning at Nicholas' Oakmont Memorial Park in Lafayette another soothing, amazing scene was waiting. At first there were quails, butterflies, a beautiful blue sky, and colors galore all around.

 

The colors: The vibrant green grass and trees, rainbow of colors of flowers, the SpiderMan kite, the Easter flag & decorations, and some of Nicholas' toys.

The toys: Harlem Globetrotters' basketball; a SpiderMan, PeterPan, and PowerRanger action figure; dolphin squeeze toy that squirts water he bought in Denver; water gun; etc.

All these things were reflected in the golden gazing-ball on the site.

A butterfly sporadically flew around the site for awhile. The quail came back and "played" in the tree for quite awhile. The chirp of the quail is very distinct as they flap their wings. Those chirps sometimes took a backseat to the occasional chirping of flocks of birds flying around.

Remember the hawks and squirrels. The hawks made a soaring presence in eye-level view as they flew over the valley behind Nicholas' site, and a squirrel danced around.

There were soothing humming sounds heard from all around, mixed with chirps, buzzing, gobbles (from turkeys in the distance somewhere in the valley), wings fluttering, etc. It was like Dolby sound-it was nature in action.

On this very calm morning (weather), experiencing all these things was a prelude to warm, soft breezes followed by birds "here and there" and one quail resting under one of the bushes on the site. Other birds were hopping around the portion of Nicholas' site that slopes down toward the valley (Briones Regional Park). The first thought was…they were mimicking an Easter bunny! And a vibrant-blue bird, I guess sensing the safe and peaceful surroundings even as I sat just a few feet from the birdbath, landed and took a bath in the birdbath.

Nicholas thoroughly enjoyed all holidays and Easter was, certainly, one of his favorites. Remember the journals and pictures (before and after the diagnosis) about/of Nicholas coloring Easter eggs and hunting for Easter eggs? (Nicholas' favorite things are in the August 15, 2006 journal entry.)

***PLEASE CLICK VIEW PHOTOS TO SEE NICHOLAS AT EASTER 2006 and 2004***

RHETORICAL QUESTION: Have you sat and soaked in the love and joy around you? Just sit, listen, and look. God provides in some amazing ways here so we trust He delivers perfectly amazing things in Heaven; Nicholas knows this.

MARCH 2007 NICHOLAS COLBY FUND EXPERIENCES

- March 1, 2007: Disney on Ice - Disney Adventure was enjoyed by patients from Children's Hospital Oakland who filled the suite

- March 4, 2007: Disney on Ice - Disney Adventure was enjoyed by patients from the University of California San Francisco-Children's Hospital Oakland who filled the suite

- March 9, 2007: Golden State Warriors basketball game for patients from the University of California San Francisco-Children's Hospital Oakland who filled the suite

- March 12, 2007: The Wiggles - Racing To The Rainbow for a Stanford-Lucile Packard Children's Hospital patient and family

- March 16, 2007: Golden State Warriors basketball game for patients from Children's Hospital Oakland who filled the suite

- March 25, 2007: A gift to ease burdens for a Stanford-Lucile Packard Children's Hospital patient and his mother

- Continually, the "nutritional packs" are immediately available on site for every parent of a child going into the Pediatric Intensive Care Unit at Children's Hospital Oakland

 

Friday, March 30, 2007

(no journal written)

 

Thursday, March 29, 2007

(no journal written)
________________________________________
Wednesday, March 28, 2007 10:48 PM CDT
DANCING WITH JESUS, DANCING TOGETHER WITHOUT BEING TOGETHER (Physically; We are always more than just in each others' hearts and souls forever)
A new-found friend from Denver, Colorado shared a thought that we hold close to our hearts as well. The thought is…We did not have to have our child taken away from us to do the things that we do with our respective foundation/fund. We would gladly donate our time, energy, love, etc. to help create moments for a child (and their family) to smile. And, we trust and believe God enabling us to "just know" that God's will never stopping loving and providing everything for Nicholas, for us, and for all of you...

Nicholas had so many wonderful, beautiful smiles on his face…he created so many amazing smiles…and truly Nicholas with God's love is generating smiles EVERYWHERE Helping Children Be Children! We continually pray, trusting and believing that ALL OF GOD'S WORDS are delivering their promises to Nicholas…and need to know that God's words are doing all of those beautiful things for our beautiful Nicholas. We trust the smiles generated are just a fraction of the heavenly feelings providing Nicholas with EVERYTHING perfect, pure, and more than desired by Nicholas.

Today we cried again missing Nicholas, cried loving Nicholas, and cried out to God feeling that we were talking with Nicholas as well as God. And tonight we thought about another song that we loving shared, sang, and danced to with Nicholas. There are many elements of the song that help us to be close to Nicholas today, we trust tomorrow, and believe keeps us close to Nicholas forever:

"Dance With My Father" by Luther Vandross

Back when I was a child, before life removed all the innocence
My father would lift me high and dance with my mother and me and then
Spin me around 'til I fell asleep
Then up the stairs he would carry me

And I knew for sure, I was loved
If I could get another chance, another walk, another dance with him
I'd play a song that would never, ever end
How I'd love, love, love
To dance with my father again

When I and my mother would disagree
To get my way, I would run from her to him
He'd make me laugh just to comfort me
Then finally make me do just what my mama said

Later that night when I was asleep
He left a dollar under my sheet
Never dreamed that he would be gone from me

If I could steal one final glance, one final step, one final dance with him
I'd play a song that would never, ever end
'Cause I'd love, love, love
To dance with my father again

Sometimes I'd listen outside her door
And I'd hear how my mother cried for him
I pray for her even more than me
I pray for her even more than me

I know I'm praying for much too much
But could you send back the only man she loved
I know you don't do it usually
But dear Lord she's dying
To dance with my father again
Every night I fall asleep and this is all I ever dream

 

Tuesday, March 27, 2007

(no journal written)
________________________________________
Monday, March 26, 2007 10:52 PM CDT
REMEMBERING, ALWAYS AND FOREVER
We experience life DAY-BY-DAY without Nicholas, physically, and experience life with Nicholas, spiritually, in ways that God allows us to hold & pat Nicholas just the way he likes. Remember (May 1, 2006 and October 18, 2006 journals for example)? And we know that Nicholas understands us living without him physically by way of his amazing sense of love that is constant and truly never gone, never far. Remember when Nicholas said, "It's okay to spend time with your other sons too!" referring to a time when he was in the hospital and I was faced with a time one of our other sons wanted me to attend a basketball game with him.

As the 1st Quarter of 2007 comes to a close, copying and pasting the following link into your browser you will SEE LOVE-BEGETTING-LOVE AS SPIRITS ARE LIFTED and smiles generated on the faces of children from Children's Hospital Oakland, Stanford-Lucile Packard Children's Hospital, The University of California San Francisco-Children's Hospital, and others touched by The Nicholas Colby Fund…Helping Children Be Children:

www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

(Links to copy and paste to view the other Nicholas Colby Fund photo albums are above the daily journal content, under the heading called "CURRENT PICTURES")

To view the PICTURE/STORY BOOK about Nicholas' journey that was created by a friend, please copy and paste the following link into your browser:

http://preview.picaboo.com/Webview/CoverPage.aspx?album=0000000000002E098C&user=0000000000002E10CE
________________________________________
Sunday, March 25, 2007 10:57 PM CDT
EASTER APPROACHES AND LOVE THANKFULLY STAYS
We decorated Nicholas' site for Easter today and there were two surprises left at the site for Nicholas and us: A chocolate Easter bunny figurine for Nicholas and a Willow Tree figurine for Sheila.

SEEING LOVE: Seven pictures from today were added to the Nicholas Colby Fund 1st Quarter 2007 photo album (and you can quickly see two of them by clicking on the View Photos button at the top of this Home Page):

www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

PICTURES OF MANY OF YOU AND WORDS THAT HELP US: If you missed this past Thursday's journal, copying and pasting the following link into your browser you will be able to see & read an amazing gift to us…Nicholas in ways you have seen, in ways you have not seen, with many of you, and words to be heard and shared for evermore. As we said last week, all of what we see, feel, hear, touch, and smell that gives us joy is from God and because God is God…He enables Nicholas to forever live so wonderfully in our lives...Nicholas knew he was loved and surely must know that he is so loved today:

http://preview.picaboo.com/Webview/CoverPage.aspx?album=0000000000002E098C&user=0000000000002E10CE

NURSES STILL HELP BY NURSING OUR HEARTS: Seeing many of Nicholas' nurses from Stanford-Lucile Packard Children's Hospital today-on Nicholas' 10 month in Heaven and after we delivered a Nicholas Colby Fund package to a family at the Ronald McDonald House-infused our hearts with pieces of peace. Nicholas had an amazing relationship with all of the members of the medical team…they were and are his friends!

While we were dropping of treats for the medical team and for parents on the floor where Nicholas was treated, love-begetting-love was once again at work as interacting with the nurses helped to comfort our hearts. (And yes, there were mixed feelings not having Nicholas-physically-with us!)
________________________________________
Saturday, March 24, 2007 11:59 PM CDT
10 MONTHS IN HEAVEN (Sunday)
Tomorrow (Sunday) it will be 10 months that Nicholas has been in Heaven! Today and tonight we spent time with family and friends…and along with general conversations Nicholas was specifically part of many of those conversations. As HARD as it is being without Nicholas, the way all of you show up in our lives help us celebrate Nicholas and his presence even as we engage with "everyday life."

Today we were in Sacramento watching Nicholas' cousin, Alex, and her high school basketball team participate in a state basketball championship game. Seeing young adults (the high school kids) and children of all ages interact & play in different settings is sometimes extremely difficult…and we understand that life for others in those settings are their lives to relish and cherish. It is trusting God, "just knowing" that Nicholas in God's speed is not missing us because it is like only moments away, that enables us to enter the lives of others as well as our own knowing that the "circle of love" continually help us all get through the days and nights in warm, loving ways. We see it this way, although it is HARD, because we have not lost Nicholas knowing that he is held and loved by God!

A TRIP TOMORROW TO THE RONALD MCDONALD HOUSE (RMH) AT STANFORD-LUCILE PACKARD CHILDREN'S HOSPITAL
Referring to this past Thursday's journal, tomorrow (Sunday) we will be at the RMH responding to an opportunity to help a family in a way that keeps home a place where love grows-The Nicholas Colby Fund continually grateful to be able to help uplift the spirit of children (and their families).

EASTER
Tomorrow we will decorate Nicholas' site for Easter; yes, we will have pictures on this website and the 1st Quarter 2007 photo album.
________________________________________
Friday, March 23, 2007 11:59 PM CDT
A CEO, A CHEERLEADER, A PRESIDENT…PEOPLE AND THEIR LIVES INTERTWINED IN WAYS WITH NICHOLAS AND THE NICHOLAS COLBY FUND
Just a quick note about how everyone, near and far, from school to professions…share a bond with children in ways that Nicholas helps to create. Today, the lives of a CEO, a high school cheerleader, and a professional sports President engaged with us in special ways because of Nicholas' continued connections born from his love.

To say it in one breath: this afternoon dad had lunch with the CEO of AAA where mom & dad both work…this evening mom & dad interacted with a high school cheerleader before going to the Golden State Warriors' basketball game (you know this is Nicholas' team and they won tonight keeping them on a track toward making the playoffs)…and tonight mom & dad and Gina talked with the President of the Warriors at an event before the game they won over the Washington Wizards. It is not about the positions these three people hold, it is about the conversations diverse people in Nicholas' live have with us as well as people directly and indirectly in their lives that make it possible for many others to understand, know, and appreciate the simple joy children can have and the amazing impact "love-begetting-love has on all of our lives.

REMEMBER THE GIFT SHARED IN THE JOURNAL LAST NIGHT (Thursday)
By copying and pasting the following link you will be able to see & read the amazing gift…Nicholas in ways you have seen, in ways you have not seen, with many of you, and words to be heard and shared for evermore:

http://preview.picaboo.com/Webview/CoverPage.aspx?album=0000000000002E098C&user=0000000000002E10CE
________________________________________
Thursday, March 22, 2007 10:54 PM CDT
A ROCK, AN EMAIL…AND NICHOLAS' PERMANENT LOVE REACHING OUT TO HELP
Remember, last night's journal talked about the gift that visiting friends (Tina and Mitch) from Germany delivered to us. By copying and pasting the following link you will be able to see & read the amazing gift…Nicholas in ways you have seen, in ways you have not seen, with many of you, and words to be heard and shared for evermore:

http://preview.picaboo.com/Webview/CoverPage.aspx?album=0000000000002E098C&user=0000000000002E10CE

All of what we see, feel, hear, touch, and smell that gives us joy is from God and because God is God He enables Nicholas to forever live so wonderfully in our lives...Nicholas knew he was loved and surely must know that he is so loved today!

THE ROCK: Nicholas loved to collect rocks as many of you may remember from these journals. Today at Nicholas' site with Tina and Mitch, Sheila asked Tina about coming across a rock in Germany someday…and before Sheila could finish her sentence, Tina pulled out a rock she brought from Germany! Imagine that. The rock is engraved with "Nikko, Always Thinking About You! Tina and Mitch - Germany." It was placed at Nicholas site in the plant/flower bed.

THE EMAIL: Today we received an email from Stanford-Lucile Packard Children's Hospital about potentially "helping" out a family whose child also had a bone marrow transplant. Remember how we talk about love-begetting-love and circle of love? ALL OF US-INCLUDING YOU-FINDING WAYS TO JUST HELP SOMEBODY matters in do things that many of us may not fully know. Thanks for helping us enabling us to help others. All of us together provide love in ways that help uplift the spirits of children we continually touch through The Nicholas Colby Fund - Helping Children Be Children. Yes, we found a way to help this family and on Sunday we will meet the mother and child.
________________________________________
Wednesday, March 21, 2007 11:14 PM CDT
THE SKY, MOON, AND STAR…GOD, HEAVEN, AND NICHOLAS
As 10 months of Nicholas being in Heaven approaches (March 25, 2007), the pain in our hearts has spread to be more like pain throughout our bodies…everyday. And, thankfully, God's love along with our trust in God's love lets us know that Nicholas is more than all right. The more we focus on God, the more love spreads over our lives...helping us to get through the days and nights...and helping us to know more and more that Nicholas is more than all right because he is in Heaven "playing and having fun" along with sliding on magnificent rainbows while joyfully walking on streets of gold.

All the love spread through The Nicholas Colby Fund is Nicholas with God's love. Thank you, all, for helping us uplift the spirits of children that Nicholas continues to touch…Helping Children Be Children.

Tonight the periwinkle sky with cascading shades of blue set a beautiful background for the moon and a star right beneath the moon. This evening's sky provided a cool, calm sensation of love that seemed to set a warm mood as friends (Tina and Mitch) of Nicholas and ours from Germany came to visit us for a couple of days. And an amazing gift of love-many perspectives-was given to us tonight.

THE GIFT OF LOVE TONIGHT
Tomorrow night we will share this gift with you via a connection on Thursday night's journal. For this moment, we want to share a few aspects of the gift:

- Following are Nicholas' words on November 19, 2004, immediately after we were told that he had leukemia. As mom began to cry and dad closely held Nicholas and mom, Nicholas said, "Don't worry about me, I'll be alright."

- And following is part of what was shared by Tina and Mitch:

His Smile

Though his smile is gone forever, and his hand I cannot touch,
I still have so many memories, of the one I love so much.
His memory is my keepsake, with which I'll never part.
God has him in His keeping, I have him in my heart.

- And they shared this too:

Nikko, our little hero!

You will always be our little sunshine!
I wish Mitch could of met you but I told him all about you & he read your webpage with me all the time. He said you are his soldier, his little hero!

This picture was taken in Egypt. While we were on a Safari watching the stars, I was thinking about you. Come to find out later on you went to heaven around that time.

You are my angel who is watching over us!

Ich liebe dich, (means I love you in German)

Tina

 

Tuesday, March 20, 2007

(no journal written)
________________________________________
Monday, March 19, 2007 11:47 PM CDT
THE SIMPLE PLEASURE OF A KITE…AND ENDLESS TREASURES FROM NICHOLAS
The Home Page picture above and the first two of 3 pictures after clicking on View Photos, provide touches of love as the wind propels the SpiderMan kite and keeps it afloat even without us holding the string. We connected the string to the in-ground flagpole…and it felt like Nicholas was flying the kite.

Remember the wording on the back of the upright memorial marker (November 21, 2006 journal under Journal History, and picture in the Nicholas Colby Fund Begins album or the third photo album below this journal entry, under Links)?

Here is the web address for the Nicholas Colby Fund begins album:

www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

"I'll glide beyond the rainbows. I'll drift above the sky. I'll fly into the wonder, without ever wondering why.

I'll never be alone; I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one. And the circle of our spirits will shine brighter than the sun.

I'll have the love of those who loved me, and the warmth of those who cared…the happiness and memories and magic that we shared. I will cherish all the friendships I was fortunate to find, all the love and all the laughter in the place I leave behind. All these good things will go with me; they will make my spirit glow. And the light will shine forever in the next place that I go."

These are excerpts from the book, The Next Place, by Warren Hanson (The May 26, 2006 journal talks about the importance of these words and the book to us as well as the connection to Nicholas).

Seeing and feeling the wind as the kite glides, we think about all the wonders created by God and we think about God's work that is always perfect. We think about this because Nicholas is God's work and His work is perfectly everlasting…we are blessed to have endless treasures and feelings of Nicholas…never gone, never far…through God's love providing for Nicholas as God and Nicholas provide love to us.

 

Sunday, March 18, 2007

(no journal written)
________________________________________
Saturday, March 17, 2007 11:59 PM CDT
NICHOLAS, PRECIOUS NICHOLAS
Nicholas, we constantly think of you and feel the love that we amazingly share. We love you with every breath we take. Precious Nicholas, "playing and having fun" with Jesus must be amazingly wonderful and a joy that we trust keeps a smile on your beautiful face…while your spirit colorfully illuminates like the rainbows and gold you love to paint.

NICHOLAS COLBY FUND NUTRITIONAL PACKS AT CHILDREN'S HOSPITAL OAKLAND
Tomorrow (Sunday) we will deliver another supply of nutritional packs to the pediatric intensive care unit (PICU) at Children's Hospital Oakland. We began this action on January 20, 2007 and will continually do so…Helping Children Be Children by helping parents and/or guardians of children. We are very pleased that the administration and the hospital board that has oversight of an action like this that we are taking, approved The Nicholas Colby Fund to be a provider of this action.

One PICU social worker said, "The snack packs, by the way, have been a great success and have provided a much needed snack to many of our families. As you know, many of our patients come to the ICU unexpectedly. These snack bags really help to keep our families nourished until their child becomes more stable, and they can allow themselves to pull away from the bedside."

Remember, these packs have been put together by us and are immediately available on site to every parent and/or guardian of a child going into the PICU. Our precious Nicholas was (and is) so loved that he had the wonder & joy of love always present from God, from mom & dad every moment of the leukemia and bone marrow transplant journey (and before), from family, from friends, and from all of you that have become "friends." As we said before, we recognize that people are able to care and help in different ways-and all of you cared about Nicholas and constantly helped him as well as our family. Your caring and help, directly and indirectly, enabled us to be more present with Nicholas every step of every moment of the journey…love begetting love. And this action we are taking with the PICU is to help others during some very difficult steps as well.

NOTE: You can see these nutritional packs by accessing the "Nicholas Colby Fund 1st Quarter 2007" photo album. Simply copy and paste the following link into your web browser and scroll to the 1/20/07 and 3/18/07 pictures:

www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

ADDITIONAL THANKS: Thank you Diablo Foods of Lafayette for providing the granola bars and applesauce (to go along with a container of juice in each bag). And thank you Admac Digital Imaging for providing the Nicholas Colby Fund labels for the bags.

FOLLOWING IS THE WORDING OF THE PERSONAL NOTE THAT IS PLACED IN EACH BAG:

FRONT: The Nicholas Colby Fund - Helping Children Be Children (logo)

INSIDE: On November 19, 2004 our lives had been changed by the devastating Leukemia diagnosis of our beautiful 4 year-old son, Nicholas Colby Gilbert. (The youngest of four boys.)

We navigated the Leukemia and Bone Marrow Transplant (BMT) journey for 1 ½ years. On May 23, 2006, our son became critically ill and went into the Pediatric Intensive Care Unit (PICU). Understandably, our emotions were high and not knowing what the next moment would bring, we had no thoughts of leaving Nicholas' side. Our wonderful social worker brought us a nutritional pack, similar to this one, and encouraged us to eat and drink.

The PICU staff was lovingly attentive to Nicholas as well as us. And we were so thankful for the nutritional pack because we now know it was helpful toward providing the physical strength needed.

Early afternoon on May 25, 2006, our lives-once again-had been changed forever. One choice we were left with was two continue sharing Nicholas' amazing love, spirit, and inspiration: love begetting love…and The Nicholas Colby Fund - Helping Children Be Children was created. In addition to directly Helping Children Be Children, another action we wanted to take was what we hope will be helpful to you.

Please accept this nutritional pack from us to you. We hope it provides you with strength and, mostly, comfort knowing that many others care about your family.

This nutritional pack is provided through donations from Diablo Foods of Lafayette, CA (including other individuals and organizations) partnering with us and The Nicholas Colby Fund.

Warmly,

The Gilbert Family and The Nicholas Colby Fund

BACK: The meaning lies not in the knowing, but in the believing; not in understanding, but in having faith.

The Nicholas Colby Fund - Helping Children Be Children
(A registered non-profit organization)
1547 Palos Verdes Mall, PMB 260
Walnut Creek, CA 94597-2228

Website: www.caringbridge.org/ca/nicholascolbygilbert
(In the 2nd quarter of 2007 transitioning to www.nicholascolbyfund.org)

Email: info@nicholascolbyfund.org

 

Friday, March 16, 2007

(no journal written)
________________________________________
Thursday, March 15, 2007 10:40 PM CDT
THE WIND AND NICHOLAS FLYING A KITE
Do you remember the kite (thanks Kimmy) that was placed at Nicholas' Oakmont Memorial Park site a few weeks ago for all of us to fly at the site when the wind allows (February 19, 2007 journal)? While we have flown the kite several times...this evening the wind suspended the kite about 10 feet in the air…and we placed the handle holding the string, onto the in-ground flagpole that holds the various seasonal/special flags we place at the site. There was a lovely feeling of awe seeing the kite swaying back-and-forth, up-and-down by itself with the wind. It was like Nicholas was flying the kite.

Thank you, Nicholas, for the kiss…and here is another and another and another…kiss to you!

ANOTHER NICHOLAS COLBY FUND EXPERIENCE TOMORROW NIGHT (Friday)
Tomorrow night (Friday) patients from Children's Hospital Oakland will be Nicholas' guests in a suite at the Golden State Warriors' basketball game against the Minnesota Timberwolves. This is another Nicholas Colby Fund experience delivered to children toward Helping Children Be Children. And a surprise appearance by Thunder (Warriors' mascot) has been arranged to add a special touch to this night-Nicholas always enjoyed interacting with Thunder!

Photos will be placed into the Nicholas Colby Fund 1st Quarter 2007 album and you can view them by copying and pasting the following address into your web browser:

www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

 

Wednesday, March 14, 2007

QUICK NOTE
Friday night, March 16, The Nicholas Colby Fund is sending patients (and their families) from Children's Hospital Oakland into a suite to enjoy the Golden State Warriors vs. the Minnesota Timberwolves in a professional basketball game. You can see the flyer by clicking on View Photos.
________________________________________
Tuesday, March 13, 2007 10:47 PM CDT
BLESSINGS ARE ALL AROUND ALL OF US
Remember Nicholas singing, "stop, look, and listen…you don't know what you are missing…" As hard as some moments are-more than others-we know there are constant blessings. Thank you Nicholas for the constant message to stop, look, and listen! There have been many blessings like tonight when we read Matthew Tsern's journal (tsern.com) and also knowing that Kai Watanabe, Kaeli Downey, Noah Harris, and others of "these beautiful children" are doing relatively well.

We know how hard, painful, and scary some of these journeys are for others. And we know that God gave us a promise enabling us to get through the days and nights, enabling Nicholas to live…and live today with his amazing love and spirit caressing us everyday while Nicholas must be "playing and having fun" with Jesus.

THIS EVENING ONE OF "THESE BEAUTIFUL CHILDREN" JOINED US AT A WARRIORS' PARTY
The Golden State Warriors (professional basketball) held a Season Ticket Holder Party this evening. We arranged to have Troy and his mother be our guests. (Remember, Nicholas shared a room one night with Troy early on during Nicholas treatment at Children's Hospital Oakland.) The players, Thunder (mascot), cheerleaders, coaches, front office staff, and events for kids, children, and adults were plentiful. Troy was up close and personal with several players, Thunder, and all of the cheerleaders. Did you see the Home Page picture of Troy and one of the cheerleaders above? (The picture and another one is now on the Nicholas Colby Fund 1st Quarter 2007 album; you can copy and paste the following address to view it and all of the Nicholas Colby Fund photo album addresses are on the top portion of the Home Page.)

www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
________________________________________
Monday, March 12, 2007 10:04 PM CDT
THE GOODNESS OF GOD, OF NICHOLAS, OF NICHOLAS VIA THE NICHOLAS COLBY FUND
On the January 26, 2007 journal, the day before what would have been Nicholas' 7th birthday, we talked about God's goodness and the goodness of Nicholas. This past weekend was beautiful in terms of the weather: the sun brightly shinning, the warmth of a gentle breeze here and there, and love felt everywhere. Although we know Nicholas is heavenly loved, it was difficult to thoroughly enjoy the weekend…and we did find ways to enjoy the weekend, loving Nicholas every breath of the way. However, as a friend previously shared with us, "It does not get easier, it gets different."

The sky tonight was amazingly beautiful and as we pray and talk to Nicholas we began with loving God, trusting His words as Nicholas always trusted God. Sometimes Nicholas would say, "I know God loves me but how come He doesn't heal me now…?" We would say, "Yes, God certainly does love you son…and we know how we want to see the healing…but we do not know how God will reveal the healing…and we know that because God is God your healing is taking place…" We would then hold him, pat him (just the way he loved to be patted), walk with him in our arms, pray, sing, and simply love the heartbeats loving each other.

The Home Page PICTURE above of Sheila & me (Nicholas' mom & dad) is a reflection of love because of Nicholas, because of God, because of the love all of you share with Nicholas (and all of these beautiful children all of us meet along our individual and shared ways) including work toward Helping Children Be Children through The Nicholas Colby Fund. BY CLICKING ON View Photos you will see two NEW PICTURES…yes, about love.

We shared the following song in January and we are sharing it again because our hearts constantly beat loving Nicholas and grateful our other three boys express their love for Nicholas in ways that they never would have thought, never would have prepared themselves for. Yes, love begets love-thank you God…thank you Nicholas!

MY HEART WILL GO ON (By Celine Dion)
Every night in my dreams
I see you, I feel you,
That is how I know you go on

Far across the distance
And spaces between us
You have come to show you go on

Near, far, wherever you are
I believe that the heart does go on
Once more you open the door
And you're here in my heart
And my heart will go on and on

Love can touch us one time
And last for a lifetime
And never let go till we're gone

Love was when I loved you
One true time I hold to
In my life we'll always go on

Near, far, wherever you are
I believe that the heart does go on
Once more you open the door
And you're here in my heart
And my heart will go on and on

You're here, there's nothing I fear,
And I know that my heart will go on
We'll stay forever this way
You are safe in my heart
And my heart will go on and on

***You can hear it by going to several sites, including: www.ladyjayes.com/heartgoon.html***

Sunday, March 11, 2007

(no journal written)

Saturday, March 10, 2007

(no journal written)
________________________________________
Friday, March 9, 2007 11:59 PM CST
AMAZING MORNING: LOVE FROM NICHOLAS, LOVE FROM GOD
While we regularly have birds and squirrels "playing and having fun" in our yard and at Nicholas' Oakmont Memorial Park site, this morning amazing touches of love came our way. The walk this morning into the kitchen presented a brighter morning today! There were significantly louder chirps from birds at play. Looking over the sink into the backyard it seemed like an orchestrated display of…well something harmonious and planned.

There were literally dozens of birds-different sizes and colors-chirping, flying, swirling, and landing onto & around the bird feeder, the bird bath, the flowers, the bushes, the trees, the bench swing, Nicholas' "A" frame easel stand (for painting and drawing), the pool fence, and the pool. And the sun peaked over the roof illuminating the heavenly scene of what was purely love providing what love provides.

We thought more about Nicholas in more happy ways…and we thank God for his love today knowing that Nicholas is loved by and with God in simply beautiful and perfect ways!

BEAUTIFUL SURPRISES ALL ALONG THE WAY (and we thank God)
In yesterday's journal we talked about all of you and the things that you do, directly or indirectly, that have been a loving help to Nicholas, to our family, and now to Nicholas' vibrant legacy via The Nicholas Colby Fund - Helping Children Be Children. And all along the way you have been part of some beautiful surprises. Following are dates of journals (under the Journal History tab above) that provide your stories as backdrops to Nicholas…and the story continues.

May 5, 2007 - Dolphin
February 19, 2007 - SpiderMan kite
January 27, 2007 - Love, remember, forever
January 25, 2007 - Wood child's bench
December 19, 2006 - Angel Nicholas (guestbook)
October 27, 2006 - Telephone message from Denver, Colorado
October 25, 2006 - Roses, sky, moon, stars, breeze
October 19, 2006 - Nicholas and Hoku (dolphin)
September 26, 2007 - Clouds to embrace
May 17, 2006 - A sparkle and a glow
May 4, 2006 - Package of love from Hollywood
March 17, 2006 - Harp performance by friends and Nicholas saying "boo!"
…and so many more…

MAY 2007?
PLEASE CLICK ON View Photos tab above to see three pictures. The pictures are from May 2004, 2005, 2006, and as May 2007 approaches we feel that the perspective of these three pictures are just three of so many that capture the notions of love experienced: love begetting love, circle of love, & forever in our hearts and souls.

A FEW PICTURES OF LOVE FROM TONIGHT'S NICHOLAS COLBY FUND EXPERIENCE (copying and pasting the following address into your web browser)
Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
________________________________________
Thursday, March 8, 2007 11:59 PM CST
HELP HAS COME FROM CHILDREN, HIGH SCHOOL & COLLEGE STUDENTS, AND ADULTS
Nicholas felt it, we felt it, and we are sure Nicholas feels-through God-what we feel today. It is obviously a loving feeling to be part of love begetting love and the diversity of people asking to help The Nicholas Colby Fund…Helping Children Be Children. During Nicholas' leukemia journey and now we have had help in many ways from "all walks of life" from children to high school and college age kids and/or students…to adults.

The many experiences since Nicholas past on May 25, 2006 to uplift the spirit of children have lovingly impacted children and others from all over Northern California, primarily through our work with Children's Hospital Oakland, Stanford-Lucile Packard Children's Hospital, and The University of San Francisco-Children's Hospital. And help has come from organizations like the Golden State Warriors professional basketball team, Games Unlimited Toy Store, LeapFrog, Diablo Foods, iVenture Consulting, Oakland Ice Arena, Learning Technology Partners, Admac Digital Imaging, CSAA (AAA) Creative Services, etc. And significant help to deliver Nicholas Colby Fund experiences from Gina Baker (founder), Albert Treskin (logo), Luigi DiGrande (website), Diane Clouse (new experiences), and all of you from A-Z.

Thank you all for asking how you can help in addition to financial contributions supporting our delivery of all the experiences you have seen through this website and on the three Nicholas Colby Fund photo albums:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

Soon, on the website we will state specific volunteering needs that will help us to continue delivering the experiences that we have. Right now, it is very helpful in a comforting and therapeutic way for Sheila and I to be heavily involved in the administration, coordination, logistics (including putting together the various packages for the experiences), etc.

Nicholas' spirit and vibrant legacy of love, hope, trust, caring, giving, and sensitivity is forever in our hearts and souls…and shared with so many people now along the way. Again we say what is so true, we are blessed to have you in our lives. Thank you!

IMMEDIATE PLANNED UPCOMING NICHOLAS COLBY FUND EXPERIENCES
- Tomorrow night (Friday) patients from The University of San Francisco-Children's Hospital and their family members at a Golden State Warriors' basketball game.

- March 12 (Monday) a young boy from Stanford-Lucile Packard Children's Hospital will be at the HP Pavilion in San Jose to experience The Wiggles-Racing to the Rainbow.
________________________________________
Wednesday, March 7, 2007 11:59 PM CST
NICHOLAS COLBY FUND EXPERIENCE ADDED FOR MARCH 9
ADDED: This coming Friday night patients from The University of San Francisco-Children's Hospital and their family members will be in a suite to have a great time out at a Golden State Warriors' professional basketball game, via The Nicholas Colby Fund.

THE WIGGLES ON MARCH 12
REMEMBER: Monday, March 12, a young boy from Stanford-Lucile Packard Children's Hospital will be at the HP Pavilion in San Jose to experience The Wiggles-Racing to the Rainbow. The adult entertainers that make up The Wiggles have rewritten the book about how children can be entertained with song and dance. PLEASE CLICK ON View Photos to see the flyer (1 of 3 photos to instantly view).

The February 21, 2007 journal talks about the connection between Nicholas and the parents of a little boy Nicholas met at Children's Hospital Oakland. This little boy's parents donated the tickets for The Wiggles, love begetting love, and The Nicholas Colby Fund added something extra to this experience for the family…Helping Children Be Children.

NOTES
- Today was the birthday of Nicholas' teacher, Ms. Shirley-Happy Birthday Ms. Shirley!

- No journal was written yesterday…we just needed more time to pray, contemplate, and take in blessings Nicholas received, and pray.

Tuesday, March 6, 2007

(no journal written)
________________________________________
Monday, March 5, 2007 11:46 PM CST
NICHOLAS DOING WHAT ANGELS (ALL OF THESE BEAUTIFUL CHILDREN) DO
The Nicholas Colby Fund - Helping Children Be Children helps children in ways that sometimes are not even seen. Like we say about Nicholas, "Our angel, Nicholas…we don't have to see you, to know you are here." One nurse and doctor wrote on a guestbook entry on this website months ago about Nicholas' story continues, referring to the engagement with patients and their families when a beautiful story about Nicholas surfaces to provide help in some amazing ways. And, we say "all of these beautiful children" specifically referring to those with leukemia or other life threatening illnesses.

NOTES
- The next Nicholas Colby Fund experience is March 12 and we will talk about that event later this week.

- While these journals and The Nicholas Colby Fund photo albums (website addresses on the Home Page above the daily journal) keep you up-to-date on experiences delivered for children, the journals continue to be a comforting help to us as well. Of course, everything associated with warmly communicating through the website is a pleasant help to us. However, tonight we are painfully missing Nicholas' physical presence…AND we just know that God wonderfully and beautifully has Nicholas perfectly in Heaven…

- A lei from Hawaii was placed at Nicholas' Oakmont Memorial Park site tonight. It was a gift from Nicholas' life-long friend Joey and his parents who just returned from Hawaii. In May 2004 Nicholas and Joey were playing and having fun in Hawaii together.

- A few days ago someone left another beautiful surprise for Nicholas at the Oakmont Memorial Park site. It was a pewter dolphin statute. (Remember, Nicholas loves dolphins and has wonderful memories forever of swimming with dolphins and snorkeling in the ocean while mom spotted dolphins "playing and having fun." The first album below, under Links, provides snapshots of some of these experiences.)

- As always, if you have missed any of the journals, remember all previous journals are chronologically kept under Journal History.
________________________________________
Sunday, March 4, 2007 8:59 PM CST
EXPERIENCES FOR CHILDREN
Tonight ends the Nicholas Colby Fund's three evening Disney on Ice experience for patients from Stanford-Lucile Packard Children's Hospital, Children's Hospital Oakland, and the University of California at San Francisco-Children's Hospital. Aside from ongoing experiences like the nutritional packs continuously provided for parents of a child in the pediatric intensive care unit at Children's Hospital Oakland, there are several instant-fun experiences The Nicholas Colby Fund provides at the children's hospitals such as delivering lollipops, bottles of bubbles, and even pizza deliveries toward Helping Children Be Children.

In journal entries to follow we will talk about experiences to round out the first quarter of 2007.

NICHOLAS' EXPERIENCES THE YEAR BEFORE THE LEUKEMIA DIAGNOSIS
In our journal entries we often talk about love begetting love, and a circle of love. We always talk about Nicholas' vibrant spirit living on through his legacy of love, hope, trust, caring, giving, and sensitivity that amazingly lets us know that he is never gone, never far.

The ocean / pool, basketball, swinging on swings, rock climbing, and even sunsets are some of the experiences Nicholas embraced throughout his life. During the year before the leukemia diagnosis Nicholas was enjoying all of these things (and thankfully he enjoyed them after the diagnosis as well). The first photo album below (under Links) called "Nicholas, past 6 months before diagnosis to Day 79" provides snapshots of all these wonderful experiences. Just in this one album you will see at least five pictures of each of his experiences: at the ocean / pool, basketball, swinging, and in costumes.

CLICKING ON View Photos you will instantly see three pictures: with mom, with a sunset, and with dad.
________________________________________
Saturday, March 3, 2007 11:59 PM CST
NICHOLAS, FAMILY & FRIENDS, AND BASKETBALL
Do you remember all the journals about Nicholas and basketball? Not just during his leukemia journey, but before the diagnosis as well. And do you remember how family, friends, and new acquaintances that became friends shared amazing stories of their interaction with Nicholas? Nicholas had a gift that, truly, wonderfully touched all that he met…and through God Nicholas is wonderfully touching people today…so his story continues.

Do you remember Jordan Fillmore, who is like a brother to Nicholas along with Nicholas' other three brothers (Chris, Timothy, and Matthew)? There are many journals here written about Jordan as well. PLEASE CLICK ON View Photos to see Jordan and Nicholas in 1 of the three pictures.

Do you remember Alex Cowling, who is one of Nicholas' cousins? There are also many journals about Alex. PLEASE CLICK ON View Photos to see Alex and Nicholas in 1 of the three pictures.

REMEMBERING the wonders of love that is a gift that gives even when you may not see the giver was warmly remembered tonight.

- Jordan who lives in Lafayette (where we do) as well as other family friends Joe McGlynn and Ryan Clouse play basketball for Acalanes High School of Lafayette. Tonight Acalanes won the North Coast Section basketball championship for their division! Jordan has always visited Nicholas' Oakmont Memorial Park site before his basketball games and always leaves an "away message" on his cell phone for those who try to reach him on game nights. Tonight Jordan's away message read: "Thank you for all the support, everybody, family and friends. This one is for you, Nikko! I knew we could do it. Love you brother."

- Alex who lives in Benicia plays basketball for St. Patrick/St. Vincent of Vallejo. Tonight St. Patrick/St. Vincent won the North Coast Section basketball championship for their division! Alex was always visiting Nicholas at home and in the hospital-what a beautiful relationship that carries on.

Off to the Northern California tournament for both Acalanes and St. Patrick/St. Vincent and love follows. Remember: Our angel, Nicholas…we don't have to see you, to know you are here.

DISNEY ON ICE VIA THE NICHOLAS COLBY FUND - HELPING CHILDREN BE CHILDREN WILL BE EXPERIENCED BY MORE PATIENTS:
- Tomorrow (Sunday) by patients and their families from the University of California San Francisco-Children's Hospital
________________________________________
Friday, March 2, 2007 11:59 PM CST
NOT LOST, PASSED AND HELD
It may seem normal for many parents, or others, to say the phrase-"I lost (a loved one)"-and sometimes the phrase has nervously escaped from our mouths. On the way to work this morning I saw a parent with her child (like many moments on any given day) and I suddenly had some somber heartbeats. Thankfully, it was also at that moment that, once again, I felt love…helping me to know that we have not "lost" Nicholas!

God has always been "there" for Nicholas-for us-and with us all in ways that He just knows we need. Through God, Nicholas is never gone, never far, in our hearts and souls forever. And in other beautiful and spiritual ways we are blessed to know that Nicholas has not been lost as he is with God.

We trust and believe God's love. Nicholas has "passed" and he is "held" by God. Nicholas loves to be held, remember? And do you remember the song, Held, that was sung during the Memorial Service? Following are the words (it can be heard by accessing www.nicholascolbyfund.org, clicking on Sound Tracks, and then clicking on Held).

"Held" by Natalie Grant, sung on June 2, 2006 by Linda Freitas:

Two months is too little
They let him go they had no sudden healing
To think that providence would take a child from his mother while she prays is appalling

Who told us we'd be rescued
What has changed, and why should we be saved from nightmares
We're asking why this happens, to us who have died to live it's unfair

This is what it means to be Held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell we'd be Held

This hand is bitterness we want to taste it,
Let the hatred numb our sorrows
The wise hand opens slowly to lilies of the valley and tomorrow!

This is what it means to be Held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell we'd be Held

If hope is born of suffering,
If this is only the beginning
Can we not wait for one hour
Watching for our Savior

This is what it means to be Held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was-"when everything fell, we'd be Held"

We'd be Held
And this is what it is to be loved and to know
That the promise was when everything fell, we'd be Held

This is what it means to be Held!

REMEMBER THE POEM THAT ONE OF NICHOLAS' DOCTOR WROTE ABOUT HIS EXPERIENCES WITH NICHOLAS (read during the Memorial Service)?
"Something About Nick" by Dr. Dahl

Lying still yet just awake
in quiet anticipation he'd wait
For you to come and say hello
For he would keep a secret trick to show

As a doctor you'd stop by to chat
But he wouldn't let it stop at that
His hands were hiding something new
You'd have to discover what it would do

Would it flutter could it float
Was it a spider or a goat
You'd have to just wait and see
Nick kept it held in secrecy

What's the word that can best describe
A boy who's so brightly alive
Each small achievement a great success
Finally jumping, all of us impressed

An energetic boy you see
Can deal with adversity
Like none of us as yet can know
He shows us the path to go
________________________________________
Thursday, March 1, 2007 10:40 PM CST
WEEKENDS
As the weekend approaches, we think about how we planned weekend experiences that were fun or just different when Nicholas was in the hospital. Of course, we did fun things during the week, however, during the weekends in the hospital we wanted to create a weekend experience.

And the lesson today with Nicholas' beautiful spirit and love…is to plan weekends to be different…helping love to do what love does. We try to do these things for ourselves, for and with our family, for and with our friends.

DISNEY ON ICE VIA THE NICHOLAS COLBY FUND - HELPING CHILDREN BE CHILDREN WILL BE EXPERIENCED BY MORE PATIENTS:
- Sunday by patients and their families from the University of California San Francisco-Children's Hospital

PLEASE CLICK ON:
- View Photos to see 3 pictures immediately (Nicholas with some classmates and Nicholas with mom)

- The 3 Nicholas Colby Fund photo albums to see love begetting love, Helping Children Be Children. To access please copy and paste the links, above on this Home Page, into your browser.

- The links below to see where are the love comes from via God.
________________________________________
Wednesday, February 28, 2007 11:59 PM CST
EVERY SINGLE DAY THERE IS LOVE HELPING US KNOW THERE IS LOVE
Every single day we wonder how we will get through the day, with the pain that piercingly hurts each day although the amazing memories and touching spirit of Nicholas is wonderfully all around us. And we remember what we would do and say with Nicholas…we pray knowing God loves us and His love continues to deliver love in ways that we would not expect. We thank God for being God…and these remembrances again and again let us know that Nicholas is perfectly safe & warm in His arms. And Nicholas is "playing and having fun" with Jesus.

DISNEY ON ICE VIA THE NICHOLAS COLBY FUND - HELPING CHILDREN BE CHILDREN WILL BE EXPERIENCED:
- Tomorrow (Thursday) by patients and their families from Children's Hospital Oakland

- Sunday by patients and their families from the University of California San Francisco-Children's Hospital

Tuesday, February 27, 2007 10:39 PM CST
WHAT NICHOLAS SAID IS NEVER FORGOTTEN
Do you remember the October 22, 2005 journal? Although our older boys (17, 13, and 11 years older than Nicholas) always had the same level of attention and love growing up, Nicholas reminded us of another lesson that is never forgotten.

 

It was late afternoon on October 22, 2005 and we were in the hospital with Nicholas (well we were always with him in the hospital). One of our older sons called asking if dad could meet him at a basketball game. Nicholas overhearing dad on the phone say, "I should stay with Nicholas and mom…" said the following to dad in a sincere, sensitive voice. "Dad, it's okay, you need to spend time with your other sons too." We mention this tonight because it is another amazing life lesson from Nicholas, even when he needed attention for obvious reasons.

Our love and attention remembering Nicholas and toward our other three boys is not measured in equal terms toward any of them. Our actions are focused toward providing for each of them, AND we think about Nicholas' words, "it's okay to spend time with your other sons too," as reminders to pay attention where attention needs to be, when it needs to be, and how it needs to be. Our older boys have gone through so much during Nicholas' leukemia journey and today missing their little brother so, so much. We are blessed to know the love all four of our boys shared and share today...because Nicholas is never gone, never far...as he is part of our lives everyday.

DISNEY ON ICE VIA THE NICHOLAS COLBY FUND - HELPING CHILDREN BE CHILDREN WILL BE EXPERIENCED:
- Tomorrow (Wednesday) by patients and their families from Stanford-Lucile Packard Children's Hospital

- Thursday by patients and their families from Children's Hospital Oakland

- Sunday by patients and their families from the University of California San Francisco-Children's Hospital
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Monday, February 26, 2007 11:59 PM CST
REMEMBERING AND LIVING
On the last few journals we talked about finding a way…, a gift from God, Nicholas our precious sunshine who loves rainbows, pots of gold, and everything in between as well as sharing and giving. Nicholas continues to give through his love and share through his spirit.

Along with writing, reading, acting, playing sports, helping in and around the house, Nicholas liked to sing & dance. We think about these things tonight because the song, "Count It All Joy," floated through our hearts as we thought about the last few journals. (Remember, yesterday's journal provide directions to hear this song and others via www.nicholascolbyfund.org.)

EXCERPTS FROM "COUNT IT ALL JOY" (by BeBe and CeCe Winan)
It is hard to understand sometimes
Is there a master plan
How do I make sense of everything I'm going through

So count it all joy, all that you're going through
Even when you are feeling down
Count it all joy, each moment is a gift to you
So turn it all around
And even in the darkest night
If you look hard enough
There's a trace of sunlight waiting there
Yes, waiting there for you

Been searching everywhere to find
That rainbow in the air
Whenever I came close it just seemed to disappear
I had to change my point of view
Start looking at myself
I can't believe I never knew
Everything that I need
Was right here, yes inside of me

NICHOLAS COLBY FUND RELATIONSHIP WITH UCSF-CHILDREN'S HOSPITAL
Tomorrow (Tuesday) The Nicholas Colby Fund begins a relationship with the University of San Francisco-Children's Hospital. Just like the relationships at Children's Hospital Oakland and Stanford-Lucile Packard Children's Hospital, this new relationship broadens Nicholas' spirit and our reach of Helping Children Be Children.

REMEMBER, AS THE STORY CONTINUES
- The story begins before and during the leukemia journey via the three photo albums below, under Links on the Home Page. Click on the links to access.

- The story continues via the following three smaller photo albums. Please copy and paste the link into your browser. (Moving forward, until we transition to the www.nicholascolbyfund.org site, these three smaller albums will have their access information on the general Home Page information of this CaringBridge website.)

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

NOTE: Two of the 3 photos under View Photos of Nicholas with mom & dad are posted relative to journals this past Friday and Saturday nights.
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Sunday, February 25, 2007 9:42 PM CST
NICHOLAS: MEMORIES OF EVERLASTING JOY AND LOVE
On the 9th month of Nicholas being in Heaven…but never gone, never far because Nicholas is in our hearts and souls forever…today and tonight we lovingly reflected on Nicholas. We reflected on his sweet smell, the beautiful sound of his voice, his dazzling-gazing eyes, the heavenly taste kissing his cheek, and his touch that warmly radiates throughout all of our senses letting us know our precious Nicholas is missed as well always felt.

What wonderful, comforting words from the poem and message we shared on Friday and Saturday night journals, respectfully. We thank God for loving Nicholas during all of the yesterdays, today, and all of the tomorrows. And we thank God for all of you for being amazing friends during all of the yesterdays, today, and hopefully all of the tomorrows. Nicholas has-and we have-been blessed and we knew we were blessed along the way. We are thankful for all of these gifts from God-especially the gift of Nicholas!

Tonight we watched the Video Tribute that was played during the Memorial Service. Although this video tribute is not currently accessible online, you can hear all of the songs in order via www.nicolascolbyfund.org, clicking on Sound Tracks, and clicking on each of the 9 songs from The Loving Tribute To Nicholas.

"BY HEART," SONG BY JIM BRICKMAN (pianist)
Hold me close, baby please
Tell me anything but that you're gonna leave
As I kiss this fallen tear
I promise you I will be here

Until the stars fall from the sky
Until I find the reason why
And darling as the years go by
Until there's no tears left to cry
'Til the angels close my eyes
And even if we're worlds apart
I'll find my way back to you...
By heart

When you go, I'll stop the clock
I won't ever let this moment stop
Time is stealing you from me
But it can never take this memory

Until the stars fall from the sky
Until I find the reason why
And darling as the years go by
Until there's no tears left to cry
'Til the angels close my eyes
And even if we're worlds apart
I'll find my way back to you...
By heart.
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Saturday, February 24, 2007 11:59 PM CST
9 MONTHS AGO
Tomorrow (Sunday, February 25, 2007) it will be 9 months that Nicholas has been in Heaven. Once again we trust God's love to unquestionably do what God said He would do-love. And with love, we just know…

Thinking about and listening to the songs that make up the Video Tribute played during the Memorial Service ALONG WITH those sang during the Memorial Service and Celebration of Life, the titles alone provide a warm, loving, inspirational message: Nicholas' Song of Love…If I Can Help Somebody…Held…For Good…Step In The Name Of Love…You'll Be In My Heart…Beautiful Soul…Beautiful…Never Gone…Old Friends…Joy…Count It All Joy. (All the songs are accessible via www.nicolascolbyfund.org, clicking on Sound Tracks, and clicking on the song you want to hear.)

It is still not easier, getting through each day and night, although it continues to become different each day and night. Becoming "different" is not bad but it is not great either. This is hard for us to understand and certainly hard to explain. However, we do trust and love God knowing he will "make a way" for us. Following is an excerpt from the song, God Will Make A Way (By Integrity Music-Songs Of Hope):

God will make a way,
Where there seems to be no way.
He works in ways we cannot see,
He will make a way for me.

He will be my guide,
Hold me close to His side.
With love and strength for each new day,
He will make a way.

TONIGHT: A MESSAGE DAD RECEIVED (last night we posted a similar poem mom received)
Following is an excerpt from the September 30, 2006 journal providing a message dad received from a friend. And the Home Page picture above of Nicholas & dad…the beauty of two hearts and souls forever together…is from the first album below under Links.

"I looked at the web sites and read and felt his life. My heart is full as I think of what you and your family have been going through. I looked high and low for a card and just couldn't find anything that said what I thought I may want to hear in your situation. So I took to (my) thoughts to see if there was something I would want to hear...and what I heard was a little boy named Nicholas who I did not know but who simply said:

'When they gave me a choice to pick out my dad I picked you.
When God asked me where I'd like to live I told Him I wanted to live with you.
When asked who do you want to teach you things I smiled and pointed to you.

Everyone knew I was happy, they could see it in my eyes...I was very happy.
When they asked me what I'd like to say I simply smiled and said I know your sad dad and I know you miss me, when you're still and you fill the wind across your face that will be me.

Know there are blessings in the wind, there are blessings in my passing like the day I'll see you again. Dad (and mom) I love you!'"
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Friday, February 23, 2007 11:59 PM CST
SCHOLAR AND A COACH?
Mom has been the scholar, while dad has been the coach, during the leukemia journey and now. Mom read virtually every book that surfaced on leukemia enabling her to be more than be informed-to understand that which was known, and to help determine that which could be known medically to help moving forward. And dad directed how Nicholas and our family were going to be during the journey-not knowing what God's plans were, however, knowing that God's omnipotence, omnipresence, and omniscience were certainly laying out illuminating-streets of gold and beautifully-bursting rainbows along the way.

We think about poems and messages we have received from family and friends along the way. And many of them remind us that God so loves us all that, to us, he chose Nicholas for us and chose us for Nicholas. We like to think that Nicholas happily chose us as well. Nicholas made us happy and makes us happy today knowing that, Nicholas, we do not have to see you to know you are here.

TONIGHT: A POEM MOM RECEIVED (tomorrow night we will post a similar message dad received)
Following is a poem mom received that has the picture of Nicholas & mom as a watermark…the beauty of the setting sun and love's forever glow. (Home Page picture above from the first album below under Links):

Sweet little one… (Nicholas Colby Gilbert)

"I believe that our sweet little ones that we birth actually choose us.
They stand in heaven with the angels until they can stand here on earth among us.
All that I am, is only that much more wonderful because you chose me to be your mother.
When you stood there next to God and said 'I choose no other.'

From the beginning you've been a miracle that was so remarkably created.
Bringing me this feeling of purity, peacefulness, and leaving me elated.
In an instance, my life began a new path as your life began to grow.
Within my womb and my heart, from inside and out, you've made me glow.

I carried you inside protected from all that could bring you harm.
Til' the day you came to be placed within my protecting arms…
With each day we shared together my love grew deeper.
I kissed away your tears from each scrape, bruise and fever.

Doing what I could to heal you with a mother's loving hand.
I have fed your heart with the love from mine unconditionally and without demand.
I feel your smile even when you're not visible nor near.

I can see your pain when you're crying even though I may not hear.
Your laughter sings out so clearly inside of my heart.
Even if for now in this moment we may be apart.
I taught you the simplicities in life that you would need.
But I have learned so much more from you, I can say that indeed.
Every minute I cherish and I know that with every breath I take I am thankful for your love, which I shall never forsake.

I can not fathom for a moment why you had to endure what you've gone thru.
How someone so remarkable like you has had to do.
If I could have replaced all those things that brought you pain and left you feeling sad.
Please know that…hesitation is never a thought I have ever had.

I know that through out the rest of my days,
You will be the sunlight that shines my way.
I will rejoice in the happiness and pride you've always given to me.
Just for being here on earth and choosing me.

So to you my sweet little one…
Fly amongst the angels but once again.
As I shall never set you free from my heart…love your mother (and father), love your friend."

(Angel 2006 by Angela M Ortiz-Alexander)
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Thursday, February 22, 2007 11:59 PM CST
SEARCHING, PRAYING TO UNDERSTAND WHAT IT IS WE FEEL
It is extremely hard to respond to questions saying we are "okay" or we are "fine." And, at the same time we also feel God's loving presence along with Nicholas' loving presence. We are surrounded with blessings!

We have said before that our hearts are comforted knowing the wonderful, embracing relationship Nicholas had-and has-with God. These realizations coupled with believing and trusting God, thankfully, are providing us with many warm layers of love that soothes our hearts and souls. And, it is not blindly just believing and trusting…we have seen God's love surround Nicholas, especially during Nicholas' leukemia journey, and seen love flow to and from Nicholas in the midst of that journey.

So while it is hard to say we are "okay" or "fine," we just know that Nicholas is loved even more today and that is more than okay or fine. We are thankful for love and we are thankful, always loving Nicholas and feeling Nicholas loving us as well as his spirit & legacy sharing love through The Nicholas Colby Fund - Helping Children Be Children.
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Wednesday, February 21, 2007 11:59 PM CST
ANOTHER NICHOLAS COLBY FUND EXPERIENCE BEING ADDED FOR MARCH
We are adding a third Disney on Ice experience in addition to the February 28 and March 1, 2007 experiences being provided for Stanford-Lucile Packard Children's Hospital (LPCH) and Children's Hospital Oakland (CHO), respectively. To date we have primarily focused on delivering Nicholas Colby Fund experiences toward Helping Children Be Children for patients from the two Bay Area children's hospitals above where Nicholas was a patient (although we have included patients from other hospitals as well as the University of California San Francisco-Children's Hospital).

We are now working to establish relationships with the University of California San Francisco-Children's Hospital that are similar to those at LPCH and CHO. To begin, we are offering a March 2007 Disney on Ice experience for their patients.

BY THE WAY
Referring to the February 19, 2007 journal regarding The Wiggles March 12 experience, the tickets to the event were donated by the parents of the little boy that Nicholas gave his teddy bear to when Nicholas was at Children's Hospital Oakland. As we have been saying, love begetting love! (Giving of his teddy bear took place early in Nicholas' leukemia journey; however, we talked about it in the August 10, 2006 journal entry.)
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Tuesday, February 20, 2007 11:00 PM CST
STOP…LOOK…LISTEN
Today and tonight the words "stop, look, and listen" were very helpful toward getting through the day in a better way. And as 9 months in Heaven approaches (2/25/07), we continually trust Nicholas is "playing and having fun" with Jesus and in God's arms.

It was about 5 months ago we talked about stop, look, and listen and following is what we said then and say tonight that reminds us to "just know…"

We remember, when we were kids, the words "stop, look, and listen." We think about these words now because when we "stop," "look," and "listen" during everything in our lives we can "see" and "hear" the joy that nothing can take away from us. It is joy unmistakably given to us by God…the joy of Nicholas that is never gone, never far, and forever in our hearts and souls. It is the joy of our other three boys…the joy of family, friends/neighbors/colleagues, and those who continually show up in our lives and become friends.

As we write this journal, in the moment we "stopped" and "listened" to the joy in our hearts because of God. In doing so we were reminded-thank you Father, God-of a video we took of Nicholas on April 9, 2006…he was playing on his laptop and interacting with a safety program. The program he was interacting prompted Nicholas to sing to it (and that is when we grabbed the video camera and videotaped him singing): "…stop, look, and listen…you don't know what you are missing…" And the genuine singing of the words, swaying of his arms/hands, and movement of his lips, his eyes, his head told us that he was happy and full of joy (in spite of all the leukemia and bone marrow stuff).
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Monday, February 19, 2007 11:11 PM CST
KITES AND FLAGS
Relaxing day, and as always, coupled with loving our three older sons we were loving Nicholas so very close to our hearts.

KITES…This evening there was yet again, another beautiful surprise left for Nicholas at the Oakmont Memorial Park site. It was a SpiderMan kite tied around the bench on his site (please click on View Photos although the kite is not in the picture you will see of the bench and a portion of his site). Although the handle and string were tied onto the leg of the bench, the kite was fluttering in the air with the breeze. What a treat, Nicholas just knows that he is so loved. Thank you!

FLAGS…Many of you know that we decorate Nicholas' Oakmont Memorial Park for holidays and seasons. Today we took down the Valentine's Day decorations and will be preparing for St. Patrick's Day. Did you see the picture of the Valentine's Day flag that was hanging over the flat marker at the Oakmont Memorial Park site? (It is on the Nicholas Colby Fund 1st Quarter 2007 album.) Today we placed a sports flag in its place: basketball, football, baseball, and soccer collage. Up next will be a St. Patrick's Day flag, followed by Easter, Butterflies, and Popsicles. Then Sail Boats, Fourth of July (Independence Day), Fall, Halloween, Thanksgiving, Christmas, New Year's, and Nicholas' birthday (January 27).

UPCOMING NICHOLAS COLBY FUND EXPERIENCES THAT ARE SCHEDULED
- February 28, 2007 Disney on Ice (A Disneyland Adventure): A suite at Oracle Arena will be filled with patients, and their families, from Stanford-Lucile Packard Children's Hospital.

- March 1, 2007 Disney On Ice (A Disneyland Adventure): A suite at Oracle Arena will be filled with patients, and their families, from Children's Hospital Oakland.

- March 12, 2007 The Wiggles (Racing To The Rainbow Live!): A Stanford-Lucile Packard Children's Hospital patient and family will enjoy these children entertainers that have rewritten the book about how children can be entertained with song and dance.
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Sunday, February 18, 2007 11:59 PM CST
VIDEO AT THE VIEWING SERVICE
Following is the web address to view and hear the June 1, 2006 Viewing Service video that was playing at Oakmont Memorial Park the night before the Memorial and the Celebration of Life services held on June 2, 2006. This video primarily shows Nicholas & family members, captions, and includes quiet music enabling soothing reflection moments. Please copy and paste the following address into your browser:

- www.mem.com/display/Tributes.asp?ID=1378014

- Select "Movie" under the menu bar on the right side of the page

- Turn your PC speakers on and you will then hear, see and have another opportunity to reflect on the love surrounding Nicholas

(This video is not the Video Tribute that was shown during the June 2, 2006 Memorial Service.)

LINKS
Remember, referring to the "Links" section toward the bottom of the Home Page, below "Hospital Information," you can click on any one of the photo albums to view LOVE SURROUNDING Nicholas before the leukemia diagnosis, during treatment, and leading up to the bone marrow transplant & beyond. Love begetting love…

OTHER ONLINE PHOTO ALBUMS
Copying and pasting the following address into your browser you will see photos of some of the beautiful children experiencing The Nicholas Colby Fund. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
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Saturday, February 17, 2007 11:57 PM CST
TREATS FOR PATIENTS TODAY
It was dad's birthday today and we remember how Nicholas liked to give to others on his birthday, so mom had an idea to give some more treats to LPCH patients today as we were in route to Capitola. The treats: Sees Candies' lollipops, peppermint sticks, and some bubbles to blow either in their room, inside the hospital, or out on the patio of the hospital.

(The picture above was two years ago when Nicholas was singing Happy Birthday and combined a kiss with a smile.)

REMEMBER
Copying and pasting the following address into your browser you will see photos of some of the beautiful children experiencing The Nicholas Colby Fund. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
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Friday, February 16, 2007 10:23 PM CST
NO JOURNALS PLANNED FOR THIS WEEKEND
Thanks for staying with us and being directly or indirectly part of The Nicholas Colby Fund - Helping Children Be Children.

REMEMBER
Copying and pasting the following address into your browser you will see photos of some of the beautiful children experiencing The Nicholas Colby Fund. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
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Thursday, February 15, 2007 11:24 PM CST
ANOTHER NICHOLAS COLBY FUND EXPERIENCE, ANOTHER HOLIDAY WEEKEND, AND ANOTHER DAY…
This coming Saturday night The Nicholas Colby Fund will have patients and their families at the Oracle Arena to enjoy FREESTYLE MOTOCROSS. Another experience, another holiday weekend, and another day for all of us to make the most of our time with family & friends.

Following Saturday night's Nicholas Colby Fund experience for patients, on February 28, 2007 and March 1, 2007 we are filling our suite at the Oracle Arena for DISNEY ON ICE to be experienced by Stanford-Lucile Packard Children's Hospital and Children's Hospital Oakland patients, respectively. Helping Children Be Children.
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Wednesday, February 14, 2007 11:59 PM CST
TOUCHES OF LOVE
Touches of love tonight came from Stanford-Lucile Packard Children's Hospital (LPCH) and Children's Hospital Oakland (CHO):
- After dinner at Nicholas favorite Japanese restaurant, Blue Ginko, we went to a movie called Music & Lyrics because it had the flavor of the meaning of Valentine as we described in last night's journal. The touch of love from CHO came right before the movie started. As we sat down, sitting next to us was one of Nicholas nurses from CHO, Allison. We shared warm, loving memories and current thoughts of Nicholas' love and our love for Nicholas

- From LPCH we had an opportunity to talk with some of the nurses over the telephone. We reflected on Nicholas and the loving, engaging way he and the nurses truly shared love. These are other examples of knowing Nicholas was blessed…loving relationships that are with him forever.

- The Nicholas Colby Fund delivered pizza to patients, their families, and the medical staff tonight. All part of Helping Children Be Children on this Valentine's Day.

- And two surprises came to our front door today. First, this morning Nicholas' teacher left a beautiful flower arrangement and cards for Sheila; thank you. Second, sometime early evening SOMEONE left two wonderful thoughts at the door: thoughts of love and how love never ends. We do not know who, but we know love grows and grows…thank you for helping love to grow stronger.

…ALL YEAR LONG
Remember when we wrote about wishing it could be Christmas all year long because of the wonderful spirit of sharing, giving, loving…expressed by virtually everyone? (December 12, 2006, February 14, 2006, and December 11, 2005 to name few journal entries.) And remember how we feel that it can be and this notion is part of Nicholas' legacy. Well, like Christmas, we wish it could be Valentine's Day all year long. It can be and it will be in our way through The Nicholas Colby Fund - Helping Children Be Children.
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Tuesday, February 13, 2007 11:06 PM CST
NICHOLAS, OUR LOVE, YOU STILL HAVE OUR HEART-HAPPY VALENTINE'S DAY SON
"My Valentine" (By Martina McBride)
If there were no words, no way to speak, I would still hear you.
If there were no tears, no way to feel inside, I'd still feel for you.

And even if the sun refused to shine, even if romance ran out of rhyme,
You would still have my heart until the end of time.

You're all I need, my love, my Valentine.
All of my life I have been waiting for, all you give to me.
You've opened my eyes and showed me how to love unselfishly.
I've dreamed of this a thousand times before, in my dreams I couldn't love you more.

I will give you my heart until the end of time.
You're all I need, my love, my Valentine.

WHAT IS SAID ABOUT VALENTINE'S DAY
Although many facts about the namesake for Valentine's Day are "clouded," the stories certainly emphasize the namesake as sympathetic, heroic, and romantic. Nicholas is our Valentine who is forever our loving hero understanding that God loves us and that is all we need. Nicholas and his spirit vibrantly live on through his legacy of love, hope, trust, caring, giving, and sensitivity. The Nicholas Colby Fund - Helping Children Be Children. Nicholas is our Valentine!

LOVING TESTAMENT FROM THE MOTHER OF THE BOY AND HIS FAMILY SENT TO DISNEYLAND
Please click on View Guestbook to read a February 13, 2007 loving testament as told through one of the social workers at Stanford-Lucile Packard Children's Hospital.

REMEMBER
- Click on View Photos to see a different picture of Nicholas' site, and Nicholas during Valentine's Day last year and the year before.

- All of the 1st quarter 2007 experiences to date for children are in The Nicholas Colby Fund 1st Quarter 2007 album:

www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
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Monday, February 12, 2007 11:02 PM CST
THE CONNECTION OF LOVE
As Valentine's Day approaches we think about love in general, we think about Nicholas, and we think about what we have experienced with Nicholas throughout his leukemia journey. We also think about what has been generated through The Nicholas Colby Fund - Helping Children Be Children that lets us know that Nicholas is truly never gone, never far. What we have realized, we have talked about on virtually every journal entry: love begetting love.

NICHOLAS: We are so comforted knowing Nicholas knew love every day, felt love every day, and knows love better than any of us today.

YOU: And we are so fortunate to have all of you directly and indirectly helping The Nicholas Colby Fund, generate love begetting love for so many patients and their families who have not had many recent opportunities to smile.

REMEMBER
All of the 1st quarter 2007 experiences to date for children are in The Nicholas Colby Fund 1st Quarter 2007 album:

www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

Click on View Photos to see three pictures, including Nicholas during Valentine's Day last year and the year before.
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Sunday, February 11, 2007 11:14 PM CST
***Amazing Pictures***

NICHOLAS "PLAYING AND HAVING FUN" WITH JESUS AND IN GOD'S ARMS
Did you see the squirrel "playing and having fun" on Nicholas' site in the Home Page picture above? And did you see the angel, daffodils, and the heart at Nicholas' site in the 1st of 3 pictures under View Photos (by clicking View Photos above)? Our ANGEL Nicholas likes DAFFODILS and he / we just know that we are forever in each others' HEART.

And did you see the picture of Nicholas at Valentine's Day last year and the year before, the 2nd and 3rd photos under View Photos? Love grows and Nicholas continues to help us grow in many loving ways each day.

A BEAUTIFUL CONNECTION
Through God and with Jesus, our sweet…precious…angel Nicholas is an inspiration for love and life. This evening a family friend, Dave, reminded me of a passage in Philippians (2: 1 - 4) as we talked about what Nicholas always did and what The Nicholas Colby Fund is doing:

"Does your life in Christ give you strength? Does His love comfort you? Do we share together in the spirit? Do you have mercy and kindness? If so, make me very happy by having the same thoughts, sharing the same love, and having one mind and purpose. When you do things, do not let selfishness or pride be your guide. Instead, be humble and give more honor to others than yourselves. Do not be interested only in your own life, but be interested in the lives of others."

REMEMBER
All of the 1st quarter 2007 experiences to date for children are in The Nicholas Colby Fund 1st Quarter 2007 album:

www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
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Saturday, February 10, 2007 11:02 PM CST
RAINY DAY, TEARS, SMILES, AND SOME LAUGHTER
Nicholas, Christopher, Timothy, Matthew-all of our boys-were on our minds as we watched and listened to the rain. Like most children (and some of us adults) walking, playing, and even singing in the rain are part of life adventures that are wonderful experiences and memories. Outside in the rain today, there were tears…there were smiles…and there was some laughter. It may seem as if there is a need to balance our thoughts and pain, however, for us it is easier to lean on God to guide us along the way.

REMINDER: Ballet tomorrow afternoon (Sunday) for a patient and her family through The Nicholas Colby Fund. (Please click on View Photos to see the flyer, one of 3 pictures that can be viewed immediately.)
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Friday, February 9, 2007 11:59 PM CST
AMAZING WHAT LOVE DOES EVEN WHEN THERE IS PAIN
Tonight's Nicholas Colby Fund experience warmly touched our hearts as we saw smiles on faces and felt joy through family time together for our guests. It is simply amazing how love truly begets love even though there is constant pain in our hearts.

Remember when Nicholas said he wanted his smile back (November 18, 2006 journal under the heading: How Nicholas' Rays Of Sunshine Carried Through To May 25, 2006)? His smile caught him by surprise as he began to play and have fun. Seeing the smiles tonight reminded us of Nicholas' amazing smile and constant love from God, from Nicholas, from us to Nicholas, from you to Nicholas and us…love begetting love.

PICTURES from tonight's experience are on The Nicholas Colby Fund 1st Quarter 2007 album: www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
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Thursday, February 8, 2007 11:59 PM CST
NICHOLAS AND HIS LEGACY: THE NICHOLAS COLBY FUND
The Nicholas Colby Fund logo was designed and developed by Albert Treskin (from the state of Washington) through the support of Virginia Vovchuk of the California State Automobile Association's (AAA) creative services department. Our collaboration resulted in Nicholas's signature red balloon as a focal point of the logo.

It is nice to have been hearing that the logo beautifully reflects Nicholas and his legacy of love, hope, trust, caring, giving, and sensitivity. Nicholas' spirit, and so much more, vibrantly lives on as we focus on Helping Children Be Children-uplifting their spirits and creating lasting memories of happiness.

TOMORROW WILL BE A VERY SPECIAL NIGHT FOR A FATHER AND HIS CHILDREN
Tomorrow night (Friday) a father and his four boys will experience a great time out at a Warriors' professional basketball game via The Nicholas Colby Fund-no medical worries tonight for the father or for 2 of the four children as they embrace a family evening out together focusing on fun.

SUNDAY AFTERNOON WILL BE A CHARMING EXPERIENCE FOR A CHILD AND HER FAMILY
Sunday The Nicholas Colby Fund has a patient and her family experiencing ballet at the San Francisco War Memorial Opera House. The music, scenery, stories, and choreography as the dancers seemingly ignoring the law of gravity gliding, spinning, and floating through the air in long, slow leaps should delight this child and her family.
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Wednesday, February 7, 2007 11:59 PM CST
THEY ARE GOING TO DISNEYLAND
In the February 1, 2007 journal we talked about a situation helping a patient and his family get to / from Disneyland. The Nicholas Colby Fund was contacted and we have arranged the transportation. This family leaves for Disneyland tomorrow (Thursday) and meeting the mother tonight we learned that it would be the first time this large family will be on a trip together. Helping Children Be Children and families enjoy time together is what Nicholas always did for others around him and for us (even though he was a child himself) and what he continues to do. And we thank all of you, too!

Nicholas knew he was loved and we trust and believe God's love. EVERYDAY is a day our family loves Nicholas more. Love begetting love…all the actions The Nicholas Colby Fund takes and create are launched from love. We trust and believe love begets love and that Nicholas is wonderfully experiencing "The Next Place," referring to the Warren Hanson book we read to Nicholas on May 25, 2006. Following are excerpts from that book that are on the back of Nicholas' standing marker at Oakmont Memorial Park:

"I'll glide beyond the rainbows. I'll drift above the sky. I'll fly into the wonder, without ever wondering why.

"I'll never be alone; I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one. And the circle of our spirits will shine brighter than the sun.

"I'll have the love of those who loved me, and the warmth of those who cared…the happiness and memories and magic that we shared. I will cherish all the friendships I was fortunate to find, all the love and all the laughter in the place I leave behind. All these good things will go with me; they will make my spirit glow. And the light will shine forever in the next place that I go."

- All the words from the book are in the May 26, 2006 journal, under Journal History, and it has been comforting having the book to see the amazing, colorful illustrations and to feel the words warm our hearts as well as bring loving tears to our eyes.

- Pictures can be seen in the small Nicholas Colby Fund Begins album:

www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4
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Tuesday, February 6, 2007 11:59 PM CST
SOME DAYS…
Well, days have not gotten easier although they continue to be very different in terms of what we expect and how we expect to get through the days. Of course, we KNOW that God's perfection surrounds and provides for Nicholas and we trust and believe Nicholas is freely, joyfully playing and having fun. Thinking about the tougher days we thought about How We Are Doing scales we began to provide after Nicholas ascended to Heaven.

HOW WE ARE DOING TODAY
The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (4)

6) Pain in our hearts, stomachs… (6)

NOTE: The August 5, 2006 journal provides foundational information about these scales.

EVERYDAY…
And everyday we continue to focus on being the best we can for ourselves, for all of our boys-of course including Nicholas, and for the Nicholas Colby Fund-Helping Children Be Children.
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Monday, February 5, 2007 10:49 PM CST
CASCADING LOVE
We are here with just love to share today. Love acts without being asked…love experiences love…and even without specific things shared on a journal, like today, The Nicholas Colby Fund is taking action to deliver experiences of love for children and their families. Because Nicholas was always caring and giving.
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Sunday, February 4, 2007 10:55 PM CST
QUIET DAY…SOOTHING SIGHTS AND SOUNDS
Time today was spent strolling Orchard Nursery, a couple small gift-boutique stores, and Diablo Foods to pick up items for a charming dinner. Our older boys were with respective friends at Super Bowl parties. As we strolled…we thought about our older boys when they were little boys, Nicholas as our precious little boy, and how all of our "little" boys enjoyed strolling shops with us.

Nicholas really liked Orchard Nursery. Well, primarily he seemed to like seeing the fish and turtles in the ponds; and he liked to splash in the water running off from plants. These are some of the reasons why decorating Nicholas' Oakmont Memorial Park site for Halloween, Thanksgiving, Christmas, his birthday (January 27), and now Valentine's Day…we shopped at Orchard Nursery where Nicholas would expect us to be. We are very thankful for connections-our older boys like to shop Orchard Nursery for special occasions as well.

VALENTINE'S DAY APPROACHES
As we decorated Nicholas' site this afternoon for Valentine's Day, the weather and scenery were perfectly harmonious. Not surprising there were birds flying around and hawks soaring over the canyon between the ridge where Nicholas' site is and the Briones Regional Park behind the site. After decorating, some yard-garden type work, and a serene visit at the site…a flock of little birds continued their chirping and began flying onto and off the site. It was just like they were "playing and having fun" with Nicholas…who is always with us…never gone, never far.

PHOTOS of Nicholas' site decorated for Valentine's Day are on the Nicholas Colby Fund 1st Quarter 2007 album (all addresses to access Nicholas Colby Fund albums are above under CURRENT PICTURES):

www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

HELPING CHILDREN BE CHILDREN
We hope the spirits of children who have experienced Nicholas Colby Fund events continually are lifted in love thinking about their experience (we have heard from LPCH that one precious girl continues to animatedly talk about her time with us and the Warriors). We trust love will be there for those children who will soon experience a Nicholas Colby Fund event (we have heard that one little boy has marked his calendar for Disney on Ice). And we believe all of you know that you are helping us help all of these beautiful children (your stories help Nicholas' story to continue…)

WE HOPE, TRUST, AND BELIEVE YOU WILL HAVE A LOVING WEEK!
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Saturday, February 3, 2007 11:59 PM CST
SURROUNED BY FAMILY, COLLEAGUES, FRIEND FROM CAMP OKIZU…NICHOLAS
Talking with our boys in the morning, BBQ this afternoon with colleagues and their families in St. Helena, talking with our boys this evening…and a surprise tonight at the movie theater.

Mom & dad went to the movies tonight and inside the theater we spotted a familiar face associated with Nicholas' journey. I knew the connection was with Nicholas but not sure from where or what part of the journey. On our way out of theater, I saw the lady who had already left the theater (walking outside). After pointing her out to Sheila, Sheila instantly recognized the lady-a mother whose son also passed away-from being one of the mothers at Camp Okizu (referring to the September 12 - 17, 2006 journal entries). We caught up with the lady and had a heart, warming conversation with tears and the joy of love begetting love. It was a nice surprise as we talked about her precious son, Liam, and our sweet, precious Nicholas.

Talking with our boys and a family friend late tonight rounded out our day…another day of missing Nicholas so very much…and another day loving Nicholas so very much knowing that Nicholas "just knows". Thank you God!

PHOTOS
The photo above on the Home Page announces the upcoming February 11 ballet for patients through The Nicholas Colby Fund, and the three photos under View Photos share more. Remember the three (to date) Nicholas Colby Fund photo albums: Nicholas Colby Fund Begins, Nicholas Colby Fund Christmas 2006, and Nicholas Colby Fund 1st Quarter 2007? The links to copy and paste onto your browser are on the top portion of the Home Page, under a heading called CURRENT PICTURES that is above the daily journal.

NOTE: These three (to date) photo albums are different from the three photo albums under "Links" that are toward the bottom of the Home Page.

THANK YOU
We say, Thank you!, again because we are very thankful for your love of Nicholas, for our family, and for The Nicholas Colby Fund.
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Friday, February 2, 2007 11:59 PM CST
HELPING IS SO FITTING FOR A "KING"
A few times when Nicholas was in the hospital and there was a special activity going on in one of his three brothers' lives, he would say, "It's okay to go see the other boys, they are your son's too!" While we never, ever left Nicholas' side during the leukemia journey, there were times dad / couple times mom left the hospital or the Ronald McDonald House to spend some time with our older boys (16, 12, and 10 years older than Nicholas). But one of us was ALWAYS with Nicholas.

Nicholas was always so unselfish even though he was going through a life-threatening journey. He was always amazingly caring and so giving of his love, his time, and his things toward helping to make others happy.

You probably remember many journal entries and guestbook entries recounting Nicholas' amazing spirit and touch. As we think about all of Nicholas' beautiful ways…The Nicholas Colby Fund - Helping Children Be Children is truly a legacy that embodies Nicholas and God's spirit & love.

We hope you have a loving, caring weekend!
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Thursday, February 1, 2007 11:05 PM CST
CIRCLE OF LOVE
When you love someone, you help someone. When you know a child is in need, you find a way to help.

Although we have just shared (January 31 and 23 journal entries) with you the action The Nicholas Colby Fund - Helping Children Be Children is taking in February-with your help and contributions-the nature of help for many of these beautiful children is determined in the moment as things and prognosis change. We were contacted a few days ago regarding a changed prognosis…and similar to finding ways through God to help Nicholas "live" everyday of the journey…The Nicholas Colby Fund will be able to help another family be together one more day as we help "this" child and his family with transportation to / from Disneyland.

As another month begins, there is more action Helping Children Be Children to take. We know there is more hope to inspire through love. Nicholas, son, you inspire us every moment through your love that helps us to do what we do as we love and trust God. Thank you, everyone, for we believe there is something very special that brought Nicholas into our lives, love into our hearts in ways we have not experienced, and help in our ways that generate smiles and happiness enabling all of these beautiful children to have a loving experience one more day-moments of love begetting love.

REMEMBER
Copying and pasting the following address into your browser you will see photos of some of the beautiful children experiencing The Nicholas Colby Fund. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

Wednesday, January 31, 2007 11:48 PM CST
FEBRUARY NICHOLAS COLBY FUND EXPERIENCES
The January 23, 2007 journal entry (under Journal History) outlines the upcoming February Nicholas Colby Fund - Helping Children Be Children experiences…beginning this coming Saturday night. From professional bull riding, Warriors' professional basketball, San Francisco ballet, freestyle motocross, and Disney On Ice…patients from Stanford-Lucile Packard Children's Hospital, Children's Hospital Oakland, and a patient desiring a special time with his boys are positioned to deliver fun & love. (Please see the flyer above on this Home Page and two of the other flyers under View Photos.)

 

THREE NICE THINGS TODAY:
- Deer perched right behind Nicholas' spot…how simply beautiful…present very touching creations of love reminding us that there is no question God's love is more than providing for Nicholas and all the beautiful children with and around Nicholas.

- The haze with a soft-glowing sun just above the hills of Briones Regional Park behind Nicholas' spot was a simple, yet majestic wonder. As we still do wonder why Nicholas is no longer physically with us, we know God is God…children are God's children…and God's children are loved and receiving all of love's attributes so nothing should we fear.

- The last few weeks there has been a little bird (white and black in color) on the slope and fence on Nicholas' spot connecting to the Briones Regional Park. For us, these experiences are more moments of love comforting our hearts & souls.
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Tuesday, January 30, 2007 10:30 PM CST
RELATIONSHIPS
Cards, telephone calls, and guestbook entries from hospital staff at The Children's Hospital Denver, Stanford-LPCH, and Children's Hospital Oakland are very, very nice. It is obvious that through talking with the staff, our conversations of friendship have been born from the love they developed with Nicholas.

Soon we will be sharing information with you about a little girl from Denver we never met that is in Heaven. However, through mutual relationships we have been talking with her parents about a collaborative effort that is all about children everywhere.

And the kids we engage with in our neighborhood, shopping, high school sporting events, and just people we have come to know along the journey…the love for Nicholas is so very strong and powerful. We hear stories about little boys and little girls who are expressing kindness in loving ways that include a story about what they have learned from Nicholas. We see the joy in their parents eyes and feel it in their hearts, as the gift of love unfolds in all of our hearts.

We know there are other beautiful angels who help others along the way…and we know that Nicholas is our angel that continually helps us everyday.

REMEMBER
Copying and pasting the following address into your browser you will see photos of some of the beautiful children experiencing The Nicholas Colby Fund. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
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Monday, January 29, 2007 11:59 PM CST
AS JANUARY COMES TO AN END A NEW MONTH BEGINS WITH HOPE OF EVER-INCREASING MOMENTS OF JOYOUS REFLECTIONS AND NEWFOUND JOY
Tonight the moon's illumination and stars in the sky provided a sense of ahh as we prayed and talked with Nicholas in prayer. And the moonlight created soothing shadows and brilliant glows at Nicholas' site.

Thinking about our conversations and prayers with Nicholas before the leukemia journey and during the leukemia journey, we are so glad to know that he loved and trusted God's love. Nicholas FELT love; KNEW love; and REALIZED love in thought, prayer, and in all aspect of our lives. With so much love from us and all of you…Nicholas LIVED…everyday with love he realized through knowing and feeling it in all aspects of his life. At home, at school, in the neighborhood, at church, through our work, at Children's Hospital Oakland, at Stanford-Lucile Packard Children's Hospital, at The Children's Hospital Denver…and everywhere he went on outings, vacation, and just "playing and having fun" Nicholas realized love.

How comforting it is to know now the omnipotence, omniscience, and omnipresence of what we have always seen, Nicholas turning to God in all aspects of his life, that surely are "showing" Nicholas all of their truths. And God must also be showering Nicholas with love that Nicholas can see!

- Speaking of showers, Nicholas loved to take showers as seen in the 11/9/05 photo in the third album below, under Links, called "Day 132 leading to BMT and current pictures".

- And speaking of praying and knowing that he was loved, Nicholas really liked reading his Children's Bible and having it read to him as well as reading and having many books read to him (A: As seen in the 2/22/05 and 3/7/05 photos in the second album below, under Links, called "Day 80 - 131 before the BMT"; and B: As seen in the 4/9/05, 6/12/05, 11/6/05, 1/17/06, 1/26/06, and 2/21/06 photos also in the third album below, under Links).
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Sunday, January 28, 2007 10:25 PM CST
THANK YOU
Thank you all for your wishes and actions helping to provide us (and others) with a level of comfort on Nicholas' birthday, Saturday. Nicholas was always about action in fun and / or helpful ways for others. Nicholas' actions and your actions are what makes The Nicholas Colby Fund - Helping Children Be Children an "action-based organization" enabling love begetting love to be experienced and seen.

TODAY
After an emotional birthday and Nicholas Colby Fund experience last night, today was a day for quiet and reflection. We thought a lot about the last few days, specifically the last few journals (Saturday, Friday, and Thursday), and are grateful that our other three boys can help us-with others-get through the days and with The Nicholas Colby Fund.

Following are common reminders to us of Nicholas' love:

- Nicholas' signature red balloon that he painted and appearance used on The Nicholas Colby Fund - Helping Children Be Children logo (Please see the "Nicholas Colby Fund 1st Quarter 2007" album, link below, to view Nicholas' balloon in flight)

- Love begetting love (Connecting everyone near & far and who directly & indirectly help us do what we do-THANK YOU)

- Never gone - never far (Well, you know the loving meaning of this phrase)

- "…" six dots "…" (We have generally used surrounding comments associated with The Nicholas Colby Fund in reference to Nicholas ascending to Heaven at age 6)

REMEMBER
Copying and pasting the following address into your browser you will see photos of some of the beautiful children experiencing The Nicholas Colby Fund. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
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Saturday, January 27, 2007 11:59 PM CST
***HAPPY BIRTHDAY NICHOLAS***

LOVINGLY NEVER LETTING GO
The song, My Heart Will Go On, by Celine Dion from the movie Titanic that was on last night's journal for today-Nicholas' 7th birthday-was heard two days ago while talking with a friend at work. We were talking about business and when the song came on our hearts began to beat in way that transcended our hearts to talk about Nicholas.

It is so wonderfully amazing to be able to always think about Nicholas in so many warm, beautiful ways that lets us know that through God…our hearts go on and Nicholas lives on in Heaven. Thinking about God's constant presence in our lives-especially Nicholas' that is now with God-many of our journals during Nicholas' leukemia journey and today echo God's graces in front of our lives, behind our lives, beside our lives, and within our lives. The words in the journals, the songs, the prayers, and the hymns blend lives with love helping us to softly go on with our lives.

Speaking of the words that are only a "touch" of what we feel…they too tell a story of God's magnificent touch, His comfort, His "pat" (remember how Nicholas loved to be patted) that lets us know we are loved and Nicholas is surrounded by love as he walks, plays, and runs "on streets of gold!" (Remember the song, If You Could See Me Now, on the July 31, 2006 journal?)

As we "read" the words to the song, My Heart Goes On, we can see so many wonderful touches of our lives that are because of Nicholas' love…because of God's love. As we read, we cry…as we cry, we lovingly sing to God…as we sing to God, we hold Nicholas so close and "pat" him just the way he likes. Every verse of the song resonates within our hearts, within our souls, and every aspect of our lives.

The hole in our hearts-while piercingly painful-love (God and Nicholas) lets us know that "…love can touch us one time, and last for a lifetime, and never let go…"

TODAY
We woke this morning to another beautiful surprise through a "ringing" message to check the front porch. On a morning that brought a "different" kind of pain along with knowing love goes on, thoughts and acts of love equally let us know that Nicholas is never gone, never far ("…far across the distance, and spaces between us, you have come to show you go on…"). Hot morning drinks and pastries greeted us at our doorstep along with a small box with a bracelet & message: Love, Remember, Forever…

Remember loved ones never leave
They are forever near
For their love lives on in memories
Our hearts hold dear

BALLOONS, BEAUTIFUL ("Baby, I love you!")
NICHOLAS' OAKMONT SITE: "Love" CAN touch us one time, and last for a lifetime. A mother's love, a brother's hand, all of our family, and all the friendships Nicholas was fortunate to find...are with him forever. From this place he left behind (physically) and into Heaven where God's wonder is magnified…Nicholas touch is felt everywhere.

WARRIORS LOVING MESSAGE TO OUR WARRIOR-NICHOLAS: The Warriors' scoreboard message (for Nicholas) tonight was tearfully joyous. And Thunder (the Warriors' mascot) playing and having fun with Stanford-Lucile Packard Children's Hospital patients & siblings enhanced a great time out via The Nicholas Colby Fund.

Please:

- Click on View Photos above (or just below to your right next to the "camera icon") to quickly see 3 pictures of what is described two paragraphs above under "Balloons, Beautiful" and preceding "Nicholas' Oakmont Site"

- Copy and paste the following link to the "Nicholas Colby Fund 1st Quarter 2007" into your browser to see all PICTURES from today and tonight-including Nicholas' signature red balloon take flight…

www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
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Friday, January 26, 2007 10:47 PM CST
TOMORROW IS NICHOLAS' BIRTHDAY AND WE JUST KNOW…
We just know that the greatness of God is treating Nicholas to a beautiful, fun, happy, pre-birthday preparing for an amazing birthday tomorrow (Saturday). The rainbows, the pots of gold, the change ("All the change, the dollars, the fives, the tens…the hundreds, all of them!" as Nicholas would say), the caring, the giving, everything precious and loving. Nicholas is a treasure that continues to give to all of us-thank you for your telephone calls, your emails, the flowers, the cards, the thoughts & prayers…the everything that you all do for Nicholas, for love, for caring & giving. And your guestbook entries are a treasure in many ways now and the future, thank you!

From the moment we saw Nicholas we knew there was something about him, from the moment we looked into his eyes there was something special that beautifully blended our family. That special look and passion Nicholas transcended to our larger family, friends, and those who would become friends (and continue to do so even today). All of the children and their families from his Montessori school in Lafayette, all of the families who came to know Nicholas from church in Moraga, all of the friendships because of you and those you connect with…

BALLOONS
We have a touching, loving treat for Nicholas tomorrow at his Oakmont Memorial Park site that will transcend to the king who is with the King. We will share information and pictures about the treat tomorrow.

A CELEBRATION TOMORROW NIGHT WITH THE GOLDEN STATE WARRIORS
Remember, at the Warriors' game tomorrow night there will be a celebration for Nicholas in the suite throughout the game, during the 1st quarter when Thunder (Nicholas' friend who lovingly played with Nicholas at our home, in the hospital, and during Nicholas' Celebration of Life) pays a visit to the patients and their siblings in the suite, and at halftime when the Warriors share a message on the center court scoreboard for all to see and for all of us to just know…(please see the comments above the Home Page picture).

GOD IS GREAT, NICHOLAS IS GREAT, LOVE IS GREAT AND LOVE BEGETS LOVE
The following song, My Heart Will Go On, was heard yesterday with new meaning: For the good of Nicholas and for God's goodness, we know that Nicholas is never gone, never far...

MY HEART WILL GO ON (By Celine Dion)
Every night in my dreams
I see you, I feel you,
That is how I know you go on

Far across the distance
And spaces between us
You have come to show you go on

Near, far, wherever you are
I believe that the heart does go on
Once more you open the door
And you're here in my heart
And my heart will go on and on

Love can touch us one time
And last for a lifetime
And never let go till we're gone

Love was when I loved you
One true time I hold to
In my life we'll always go on

Near, far, wherever you are
I believe that the heart does go on
Once more you open the door
And you're here in my heart
And my heart will go on and on

You're here, there's nothing I fear,
And I know that my heart will go on
We'll stay forever this way
You are safe in my heart
And my heart will go on and on

***You can hear it by going to several sites, including: www.ladyjayes.com/heartgoon.html***
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Thursday, January 25, 2007 11:34 PM CST
SIMPLY BEAUTIFUL-WHAT CAME NICHOLAS' WAY TODAY
From the beautiful heartfelt guestbook messages and pictures, to what was experienced this evening at Nicholas' Oakmont Memorial Park site, today was beautiful in terms of what continues to come Nicholas' way and ubiquitous via The Nicholas Colby Fund. Yes, we are talking about "love begetting love."

As we arrived at Nicholas' Oakmont site:

- We saw that Nicholas' teacher, Ms. Shirley, had been there. Remember, the 25th of every month she has been leaving a white rose for each month since he passed onto Heaven. This evening there were 8 white roses placed below the flat memorial marker (with his picture and the words: Forever In Our Hearts And Souls"). And there were about two-dozen white roses in the in-marker vases at each side of the standing marker (with the excerpt from the book, The Next Place, engraved on the back), and one white rose lying on the top of the marker. NOTE: The deer will have a special treat tonight!

Accessing the Nicholas Colby Fund Begins photo album you can see the markers, but not with the white roses from today because it was a rare moment we did not have our camera:

www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

- For candles regularly placed into the lantern on the site, another sweet person left a refillable-flexible lighter that will be very useful (especially when it is windy)

- As we were leaving, we received a beautiful surprise. Remember, there have been many people that we came to know as friends along Nicholas' journey. One of these new friends we had met at Nicholas' Oakmont Memorial Park site as she and her kids, a few months ago, wondered who the child was that they observed many people visiting from time to time. She then began to leave Nicholas things just because and on holidays, such as November 11, 2006 on Veteran's Day when she left a note, "Happy 'Vet' Day little Nicholas" written on a Hot Wheels package containing a Corvette Hot Wheel.

So, as we were leaving she drove up with her kids and from the back of there truck pulled out a child-size wood / metal bench. It is about 3 feet wide and on a bronze plate placed into the wooden backrest of the bench the following is engraved for Nicholas and the site overlooking the Briones Regional Park:

Saint Nicholas Park Way
The Ridgetop
January 25, 2007

She said the bench and engraving is in honor of Nicholas on his 8th month in Heaven today, and his 7th birthday on January 27, 2007.

Nicholas, you are so amazing-we love you! God, thank you for comforting us and filling us with so much love-through all that you provide us there is no doubt that you are filling Nicholas with everything perfect and pure…every angelic, heavenly time frame.
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Wednesday, January 24, 2007 10:59 PM CST
8 MONTHS AGO, 7 YEARS AGO, IN GOD'S SPEED & TIME NICHOLAS SHINES
Tomorrow (Thursday, January 25, 2007) it will be 8 months that Nicholas has been in Heaven. And with this coming Saturday being Nicholas' 7th birthday, as the guestbook entry from Cathy Charon states, celebrating Nicholas' birthday by extending Nicholas' loving arms and thoughts to others through the Nicholas Colby Fund, is so like Nicholas in terms of finding ways to help somebody (even on his birthday).

Although we are now just weeks away from fully transitioning Nicholas' website to www.nicholascolbyfund.org, in the interim you can see and hear the songs from Nicholas' Video Tribute played during the Memorial Service by accessing the site and clicking on Sound Tracks. Thinking about Nicholas' birthday, after clicking on Sound Tracks, if you click on "Step In The Name Of Love" you will hear one of the songs that Nicholas liked to dance to. He liked to sing and dance to the part that goes "step, step, side to side…" The song blends into a nice message: birthday, dancing with joy, thanks, and "I love you."

Thinking about and listening to the songs that make up the Video Tribute ALONG WITH those sang during the Memorial Service and Celebration of Life, the titles alone provide a warm, loving, inspirational message: Nicholas' Song of Love…If I Can Help Somebody…Held…For Good…Step In The Name Of Love…You'll Be In My Heart…Beautiful Soul…Beautiful…Never Gone…Old Friends…Joy…Count It All Joy. (All the songs are accessible via www.nicolascolbyfund.org, clicking on Sound Tracks, and clicking on the song you want to hear.)

As Nicholas' 8th month in Heaven arrives and 7th birthday comes upon us, what comes into view…what we see…what we focus on…and what we trust and believe God to bring to us is further knowing that Nicholas is amazingly loved. That Nicholas is full of light, "toasty" warm ("umm toasty" as Nicholas would say talking about Quiznos sandwiches), and surrounded by everything gloriously elegant and benevolent.

Son, we always celebrate you and your love with our love. Even though it is a couple days away, HAPPY BIRTHDAY, son!

-This Saturday we are celebrating your birthday at the Warriors' game via The Nicholas Colby Fund - Helping Children Be Children. In the suite will be patient / sibling guests from Stanford-Lucile Packard Children's Hospital and staff.

- During halftime the Warriors will have a special message for you on the main scoreboard high above the court ("Happy 7th Birthday to our angel, Nicholas, you are never gone - never far in our hearts and souls forever!").

***We thank all of you for thinking of Nicholas and your continued prayers and love as well as your prayers and love for all these beautiful kids. Clicking on View Photos above you can see a couple pictures of Nicholas during "one" of his birthday parties last year***
________________________________________
Tuesday, January 23, 2007 11:59 PM CST
NICHOLAS' 7TH BIRTHDAY THIS SATURDAY, JANUARY 27, 2007
Through all the joy received Helping Children Be Children, our hearts still hurt. With all the love begetting love, it is still very, very hard physically being without Nicholas. And, we are following our hearts along with hearing God's desire of us to be doing what we are doing. So we trust, believe, and pray some more feeling closer to God and Nicholas.

Nicholas, mom & dad and your brothers love you. We celebrate you everyday and on your birthday this Saturday you will feel the continuous love of so many people loving you always! We, certainly, do not have to see you to know you are here! And, God's sees you as you see Him and He makes everything just right…in God's speed now and forever.

UPCOMING NICHOLAS COLBY FUND EXPERIENCES (FEBRUARY / MARCH)
Nicholas loved to dress up, dress down…do things in town, out of town…experience familiar things, new things. And this is the theme for the upcoming Nicholas Colby Fund experiences for February and the beginning of March.

In the comfort of a suite, following is what is being offered and planned for patients at Stanford-Lucile Packard Children's Hospital (LPCH) and Children's Hospital Oakland (CHO). Also, an experience for a family whose father and four sons are looking forward to first-ever time at a professional basketball game focusing on seeing children be children from a father's perspective and grandmother's perspective-no worries that night and hopefully the beginning of another outlook on life:

- February 3, 2007: Professional Bull Riders at Oracle Arena for patients from LPCH and CHO

- February 9, 2007: Golden State Warriors vs. Chicago Bulls (professional basketball game) at Oracle Arena for a father and his boys with the boys' grandmother seeing her son embracing the joy of fatherhood with her grandsons…and her grandsons embracing her son (their dad) focusing only on love begetting love-no medical worries tonight.

- February 11, 2007: San Francisco Ballet-mixed repertory at the War Memorial Opera House for patients from LPCH and CHO

- February 17, 2007: Freestyle Motocross at Oracle Arena for patients from LPCH and CHO

- February 28, 2007: Disney on Ice - Disney Adventure at Oracle Arena for patients from LPCH

- March 1, 2007: Disney on Ice - Disney Adventure at Oracle Arena for patients from CHO

- And, continually the "nutritional packs" are immediately available on site for every parent of a child going into the Pediatric Intensive Care Unit at Children's Hospital Oakland

REMEMBER-3 new Nicholas Colby Fund Photo Albums
Copying and pasting the following address into your browser you will see photos of some of the beautiful children experiencing The Nicholas Colby Fund. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
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Monday, January 22, 2007 10:24 PM CST
ANOTHER MEANING OF "NEVER GONE, NEVER FAR" COMING TO LIFE
Many of you have heard about or even felt the spirit of a loved one seemingly providing that what you may "need." We have often talked about Nicholas' spirit providing us with a sense of comfort, guidance, inspiration, love… And we-and many of you-have always known Nicholas to be: illuminating with rays of sunshine that warms your heart, enthusiasm, joy, and endless passion for caring about others.

We have been calling this action, love begetting love! We have always trusted and believed in God to deliver Nicholas with love and all of love's attributes. God is good, Nicholas is good, so nothing except goodness is surrounding Nicholas with God's loving touch over everything. And we trust and believe that the goodness of God will guide and follow us forever…and will surround us with Nicholas some glorious day. And between now and then, goodness will continue to warm and heavenly soothe Nicholas and comfort us.

A PETER PAN / ROBIN HOOD ANALOGY
Late last week we thought about Nicholas and Peter Pan. Nicholas liked Peter Pan movies and the action figures (like most kids). Thinking about Nicholas sword fighting and saying, "Ahh Yah!" as he slashed his sword through the air, we also thought about Robin Hood, another character Nicholas would play. Nicholas loved sword fighting and just "playing and having fun" with others.

- Nicholas and Peter Pan: we think about the positive, innocent childlike approach to life and afraid of nothing. Thank you, God!

- Nicholas and Robin Hood: we think about the theme, "…for the good of others." Thank you God!

- As we thought about The Nicholas Colby Fund, we thought about Tinker Bell who brightly glows for Peter Pan (Nicholas) and that is when we thought about our dear family friend, Gina Baker, who founded The Nicholas Colby Fund that we are establishing.

- Then we thought about the Pixie Dust. And our thoughts warmly go to the notion of how a sprinkle of pixie dust can make you fly. And our thoughts float back to Gina and her loving touch positioning The Nicholas Colby Fund to take flight. And now all of YOU helping The Nicholas Colby Fund soar.

- It is Nicholas and his love, because of God and His love, sprinkling the pixie dust over The Nicholas Colby Fund - Helping Children Be Children. It is not magic, it is what we trust; it is not just belief, it is faith!

- Sometimes we feel that Nicholas' touch is the wind blowing our sails, as God is the wind beneath Nicholas' "wings."

Thanks for sharing in this "real" journey of a boy's (Nicholas) love always illuminating with rays of sunshine, enthusiasm, joy, and endless passion for caring about others!

***Please click on View Photos, above, to quickly see 3 pictures: 1) Nutritional packs for Children's Hospital Oakland (1/21/07 journal), 2) Nicholas on his birthday last year (1/17/07 journal talks about his 1/27/07 birthday this year), and 3) A multi-year view of Nicholas***

TOMORROW WE WILL SHARE THE FEBRUARY / MARCH UPCOMING NICHOLAS COLBY FUND EXPERIENCES BEING PLANNED
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Sunday, January 21, 2007 10:33 PM CST
ANOTHER "ACTION" NICHOLAS & YOU HELP PUT IN MOTION
Yesterday (Saturday) we delivered the first supply of Nicholas Colby Fund "Nutritional Packs" to the Pediatric Intensive Care Unit (PICU) at Children's Hospital Oakland. These packs will be available to every parent of a child going into the PICU. Our precious Nicholas was (and is) so loved that he had the wonder& joy of love always present from our Father, from mom & dad every moment of the leukemia and bone marrow transplant journey, from family, from friends, and from all of you that have become "friends."

We recognize that people are able to care and help in different ways-and all of you cared about Nicholas and constantly helped him as well as our family. Your caring and help, in your way directly or indirectly, enabled us to be more present with Nicholas every step of every moment of the journey…love begetting love.

***You can see these nutritional packs by looking at the Home Page picture above and by clicking "View Photos" above. They are also on the "Nicholas Colby Fund 1st Quarter 2007" photo album accessible by pasting the following link into your browser*** www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

 

Below is the wording of the card that accompanies the nutritional packs:

FRONT: The Nicholas Colby Fund - Helping Children Be Children (logo)

INSIDE: On November 19, 2004 our lives had been changed by the devastating Leukemia diagnosis of our beautiful 4 year-old son, Nicholas Colby Gilbert. (The youngest of four boys.)

We navigated the Leukemia and Bone Marrow Transplant (BMT) journey for 1 ½ years. On May 23, 2006, our son became critically ill and went into the Pediatric Intensive Care Unit (PICU). Understandably, our emotions were high and not knowing what the next moment would bring, we had no thoughts of leaving Nicholas' side. Our wonderful social worker brought us a nutritional pack, similar to this one, and encouraged us to eat and drink.

The PICU staff was lovingly attentive to Nicholas as well as us. And we were so thankful for the nutritional pack because we now know it was helpful toward providing the physical strength needed.

Early afternoon on May 25, 2006, our lives-once again-had been changed forever. One choice we were left with was two continue sharing Nicholas' amazing love, spirit, and inspiration: love begetting love. …and The Nicholas Colby Fund - Helping Children Be Children was created. In addition to directly Helping Children Be Children, another action we wanted to take was what we hope will be helpful to you.

Please accept this nutritional pack from us to you. We hope it provides you with strength and, mostly, comfort knowing that many others care about your family.

This nutritional pack is provided through donations from Diablo Foods of Lafayette, CA (including other individuals and organizations) partnering with us and The Nicholas Colby Fund.

Warmly,

The Gilbert Family and The Nicholas Colby Fund

BACK: The meaning lies not in the knowing, but in the believing; not in understanding, but in having faith.

The Nicholas Colby Fund - Helping Children Be Children
(A registered non-profit organization)
1547 Palos Verdes Mall, PMB 260
Walnut Creek, CA 94597-2228

Website: www.caringbridge.org/ca/nicholascolbygilbert
(In the 1st quarter of 2007 transitioning to www.nicholascolbyfund.org)

Email: info@nicholascolbyfund.org

 

Along with Diablo Foods (Connie Collier) of Lafayette who is directly supporting this action, we are thankful for Admac Digital Imaging (Terry McGlynn) of Emeryville for the Nicholas Colby Fund stickers. Remember the "programs" for the Memorial Service & Celebration of Life? Admac Digital Imaging printed those as well.

***The programs can be viewed from the third album below, under Links, or accessing the smaller, "Nicholas Colby Fund Begins," album*** www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

IT WAS JUST THE RIGHT MOMENT, BUT IT WAS OUR MOMENT
A beautiful moment at Nicholas' site playing and with his Peter Pan & Power Ranger action figures, sword fighting, and football catch. (We know that we do not have to be there to be with Nicholas; and it is an amazing place to be with Nicholas.) We know that the moment we are about describe was just a moment that could have happened at any time of the day; however, it "was our moment." As the sun broke through a few clouds and pierced through branches in the tree on Nicholas' Oakmont Memorial Park site…the sun illuminated the picture of Nicholas on the flat memorial marker. To me, it was Heavenly and we are so grateful that God provides many moments of His "light" enabling us to continually trust and believe His words to be true.

***The flat memorial marker can also be seen via the "Nicholas Colby Fund Begins" album***

So Nicholas, son, you are perfectly and purely "playing and having fun" absorbing all the love and precious moments that are abundant with Jesus and in God's loving arms. Yes, we know and are so glad that you are teaching us, just like you love to do. You are the king with the King! Remember, Nicholas use to say that he was the king?
________________________________________
Saturday, January 20, 2007 11:40 PM CST
***No Full Journal Entry Today***

Delivered the first supply of Nicholas Colby Fund "Nutritional Packs" to CHO…quiet visit at Nicholas' site…watched our niece's high school basketball game…dinner / comedy show with friends.
________________________________________
Friday, January 19, 2007 11:10 PM CST
THREE QUICK ANNOUNCEMENTS

NUTRITIONAL PACKS: Nicholas Colby Fund "Nutritional Packs" start tomorrow (Saturday) for the Pediatric Intensive Care Unit at Children's Hospital Oakland. (Please refer to the January 8, 2007 journal, under Journal History, for more information.) On one of our journal entries this weekend we will share details about these Nutritional Packs including information about Diablo Foods of Lafayette (Connie Collier) and family friend Terry McGlynn who partnered with The Nicholas Colby Fund on this action.

"DISNEY ON ICE" SHOWS UPCOMING: On February 28, 2007 patients from Stanford-Lucile Packard Children's Hospital, and on March 1, 2007 patients from Children's Hospital Oakland will be guests of Nicholas and The Nicholas Colby Fund at a Disney on Ice performance. These performances will be at the Oracle Arena in Oakland. Yes, Disney on Ice is another fun thing that Nicholas experienced and, once again, Nicholas is Helping Children Be Children…enjoying an experience that is so "cool," literally as well figuratively.

A PETER PAN ANALOGY: Also on one of our journal entries this weekend we will share an analogy about Peter Pan and Tinker Bell as we think about our angel, Nicholas, and Gina Baker who founded The Nicholas Colby Fund that we have been establishing with Nicholas' love.

***Please click on View Photos to quickly see a couple of pictures of Nicholas one year ago with family, friends, & Thunder and receiving a computer on his 6th birthday***

REMEMBER-3 new Nicholas Colby Fund Photo Albums
Copying and pasting the following address into your browser you will see photos of some of the beautiful children experiencing The Nicholas Colby Fund. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
________________________________________
Thursday, January 18, 2007 10:54 PM CST
OH, A LITTLE MORE ABOUT NICHOLAS' "OFFICE"
Remember, one of the subjects in last night's journal was the Lafayette Library that Nicholas called his office. What we meant to include was a note about why yesterday Nicholas' office was in our thoughts. Well, soon a new library will be built in Lafayette and we inquired whether or not they were going to be selling tiles that would have a message from the purchaser and all placed somewhere at the new library. Many new structures do this. These was done at the San Francisco Giants baseball park; and remember the tile that we made at Camp Okizu? It can be seen by accessing the third album below, under Links, and scrolling to 9/16/06. Information about the tile at Camp Okizu is in the 9/16/06 journal, under Journal History.

Yesterday we had a discussion with a representative of the library and although they are not selling tiles for the purpose we stated, a wonderful conversation about Nicholas followed. STAY TUNED, there may be something with the Lafayette Library fitting for our precious Nicholas.

SPEAKING OF CAMP OKIZU
Remember, the mission of the Okizu (oak-eye-zoo, is a Sioux Indian Word meaning Unity) Foundation is to provide recreational, respite, and peer support programs for families affected by childhood cancer. In September 2006 we participated in the Okizu Foundation's Oncology Family Camp for bereaved families. Collaborating is another wonderful characteristic of Nicholas and through his inspiration we have an idea of how The Nicholas Colby Fund - Helping Children Be Children can collaborate with Camp Okizu for the good of children.

This idea entails a weekend "work party" helping the camp with one of their periodic cleanup weekends to help maintain a clean, safe environment for patients, siblings, as well as parents from many different hospitals. STAY TUNED, this could involve you!

***Thank you all for your guestbook messages, they are still very helpful to us and we are told they are helpful to others (love-begetting-love)***

***Please click on View Photos to quickly see a couple of pictures of Nicholas one year ago with family, friends, & Thunder and receiving a computer on his 6th birthday***

REMEMBER-3 new Nicholas Colby Fund Photo Albums
Copying and pasting the following address into your browser you will see photos of some of the beautiful children experiencing The Nicholas Colby Fund. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
________________________________________
Wednesday, January 17, 2007 11:59 PM CST
NEXT PLANNED NICHOLAS COLBY FUND EXPERIENCE, COINCIDENTALLY, IS ON NICHOLAS' BIRTHDAY
On January 27, 2007 The Nicholas Colby Fund is delivering a Warriors' experience for some Stanford-Lucile Packard Children's Hospital patients and their siblings. The suite will be full of children focusing on each other not medicine, on the Warriors not schedules, and on fun not a clock…as we work toward Helping Children Be Children.

And the Warriors organization, they are adding a special message onto the scoreboard for that game that will read: "Happy 7th Birthday to our angel, Nicholas, you are never gone - never far in our hearts and souls forever."

NICHOLAS AND HIS "OFFICE"
Many of you remember Nicholas' passion for reading, learning, exploring, teaching…and before his leukemia journey a regular journey to his "office" was the order of every week. Nicholas called the Lafayette Library his office. He loved to go to the library to select a book, sit at the table and read it…pick out another book, sit at the table and read it…and simply explore the wonders the library offers. When we drove by the library Nicholas would say, "There is my office." Nicholas was so happy to have his own office and when he was in the hospital, many of you may remember how he would set up a desk in his hospital room like an office. Throughout Nicholas' photo albums you will see pictures of him reading, learning via a computer (PC or hand-held), writing notes, etc. Nicholas, we thank God, you are never gone - never far, in our hearts and souls forever is where you are. Remember, son, we just know…

***Please click on View Photos to quickly see a couple of pictures of Nicholas one year ago with family, friends, & Thunder and receiving a computer on his 6th birthday***

REMEMBER-3 new Nicholas Colby Fund Photo Albums
Copying and pasting the following address into your browser you will see photos of some of the beautiful children experiencing The Nicholas Colby Fund. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah
________________________________________
Tuesday, January 16, 2007 11:43 PM CST
A LABOR OF LOVE IS SIMPLY "ACTIONS" OF LOVE
At Nicholas' spot this evening and in his room at home tonight, we "talked" about our love and simply held him close. Our expressions of love-begetting-love that have become a constant presence on these journals have simply become our "actions" of love. And these actions have amazingly, thank you God, become a source of continuous energy for us.

- Nicholas' beautiful Oakmont Memorial Park spot can be seen by placing the following link for the Nicholas Colby Fund Christmas 2006 album in your browser and scrolling toward the end of 43 pictures: www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd.

- And, clicking on the third album, titled "Day 132 leading to BMT and current pictures" under Links toward the bottom of this Home Page. Then scroll to June 6, 17, 19, 24, 2006, September 22, 2006, October 22, 2006, and November 11 & 21, 2006.

REMEMBER-3 new Nicholas Colby Fund Photo Albums
Copying and pasting the following address into your browser you will see photos of some of the beautiful children experiencing The Nicholas Colby Fund. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

***Please click on View Photos to see a picture of Nicholas one year ago with family, friends, and Thunder***
________________________________________
Monday, January 15, 2007 9:16 PM CST
EXPERIENCES CREATING INSTANT FRIENDSHIP AND LOVE
While you know that the Nicholas Colby Fund was founded on friendship, and its focus of Helping Children Be Children was established because of Nicholas' rays of sunshine that warms our heart. Nicholas' enthusiasm, joy, & endless passion for caring about others has always been amazing before his leukemia journey, during his leukemia journey, and today & forever through your direct and indirect support Nicholas continues to amazingly generate love.

Today through the Golden State Warriors' contribution of two seats at mid-court and three rows from the floor, a Stanford-Lucile Packard Children's Hospital patient (Justin) and a Children's Hospital Oakland / University of California San Francisco-Children's Hospital patient (Troy) were in attendance to watch the Warriors win their game against the Los Angeles Clippers. On this special day, Martin Luther King, Jr. holiday, what was also special was seeing the smiles on Justin and Troy's faces and hearing them cheer the Warriors on. Their family was just one section away and for us (Nicholas' mom & dad), it was special opportunity for us to engage with the families. Note: The name of Justin's brother, coincidentally, is also Troy who was there with his mother one section away.

Also from Stanford-Lucile Packard Children's Hospital enjoying the game through The Nicholas Colby Fund were Camilia and her family. Thanks for joining us today, we were happy to see you and your family!

Seeing Justin and Troy exchanging emails (and I think My Space and other contact information) warmed our hearts because here were two kids taking part in experiences that kids do-connecting and sharing!

THANK YOU Justin, Troy, Camilia, and your families for your time and trust in The Nicholas Colby Fund. While our focus is Helping Children Be Children…YOU helped us today enjoy the love of kids at play. Or as Nicholas' song of love playing in the background on the Home Page, "…playing and having fun…"

GOLDEN STATE WARRIORS (professional basketball team)
THANK YOU WARRIORS ORGANIZATION for your tremendous efforts and energy to help us Helping Children Be Children. You helped to make Nicholas always have a great time out at a Warriors game as well as engaging with Thunder or other members of the organization in and out of the hospital. And today, we know that Nicholas has always been blessed with your love…even when no one was looking! The communities of Northern California are fortunate to have you be who you are.

And THANK YOU THUNDER for in-the-moment stopping and sharing your energy with Justin and Troy. Wow, it seems like you helped to make this day a special day!

REMEMBER-3 new Nicholas Colby Fund Photo Albums
Copying and pasting the following address into your browser you will see photos of some of the beautiful children experiencing The Nicholas Colby Fund. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

***Please click on View Photos to see a picture of Nicholas in a "Spy Kids" outfit that he created***
________________________________________
Sunday, January 14, 2007 10:45 PM CST
DREAMING OF PARADISE
Last night I dreamt of shopping with Nicholas (mom and our other boys are the shoppers).

This morning the first song heard was a Hawaiian song, "Lady You Are My Rainbow" by The Aliis from a Hawaii's Golden Groups CD. It is a song we listened to on our last trip to Hawaii with Nicholas. Many of you may recall the love our family has for Hawaii. Yes, most families who have experienced Hawaii love Hawaii. From our marriage, to Nicholas' first Hawaiian trip, to Nicholas' second Hawaiian trip, Hawaii is so very special to us. Remember Hoku the dolphin (October 19, 2006 and December 16, 2005 journals under Journal History) , Na Hoku ring (August 18, 2006 journal written at 2:15 AM and the story about last year's Mother Day with Nicholas), and all of the Hawaii pictures in the three photo albums under Links? Every time we think about Nicholas we feel Nicholas playing and having fun in paradise. Every time we think of Nicholas we think of paradise!

Tonight dad played a card game with grandma Eva (dad's mom) and immediately we talked about Nicholas and the many card games (Uno, Go Fish, Slap Jack, Old Maid, etc.) he played with family, friends, patients, nurses, and doctors. Like many kids, he loved to collect cards as well (Pokemon, Yu-Gi-Oh, Disney, Golden State Warriors cards of players, etc.).

THE SONG FROM THIS MORNING BEAUTIFULLY LINK TO NICHOLAS
So many words and certainly the meaning of the song describe our precious Nicholas-that is a treasure from God. The words beautifully link to many journal entries about Nicholas. We think you will recognize most of the phrases because amazingly they are thoughts we have expressed throughout Nicholas' journey and many of you have witnessed:

Looking at a rainbow when I gaze into your eyes,
I am seeing all the colors of love I needed to find…
You make it so easy to always want to be with you,
There is magic in the way you smile and everything you do…

And once in awhile when I am down in a rut, you came along to get me back up,
You always seem to know, when I am feeling sad which way to go…

Lady (God and Nicholas is what we sing) you are my rainbow,
Lady (God and Nicholas) you are my rainbow,
Lady (God and Nicholas) you are my rainbow,
Stay right here don't you go.
Lady (God and Nicholas) you are my rainbow…

So many reasons for loving you the way I do…
It does not matter where I am, if I am there with you…

And once in awhile when I am down in a rut, you came along to get me back up,
You always seem to know, when I am feeling sad which way to go…

Lady (God and Nicholas) you are my rainbow,
Lady (God and Nicholas) you are my rainbow,
Lady (God and Nicholas) you are my rainbow,
Stay right here don't you go.
Lady (God and Nicholas) you are my rainbow……

TOMORROW'S NICHOLAS COLBY FUND EXPERIENCE
Remember, tomorrow afternoon (Monday) three patients and their families will experience a Golden State Warriors basketball game against the Los Angeles Clippers through the Warriors and The Nicholas Colby Fund collaborating toward Helping Children Be Children.

NOTE: The Happy Birthday book in the Home Page photo above about Martin Luther King, Jr. is a book given to Nicholas one year ago by his teacher. We read the book with Nicholas and Nicholas wrote about it. We have so many writings and notes from Nicholas that virtually every time we open a closet or drawer…there is a wonderful message from Nicholas.

REMEMBER-3 new Nicholas Colby Fund Photo Albums
Copying and pasting the following address into your browser you will see photos of some of the beautiful children experiencing The Nicholas Colby Fund. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

***Please click on View Photos to see a picture of Nicholas in a "Spy Kids" outfit that he created***
________________________________________
Saturday, January 13, 2007 10:34 PM CST
NEVER GONE, NEVER FAR
Sometimes we experience sudden urges of grief when we see, hear, smell, touch, or talk about something or remember one of the ubiquitous things about Nicholas. Unexpectedly these experiences trigger a surge of intense emotions missing Nicholas. We know that some of these emotions will pop up during memorable moments, occasions, and / or holidays. However, it still does not make those experiences easier. You may have read about our approach to "all this leukemia and bone marrow stuff" on one of our journal entries. We faced the journey in positive ways intended to help Nicholas "live" each moment, each day…and with each breath (such as the September 27, 2006 journal under Journal History).

We are thankful to be in the arms of God with Him lighting our path to love and all of love's attributes…even when sometimes it seems hard to see the path in front of us. Like Nicholas' constant presence, we trust and believe God is always right there before us, behind us, within us, and all around us. Nicholas would sometimes say, "I know God loves me, but how come He does not heal me?" Remember the times Nicholas would want us to read from his Children's Bible, or for us to pick him up, hold him, and pat him while we walked…prayed…cried (loving God)…and felt the love of God and the love God enabled us to experience? Nicholas WAS loved!

Our response to questions like this was always rooted in trusting and believing God. Not blindly trusting or wishing God's love to love. Trusting and everyday seeing blessings come Nicholas' way, come our way. We would talk, sing, and pray… "we know God loves you and we know what we want and when we want it. And God, who we need right now is You…as we know that Your love never fails and as much as we want to see and feel healing now we trust Your love and recognize that the healing is taking place in Your way." (Remember the November 18 - 20, 2005 journals under Journal History?). Through God, letting tears flow, in Love's way we were comforted then and now.

GRIEF
Alan Wolfelt in "Understanding Your Grief" writes, "Grief comes in and out like waves from the ocean. Sometimes when you least expect it, a huge wave comes along and pulls your feet right out from under you." We are so fortunate to have amazing, beautiful, calming, delightful, energizing, fun…memories of our precious Nicholas. From A to F to Z in the alphabet, and 1 to 6 to infinity (to infinity and beyond as Nicholas would say as he mimicked Buzz Lightyear)…Nicholas, son, you are everything pure, perfect, and whole!

REMEMBER-3 new Nicholas Colby Fund Photo Albums
Copying and pasting the following address into your browser you will see photos of some of the beautiful children experiencing The Nicholas Colby Fund. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

Nicholas Colby Fund Begins
www.kodakgallery.com/I.jsp?c=hzm3iu6.8g4xdcqe&x=1&y=95eth4

Nicholas Colby Fund Christmas 2006
www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Nicholas Colby Fund 1st Quarter 2007
www.kodakgallery.com/I.jsp?c=hzm3iu6.5fjsrxh2&x=1&y=l9mqah

***Please click on View Photos to see a picture of Nicholas in a "Spy Kids" outfit that he created***
________________________________________
Friday, January 12, 2007 11:59 PM CST
HELPING CHILDREN BE CHILDREN
Because of Nicholas and the support of all of you, tomorrow night (Saturday) 2 patients and their families from Children Hospital Oakland (CHO), and 2 patients and their families from Stanford-Lucile Packard Children's Hospital (LPCH) will be in a suite enjoying the world famous Harlem Globetrotters basketball game / show.

ANOTHER ADDITIONAL EXPERIENCE...Along with the Nicholas Colby Fund experiences scheduled for January that were outlined in this past Monday's journal, today the Golden State Warriors contacted us with an offer to send two patients and their families to a Warriors' game this coming Monday, January 15, 2007 (holiday for Martin Luther King, Jr.). With the wonderful relationships at CHO and LPCH we were able to help two families break away from their medical journey to plan a "great time out" (the Warriors' slogan) this coming Monday.

SAME EVENT AND ANOTHER EXPERIENCE...The Nicholas Colby Fund has been blessed with some amazing partnerships and offers from organizations and individuals trusting The Nicholas Colby Fund and its work toward Helping Children Be Children. Again we received a donation of tickets from an individual to send a patient from LPCH and her family to this coming Monday's Warriors' game.

So this coming Monday's experience for three patients and their families is adding to love begetting love.

Sweet Nicholas, because of you and God's love every action we take, we take it for you and for God. Son, the love from God and The Nicholas Colby Fund touching dozens of patients is a warm, gentle embrace of you.

***Please click on View Photos to see a picture of Nicholas in a "Spy Kids" outfit that he created***

REMEMBER
Copying and pasting the following address into your browser you will see current photos of some of the beautiful children experiencing The Nicholas Colby Fund this holiday season. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
________________________________________
Thursday, January 11, 2007 11:36 PM CST
WHY WE TRUST & BELIEVE NICHOLAS IS MORE THAN OKAY
For all the love and joy a child brings into one's life, we know love and joy comes from God. With all the beautiful and uplifting memories we will forever have, we know we are missing a treasure from God.

As we continually trust and believe...it does feel like a roller-coaster journey in terms of knowing we are loved, AND feeling the hurt emptiness brings. And there is another "and"...that is for all the love and joy Nicholas continues to pass on and inspire we know Nicholas is Heavenly pure and perfectly happy. We are comforted experiencing the love ALL OF YOU have given Nicholas from virtually everywhere in California; from Hawaii; from across the continental United States; from Canada & Mexico; from countries abroad; AND most of all because God is omnipotent, omnipresent, & omniscient.

Nicholas is not missing us because we are never gone, never far. (All of these thoughts today came clearly to us last night after sharing the Wednesday night journal; specifically referring to the last two sentences under the SURPRISE "heading.")

REMEMBER
Copying and pasting the following address into your browser you will see current photos of some of the beautiful children experiencing The Nicholas Colby Fund this holiday season. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
________________________________________
Wednesday, January 10, 2007 10:36 PM CST
ACTION THE NICHOLAS COLBY FUND - HELPING CHILDREN BE CHILDREN HAS TAKEN IN THE FIRST 6 MONTHS
Everything that we do, we do because of Nicholas' inspiration. The days still do not get any easier, and our nights are always full of Nicholas' amazing spirit lighting up our lives with his ever-glowing love. In the first 6 months The Nicholas Colby Fund has warmly touched the lives of dozens of patients (and their families) through trusted acts of love and compassion, Helping Children Be Children. With Nicholas and these journals (and pictures) Nicholas' story continues...and your direct and indirect support helps us to create these amazing experiences.

- Established collaborative relationships with Children's Hospital Oakland and Stanford-Lucile Packard Children's Hospital

- Provided a modified wheelchair desired by one of "all these beautiful children"

- Established an ongoing partnership with the Golden State Warriors and the partnership has been creating several experiences for children and their families; including a Season of Giving event where patient's / families from Children's Hospital Oakland and Stanford-Lucile Packard Children's Hospital enjoyed a Warriors basketball game in a suite, followed by a surprise party in the Warriors owner's room where players and the mascot (Thunder) delivered gifts to the patients and their siblings. (We secured a gift list from the families without the patients knowing it was for this event.)

- Sent patients and their families into a luxury suite to enjoy the Ringling Bros. and Barnum & Bailey circus; Harlem Globetrotters basketball game (and again on January 13, 2007); many Golden State Warriors' basketball games, and will continue to do so throughout the basketball season and other events at the Oracle Arena in Oakland, CA. For one child the Nicholas Colby Fund had him and his best friend sitting on the floor next to the visiting team's bench at a Warriors game

- Provided Thanksgiving dinners for parents in the hospital with their child (Children's Hospital Oakland and Stanford-Lucile Packard Children's Hospital

- Provided customized Disneyland trip for an oncology patient who held the possibility of this experience close to her heart

- Established a relationship with the Oakland Ice Arena and the partnership sent patients and their families to Holiday "Magic" On Ice performances, followed by gifts including LeapFrog educational toys provided by LeapFrog

- Created a Patient Gift Giving Experience for patients to feel the joy that giving brings during the Christmas holiday. From bins of fun, educational, and simply playful toys, patients in the hospital were able to select a gift for each of their siblings. Partnering with Shazzam from McCovey's Restaurant (of Dudum Sports & Entertainment) the overall experience for the children as well as their parents and the medical staff was inviting and uplifting. (Games Unlimited-Danville and LeapFrog-Emeryville significantly contributed.)

- Provided New Year's baskets (sparkling apple cider, popcorn, "poppers" to ring in the New Year, etc.) for patients, parents, and the medical staff (Children's Hospital Oakland and Stanford-Lucile Packard Children's Hospital)

- Beginning January 20, 2007, providing nutritional packs for parents with children in the Pediatric Intensive Care Unit.

- Moving forward is developing more experiences..."Helping Children Be Children"

SURPRISE
One of the children enjoying the Golden State Warriors' game tonight through The Nicholas Colby Fund was a patient next door to Nicholas during treatment at Stanford-Lucile Packard Children's Hospital. And that patient's name is Nicholas as well. Pleasant surprise as we delivered a Warriors' basketball to them in the suite! We are happy to help other children, and we do feel sad missing Nicholas so, so much. We wonder "why"...many times.

REMEMBER
Copying and pasting the following address into your browser you will see current photos of some of the beautiful children experiencing The Nicholas Colby Fund this past holiday season (December 2006). We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
________________________________________
Tuesday, January 9, 2007 11:59 PM CST
BLESSINGS
In Sunday night's journal we talked about your guestbook entries and emails along with our believing and trusting in God's love and Nicholas' ever present spirit & touch that makes this world a better place. We dearly miss Nicholas and know that he is wonderfully experiencing "The Next Place," referring to the Warren Hanson book we read to Nicholas on May 25, 2006. Remember the excerpts below? (All the words from the book are in the May 26, 2005 journal and it has been comforting having the book to see the amazing, colorful illustrations and to feel the words warm our hearts as well as bring loving tears to our eyes.)

"I'll glide beyond the rainbows. I'll drift above the sky. I'll fly into the wonder, without ever wondering why.

"I'll never be alone; I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one. And the circle of our spirits will shine brighter than the sun.

"I'll have the love of those who loved me, and the warmth of those who cared…the happiness and memories and magic that we shared. I will cherish all the friendships I was fortunate to find, all the love and all the laughter in the place I leave behind. All these good things will go with me; they will make my spirit glow. And the light will shine forever in the next place that I go."

In the Sunday journal we also said that we would talk about some of the acts of love from all of you. Simply stated, your presence on this website for Nicholas, at Nicholas Colby Fund activities, and all of us taking action toward Helping Children Be Children is love that begets love.

NOTES:
- A picture of the three (to date) Nicholas Colby Fund flyers on January 2007 experiences for children can be seen by viewing the photo above on this Home Page and by clicking on View Photos.

- The 3 pictures posted on this site via View Photos can be seen again by clicking on and accessing the first album below under Links: Nicholas with mommy on her birthday in 2003, Nicholas with classmates at a play in 2003, and Nicholas with "his" dog Cheyenne in 2003.

REMEMBER
Copying and pasting the following address into your browser you will see current photos of some of the beautiful children experiencing The Nicholas Colby Fund this holiday season. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
________________________________________
Monday, January 8, 2007 11:59 PM CST
ADDITIONS TO WHAT IS UPCOMING IN JANUARY
1) January 10, 2007. The Nicholas Colby Fund is providing a suite for patients and their families to enjoy a great time out at the Golden State Warriors' game (addition)

2) January 13, 2007. The world famous Harlem Globetrotters bring their basketball show to the Bay Area of California and The Nicholas Colby Fund is offering a suite to patients at Children's Hospital Oakland and Stanford-Lucile Packard Children's Hospital (addition)

A year ago, January 13, 2006 Nicholas was playing and having fun at the Harlem Globetrotters' game. He loves basketball, people, music, dancing…so he was truly having a fun time. Tonight we watched one of the videos taken during his time at the Harlem Globetrotters' game. The joy illuminating from Nicholas and his actions are amazing! Nicholas LIVED and lives so vibrantly in our hearts and souls-thank you God.

PICTURES: Tomorrow night we will post three new pictures of Nicholas imbedded onto flyers for this experience along with the upcoming January 10 and January 27 experiences.

3) January 20, 2007. Another Nicholas Colby Fund action toward Helping Children Be Children as well as parents' focus on their child via a partnership with Children's Hospital Oakland begins. Moving forward The Nicholas Colby Fund will be the provider of nutritional packs for parents with children in the pediatric intensive care unit at Children's Hospital Oakland. These nutritional packs will include a nutritional bar, juice, applesauce, and a mint. Prior to January 20 we will share information about new partners helping The Nicholas Colby Fund make this happen for parents…for children.

4) January 27, 2007. (Nicholas' birthday) Through another collaborative effort with Stanford-Lucile Packard Children's Hospital, a Golden State Warriors' experience will be provided to patients and their siblings. The Nicholas Colby Fund will also arrange enhancements to the experience toward Helping Children Be Children.

BLESSINGS
Because the two additional January experiences were talked about tonight, tomorrow we will talk about some of the acts of love from all of you that we referenced on this past Sunday night's journal.

REMEMBER
Copying and pasting the following address into your browser you will see current photos of some of the beautiful children experiencing The Nicholas Colby Fund this holiday season. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
________________________________________
Sunday, January 7, 2007 11:23 PM CST
THANK YOU FOR THE GUESTBOOK ENTRIES AND EMAILS
It is very comforting and helpful to communicate with all of you through these journals and your guestbook entries (including the emails we received over the weekend regarding the three pictures currently seen by clicking on "View Photos" above).

UPCOMING MARTIN LUTHER KING, JR HOLIDAY (January 15)
Thinking about next week's holiday and a quote from Dr. Martin Luther King, Jr. we thought about the many blessings Nicholas received throughout his life before and during his leukemia journey, as well as the love-begetting-love since he passed onto Heaven. The blessings were very vivid and helpful today through reflecting on:

- Nicholas' life through his amazing enthusiasm, joy, and endless passion for caring about others

- Memories with family, friends, and new acquaintances that would in the moment become "friends"

- These journal entries, going back to when Nicholas was first diagnosed with leukemia

- The pictures on the three albums accessible below under Links, as well as the circle-of-love Nicholas creates through The Nicholas Colby Fund and the recent holiday photo album (referenced below)

- Love through ALL OF YOU and YOUR ACTIONS that directly and in-directly continue to be a very present help to Nicholas, to mom & dad and his brothers, to each other via YOUR GUESTBOOK ENTRIES and your other thoughts, actions, and prayers as you stay with us on what we now call a circle-of-love journey

Thinking about blessings we start with God's love for He has given us an angel-Nicholas-to hold, to know and be known by, and to always and forever love in a very personal way…forever in our hearts and souls…never gone, never far.

THE QUOTE REFERENCED ABOVE from Dr. Martin Luther King, Jr., "An individual has not started living fully until they can rise above the narrow confines of individualistic concerns to broader concerns of humanity…Every person must decide, at some point, whether they will walk in the light of creative altruism or in darkness of destructive selfishness. This is the judgment. Life's most persistent and urgent question is what are you doing for others."

Nicholas, son, while this quote is "full of meaning," it is just another way of expressing that which you do for us and seemingly for so many people who knew you, came to know you, and know of you and your love, amazing enthusiasm, joy, and endless passion for caring about others. You are teaching us, son! It warms our hearts knowing the love you always have had for our Father-God. Your desire to read The Children's Bible and to pray and talk with Jesus as we cried together was another way of being close to Jesus and to God.

***Please click on "View Photos" to see three pictures from 2003 (these came to mind based on the January 4, 2007 journal***

REMEMBER
Copying and pasting the following address into your browser you will see current photos of some of the beautiful children experiencing The Nicholas Colby Fund this holiday season. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

TOMORROW NIGHT'S JOURNAL (Monday) we will talk about some of the acts of love from all of you.

Saturday, January 6, 2007
Out of town (please refer to the January 4 journal)

Friday, January 5, 2007
Out of town (please refer to the January 4 journal)
________________________________________
Thursday, January 4, 2007 10:53 PM CST
AWAY UNTIL SUNDAY, JANUARY 7, 2007
After tonight's journal there will not be another one until Sunday night. Mom & dad will be out of town as mom participates in business meetings all weekend long. The last few years we were with Nicholas on the leukemia journey and mom did not participate in the annual meetings. Three years ago before Nicholas was diagnosed with leukemia was the last time mom participated and Nicholas was right there with us. Nicholas was very much part of all aspects of our lives and our colleagues (family and friends) knew that he was the focus of our lives just like our other boys and certainly God.

We have always had our boys with us virtually everywhere we went-especially when they were young. Our sweet Nicholas will always be with us and very much a part of everything we are, everywhere we go. Although it is excruciatingly painful to be without Nicholas, physically, loving God helps us know Nicholas is everywhere with us spiritually. And loving God helps us know that Nicholas knows we dearly love him-always and forever!

UPCOMING
1) January 20, 2007 begins another Nicholas Colby Fund action toward Helping Children Be Children as well as parents' focus on their child via a partnership with Children's Hospital Oakland. Moving forward The Nicholas Colby Fund will be the provider of nutritional packs for parents with children in the pediatric intensive care unit at Children's Hospital Oakland. These nutritional packs will include a nutritional bar, juice, applesauce, and a mint.

2) January 27, 2007 (Nicholas' birthday) through another collaborative effort with Stanford-Lucile Packard Children's Hospital, a Golden State Warriors' experience will be provided to patients and their siblings. The Nicholas Colby Fund will also arrange enhancements to the experience toward Helping Children Be Children.

***Please click on "View Photos" to see three pictures from 2003***

REMEMBER
Copying and pasting the following address into your browser you will see current photos of some of the beautiful children experiencing The Nicholas Colby Fund this holiday season. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
________________________________________
Wednesday, January 3, 2007 11:59 PM CST
NICHOLAS, HELPING CHILDREN BE CHILDREN
Reflecting on the journal entries during Nicholas' leukemia journey there are countless times he was lovingly caring for others with enthusiasm and joy (even before all this "leukemia and bone marrow stuff"). With every action we take, we are so grateful to truly feel Nicholas' touch and his touch Helping Children Be Children.

This month The Nicholas Colby Fund will begin providing nutritional packs for parents with children in the pediatric intensive care unit at Children's Hospital Oakland. These nutritional packs will include a nutritional bar, juice, applesauce, and a mint. Nicholas loved engaging parents (or adults) as well as other children. Journals written after the Memorial Service on June 2, 2006 include stories from Nicholas' teacher, Ms. Shirley, who shared how Nicholas would introduce himself to parents coming onto the Montessori grounds…and how he never forgot their names. And guestbook entries provided similar stories about Nicholas' passion for engaging with others. Sweet Nicholas, you are so amazing-we love you, son!

In the next couple of weeks we will provide more details about the nutritional packs and people / businesses that are partnering with The Nicholas Colby Fund to make this loving act possible. Once again, it is love begetting love and a circle-of-love in action.

REMEMBER
Copying and pasting the following address into your browser you will see current photos of some of the beautiful children experiencing The Nicholas Colby Fund this holiday season. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
________________________________________
Tuesday, January 2, 2007 11:59 PM CST
TONIGHT - STARING INTO NICHOLAS' EYES
Nicholas is the reason for The Nicholas Colby Fund - Helping Children Be Children. As we do this work, every step of the way is a step thinking more about Nicholas and we smile seeing the joy he received from our love…and, yes, we are saddened not seeing him today. However, staring into Nicholas' eyes there is nothing except love felt. The deeper we stare, Nicholas' spirit seems to surround us and everything good comes into our hearts thinking about Nicholas with God…playing & having fun with Jesus.

To see God's perfect work-Nicholas-is to experience Nicholas forever because nothing contrary to good can co-exist with perfection and purity. Oh God, we do become saddened and thank You for walking before us, behind us, beside us, and within us so that we never lose sight on Your love and all the good that You have in store for us. Thank You for loving Nicholas, loving us, and being there for all of us!

REMINDER - ORGANIZATIONS, TOO, HAVE HELD THE LOVING BATON FOR NICHOLAS
***Will you help us by writing letters of thanks?***

Journals during the last couple of weeks talked about organizations partnering with The Nicholas Colby Fund over the holidays and we have received inquiries for contact information to thank them. Copying and pasting the following address into your browser you will see current photos of some of the beautiful children and what The Nicholas Colby Fund has done this holiday season. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Following are the names and addresses of the organizations partnering with us and we ask that you consider writing them a brief note of thanks to compliment are communications of thanks to them. This is another way that you are "Helping Children Be Children" with us; we know we are blessed having you still with us loving Nicholas.

Games Unlimited
Steve Banducci
800 Sycamore Valley Road
Danville, CA 94526

Golden State Warriors
Neda Barrie
1011 Broadway
Oakland, CA 94607

iVenture Consulting
Peter Hewitt
120 Marsha Place
Lafayette, CA 94549

LeapFrog
Tim Bender
6401 Hollis Street
Emeryville, CA 94608
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Monday, January 1, 2007 9:16 PM CST
WITH HURT THERE IS HOPE AND LIFE TO LIVE NOW AND FOREVER
Many of you may have heard of the book, When Bad Things Happen To Good People, by Harold S. Kushner. He wrote this book for people "who have been hurt by life", to help them find faith that can aid in getting through their troubles, rather than making things worse. Other books like Lance Armstrong's, It's Not About The Bike, provide help toward searching for comfort to give hope. Not everyone dies from cancer; a book, Chicken Soup For The Cancer Survivor, by Jack Canfield, Mark Victor Hansen, and Mary Olsen Kelly lets us know that many people do survive cancer. And we know that the cancer journey is a personal journey that through love begins a loving journey shared by all of those that care.

Nicholas was and continues to be blessed by all of you that care. And through The Nicholas Colby Fund - Helping Children Be Children, we continue the loving journey for Nicholas, with Nicholas, and certainly following God who never, ever left Nicholas' side. While we, of course, still have questions of why…we think about books like those above and are grateful for God's love. We are grateful Nicholas loved God even when he had questions of why (recently we wrote more journals about Nicholas' cries to God and loving God). The pain in our stomachs has not left us and as we recently wrote….it does not get easier, it gets different. We have and continue to have hope and trust God's love. Thankfully, we see some children surviving cancer. And our love toward Helping Children Be Children is to uplift the spirit of all the beautiful children we meet.

These mixed emotions are extremely hard for us because Nicholas is physically not with us. We trust God to love Nicholas while Nicholas-in God speed-is joyously living and loving without any wants or needs. Oh Father, God, we trust that when we see Nicholas in Heaven, for him, it will be like he was at school for the day. He will not have been away from us at all and we praise You for Your love and allowing Nicholas to be never gone, never far…in our hearts & souls forever. We praise You for allowing Nicholas to "just know…" And we praise You for comforting our hurts, giving us hope with Your love, and letting us know that through You Nicholas lives!

ORGANIZATIONS, TOO, HAVE HELD THE LOVING BATON FOR NICHOLAS
***Will you help us by writing letters of thanks?***

Journals during the last couple of weeks talked about organizations partnering with The Nicholas Colby Fund over the holidays and we have received inquiries for contact information to thank them. Copying and pasting the following address into your browser you will see current photos of some of the beautiful children and what The Nicholas Colby Fund has done this holiday season. We think you, too, will see smiles on the faces, eyes sparkling, and/or expressions of children joyfully at play:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Following are the names and addresses of the organizations partnering with us and we ask that you consider writing them a brief note of thanks to compliment our communications of thanks to them. This is another way that you are "Helping Children Be Children" with us; we know we are blessed having you still with us loving Nicholas.

Games Unlimited
Steve Banducci
800 Sycamore Valley Road
Danville, CA 94526

Golden State Warriors
Neda Barrie
1011 Broadway
Oakland, CA 94607

iVenture Consulting
Peter Hewitt
120 Marsha Place
Lafayette, CA 94549

LeapFrog
Tim Bender
6401 Hollis Street
Emeryville, CA 94608

Sunday, December 31, 2006 11:59 PM CST
NEW YEAR'S BASKETS OF LOVE (please click on View Photos above to see one of the baskets)
Delivering New Year's baskets of love to CHO and LPCH was a good thing for our hearts and the appreciation expressed by patients, parents, and the medical staff comforted our souls. At LPCH, there was a patient and family that have been in the hospital for a while. In fact, they were there when we delivered Thanksgiving dinners last month through The Nicholas Colby Fund via all of you that directly and indirectly support us and via our efforts Helping Children Be Children. (As well as your support through loving Nicholas.)

 

At both hospitals we came across a surprise tonight as a patient who experienced one of The Nicholas Colby Fund - Helping Children Be Children experiences this month, was in the hospital. Austin from CHO who was at our December 26 experience and Raymond from LPCH who was at our December 2 experience. Raymond took us on a tour of his hospital room, virtually every inch. His mother said he has not had many visitors so he was soaking in the attention and love sharing his surroundings with us. It was very nice to experience his joy!

And it was nice to talk with some of the staff that cared for Nicholas and "care" for Nicholas even today: Michelle and Mary Jo from CHO and Jill, Shelly, Shelley, Tess, Bri, Ana, Adrian, Cele, and Lizette from LPCH. It was soothing for mom to talk with the nurses and interact with the children we have come to know through The Nicholas Colby Fund. However, for mom, being at CHO for the first time since we left there with Nicholas in September 2005 when he relapsed…it was a little difficult being back there which resulted in her feeling nauseous. We were both pleased to talk with the parents and share moments of parenthood.

Nicholas, son, we love you and recognize that we are doing what you continue to do-love! Happy New Year son, and Happy New Year everyone.

REMEMBER
Copying and pasting the following address into your browser you will see current photos of some of the beautiful children and what The Nicholas Colby Fund has done this holiday season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
________________________________________
Saturday, December 30, 2006 11:59 PM CST
CELEBRATING, REMEMBERING
Tonight we were in San Francisco at Pier 39 for a dinner birthday party. Remember Linda, who sang the song Held during Nicholas' Memorial Service? We joined a few others for her birthday dinner. Memories abounded as we reflected on the many places at Pier 39 that we spent time with Nicholas. After dinner Sheila and I went to Ghiradelli Square for hot chocolate, another place with soul warming memories. We then drove across the Golden Gate Bridge-another memorable spot with Nicholas-and stopped at Vista Point on the Marin side of the bridge to look back across the Bay to take in the glistening beauty of San Francisco.

Yes, Vista Point is another spot…and it is the spot dad proposed to mom. The glistening view of San Francisco from this spot provides a sparkling diamond affect. As we pray to God, still with pain in our stomachs, we thank Him for the love He provided to Nicholas before, during, and now after the leukemia journey. Memories are precious although sometimes they seem to provide a suffocating affect missing Nicholas so much. And thankfully, Nicholas provides a sparkling diamond affect onto our hearts and souls as we remember everything about our precious son who-we thank God-is never gone, never far.

LOVING NICHOLAS GENERATES MORE ACTIONS OF LOVE
Nicholas loved celebrations-especially fireworks. Tomorrow we have planned to help patients and their families (including the medical staff) at Children's Hospital Oakland and Stanford-Lucile Packard Children's Hospital ring in the New Year by providing them with New Year's baskets of love and excitement. For some, they be admitted into the hospital today for the first time or have to be re-admitted. We will deliver sparkling cider, popcorn, "poppers" (miniature paper-string shooters), New Year's hats, and other fun things. Nicholas and The Nicholas Colby Fund - Helping Children Be Children, and family time togetherness.

REMEMBER
Copying and pasting the following address into your browser you will see current photos of some of the beautiful children and what The Nicholas Colby Fund has done this holiday season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
________________________________________
Friday, December 29, 2006 11:59 PM CST
FRIENDS AND SAD COINCIDENCES TONIGHT
Tonight dad spent time with a high school friend at Warriors game and mom spent time with friends from high school and her family in her hometown. For dad, his high school friend had his 7-month old son pass away about five years ago. For mom, her high school friend had her 3-month old son pass away many years ago. It was not until this moment that we realized the sad coincidences of having son's passing away.

Every day we feel sadness AND we are grateful that everyday we feel God's presence. We feel God's love that was also felt during Nicholas' leukemia journey. Some people may wonder how we could say that we felt love during the journey! It may seem incongruent to feel love in the midst of the leukemia battle; however, there truly was love felt that enabled Nicholas to "live" while on the journey…having the ability to love, play, and laugh as well as cry. Remember the times we cried with Nicholas and how crying turned into prayers, songs of love, and of course patting Nicholas just the way he liked?

- ON MAY 5, 2006 WE WROTE THE FOLLOWING ABOUT CRYING:
"… although Nicholas had a couple episodes of sadness and crying tonight that we transitioned into prayer and crying. Of course, we do not have answers to so many questions Nicholas has about "all this leukemia and bone marrow stuff" including questions that we, mom & dad, have about it all.

"As Nicholas cries out for mom & dad, saying, 'father, mother...,' it seems to comfort him knowing we hear his cries and we are right there! And thinking about the comfort we provide Nicholas, we are comforted in the face of all that is going on as we cry out with Nicholas saying, "Father...". If mom & dad can comfort Nicholas by hearing and being there for him, we look to God-our Father-for His comfort and "being there" for Nicholas recognizing that He offers infinitely more of everything Nicholas needs."

- AND FOLLOWING IS WHAT WE WROTE ON MAY 1, 2006 ABOUT CRYING:
'"Why me, why doesn't God touch me?' was the cry for help Nicholas repeatedly cried this morning. His tears and full body expression to mom & dad was to hold him, pat him (rhythmatic patting of our hands on his body), and rock him gently to help soothe the pain away.

"As we softly talk and pray with Nicholas we tell him that he continually does everything just right and as hard as it certainly seems, God loves him so very, very much! He knows, we know, that God has blessed him in many ways; AND we cry out to God asking Him to let Nicholas FEEL His love in more ways because Nicholas really, really deserves complete healing NOW. (We recognize that it is not our will, but His that will be done and His word tells us that Nicholas is healed by His love.) We pray so hard for the manifestation of God's love to completely do, NOW, what it does-reveal purity and perfection..."

Tonight and every day and night for the rest of our lives our cries will comfort us and keep us forever closer to Nicholas!

REMEMBER
Copying and pasting the following address into your browser you will see current photos of some of the beautiful children and what The Nicholas Colby Fund has done this holiday season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
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Thursday, December 28, 2006 11:59 PM CST
QUIET TIMES
It was a quiet day at work for dad and a busy one at work for mom although late evening it was quiet for both of us. At Nicholas' site tonight it was a quiet, calm environment with the moon directly overhead. Remember the echoes of love we talked about in the October 8 and August 4, 2006 journal entries? Tonight, once again, loudly I called out: "Nicholas I love you!" over his site, down into the valley of Briones Regional Park, and not only heard but felt the echo rising over the far side of the valley, into the air, and ricocheting back to me.

We talked about how these echoes of love-as we call them-are comforting and combat the feelings of hurt and pain in our stomachs. We know God wants us to feel His love and for us to know that He has Nicholas safely with Him. And God calls on us to trust His love will provide…for Nicholas…for us…and all who "love" Him.

We will never give up on God's love that enabled Nicholas to "live" during his leukemia journey and vibrantly live in our lives today. Missing Nicholas so much brings us back to hearing God say, "Be still and know that I am God!" Because of this we can fall asleep loving Nicholas with fewer tears although the sadness persists.

REMEMBER
Copying and pasting the following address into your browser you will see current photos of some of the beautiful children and what The Nicholas Colby Fund has done this holiday season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
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Wednesday, December 27, 2006 10:50 PM CST
PHOTOS OF NICHOLAS' SITE AND "HELPING CHILDREN BE CHILDREN"
The photo above shows Austin and Kai "playing and having fun" (from Nicholas' song of love) with Thunder of the Golden State Warriors. Thunder autographed basketballs from the Nicholas Colby Fund for all the children before we surprised the children with gifts from a list we secured from their parents.

Also, by clicking on View Photos (above) you will see how we decorated Nicholas' Oakmont Memorial Park spot for the holidays.

Copying and pasting the following address into your browser you will see current photos of some of the beautiful children and what The Nicholas Colby Fund has done this holiday season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

January 27 is Nicholas ' birthday followed by Valentine's Day. Umm, we are thinking about how we should decorate the site for Nicholas.

PLANNING A JANUARY OR FEBRUARY NICHOLAS COLBY FUND EXPERIENCE FOR LPCH PATIENTS AND THEIR SIBLINGS
Communication today from Stanford-Lucile Packard Children's Hospital provides another collaborative opportunity to create a special outing for some patients and their siblings. Please stay tuned.

REMEMBER
- Referring to the third photo album below, under "Links," and scrolling to 9/22/06 and 11/11/06 you can view Nicholas' flat memorial marker on his site at Oakmont Memorial Park in Lafayette. A heart shape frame holding his picture lasered onto marble, Cherub emblem, & balloons emblem...love expressed and felt

- Also referring to the third photo album below, you can view the site and how we transition it for Nicholas by scrolling to 6/6/06, 6/17/06, 6/19/06, 6/24/06, 10/22/06, 11/11/06, 11/21/06, and 12/25/06 (showing the standing marker)

- We are so glad we read, "The Next Place" by Warren Hanson, to Nicholas on May 25, 2006 because although we know he heard and felt all the love in the room, the words from the book reinforced God's love and His perfect work for Nicholas…the next place. We are comforted knowing Nicholas heard the following excerpts from "The Next Place" and are experiencing them to be true (on the back of the standing marker):

"I'll glide beyond the rainbows. I'll drift above the sky. I'll fly into the wonder, without ever wondering why.

"I'll never be alone; I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one. And the circle of our spirits will shine brighter than the sun.

"I'll have the love of those who loved me, and the warmth of those who cared…the happiness and memories and magic that we shared. I will cherish all the friendships I was fortunate to find, all the love and all the laughter in the place I leave behind. All these good things will go with me; they will make my spirit glow. And the light will shine forever in the next place that I go."

The front of the standing marker reads:

"The sun will no longer be your light during the day nor will the brightness of the moon be your light, because the Lord will be your light forever."

- Isaiah 60:19
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Tuesday, December 26, 2006 11:59 PM CST
LABOR OF LOVE
We just returned home from another Nicholas Colby Fund experience for two patients and their families. Wow, we are tired tonight from work toward creating fun and happy times for the patients, as well as tired emotionally from the "sweetbittersweet" toll. (Do you remember how we describe "sweetbittersweet (December 18, 2006 journal, under Journal History))?

Working toward Helping Children Be Children continues to seem to be a way for us to care for Nicholas. So we are very, very happy to do whatever it takes directly or indirectly to do just that. The engaging way Kai and Austin were throughout the night, and their smiles were enough to make us happy (even if just for a few moments or evening). And seeing their joy as they engaged with Thunder, the Warriors' mascot, helped generate love in our hearts. PHOTOS TOMORROW NIGHT (Wednesday)!

Talking about love begetting love-what an amazing blessing and lesson. Shazzam also participated with us tonight helping to further enhance the experience for the children. (The December 19, 2006 journal talks about Shazzam and you can see pictures on the Holiday photo album referenced below under "Remember…Perspective Via Photos.")

Love begetting love and the circle-of-love has been an incredible demonstration of caring by those who have partnered with The Nicholas Colby Fund. Tonight it was the Golden State Warriors, LeapFrog (from their recent contribution), Shazzam, and families of the patients…all for the good of the patients! It all started with God, cascading from Jesus, transcending into Nicholas, flowing from our families and so many wonderful friends (with the foundation of Gina Baker as a springboard that all of you have supported)...The Nicholas Colby Fund is Helping Children Be Children.

SPECIAL TREAT
Often we wrote on the journals about so many blessings in our lives before and during Nicholas' leukemia journey. We are still blessed, even though we sometimes write about the pain missing Nicholas, and looking at the alphabet all of you show up on our list of blessings in our lives. Tonight, a long-time friend and his family spent the evening with us at the game and afterwards. Like many of you, they were and are a constant reflection of God loving us. Thank you all for the special treats you provide to sweeten our lives.

REMEMBER…PERSPECTIVE VIA PHOTOS
- Please click on View Photos for a 3-picture perspective of the last three months Nicholas was physically with us: a harp, Easter, and smiles that blended together provide us with rhythmatic joy through Jesus and God.

- Photos of Nicholas' Memorial Park spot decorated for the holidays will be posted tomorrow on the Home Page and / or one of the 3 View Photos.

- Copying and pasting the following address into your browser you will see photos of some of the beautiful children and what The Nicholas Colby Fund has done so far this holiday season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Oh, Nicholas we love you son!
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Monday, December 25, 2006 11:51 PM CST
TO EVERYONE, EVERYWHERE
Happy Holidays: Merry Christmas, Mele Kalikimaka (Nicholas liked saying Merry Christmas the Hawaiian way), Happy Hanukah (Jewish; thanks Allie & Becky), Frohe Weihnachten (German; thanks Tina & Mitch)…

Because God is God and Nicholas is everything good we, absolutely, trust and believe Nicholas is letting us know: "I love you all dearly, Now don't shed a tear, I'm spending my Christmas, With Jesus this year."

To all the beautiful children (as we have always called children navigating a leukemia or other life threatening illness) undergoing treatment or off treatment, as well as children free from having to know anything about cancer or any other life threatening illness…we pray they are children being children having a holly, jolly holiday!

SEASON OF GIVING CONTINUES FOR THE NICHOLAS COLBY FUND - HELPING CHILDREN BE CHILDREN
Tomorrow night, Tuesday, two patients from Children's Hospital Oakland and their families will have a great time out via The Nicholas Colby Fund. They will be in a suite to watch the Golden State Warriors versus the Philadelphia 76ers. In partnership with the Warriors' organization again, Thunder (the Warriors' mascot) will surprise the patients and their families with a special, personal visit in the suite. (For medical reasons they were unable to participate in the December 14 event the Warriors held for patients from CHO and LPCH via The Nicholas Colby Fund.)

REMEMBER…PERSPECTIVE VIA PHOTOS
- Please click on View Photos for a 3-picture perspective of the last three months Nicholas was physically with us: a harp, Easter, and smiles that blended together provide us with rhythmatic joy through Jesus and God.

- Photos of Nicholas' Memorial Park spot decorated for the holidays will be posted on the Home Page or one of the 3 View Photos in the next couple of days.

- Copying and pasting the following address into your browser you will see photos of some of the beautiful children and what The Nicholas Colby Fund has done so far this holiday season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
________________________________________
Sunday, December 24, 2006 11:38 PM CST
LAST CHRISTMAS NICHOLAS GAVE US LOVE, THIS CHRISTMAS NICHOLAS GIVES US LOVE
A year ago tonight we asked Nicholas what he wanted to include on that night's journal. He just asked us to say, "Mele Kalikimaka!" Which as you may remember is Hawaii's way of saying Merry Christmas. So tonight, as we (mom & dad) also wrote on the journal a year ago: enjoy your families, enjoy what each has to offer, and let love guide your thoughts and actions-Happy Holidays!

SWEET JESUS, LOVING GOD
Following are words from hymns we blended and often sang with Nicholas:

…If I should feel lonely, or I should feel sad, I'm so contented and my heart is so glad…joy bells are ringing, in my heart I'm singing, it's wonderful to know that He's mine…oh, how I love Jesus…oh, how I love Jesus…oh, how I love Jesus…because He first loved me…

…To me, He is so wonderful…to me, He is so wonderful…to me, He is so wonderful…because He first loved me…

PERSPECTIVE VIA PHOTOS
- Please click on View Photos, above, for a 3-picture perspective of the last three months Nicholas was physically with us: a harp, Easter, and smiles that blended together provide us with rhythmatic joy through Jesus and God.

- Copying and pasting the following address into your browser you will see photos of some of the beautiful children and what The Nicholas Colby Fund has done so far this holiday season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
Sunday, December 24, 2006 11:38 PM CST
LAST CHRISTMAS NICHOLAS GAVE US LOVE, THIS CHRISTMAS NICHOLAS GIVES US LOVE
A year ago tonight we asked Nicholas what he wanted to include on that night's journal. He just asked us to say, "Mele Kalikimaka!" Which as you may remember is Hawaii's way of saying Merry Christmas. So tonight, as we (mom & dad) also wrote on the journal a year ago: enjoy your families, enjoy what each has to offer, and let love guide your thoughts and actions-Happy Holidays!

SWEET JESUS, LOVING GOD
Following are words from hymns we blended and often sang with Nicholas:

…If I should feel lonely, or I should feel sad, I'm so contented and my heart is so glad…joy bells are ringing, in my heart I'm singing, it's wonderful to know that He's mine…oh, how I love Jesus…oh, how I love Jesus…oh, how I love Jesus…because He first loved me…

…To me, He is so wonderful…to me, He is so wonderful…to me, He is so wonderful…because He first loved me…

PERSPECTIVE VIA PHOTOS
- Please click on View Photos, above, for a photo perspective of the last three months Nicholas was physically with us: a harp, Easter, and smiles that blended together provide us with rhythmatic joy through Jesus and God.

- Copying and pasting the following address into your browser you will see photos of some of the beautiful children and what The Nicholas Colby Fund has done so far this holiday season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
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Saturday, December 23, 2006 11:59 PM CST
DECORATING AT NICHOLAS' SITE WAS JOYFUL, AND THERE WERE "DIFFERENT" EMOTIONS THROUGHOUT THE DAY
Recently an expression shared with us, "it does not get easier, it gets different," has been how we describe being without Nicholas (physically). This morning we completed decorating Nicholas' site at Oakmont Memorial Park:

- Large snowflakes & very large-bright bulbs (silver, gold, and red) hanging down at different heights from the evergreen tree over Nicholas' site

- Colorful bulbs on stakes allowing us to place them at different heights in the grass above Nicholas' flat marker (silver, gold, red, green, and blue)

- Big, red bows on his curved bench, birdbath, and one on the tree

It was joyful to decorate for Nicholas…and we were very, very sad missing Nicholas. Shopping was "different"…without going into sections of stores for little boys and girls…without having Nicholas visit Santa Claus…without eating with Nicholas (Japanese restaurant tonight, one of his favorites)…without the joy of just playing & having fun…

And late tonight there were more tears…tears of sadness as we began to fill stockings…tears missing his voice, his expressions, and the simple-loving things he does. We have been very active with The Nicholas Colby Fund and that has wonderfully occupied large segments of our time as well as mental state of being. Being active with The Nicholas Colby Fund is caring for Nicholas in many ways and, seemingly, when we are not active with the Fund we have more time to ponder which generates those "why" questions and stomach pain. And we call out more to our Father, God, for the comfort that just saying His name provides. God, it is You that we need and You that we focus on enabling us to feel Nicholas' everlasting love that touches our lives in amazing ways.

We pray and trust God that we will be okay-knowing Nicholas is more than just okay.

ANOTHER WONDERFUL SURPRISE
Remember, Nicholas loved acting out scenes from Dr. Seuss How The Grinch Stole Christmas-Jim Carey. In our minds and in our hearts we experience Nicholas' gift of connecting in amazing ways and sharing love that fills those he engaged. At our doorstep tonight someone placed the classic, Dr. Seuss' How The Grinch Stole Christmas (DVD). We are grateful for the thoughtful ways all of you remember Nicholas and how you help us along the way…along with Nicholas! To all of you: family, friends, and new acquaintances…how you show up directly and indirectly into our lives are blessings. We pray that you "feel" our love and thanks.

THANKFUL GOD IS GOD
We are not sure how it will be tomorrow night, Christmas Eve, and the eve of it being seven months since Nicholas has passed. However, we will focus on God, on Jesus, on Nicholas and all the joy from memories with Nicholas and joy that we are blessed to experience over and over about Nicholas. And, we will watch both DVDs…Dr. Seuss How The Grinch Stole Christmas. Our state-of-being, we pray, will be just knowing the shared love we have with Nicholas, that it is God who is directly watching over Nicholas, Nicholas is playing & having fun with Jesus, and with God's speed Nicholas is never gone, never far…and Nicholas is more than okay, he is perfectly and purely everything.

REMINDERS
- Remember the list of "Nicholas Favorites" from appetizers, holidays, movies, and more? They are listed on the August 15, 2006 journal entry, under Journal History. Of course, if your computer speakers are on and you are listening to Nicholas' Song-Of Love, playing in the background on the Home Page, you will hear other things that are his favorites (words to the song are on the September 7, 2005 journal).

- Copying and pasting the following address into your browser you will see photos of some of the beautiful children and what The Nicholas Colby Fund has done so far this holiday season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
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Friday, December 22, 2006 11:59 PM CST
OUR WISH, OUR TRUST IN GOD
During this season of giving and referring to what we wrote about it in last night's journal, our wish "is" for it to be Christmas all year long. The thoughts and actions of so many people during this time of year are about love and we are sure you have seen-through God's love-the wonder of Nicholas' love. Nicholas is another amazing gift from God and His love is perfect, complete, and everlasting so we trust Nicholas is forever being loved and surrounded by love (and how wonderful that is).

Trusting God, for us, also means following Him and that is why Helping Children Be Children through The Nicholas Colby Fund is our passion. For Nicholas it must be Christmas "all year long" and we trust our work is a start for it to be Christmas all year long, in some ways, for all of the beautiful children we touch.

PLEASE CLICK ON "VIEW PHOTOS"
Clicking on View Photos, above, you will see three pictures of Nicholas with mom, dad, and our family. God is is the source of love for all these beautiful children we engage through The Nicholas Colby Fund; and Nicholas is the inspiration for Helping Children Be Children. We feel Nicholas is our inspiration for many reasons, one because Nicholas was and is forever an angelic child so full of everything perfect and pure. While "we just know..." (referring to general talks with Nicholas months before he passed that whether or not we see each other we will always "just know" that we are in each others hearts and souls), we did not fully know the angelic gift we were holding. However, we did know and know that God gave us an everlasting gift and following is a message about a gift we received awhile ago:

- CARD WITH PICTURE OF THE "PIETA" BY MICHELANGELO
This card was given to us reading, "The Holy Sacrifice of the Mass will be offered for the repose (resting) of the soul of our darling Nicholas." For those of you who were physically present with us at Stanford-Lucile Packard Children's Hospital on May 25, 2006, you may remember us holding Nicholas in our arms for a long period of time after he passed. This card had special meaning to the giver of the card because they said as we were holding Nicholas it reminded them of Michelangelo's "Pieta."

NOTES
- The Nicholas Colby Fund's holiday season photo album has been updated with some of the photos from the Patient Gift Giving Experience at Children's Hospital Oakland (December 20, 2006 journal under Journal History)

- Copying and pasting the following address into your browser you will see photos of some of the beautiful children and what The Nicholas Colby Fund has done so far this holiday season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
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Thursday, December 21, 2006 11:59 PM CST
THIS CHRISTMAS-DECEMBER 25, 2006-IT WILL BE SEVEN MONTHS…since our sweet Nicholas ascended to Heaven. As we continue to work through missing Nicholas while caring for him through The Nicholas Colby Fund, the "why" question still surfaces.

Giving of ourselves via The Nicholas Colby Fund feels so right because giving is what Nicholas constantly delivered and delivers to us. From what many of you told us, Nicholas continually delivers to you as well. We trust and believe that God's words are not returning to Him void and therefore we know Nicholas is with Love. With God Nicholas cannot be wanting or needing anything. We are so grateful for God's promises and His love.

The memories of Nicholas vividly comfort our hearts and the new memories of Nicholas' touch, through The Nicholas Colby Fund, are somewhat like a perfect melody enjoyed and shared over and over. Nicholas' melody is never tiring and always welcomed-and we thank God.

LOVE BEGETTING LOVE…continues to be like a calling card revealing what you see through Nicholas and The Nicholas Colby Fund-again we thank God for His creation and wonderful masterpiece that forever is amazing work to be shared.

Blessings of love begetting love has also been what is realized from individuals and organizations partnering with The Nicholas Colby Fund - Helping Children Be Children. We also have talked a lot about the "circle of love" experienced in our connections. So what was done today revealed love begetting love via a circle of love. This past weekend we received a telephone call from someone we have never met. It was a call from Mike D., a parent of a child now attending the Montessori school that Nicholas attended in Lafayette.

Mike presented The Nicholas Colby Fund with tickets to this Sunday's San Francisco 49ers (professional football game). The love in his family, shared with us, was shared this evening with the Ronald McDonald House (where we once were with Nicholas) at Stanford-Lucile Packard Children's Hospital. And now a child is able to experience a 49ers football game on Christmas Eve. PLEASE SEE THE ABOVE PHOTO. Like other experiences through The Nicholas Colby Fund, the flyer presented today at the Ronald McDonald House for a special child was personalized for this experience including the photos of Nicholas. So for this flyer we choose a picture of Nicholas in his football outfit and photos in the snow. (Have you noticed that the respective theme pictures of Nicholas correspond to the experience: basketball for basketball, playing in the snow for Holiday Magic On Ice, pumpkins for Thanksgiving, etc?)

OUR LOVE FOR NICHOLAS IS NEVER ENDING AND OUR FOCUS ON CHRISTMAS…will continually be that the spirit of Christmas can be all year long. The December 17, 3, & 1, 2006; February 14, 2006; and December 27, 14, & 11, 2005 journal entries remind us that love is never ending so The Nicholas Colby Fund will focus on never-ending love.

Tonight the nurses at Stanford-Lucile Packard Children's Hospital and the staff at the Ronald McDonald shared crystal clear memories of Nicholas' passion for caring for others through sharing love as well as his things. We are very comforted by all these expressions of love and the connection of love begetting love. And tonight on the guest book from Camilia and her mother who just returned from Disneyland via The Nicholas Colby Fund, they shared expressions of love begetting love:

- "…I could just feel Nicholas with me when I was there. Every time I was scared to go on the ride I just thought of how Nicholas would have wanted me to go and have fun…"

- " Thank you so much to each one of you who contributes in every form and works hard to make this type of event happen. From the bottom of my heart, I will be forever so grateful to the memory of little Nicholas! He would be saying: 'I made her happy.'"

God, it is You that we need to feel the love that we feel, and it is You that we trust to love us all for everything to be more than okay.

And Gina B, your warm, loving thoughts and actions are favorably changing lives in amazing ways. Thank you for your love.

REMEMBER…Copying and pasting the following address into your browser you will see updated photos of some of these beautiful kids and what The Nicholas Colby Fund has done so far this Holiday Season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
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Wednesday, December 20, 2006 11:59 PM CST
ABLE TO "GIVE" GENERATES SMILES
Well, Sheila's idea of "Helping Children Be Children" through the joy of patients "giving" hit its target. The children in the hospital were excited to select from an array of gifts for their siblings. And their parents as well as the Children's Hospital Oakland staff were beaming seeing the joy in the eyes and actions of the patients.

At first, one of the younger patients had to think about this notion of selecting a gift for her siblings...although we also had her select a gift for herself she seemed to warm to the Patient Gift Giving Experience. We expect her siblings-as well as all the siblings from the patients we visited today-will be pleasantly surprised!

And Nicholas, your nurse, Maki, gave you a warm and loving hug-but you already know that because you felt it from her, didn't you? Son, the love for you from the entire staff and parents of children at Children's Hospital Oakland is so strong. Did you hear how you are still teaching the staff about the amazing power of love? And did you hear how you are bringing about smiles of love for you to those that are new to you...especially when they see your beautiful, always loving smile?

Oh Nicholas, we love you so much. Good night son!

REMEMBER
- Please click on View Photos (at the top of the page) to see Camilia getting ready to go to Disneyland, and Clara a beautiful little girl out with The Nicholas Colby Fund being a child at play having fun.

- Copying and pasting the following address into your browser you will see photos of some of these beautiful kids and what The Nicholas Colby Fund has done so far this Holiday Season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
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Tuesday, December 19, 2006 10:32 PM CST
NICHOLAS-NEVER GONE, NEVER FAR…
Nicholas, truly, loved giving as much as receiving. And today, Nicholas is giving to us in countless ways, as we are "Helping Children Be Children" in ways that he always would and always will through The Nicholas Colby Fund.

BEAUTIFUL SURPRISE
Did you see the guest book entries today? Tonight mom & dad received a beautiful surprise as we went to the guest book and saw our sweet angel, Nicholas. The guest book entry included a picture of Nicholas placing a star on top of the Christmas tree as dad held him up high. As you will see, the author was listed as: Me. And the words on the picture are: "I love you all dearly now don't shed a tear I'm spending my Christmas with Jesus this year! ? Nikko"

We do not know the origin of this guest book entry; however, thank you so much for this beautiful surprise. (The picture was taken in December 2003 and came from the first photo album, under Links on the Home Page. Our caption of the photo is: "One star (Nicholas) placing a star on the Christmas tree")

Please refer to the December 13, 2006 journal, under Journal History, when we talked about the 12-days-of-Christmas and a poem that allows us to hear and feel Nicholas' presence more and more. We were always thankful for God's love during Nicholas' journey and continue to thank Him-trusting and believing His words enabling us to feel comforted knowing that Nicholas is in God's arms and playing & having fun with Jesus.

PATIENT GIFT GIVING EXPERIENCE AND ENTERTAINMENT
Referring to yesterday's journal about the Patient Gift Giving Experience, tomorrow (Wednesday) patients at Children's Hospital Oakland will be selecting gifts for their siblings via The Nicholas Colby Fund. Along with the array of fun, educational, and simply playful toys…pre-cut wrapping paper will be provided to help the children complete their gift giving experience.

ENTERTAINMENT? Partnering with The Nicholas Colby Fund - Helping Children Be Children will be Shazzam from McCovey's Restaurant (of Dudum Sports & Entertainment). Shazzam is an amazing entertainer around kids and partnering with us tomorrow should enhance the overall experience for the children in the hospital.

REMEMBER
- Please click on View Photos (at the top of the page) to see Camilia getting ready to go to Disneyland, and Clara a beautiful little girl out with The Nicholas Colby Fund being a child at play having fun.

- Copying and pasting the following address into your browser you will see photos of some of these beautiful kids and what The Nicholas Colby Fund has done so far this Holiday Season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd
________________________________________
Monday, December 18, 2006 11:10 PM CST
HELPING PATIENTS TO "GIVE" TO THEIR SIBLINGS
Do you remember the journals about Nicholas giving to others when he was in as well as out of the hospital? (Such as giving his teddy bear to a patient he noticed was crying, buying a gift with his money from the hospital gift store to give to an outpatient friend coming to visit him...) The Nicholas Colby Fund thought it would be nice for patients to feel the joy that giving brings. Especially during the holidays, patients are-rightfully so-on the receiving end. So keeping with The Nicholas Colby Fund tagline of "Helping Children Be Children" we will be at the Children's Hospital this Wednesday (December 20) with bins of toys for the patients to choose what they want to give to their siblings this holiday season.

Collaborating with others continue to reveal the beauty of love begetting love. Gifts the patients will choose from come from The Nicholas Colby Fund along with gift-contributions from Games Unlimited in Danville, LeapFrog, and several individuals who purchased and delivered gifts to us. (Remember our November 15, 2006 fundraiser at Games Unlimited? In addition to a percentage of the sales going to the Fund they contributed gifts for this Patient Gift Giving Experience.)

We imagine Wednesday's experience will be bittersweet…but we should rephrase the word to be "sweetbittersweet" because the sweetness of Nicholas warms our lives, missing his physical presence leaves a bitter hole in our hearts, however, feeling his love sweetens our souls.

LOVE BEGETTING LOVE
We have been talking about love begetting love since Nicholas' leukemia journey. Exponentially, love begetting love seems to be jumping from one person to another, from one organization to another. We have also been talking about, and doing a lot of, collaboration. Through collaboration, partnering with the Golden State Warriors, Children's Hospital Oakland, Stanford-Lucile Packard Children's Hospital, along with Games Unlimited, LeapFrog, Oakland Ice Center, and many individuals…our tagline "Helping Children Be Children" vibrantly lives on because of Nicholas and the way these organizations and individuals show up.

Using the words, show up, we are talking about how they are in the community. And they have "shown up" with The Nicholas Colby Fund even when no one was looking. They have not partnered with us for public recognition. Truly, they have done so because they care. Sheila and I have been through so much since November 19, 2004 and we know so much more about caring that it is crystal clear to us that these organizations simply and lovingly "care!"

THE WARRIORS AND AAA
God and Nicholas are the focus of every emotion in our lives, every action we take, and our hearts are comforted feeling the amazing love from the Warriors organization and AAA (our employers). Both of these organizations have "been there" for Nicholas and our family before, during, and with amazing care now after Nicholas' leukemia journey. Remember the many journal entries about their actions?

NOTE: And there have been so many of you that day & night helped us whether we were in or out of the hospital. Our older boys, too, helped by living their lives without us around as much as parents are expected to be.

This past Friday and today, we received very, very special contributions from the Warriors and AAA, respectively, because of Nicholas and The Nicholas Colby Fund. The Warriors expressed, "we feel you guys are doing great things and want to continue helping." AAA expressed, "Your volunteer commitment on behalf of the memory of Nicholas is inspiring. Your work to help other children who have serious illnesses and your support of their families through the Nicholas Colby Fund is beautiful."

OTHER NOTES:
- There are more collaborative efforts and partnerships unfolding that we will share as we move forward.

- Please click on View Photos (at the top of the page) to see Camilia getting ready to go to Disneyland and Clara a beautiful little girl out with The Nicholas Colby Fund being a child at play having fun.

- Remember, copying and pasting the following address into your browser you will see photos of some of these beautiful kids and what The Nicholas Colby Fund has done so far this Holiday Season:

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Thank you all for loving Nicholas!
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Sunday, December 17, 2006 11:00 PM CST
SAINT NICK…WELL OUR LOVING NICHOLAS
Nicholas seems to be playing Santa Claus. From Disneyland, Warriors' basketball games, and this weekend's Holiday Magic On Ice shows, love was certainly begetting love, as the Nicholas Colby Fund was "Helping Children Be Children". By accessing the link (well web address) below you can view photos of Christmas experiences for patients from Children's Hospital Oakland and Stanford-Lucile Packard Children's Hospital via the Nicholas Colby Fund.

Please copy & paste the following address in your browser and click to go to the album.

www.kodakgallery.com/I.jsp?c=hzm3iu6.4hcasgke&x=1&y=-cexgvd

Collaborating with the wonderful people in the Golden State Warriors organization, Diane and her daughter Nicole, Peter of iVenture Consulting, and LeapFrog, there are people who care all year long. We do not need to wish it could be Christmas all year long because these amazing people proactively take action to love all these beautiful children even when no one is looking. Thank you all for collaborating with the Nicholas Colby Fund toward "Helping Children Be Children".

Throughout Nicholas' journey and as his story continues, we thank everyone reading this journal because you directly and indirectly "are there" for us.

WE MENTIONED DISNEYLAND!
On December 13, 2006, the Nicholas Colby Fund sent Camilia and her family to Disneyland…another place that Nicholas loved. Coincidently, Nicholas met Camilia at Stanford-Lucile Packard Children's Hospital and he loved to play and have fun with her throughout the hospital. From playing in the hospital rooms to walks in the hallways they had fun. And today, Camilia is playing and having fun at Disneyland with the most wonderful thoughts of Nicholas…it is a small world after all!

LABOR OF LOVE…
We have been very active this month with the Nicholas Colby Fund and it seems to be the right time to be laboring a little bit harder toward helping children to have a wonderful Christmas time of year. While everyday is bittersweet because we miss Nicholas so, so much, the work with the Fund is a labor of love and a way that we can continue to love Nicholas doing what he continues to do…placing smiles on faces and warming hearts.

Thank you God for having Nicholas with You and perfectly full of love and happiness. Nicholas, we love you so, so much. But, you know that we do because "we just know…"
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Saturday, December 16, 2006 11:59 PM CST
HOW WE LIVE
Holiday decorating inside and outside of the house has been difficult. The beauty of Christmas sights, sounds, and scents are wonderfully sweet and uplifting...and we remember Nicholas being part of it all. He loved the colorful lights, the music, and candy canes. On Christmas day it will be 7 months since Nicholas passed on to Heaven. Each day since he has passed our lives have been empty AND at the same time so full of colorful, angelic, and sweet everything because of Nicholas. So this evening at the Holiday Magic On Ice performance, while we were without Nicholas, he was and continues to be an amazing part of our lives and the lives of so many people through The Nicholas Colby Fund.

At the Holiday Magic On Ice performance there were new faces of children via The Nicholas Colby Fund & hopes naturally expressed from parents. Tonight (and our hope tomorrow afternoon during another performance) the faces on the children and their parents revealed joy and happiness. These beautiful sights help to make us feel happy. Caring for Nicholas in the ways we continue to do and because of God we are able to live. What a treat seeing the interaction of the child performers with those from The Nicholas Colby Fund. Okay, you probably know how we will summarize the interaction in just one sentence: Love begetting love.

As we live and go about life it is so wonderful to find notes from Nicholas that he had written during his life. Nicholas loved to write and wrote about everything: what he liked, what he liked about others, what he wanted to do for others, and lots of drawings of hearts as well as rainbows. We found a note today while taking out more Christmas items-it was another one of his wish lists.

"10/23/05

To Santa and to Rudolph:

One of these items, choose which one. Please, please, please.

- The baker thing (Nicholas was referring to an Easy Bake Oven. Remember he liked Rachael Ray as written in the December 11, 2006 journal.)

- Computer (Nicholas received a computer on his January 27, 2006 birthday. The happiness on his face was illuminating as experienced in pictures with his computer on the third album below-under Links-scrolling to January 28 & 29.)

- Couple video games

- Play gun

Thank you Rudolph and Santa, have a merry Christmas.

Love, Nicholas"
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Friday, December 15, 2006 11:59 PM CST
***ANOTHER SPECIAL EXPERIENCE-THIS WEEKEND***
This weekend (Saturday and Sunday) dozens of patients, with their siblings and parents or guardians, from Children Hospital Oakland will experience Holiday Magic On Ice at The Oakland Ice Center.

Before Nicholas was diagnosed with Leukemia, there was a beautiful little girl he befriended that was a few years older than he was. During high school basketball games he and Nicole enjoyed time together…children being children. And now, through an idea born from her mother (Diane) and collaboration with the Oakland Ice Arena, one of the coaches (Brenda) producing the ice show, and an incredible contributor to the patients experience…The Nicholas Colby Fund is again "Helping Children Be Children".

The ice show: good music, great ice skating, and a lot of magical lights await the children. And that is not all, many parents of the ice skaters have arranged an after party for the children where they will have a meet & greet with the performers and some gifts. THE INCREDIBLE CONTRIBUTOR stated above in itself is collaboration at work for children via Peter at iVenture Consulting and LeapFrog (maker of computerized educational toys). Through The Nicholas Colby Fund communications with iVenture Consulting, LeapFrog is providing items for each of the patients and their siblings. Our phrase of love begetting love is so fitting for everyone associated with this experience-thank you!

WHAT THE WARRIORS SAID LAST NIGHT ABOUT NICHOLAS
Reflecting back on the Warriors' event last night we are so grateful that the Warriors organization truly loves Nicholas and focuses their collaboration with The Nicholas Colby Fund, on Nicholas. On the cover of last night's "Tip Off" program (information provided at each game) the Warriors had The Nicholas Colby Fund logo and the following in the Community Corner section:

"The Warriors would like to welcome children and families from the Nicholas Colby Fund to tonight's game. The Nicholas Colby Fund is a non-profit organization which helps create lasting childhood memories by providing exceptional playful opportunities that uplift the spirit of a child diagnosed with cancer, a degenerating condition, or other life-threatening illness.

"Nicholas Colby Gilbert was a dedicated Warriors fan who was close to the Warriors family. Nicholas passed away at the age of six after a year and a half battle with Leukemia. Nicholas' legacy lives on through the Fund…"

THE DETAILS WE TALKED ABOUT LAST NIGHT
Perhaps the guestbook entries from today provide details about the experience last night from the perspective of the patients and their families without any further comments from us. And like the Warriors focus on Nicholas, we were so pleased to read the guestbook entries focusing on Nicholas' spirit as the catalyst for "Helping Children Be Children".

However, pictures may place a spotlight on the experience so this weekend we intend to create a very small photo album just of last night's pictures that we shot (there will be more provided by the Warriors camera / film crew). We also intend to place a link in one of this weekend's journals so you can access the album to see Nicholas' story continuing in the faces, bright eyes, and smiles on faces of children.
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Thursday, December 14, 2006 11:59 PM CST
NICHOLAS' FULL LIFE…AND HIS CARING WAYS CONTINUED-AMAZING NIGHT
We are so grateful that Nicholas had a "full and amazing" life; remember the poignant way someone from New York who never met Nicholas and only experienced Nicholas through this website said in a June 8, 2006 guestbook entry: "…his seemed a life short of nothing but time." Tonight the Golden State Warriors and The Nicholas Colby Fund-from what we heard from the patients and their families-provided a full and amazing time for four families from Children's Hospital Oakland and Stanford-Lucile Packard Children's Hospital.

From a private suite to the Warriors Owner's Room where they were greeted by Warriors player, Troy Murphy, Thunder (Warriors mascot), and a host of Warriors staff, these beautiful patients and their families experienced caring and love. One patient said it was like Disneyland and another said they felt like a celebrity, in terms of the love and attention expressed for them. And we are exhausted from the joy of love and happiness so we will provide more details and pictures over the next couple of days.

Nicholas, we love you, we love you, we love you! As we continue "Helping Children Be Children" we are caring for you. And just like the joy even older children and adults experienced with you, tonight along with the children the adults said they had a great time! Thank you son, and thank You God for continually loving and caring for us.
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Wednesday, December 13, 2006 11:59 PM CST
12 DAYS OF CHRISTMAS & NICHOLAS' PRESENCE AND PRESENT TO US ALL
In a journal last week (under Journal History) we talked about the Christmas time of year. And for us, this Christmas it will be 7 months since our precious son, our angel-Nicholas-transcended to Heaven. God…Jesus…Heaven must have needed an angel that amazingly have been showing so many people how to love because unquestionably Nicholas just being Nicholas was love begetting love. We miss all aspects of Nicholas' physical presence and really do sense his spirit and love…never gone, never far.

We said, as Christmas nears and through connections of the spirit-of-Christmas love is revealed that help us along the way. Experiences like the Nicholas Colby Fund and "believe" surprises received along the way are tributes that wonderfully continue the story of Nicholas. Thinking about the 12-days-of-Christimas, we received the following poem from a friend; we can hear and feel Nicholas' presence. With this poem…the story of Nicholas does continue:

Merry Christmas From Heaven
I still hear the songs
I still see the lights
I still feel your love
On cold wintery nights

I still share your hopes
And all of your cares
I'll even remind you
To please say your prayers

I just want to tell you
You still make me proud
You stand head and shoulders
Above all the crowd

Keep trying each moment
To stay in His grace
I came here before you
To help set your place

You don't have to be
Perfect all of the time
He forgives you the slip
If you continue to climb

To my family and friends
Please be thankful today
I'm still close beside you
In a new special way

I love you all dearly
Now don't shed a tear
Cause I'm spending my
Christmas with Jesus this year.

© & ® Copyright 1990. John Wm. Mooney Jr.
All Rights Reserved
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Tuesday, December 12, 2006 11:59 PM CST
WHAT WE HAVE ALWAYS EXPERIENCED
Since Nicholas' leukemia journey there have been many phrases we have regularly expressed. Following are some of them:

- God's omnipotence, omnipresence, and omniscience
- You are my love, you are my Angel, you are a dream of a son
- We just know (referring to general talks with Nicholas months before he passed that whether or not we see each other we will always "just know" that we are in each others hearts and souls)
- Love begetting love
- Never gone, never far
- In our hearts and souls forever
- All these beautiful children
- Our angel, Nicholas, we do not have to see you to know that you are here

We thought about these phrases that are what we experience, and so many others along with thoughts expressed by many of you during Nicholas' journey and Nicholas' continued journey as our Angel. As we blend all of these thoughts a beautiful picture of God's love surfaces and is imbedded in our hearts and souls. Every single day since Nicholas passed brings sadness; and we are so thankful that there are so many beautiful memories & experiences of Nicholas, of God, of Love. As we reflect, we also live today loving God more and more along with Nicholas, and envision being with God and Nicholas in that "perfect place."

THROUGH REFLECTION WE EXPERIENCE…NICHOLAS TOUCHED ALL WHO KNEW HIM WITH HIS DYNAMIC SMILE AND PERSONALITY
His amazing spirit, energy, enthusiasm, joy, and endless passion for caring about others continue to amaze us all-providing an inspiration for love and life. Everyone blessed to know him, loved him, and loves him today.

WITH LOVE WE EXPERIENCE…NICHOLAS' LEGACY WILL LIVE ON THROUGH…THE NICHOLAS COLBY FUND
To keep in the spirit of Nicholas' passion for caring about others is the foundation of the Nicholas Colby Fund. As you have read the non-profit Fund helps create lasting childhood memories by providing exceptional playful opportunities that uplift the spirit of a child diagnosed with cancer, a degenerating condition, or other life-threatening illness. With awareness and sensitivity the Nicholas Colby Fund works to deliver amazing experiences for children and their families through trusted acts of love and compassion, "Helping Children Be Children".

"GIFTS"-WHAT WE HEARD TODAY
From one of the hospitals: …just being a part of Nicholas' life was gift enough; it is a privilege to be a part of the Nicholas Colby Fund : )

From a grandmother: …thank you for the gift of the Warriors' tickets that was given to my grandson at Children's Hospital Oakland…he will enjoy the game because he loves the Warriors. Small world, I have been working here at AAA and I see you around.

IT IS A SMALL WORLD
As hard as physically being without Nicholas is, it is a "small world" with multiple reasons there are constant reminders of Nicholas that make us sad and some that make us smile. And in this "small world" we continue to be blessed by love begetting love. Thank you! And to us, in some ways, caring for Nicholas via the Nicholas Colby Fund comforts our hearts and our souls…love begetting love.
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Monday, December 11, 2006 10:53 PM CST
ONE OF NICHOLAS' FAVORITE CELEBRITIES (Did you know?)
Mom and nanny (Kimmy) got to visit one of Nicholas' favorite celebrities tonight, Rachel Ray. An Emmy-winning television personality and author, who currently hosts the syndicated series Rachael Ray. In addition, she currently hosts (either in first-run or reruns) four different programs on cable television's Food Network (30 Minute Meals, $40 a Day, Inside Dish, and Rachael Ray's Tasty Travels), and has authored a series of cookbooks based on the 30 Minute Meals concept.

Rachael Ray was at the Sir La Table store in Berkeley for a signing of her newest cookbook "2, 4, 6, 8 Great Meals for Couples or Crowds." Mom wrote a special note to leave for Rachel on the back of her business card as a last minute thought. It said that the only time mom got to watch what she wanted on TV during Nicholas' leukemia journey was if Rachel Ray was on. We hope Rachael Ray knows how much our little prince loved her.

It was a slightly tearful night as mom was standing in line to meet Rachael Ray to have the newest cookbook signed. Conversations started in line with the folks in front and back of mom and nanny. Mom told them that she was there in honor of Nicholas (our beautiful little boy who passed away in May) who loved Rachel Ray, so mom was getting her book signed for Nicholas. Rachel was gracious enough to address the book to "Angel Nicholas!" And Rachael Ray even drew a little sunshine on top of the "A" of Angel. She is such an enthusiastic, energetic person and her expression regarding Nicholas was very beautiful and was a heartfelt touch. Thank you Rachel Ray!

EVER DAY, EVERY NIGHT
Not a day or night goes by without extremely deep thoughts and prayers about Nicholas. Something special still happens just like when Nicholas wanted us to hold him, pat him, pray with him, and simply love those moments together. Every day and night we experience special moments as our thoughts turn to prayers as well as melodies. Sometimes the melodies are of songs Nicholas loved, sometimes we simply create songs from the love constantly felt for / from Nicholas. And like the spirit of the holidays…the Christmas songs allow us to sing to Nicholas in loving, touching ways that seem to comfort us.

Sweet Nicholas, you are completely and perfectly loved! Oh Father, we pray, we are so grateful that Nicholas is with you and nothing, nothing does he fear nor do we fear. Thank You, Father!
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Sunday, December 10, 2006 11:39 PM CST
LOVE, LISTENING, SHARING, GIVING
At Nicholas' site mom saw a cloud in the shape of a heart-a heart-and what was in the middle made an impact as much as the shape. In the middle there was a hole: seemingly a reflection of the hole that forever is in our hearts. While there are so many reflections of God's love and Nicholas' love…the holes remain. With Nicholas' passing we do not understand so many things; and, of course, we are so grateful for the love from God. We trust God and know that He is comforting us and the holes are not bigger than God…

Sharing and giving have always been part of Nicholas and remains a part of our lives today through the Nicholas Colby Fund.

SEASON OF GIVING
The Nicholas Colby Fund and the Golden State Warriors (professional basketball team) are partnering again toward "Helping Children Be Children". Working with Children's Hospital Oakland and Stanford-Lucile Packard Children's Hospital, the Nicholas Colby Fund and the Warriors are sending patients and their families to the December 14, 2006 Warriors game against the Houston Rockets.

After the game, the patients and their families will be escorted into the Warriors owner's room. A holiday atmosphere will welcome them in where Warriors players will meet & greet the patients / families. Selected gifts from a wish list secretly secured will be delivered to each patient as well as their siblings. The Warriors provided lots of love and fun for Nicholas before, during, and after his leukemia journey. Amazingly, they continue to be there for Nicholas and so many other kids providing a Great Time Out (part of their slogan) lovingly blending with the Nicholas Colby Fund and our focus on "Helping Children Be Children".

Nicholas, son, we love you so very much! Son, I do not think we ever talked about the word legacy; however, we can say it is every aspect of what you beautifully provided and continue to provide-love. Our work with what is part of your legacy through the Nicholas Colby Fund, in some ways lets us love you dearly now and forever more.
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Saturday, December 9, 2006 11:59 PM CST
WONDERING WHY eased back more into our thoughts today. We are thankful these thoughts eased in versus rushing in because it would be so hard to continually have piercing thoughts of why, pounding away at us. Months ago, there was this little girl who poignantly wrote about Nicholas, about wondering why (November 11, 2005 journal). We are also thankful for understanding the love, light, and heavenly life that perfectly provides for Nicholas.

Another surprise left at our door seemingly was left as the notion it provided was needed even more now than at other times. The surprise: Silver angel ornament, "Always Remembered," holding a scroll that reads, "I am with you because you remember me."

And the message from the scroll uses words with the same context constantly stated in these journal entries:

"I know I am with you in your prayers, your thoughts, your heart. And though you cannot see me, I will always be a part of life's sweet celebrations in those times when you reflect on how, though things are different, through our love, we still connect. We'll see each other someday when our spirits all are free, until then, I am with you because you remember me."

Well, although these are just words, with God's omnipotence, omnipresence, and omniscience it is no wonder why Nicholas is an amazing part of our lives and "with" us-because we tenderly and plentifully remember Nicholas. Sweet Nicholas, we know that you do not need us to "say" to you that you are in the "perfect place" because we know you are "living" in Heaven. We do say it because it feels good to let you "know" that we know. Thank You, God, for Your promises of love...
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Friday, December 8, 2006 11:59 PM CST
OUR ANGEL
We think-sweet dreams my angel, and we think-sweet joy my angel knowing that God is so very pleased with Nicholas. Nicholas' life was and is beautiful because of the love that enabled him to sail into the hearts and lives of others. Do you remember the joy Nicholas expressed while loving others? Do you remember the gentleness expressed in pictures of Nicholas at play or rest?

All the love the Nicholas Colby Fund, Helping Children Be Children, provides in the lives of children is a bright reflection of God's work in Nicholas that continues to light up so many lives. We are glad to help others and we are sad missing our angel. We feel joy and have dreams of nothing except Nicholas' brilliant everything. Our prayers continue to fill us and refill us with God's love and Nicholas perfect life in Heaven.

God has not left us; it is just so hard not having Nicholas physically with us. We pray, Father…, and let the joy of His name comfort us. We sense the comfort Nicholas felt when he called out to us, father…mother. And now as Nicholas calls out to our Father, in Heaven, we smile trusting that Nicholas is comforted by pure perfection that our Father heavenly provides.
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Thursday, December 7, 2006 11:59 PM CST
STREETCORNER SYMPHONY (song by Rob Thomas)
Following is a song providing something experienced at work…that seems to connect different time periods of Nicholas' life before & during the leukemia journey and even now. And connects our lives with Nicholas, our other sons, our family, and friends-all of you:

It's morning
I wake up
The taste of summer sweetness on my mind
It's a clear day
In this city
Let's go dance under the streetlights
All the people in this world
Let's come together
More than ever
I can feel it
Can you feel it

Come on over
Down to the corner
My sisters and my brothers of every different color
Can't you feel that sunshine telling you to hold tight
Things will be all right
Try to find a better life
Come on over
Down to the corner
My sisters and my brothers there for one another
Come on over
Man I know you wanna let yourself go

Some people
It's a pity
They go all their lives and never know
How to love or let love go
But it's all right now
We'll make it through this somehow
And we'll paint the perfect picture
All the colors of this world will run together more than ever
I can feel it
Can you feel it

We may never find our reason to shine
But here and now this is our time
And I may never find the meaning of life
But for this moment I am fine

NICHOLAS, WE ALWAYS EXPRESSED, SHOWN, AND TOLD YOU WE LOVE YOU
You "just know"...and you are never gone, never far. You are forever in our hearts and souls...and thoughts, experiences, life... God, we love You and thank You for having Nicholas with You as Nicholas plays & has fun with Jesus and loved-ones from everywhere.
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Wednesday, December 6, 2006 11:15 PM CST
A TREASURED GIFT…AND THE GIFT SHARED
We know life goes on AND it is so hard to just go on with life without Nicholas being a part of our lives. To this point, we are thankful that God gave us Nicholas-an amazing gift that is and will forever be treasured in our lives and the things we do. It is a beautiful blessing to see all the things treasured about Nicholas in our lives, the lives of our other three sons, and the lives of others (treasured moments shared with us).

Treasured parts of Nicholas are the foundation and springboard for the actions taken through the Nicholas Colby Fund, Helping Children Be Children. For us, in warm and loving ways, the actions taken with the Nicholas Colby Fund are expressions of caring for Nicholas.

BELIEVE
Believe! Anonymous surprises seemingly have sprinkled "pixie dust" on our lives and we thank God for these blessings. Remember, Nicholas liked Peter Pan a lot so "pixie dust" is fitting. Surprise, a Christmas wreath with a "Believe" placard at our doorstep was the latest sprinkling of love. Like another anonymous surprise we talked about in the November 25, 2006 journal…the Willow Tree father figurine holding a golden heart at his heart…sprinkles of love warmly touch our lives everyday.

Believing is not just about tangible things received; it is simply about love. Thank you, all!

SOMETHING TO SHARE ON DECEMBER 13
As Christmas nears and connections of the spirit-of-Christmas revealing love to help us along the way…things like the Nicholas Colby Fund and "believe" surprises along the way…on the December 13 journal we will share something that perhaps tells a thankful-story to you.
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Tuesday, December 5, 2006 11:59 PM CST
NICHOLAS AND HAWAII
Remember the many journal entries about…and pictures before and after "all this leukemia and bone marrow stuff" of…Nicholas and Hawaii? From swimming with dolphins, jet skiing, snorkeling, sunsets, on the beach with his life-long friend Joey, making new friends, playing in the sand, and on-and-on. Remember the story behind the Na Hoku ring for mom (August 18, 2006 journal and connection to Mother's Day 2006 with Nicholas and our other sons in Denver)? Well, actually, Nicholas and Hawaii as well as Nicholas and just about anyplace there is a loving story.

TODAY…SIGNIFICANT EXPERIEINCE ABOUT NICHOLAS' STORY CONTINUING
Similar to what we have heard from many of you about Nicholas' story continuing, today there was another significant experience about Nicholas' story continuing!

It is a story about a relationship that began before Nicholas was born and continued in some very close ways throughout his life. Today we heard from a friend for the first time in a while. She talked about the fact she was in Maui, Hawaii when Nicholas passed. We heard that she learned a lot about Maui and how it is considered the heart of the world in many respects… Hearing the word, heart, has a significant meaning to us and you have read a lot about our incredible connection with Nicholas; for example, "Forever in our hearts and souls."

Our friend expressed…"no wonder Nicholas had a special bond with Hawaii." She was sad that she was not here when Nicholas passed and was glad she was in Nicholas' special place-Hawaii-because of his fondness for Hawaii. Today she was excited to receive her piece of Nicholas; you know the puzzle piece given to everyone at his Memorial Service / Celebration of Life. Can you hear Nicholas saying, "Do you want a piece of me?" And what our friend gave us today is a treasure that will forever be in our hearts and souls.

Nicholas, every single day your loving touch blesses us. Thank you sweet prince…oops, I mean king! We love you so, so much and are glad that "we just know that we are in each others hearts and souls." Because of God we can feel each other and we are all okay. Remember, Nicholas, how you would say, "I'm okay!" in that beautiful, playful way.
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Monday, December 4, 2006 10:24 PM CST
JOY BELLS AND THE SIGHT, SOUNDS, & SMELL OF CHRISTMAS are everywhere. Children running up to their parents…hearing parents or loved ones talking about the loving gift for a child…the talk of visits with grandparents…hearing the Christmas vacations for students…and on-and-on. Here too, for us these are bittersweet moments in a way although we are not bitter because we experienced-and even today experience-love with Nicholas through God. It has been-and even today is-Love that enables us to experience the sweetness of Nicholas. Although it is very hard these days as much as others, we welcome Love to guide us through our days trusting that Love will enable love in our lives to more than get us through the days & nights.

We may not always have smiles on our faces. However, we always do have smiles from Nicholas and God's breath that fills our hearts & souls with love.
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Sunday, December 3, 2006 11:03 PM CST
SIMPLE MOMENTS TREASURED
A lot of squirrels roam our back yard and it is common to see them on the back patio running around. When Nicholas sat in the family room and saw the squirrels getting into mom's potted plants, Nicholas would call out to mom: "Mom, a squirrel is in your plants!" He seemed to enjoy tattling on the squirrels to see mom chase the squirrel away.

We could hear his voice now and see the joy on his face-a simple pleasure that we treasure.

JOURNAL HISTORY
Remember, clicking on Journal History above enables you to see the journal from yesterday (a loving contrast to the bedtime prayer Nicholas prayed and out at a basketball game for LPCH patients), the day before yesterday (wishing it could be Christmas all year long), and every day back to day 1 (and the amazing love Nicholas expressed on this night) of Nicholas' leukemia journey...reading about our little sunshine's amazing love and blessings from everyone & everywhere through God.

HOW WE ARE DOING TODAY
The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (4)

6) Pain in our hearts, stomachs… (2)

NOTE: The August 5, 2006 journal provides foundational information about these scales.
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Saturday, December 2, 2006 11:59 PM CST
A LOVING CONTRAST: NICHOLAS THEN AND NOW
The first lines in the three paragraphs below is the prayer Nicholas said at bedtime; and the second line of the three paragraphs is what came to us today when placing Christmas decorations at Nicholas' site.

(For those new to Nicholas' website, referring to the third photo album below, under Links, you can view photos of his site at Oakmont Memorial Park in Lafayette and how we transition it for Nicholas by scrolling to 6/6/06, 6/17/06, 6/19/06, 6/24/06, 10/22/06, 11/11/06, and 11/21/06.)

Now I lay me down to sleep, I pray to the Lord my soul to keep
Now I rise to be, daily with Jesus and God with me

Thy Love be with me, through the night
Love surrounds me, and everything is bright

And wake me with the heavenly, morning light
I am awake, I am free, and everything is all right

PATIENTS WITH THEIR FAMILIES equal LOVE & TOGETHERNESS
Responses from the four beautiful kids and their families tonight at the Golden State Warriors' basketball game, certainly, let us know that Nicholas and the Nicholas Colby Fund was "Helping Children Be Children". And a visit by "Thunder" was a nice touch completing the outing…"It's A Great Time Out" (the Warriors' slogan).

PHOTOS of three of the kids with "Thunder" are on the third photo album below, under Links.

NICHOLAS
Nicholas, sweetie, we love you every moment of every day, with every breath taken is a kiss to you, and as we have always said: you are never gone, never far, in our hearts & souls is where you are…and we are with you sweetie!
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Friday, December 1, 2006 11:59 PM CST
WHY SO MANY WISH IT COULD BE CHRISTMAS ALL YEAR LONG
So another month is over and a new one has just begun. Perhaps because it is the month for Christmas, we are thinking about our lives and-truly-everyone near us, around us, and far from us. We are thinking about "all of these beautiful children," children everywhere, and adults everywhere. And thinking about Christmas, we think about the joy that only God can give. In doing so we think about sadness, weakness, and joy experienced. Our prayers, our hope, and our trust is that the joy of Christmas helps to remove all the fear that can surface with troubling or trying times.

For us, the joy of Christmas can truly be all year long. God's love kept us from fear and removed doubt even when we were sad or weak. Amazingly, even when understandably we are sad or weak from missing Nicholas so very much, joy through God takes over as we welcome Him in, and He comforts our sore hearts. So even as another month of missing Nicholas approaches, we see love throughout our lives, blessings in every part of our lives, joy surrounding Nicholas as he plays at Jesus' feet, and healing in ways we just cannot understand. As our hearts are comforted, our souls seem to be free to be nearer to Nicholas. We pray that the joy of Christmas stays with us all year long…and is realized by all, all year long.

***SATURDAY NIGHT***
Remember, Saturday night the Nicholas Colby Fund is sending patients / families from Stanford-Lucile Packard Children's Hospital to the Warriors' game tonight, in a suite, with a special halftime visit by Thunder (the Warriors' mascot). Please see the November 29 journal about Nicholas, the Warriors, and Thunder.

Thursday, November 30, 2006 9:47 PM CST
HOW SMILES SURFACE ABOVE HEARTACHES AND STOMACH PAIN
In this past Tuesday's journal we talked about God's speed and we recognize the November 28, 2006 thoughts were connecting with the July 23 & 21, 2006 journals. The circle-of-love and love-begetting-love notions have been our passion in loving and caring for Nicholas. And since May 25, 2006, these notions have carried us in virtually every dimension-through God. We had never let go of God, trusting Him completely enabling us to devote every measure of energy and time to loving Nicholas…resulting in Nicholas "living" through the awful medical journey! Remember his smiles along the way?

 

Nicholas "lived" life and lives… In may seem unusual, however, through God and trusting Him, smiles surface through our heartaches and stomach pain. The heartaches and stomach pain are because we miss Nicholas so, so much. The smiles are because Nicholas is with God, and Jesus, so there is nothing for us to fear-NOTHING. And this amazing, wonderful knowledge provides great peace. We just miss Nicholas so and thankful Nicholas is never gone, never far…

HEALED IN HEAVEN…ANOTHER VIEW OF NEVER GONE, NEVER FAR: Through the circle-of-love and love-begetting-love notions we engage directly and/or indirectly with other parents of children on cancer journeys. Through one indirect connection we learned of writings from a piece of work titled, "Healed in Heaven."

"This author describes the death of a child to an experience he had as a young boy, watching fireworks with his mother. He was so awed by the beauty of the fireworks that he unknowingly wandered away from his mother. She spent a desperate 10 minutes trying to find him, shouting and screaming his name, fear tearing her apart. And just as he turned to say, "Mommy, look at that one!" she appeared around the corner. For her, the separation was agonizing; for him, it was as if those 10 minutes simply didn't exist, he was so absorbed in the glory before him."

This is another reason why we are blessed to know God, to know Nicholas is "playing and having fun…" with Jesus. This, to us, is God's speed that we talk about. Thank you, God!
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Wednesday, November 29, 2006 11:48 PM CST
PLEASANT MEMORIES OF A TIME PAST, AND TIMES EXPERIENCED AGAIN

WARRIORS...Once again, the Nicholas Colby Fund is sending patients to a Golden State Warriors basketball game. Tonight, we delivered tickets to Stanford-Lucile Packard Children's Hospital (LPCH) for this coming Saturday night's game. Four families will be guests of the Nicholas Colby Fund in a private suite for a great time out. A social worker said this experience would be a "huge shinning light" for one of the little boys.

THUNDER...Remember how incredibly wonderful the Warriors' mascot, Thunder, was with Nicholas? Well, we arranged for Thunder to pay a special visit to the suite on Saturday night toward "Helping Children Be Children". We are trusting this added touch will further add to smiles for these children and their families. Nicholas thoroughly enjoyed engaging with Thunder; it brought him joy. THANK YOU, Golden State Warriors for your amazing contributions to people-even when no one is looking!

MEMORIES...The pleasant memories tonight started with a ride from my San Francisco office to LPCH to deliver the tickets. Friends were a constant presence in Nicholas' journey and being "there" for Nicholas and mom & dad. So the ride tonight with a friend who played with Nicholas in the hospital and at our home, enabled reflections on the fun and funny experiences Nicholas had.

And the memories continued at the hospital tonight when the greeting by the nurses and medical team was more a loving welcome! We reflected on the joy and great engagement Nicholas had with them...we smiled, laughed, cried, and smiled. Nicholas, YOU ARE ABSOLUTELY WONDERFUL!
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Tuesday, November

Tuesday, November 28, 2006 11:29 PM CST
GOD'S SPEED
Missing Nicholas, sometimes the "walls seem to close in" and anxiety becomes excruciating. As we focus on God and prayers, our tears are always wiped away and we seem to see Nicholas' sparkling eyes, hear his soothing voice, and feel his sensational love. We have always relied on God during Nicholas' journey and there really were many blessings along the way.

Because God is God we absolutely trust that He does not have bad days so His work has to be perfect. We still hurt so much…and thankfully we have God's constant love working in our lives trusting that His perfect work will have us seeing and being with Nicholas. Oh how soothing it is to call out to God, just hearing His name rhythmically strikes our vocal cords, hearts, and souls in a way that leaves us believing and trusting His words to perfectly deliver what He says they will.

Sweet Nicholas, your streets of gold and vibrant rainbows must be fulfilling your eyes, your heart, your soul…and with God's speed you are perfectly at play while mom & dad, your brothers, your family, and your friends will be with you in God's speed.

(Please refer to the July 23, 2006 and July 1, 2006 journal entries under Journal History about our thoughts on God's speed.)

And we are so glad we read to you, "The Next Place" by Warren Hanson, on May 25, 2006 because although we know you heard and felt all the love in the room, the words from the book reinforced God's love for you and His perfect work for you…the next place. We are comforted knowing you heard the following excerpts from "The Next Place" and are experiencing them to be true (on the back of the standing marker):

I'll glide beyond the rainbows. I'll drift above the sky. I'll fly into the wonder, without ever wondering why.

I'll never be alone; I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one. And the circle of our spirits will shine brighter than the sun.

I'll have the love of those who loved me, and the warmth of those who cared…the happiness and memories and magic that we shared. I will cherish all the friendships I was fortunate to find, all the love and all the laughter in the place I leave behind. All these good things will go with me; they will make my spirit glow. And the light will shine forever in the next place that I go.
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Monday, November 27, 2006 11:40 PM CST
NEVER EASY, SOMETIMES HARDER, ALWAYS DIFFERENT, AND…
We continually are thankful for being able to get through the days and nights. With time going by it has never been easy. Sometimes it is excruciating hard. It has always been different in terms of our emotions-like the proverbial roller coaster we talked about during Nicholas' leukemia journey. And constantly we feel love and a sense of calm when we need it most. We have always recognized blessings along Nicholas' journey and even today.

It is not easy to understand the blessings amidst the pain. However, as amazing as Nicholas always has been and as amazing as God is, everything perfect and pure has to be going on for Nicholas so we can hear Nicholas saying, "I'm okay" in the beautiful, playful way that he does. It is absolutely never easy; it is hard. And with Nicholas and with God-spirit and love-we have to be okay.

EARLIER PICTURES OF NICHOLAS
We have been asked about earlier pictures of Nicholas so the first photo album below (a few months before diagnosis), under Links, has been updated to include just about all of the pictures from the video tribute that was played during the Memorial Service / Celebration of Life, and many more. Please click on the first album below and see the joy and love of Nicholas-thank you God!
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Sunday, November 26, 2006 10:09 PM CST
A PARENT'S LOVE
Nicholas looked to us as his parents to love him and to assure him that he would be protected from anything contrary to love…it is not just a role, a responsibility, or a job of parents…it is the love of a parent and what we all unquestionably do! A parent's love is everything to a child. It means the world to a child. Parents are heroes and heroines in the eyes of a child…

It is so easy to talk with Nicholas and to talk with God through prayer. And it is so hard not to be EVERYTHING that your child needs. Honestly, it is so hard; and we trust and believe God's love as our Father that because He is omnipotent, He is omnipresent, and He is omniscience He is not just unquestionably loving Nicholas-He is wonderfully providing and delivering EVERYTHING to Nicholas. Smile sweetie, Jesus loves you and our Father, God, is loving you. You completely see this now and it is everything that you need. We are so thankful that you are not in need or want of anything because love is EVERYTHING and you have all the love from your parents, from Jesus, and from our Father-God. You know this and for us, as we talk to you and pray it helps us to just know…

SOMETHING HAS TO CHANGE IN THE WORLD
Sweetie, Nicholas, we know the world needs to change regarding all of these beautiful children having to experience things like leukemia. And we know that loving God and loving our children is the start of EVERYTHING wonderful and great. A little boy yesterday told me that he wished he could have met you because his parents told him so many wonderful things about you. This little boy, well 10-year old boy, said he saw for himself that you are wonderful because he reads your story and sees your love through your website.

Nicholas, after this little boy said he wished he could meet you, he asked me if I knew that he was related to me and to you. As I looked at him, this little boy said we are all related. And I knew that through this little boy and his thinking that the world could change if we all just listened and loved. Nicholas, you, son, have been changing the world in amazing ways with your smile, your caring nature, your energy, your strength, your love...

The notion of changing the world is also through the loving actions of the Nicholas Colby Fund, "Helping Children Be Children". Nicholas described things that were wonderful and great as: sweet; tight; cool… Out of the mouths of babes! Nicholas, you are amazingly sweet, tight, and cool in every way imaginable.

HOW WE ARE DOING TODAY
The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (4)

6) Pain in our hearts, stomachs… (8)

NOTE: The August 5, 2006 journal provides foundational information about these scales.
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Saturday, November 25, 2006 11:59 PM CST
IT'S A SMALL WORLD AFTER ALL…
SOMETHING SAID. This morning Nicholas' teacher, Ms. Shirley, met us at his site because today was 6 months since Nicholas has passed. Something she said while dad was playing at the site reminded us of the song from Disneyland (of course, Nicholas loved Disneyland), "It's A Small World After All." What she said was, "It is wonderful to think of you and your feet on the "globe" with Nicholas behind you. A father with the spirit of his son frolicking around having fun on the sacred ground of Nicholas and others, lightly interacting with the spirits of others as well."

SOMETHING EXPERIENCED. As dad helped Ms. Shirley move this morning there was another notion of "It's A Small World After All." Taking boxes into an elevator, off steps a familiar face…she looked at me and I looked at her. And we both said, Oh, hi!" It was one of Nicholas' nurses from Children's Hospital Oakland. What a wonderful moment: Nicholas' amazing, caring teacher and one of his amazing, caring nurses…same time and same place…you can probably imagine the wonderful stories to be shared about Nicholas from school days to his hospital stays.

SOMETHING DONE. Remember we talked about the Willow Tree sculptures (November 22, 2006 journal)? Today there was a heart-touching moment as dad walked unto Nicholas' spot and next to the little boy and angelic woman sculptures…was a Willow Tree "Heart of Gold" sculpture of a man holding a golden heart with his two hands and the golden heart next to his heart. We do not know who placed the sculpture at Nicholas' spot-we trust you feel our heartfelt thank you! You helped to create warm, wonderful moments of Nicholas and reflections of our everlasting love / connection.

SOMETHING FELT. Other people visited Nicholas' spot today, and we suspect some did virtually. Thank you all so very much! What seems to continue is the celebration of Nicholas' life blended with heart & soul warming, touching reflections of love and all that love is, all that love can do, and all that love does. Again, thank you for helping Nicholas' story to continue…

NOTES:
1) See three pictures of Nicholas playing and having fun…by clicking on View Photos on this site.

2) Because we received a few inquiries about seeing the new standing marker stated in the November 21, 2006 journal, to view the marker and the poignant wording on the front and the back please click on the third album below under Links and scroll to November 21, 2006.
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Friday, November 24, 2006 11:59 PM CST
TOMORROW WILL BE 6 MONTHS SINCE NICHOLAS TRANSCENDED TO HEAVEN
The photo above on this Home Page and the three photos seen by clicking on View Photos (above) show Nicholas…playing and having fun… Nicholas' love is soothing and wonderful even with nature, snorkeling in Hawaii, basketball at home, and swinging at home. While tomorrow will be 6 months since Nicholas transcended to Heaven, we are so grateful that Nicholas always asked, "Do you want a piece of me?" Because there are pieces of Nicholas everywhere, along with everything about Nicholas that is never gone, never far…

Following is a message from one of Nicholas' nurses:
…Satchel will be 1-years old tomorrow, November 25, 2006, which is Nicholas' 6th month date in Heaven. Nicholas and Satchel's picture remains on our refrigerator (remember the picture of Nicholas holding baby Satchel wearing the red/white striped shirt-picture taken on 2/6/06 and in the third album below). Jarrett (a couple years older than Satchel) often looks up and says, "There's Nicholas; there's Nicholas' mom!" And I say yep, and where is he now? And he says, "With Jesus." It is nice to know that my son knows who your son is, even if it is only by picture, because I feel like it's a connection for me, his legacy lives on.
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Thursday, November 23, 2006 11:59 PM CST
PLEASE CLICK ON "VIEW PHOTOS" ABOVE-THANKSGIVING MESSAGES
Remember, Nicholas called turkeys the "big chickens." Please click on View Photos, above, to see the second and third of the 3 pictures readily accessible to view without leaving this website: The "big chickens" and one of Nicholas' turkeys that he created that is with a message to the staff at Children's Hospital Oakland and Stanford-Lucile Packard Children's Hospital & a separate message to the parents of children that Thanksgiving dinner was provided to via the Nicholas Colby Fund.

THANKS…Thanksgiving Day meant a time each of us, going around the table, would state what we were thankful for. Today was our first Thanksgiving out of a hospital in the last three years and although we did not go around the table stating what we are thankful for, there were constant reflections and memories of Nicholas shared-and Nicholas, is, what we are thankful for!

Like we trust God is fulfilling Nicholas completely and perfectly…we trust the sweet, gentle, loving character and spirit of Nicholas is so recognized & realized that Nicholas completely knows & feels thanks / love for him perfectly fulfilling our hearts through God. And we trust Nicholas feels the thanks from the parents at CHO & LPCH for the Thanksgiving dinners and more importantly the appreciation from the parents and staff for his amazing spirit, inspiration, and love that is everywhere.

We often talk about Nicholas' love…today seeing and feeling the appreciation from parents of children in the oncology wards where Nicholas roamed (remember, Nicholas found ways to be joyful in the hospital) and talking with the nurses that Nicholas loved, demonstrated to us that his love truly does vibrantly live on through the people & places he touched and continues to touch.

Thank you, God, for Nicholas! Thank you CHO & LPCH (and The Children's Hospital-Denver) for the way you were and are with Nicholas. Thank you, all of you (family, friends, and new friends that continue today because of Nicholas), for extending your friendship and love. Nicholas was blessed to have you all in his life (and so were / are we). The following saying is so right for Nicholas: Some people only dream of angels, we held one, hold one, and are blessed to have one in our life-Nicholas.
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Wednesday, November 22, 2006 11:59 PM CST
***Please click on View Photos, above, to see three new pictures***

HAPPY THANKSGIVING! WE PRAY FOR HEALING, COMFORT, & INSPIRATION "FOR ALL"

TOMORROW, THANKSGIVING DAY, THE NICHOLAS COLBY FUND HELPING PARENTS TOO
Tomorrow, through the Nicholas Colby fund, we will deliver Thanksgiving Day dinner to parents on the Oncology floors of Children's Hospital Oakland and Stanford-Lucile Packard Children's Hospital (LPCH). During Nicholas' leukemia journey we were in both hospitals, respectively, the last two Thanksgiving Days. As parents we know the feeling…and we know Nicholas was a constant presence of giving through love everyday of his life and everyday his amazing spirit continues to live. So the Nicholas Colby Fund is helping parents too, along with "Helping Children Be Children".

Remember, we have talked over and over about love begetting love. For LPCH tomorrow, the California Café - Palo Alto is partnering with the Nicholas Colby Fund to provide Thanksgiving Day dinner. Thank you California Café!

A "THANK YOU" TO NICHOLAS AT OAKMONT MEMORIAL PARK
This afternoon at Nicholas' site his teacher, Ms. Shirley, surprised me as I was sitting on the bench listening to the ringing sounds of the wind chime and blowing of the wind in my ears. She brought a Willow Tree angel, woman holding a metal bar in the shape of a circle with the words, "Thank You," encircled. Ms. Shirley said the "Thank You" to Nicholas was…"Nicholas, for being you!"

You may remember on August 24, 2006, Ms. Shirley left a Willow Tree "Hope" sculpture of a little boy holding a metal bar that extended up like a balloon and curved into a circle with the word, "Hope," encircled. And for Sheila's birthday one of our son's gave Sheila a mother / son Willow Tree sculpture revealing the interpretation of "Treasuring a Rare, Quiet and Tender Moment of Motherhood" with a son.

THANK YOU
Sometimes, moments of thought and prayer or reflecting on the kindness all of you have directly and indirectly provided are reminders, to us, of blessings received over and over again. As Thanksgiving arrives, we thank all of you for being blessings in our lives…telephone calls, letters / cards, books, emails, guestbook entries, and love delivered in so many ways let us know that we are blessed with your friendship.

With unbearable sadness missing Nicholas, there are so many moments of joy and amazing sounds of Nicholas, his life, and his love that fills us. And we are thankful, son, for you-never gone, never far, in our hearts & souls you are. Remember what we talked about, we just know…

***Two of the 3 new photos stated above***
FRONT OF THE UPRIGHT-MARKER ILLUMINATES LOVE IN A BEAUTIFUL WAY (See how it is written by clicking on View Photos):

"The sun will no longer be your light during the day nor will the brightness of the moon be your light, because the Lord will be your light forever."

- Isaiah 60:19

BACK OF THE UPRIGHT-MARKER IS HEAVENLY TO US (See what is written by clicking on View Photos. Also, please see the May 26, 2006 journal for the importance of these words and the book, to us and the connection with Nicholas):

I'll glide beyond the rainbows. I'll drift above the sky. I'll fly into the wonder, without ever wondering why.

I'll never be alone; I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one. And the circle of our spirits will shine brighter than the sun.

I'll have the love of those who loved me, and the warmth of those who cared…the happiness and memories and magic that we shared. I will cherish all the friendships I was fortunate to find, all the love and all the laughter in the place I leave behind. All these good things will go with me; they will make my spirit glow. And the light will shine forever in the next place that I go.

- excerpts from Warren Hanson
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Tuesday, November 21, 2006 11:18 PM CST
TEARS…AND NICHOLAS' UPRIGHT MEMORIAL MARKER
(Please click on View Photos, above, to see three pictures.)
Today, tonight, our feelings seemed to be sheltered and unable to be expressed. We recognize the successive holidays are upon us; however, with all of our boys the life we lived seemed to be a constant holiday: enjoying and / or celebrating our separate and collective lives seemingly daily.

Today and tonight, there was pain, there was sadness, there were tears…and we know that we are not the only ones impacted by the loss of a precious angel-for us it is our beautiful, amazing Nicholas. We feel God's presence and love…and there are still tears. We continue to trust and believe…and there are still tears. We love our other three boys so much…and there are still tears.

TO NICHOLAS: We love you, Nicholas! Our tears are of love and life that you sustain through God…and tears of joyful-thankfulness for all that you continue to mean to us as your mom & dad, as your parents, as your brothers, as a family, all who have come to know the beautiful spirit & precious gift that you are through God.

As two years (November 19) just passed from the time Nicholas was diagnosed and as six months (November 25) approaches from the time Nicholas passed, it truly does not get easier…it gets different (as expressed through a new friend). The sun rises, the moon sets, and we want love to fully take over our lives so we could freely live. At the same time there is some trepidation of love taking over our lives because we need Nicholas always in our lives. For us, it gets back to trusting and believing God to deliver…

FRONT OF THE UPRIGHT-MARKER ILLUMINATES LOVE IN A BEAUTIFUL WAY (See how it is written by clicking on View Photos):

"The sun will no longer be your light during the day nor will the brightness of the moon be your light, because the Lord will be your light forever."

- Isaiah 60:19

BACK OF THE UPRIGHT-MARKER IS HEAVENLY TO US (See what is written by clicking on View Photos. Also, please see the May 26, 2006 journal for the importance of these words and the book, to us and the connection with Nicholas):

I'll glide beyond the rainbows. I'll drift above the sky. I'll fly into the wonder, without ever wondering why.

I'll never be alone; I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one. And the circle of our spirits will shine brighter than the sun.

I'll have the love of those who loved me, and the warmth of those who cared…the happiness and memories and magic that we shared. I will cherish all the friendships I was fortunate to find, all the love and all the laughter in the place I leave behind. All these good things will go with me; they will make my spirit glow. And the light will shine forever in the next place that I go.

- excerpts from Warren Hanson
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Monday, November 20, 2006 11:38 PM CST
THERE IS SO MUCH TO LIFE (family, friends, & others) AND THERE IS SO MUCH TO LOVING NICHOLAS…THE BLEND THROUGH CONTINUING THESE JOURNALS HELPS US IN WAYS SIMILAR TO NICHOLAS' LEGACY CONTINUING TO HELP OTHERS…CARING & SHARING
Flocks of sparrows flying above the grounds at Oakmont Memorial Park, soaring and swooping down to / from bouquets of flowers, provided nice thoughts about God's love. It was a cool, calm morning at Nicholas' site as the ground-keeping staff prepared to install the upright-memorial marker. (It will be installed tomorrow and many of you will remember the words on the back of the marker and the passage on the front of the marker-PICTURES TOMORROW.)

The calm and the sparrows reminded us, again, of the song-His Eye Is On The Sparrow (talked about in the following journals: January 10, 2006; December 16, 2005; and December 3, 2005). As times goes on we continue to pray for help to keep our eyes on God. Thinking about His Eye Is On The Sparrow was calming today and left us feeling a soothing sense of peace. We know there is so much to life beyond ours; however, Nicholas seems to be an amazing gift for everyone and our other three boys (young men) lovingly share their brotherly treasure.
Sunday, November 19, 2006 8:52 PM CST
DURING NICHOLAS JOURNEY WE TALKED ABOUT WHAT WE "WERE" THANKFUL FOR, TODAY WE TALK ABOUT WHAT WE "ARE" THANKFUL FOR
Two years ago today, during this time of the day, we were at Children's Hospital Oakland awaiting results from lab work to provide some insight into Nicholas' sore wrist (more information about November 19,2004 in last night's journal). The Home Page picture above was taken about two weeks before the November 19, 2004 leukemia diagnosis; and the first picture of three after clicking on View Photos, above, was taken a about two weeks after the diagnosis.

Along with Thanksgiving and the "big chickens," as Nicholas would say, comes a time for deeper family and friends togetherness, joyful sounds, and sweet smells in the air. It is a time of hope…hope for the tender, loving expressions of family, friends, and new friends. A time of hope of the following Christmas time of year and its spirit delivering on wishes and prayers.

Most of all, Thanksgiving brings "thanks" for yesterday, today, and tomorrow. For yesterday because God was before us, behind us, and within us…for today because God is fulfilling us even amidst the hurt and pain…for tomorrow because God is God and we are so thankful that we do not have to ask God to be God-He is so we are loved, we are and will be cared for, we are and will be guided, protected, and fulfilled in ways we just cannot imagine. And we are thankful knowing that God loves Nicholas, God loves us, and His love means life in ways we cannot imagine. So we trust and believe that Nicholas will tell us-in God's speed-how great God has been to him…transcending what we trusted and believed in, into the greatest reality of all. And about those wishes and prayers, we trust and believe that the reality of God is all...

HOW WE ARE DOING TODAY
The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (4)

6) Pain in our hearts, stomachs… (4)

NOTE: The August 5, 2006 journal provides foundational information about these scales.
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Saturday, November 18, 2006 11:59 PM CST
TWO YEARS AGO TOMORROW (Sunday)
Tomorrow, November 19, 2006, is the two-year mark since Nicholas was diagnosed with leukemia. Our beautiful son, brother, grandson, nephew, cousin, friend, and angel is the same amazing spirit today as he always has been and will be. Of course Nicholas is so much more than a picture, however, feeling the constant love radiating from him can be seen in pictures posted on this site tonight-a glimpse of Nicholas two weeks before the diagnosis and two weeks after the diagnosis:

- The Home Page picture above was taken two weeks before the diagnosis
- Click on View Photos above for the picture taken two weeks after the diagnosis

HOW THE JOURNEY BEGAN

November 17, 2004:
Nicholas and dad were at a Golden State Warriors basketball game (Nicholas mostly enjoyed their mascot, Thunder, and the acrobatics Thunder and his acrobats performed throughout the game). That night at home Nicholas said his wrist was sore, although there were no physical signs of injury at all.

November 18, 2004:
Nicholas' Montessori school was asked to pay extra attention to his wrist although there were no physical signs of injury.

November 19, 2004:
Mom scheduled an appointment with our pediatrician to check out Nicholas' wrist. It was late in the day on this Friday so after examining and not finding any reason for Nicholas' complaint of soreness, our pediatrician directed us to the emergency room at Children's Hospital in Oakland for a series of blood tests.

We decided that we would go to Fenton's Ice Creamery, for a tasty start to our weekend, after the emergency room visit. While the blood lab work was being completed, mom and dad were playing and reading with/to Nicholas. (Nicholas and mom love to read.)

A couple of hours later we were DEVASTATED by the lab results revealing that Nicholas had leukemia. He had 88,000 white blood cells (normal for Nicholas would have been 5-10,000.)

HOW NICHOLAS' RAYS OF SUNSHINE CAME THROUGH EVEN DURING THAT DEVASTATING MOMENT ON NOVEMBER 19, 2004:
As mom and dad cling to Nicholas and with every emotion swirling, all attempts of focus gave way to crying for mom, and dad tightly holding mom and Nicholas. Nicholas reaches to mom, touches her, and says "Don't worry about me, I'll be alright." Nicholas was then admitted into Children's Hospital in Oakland and the leukemia journey began.

HOW NICHOLAS' RAYS OF SUNSHINE CARRIED THROUGH TO MAY 25, 2006
…with caring, loving, sharing, giving, praying, crying, playing, laughing (getting his smile back-please see the note below).

Remember when he would say, "I want my life back; I want my happiness!" (November 20, 2005 journal), or "I don't have my smile back." Here too, Love did provide for Nicholas and we remember after Nicholas talked about wanting his smile, his wonderful smile was lovingly revealed that day (December 2, 2005 journal and December 2, 2005 pictures of Nicholas at home sailing down the play structure's slide, on the 3rd album below under Links). And once again Nicholas brightened our day…God provided for Nicholas and for us.

…being loved by God and all of us so, so very much.

HOW NICHOLAS' RAYS OF SUNSHINE LIGHTS OUR WAY TO HIS RAINBOW…TO HEAVEN
Because Nicholas was loved he "lived" everyday of his life. Even when he was not feeling well at all with all the medical things going on, Nicholas had love because of God. You may remember that Nicholas enjoyed drawing and painting rainbows. Some of his rainbows had pots of gold underneath (like the one scanned onto the "Program" for the June 2, 2006 celebration of life).

We can see Nicholas now, walking streets of gold and standing tall & whole, because of God…so Nicholas' amazing story continues. Our angel Nicholas...we don't have to see you, to know that you are here!
________________________________________
Friday, November 17, 2006 10:35 PM CST
TIME, HOLIDAYS, AND MEMORIES…GOD IS GOD SO WE BELIEVE
While we know time will continue to pass and holidays will come & go, we are so thankful Nicholas continues to fill our hearts and guide our souls. As Nicholas' biggest brother said during his eulogy (captured in the June 3, 2006 journal, under Journal History), Nicholas was a fast kid so he made it to the sunshine and to heaven ahead of us. Although Nicholas' passing was not long ago, and seems so long ago, life continues to form lasting memories day-by-day. The lasting memories are shaped with Nicholas' love and our family's love…because of God's love.

So while Nicholas is in heaven ahead of us, through God he is still with us and our other boys (young men), lighting up our lives for a better path to him and Him. Remember the white doves released during Nicholas' service? Because we trust and believe…with God Nicholas is our inspiration of love and peace. The song, If You Could See Me Now, captured in the July 31, 2006 journal provides a comforting view of peace. Specifically, the words: "If you could see me now…You wouldn't want me, To ever leave this perfect place…"

Following is a poem about "this perfect place" and this place where we are now:

My Son Lives in Paradise

The dust has settled on the things
That I have stored away
A favorite toy, for little boy
A jar of dried out clay.

A photograph when you were young
Sits quietly on the shelf
Thoughts of you come drifting back
I just can't help myself.

A drawing that you made for me
When you were very small
Is framed within this heart of mine
And hangs upon the wall.

A scrapbook lies within the room
Where you once laid your head
Your favorite book, a model car
The pillow on your bed.

I miss you coming in from school
"Hey mom, it's me, I'm home"
I miss the little words and hugs
The special times we've known.

A part of me just disappeared
The day you went away
An empty space now fills my heart
There are no words to say.

A closet filled with memories
Of happy days gone by
A baseball cap and souvenir
Why did you have to die?

The trophies that you won at school
Stand proudly on display
Your many friends can't understand
Why God called you away.

I hear your voice within the halls
It echoes in the night
I see you in the evening mist
And in the morning light.

So many things you left behind
Are now a memory
But little arms that held me tight
Will always stay with me.

An empty space now fills my heart
My boy, my child, my son
You've gone into another world
Where golden dreams are spun.

I do not know the answers
It's not for me to know
But I will know the truth one day
Just why you had to go.

My turn will come to leave this world
I'll gaze into your eyes
God's perfect plan will be revealed
Up there in paradise.

Author/Written By:
Marilyn Ferguson
©2005
Thursday, November 16, 2006 11:59 PM CST
NICHOLAS, THE THINGS WE DID…
Remember the song, Never Gone, that is on the Video Tribute? (You can hear the song via the Nicholas Colby Fund site by accessing www.nicholascolbyfund.org, clicking Sound Tracks, and selecting song #6 on The Loving Tribute to Nicholas. And the words of the song are on the July 27, 2006 journal, under Journal History on this site above.)

The beginning of the song starts out: "The things we did, The things we said,
Keep coming back to me and make me smile again…"

We think about the things we did with Nicholas: simple family fun everyday and everyday activities from school, work, play…helping us cook and clean...holidays (Valentine's Day, Easter & Easter egg coloring and hunting, Mother's Day, Father's Day, 4th of July & fireworks, Halloween & trick or treating/costumes year round, Thanksgiving & "the big chickens," Christmas, New Years...) with family and friends…playing with family and friends…VANCOUVER (2002) and MONTREAL (2003, he thoroughly enjoyed the Biodome) in CANADA…Disney on Ice…going to the movies and having popcorn…swimming and diving in the pool at home… Disneyland (2003)…Children's Fairyland…Sea World…Marine World…playing basketball, baseball, football, swashbuckling, wrestling, board games, card games…going to basketball games (high school-to watch his brothers, college-to watch his brother, professional-Warriors)…going to professional baseball games-Giants…going to professional football games-49ers…tumbling and high-wire flying at My Gym…San Diego, Oakland, and San Francisco Zoos...rock climbing in San Diego…Monterey Bay Aquarium…State Capitol-Sacramento…swimming, snorkeling, and Luau in HAWAII (May 2004)…going to the gym with Joey while the moms worked out…San Francisco shopping and Pier 39 adventures…parks inland and at the coast…watching movies-comedies and animated…watching Disney TV shows-like "That's So Raven"…live plays-Snow White, Lion King…picnics...flying kites...shopping...relaxing...sleeping...waking up together...swimming with dolphins in HAWAII (December 2005)…driving his battery-powered Jeep…walks on the bike trail at home and at the reservoir…playing on his play structure (swinging, soaring down the slide, observing and drinking hot chocolate from the observation deck up high)…cozily bundled up by the backyard fireplace roasting marshmallows…playing in the snow in MINNESOTA (2006)…The United States Mint in DENVER (2006)…fun on the many airplane trips as well as car trips…and he was so happy playing with babies, kids of all ages, and adults of all ages…

As we further think about the song, Never Gone, we think about this verse as well: "I walk alone these empty streets, There is not a second you're not here with me, The love you gave, the grace you've shown, Will always give me strength and be my cornerstone…"

Oh, how these and so many other simple pleasures are our "treasures."
________________________________________
Wednesday, November 15, 2006 11:59 PM CST
FRIENDS REPRESENTING ALL OF YOU
Tonight's fundraiser at Games Unlimited in Danville for the Nicholas Colby Fund, "Helping Children Be Children", was amazing! Friends came from Nicholas' school, our work, our church, and from all aspects of our lives. Friends came from as far away as San Jose, San Francisco, and Vacaville. There were friends we see regularly and friends we have not seen in over a year. We recognize that "amazing" is a word we often used to describe Nicholas…and tonight it feels so right to use it describing the fundraiser because it was amazing to experience friends sharing love for Nicholas in a way of "Helping Children Be Children" by lovingly doing some of their holiday shopping at Games Unlimited.

Their shopping is about love for their loved ones that will be receiving the gifts purchased, about love because 10 percent of their purchases went to the Nicholas Colby Fund, about love because the Nicholas Colby Fund is Nicholas' legacy of love, and about love because many of the shoppers tonight also did something a little extra. Love begetting love was clearly in action by you and the resulting work of the Nicholas Colby Fund. You are "Helping Children Be Children"!

WHAT WAS THE "LITTLE EXTRA"?
Some shoppers tonight purchased an extra toy and placed it in a big red bin for children who will be in the hospital over the holidays, so they can select a toy that they can give to their siblings. The notion here is: The child in the hospital typically receives a lot of gifts during Christmas and we felt it would be nice for them to feel the joy of giving as well. So they will be able to select a toy purchased that was placed in the big red bin, and give it to their sibling or a loved one.

GAMES UNLIMITED
Partnering with Games Unlimited was wonderfully warm and engaging. The relationship was clearly about people "Helping Children Be Children" and what a blessing to have developed another relationship focused on children.

NICHOLAS
Son, we love you! We can sense you smiling even more tonight. Although you are already perfectly pleased because you are in Heaven. Thank you God!
________________________________________
Tuesday, November 14, 2006 11:59 PM CST
WHAT WE HEARD AND READ AS A CHILD, WE TRUST AND BELIEVE TODAY
"Jesus loves me this I know, for the Bible tells me so…" Nicholas knew God loved him…and now Nicholas knows God loves him as we trust and believe Nicholas is "playing and having fun" in Heaven with Him on high.

We know Nicholas was-and is-everything God wants his children to be: full of love with a caring, sharing, and giving nature that places love above all else. Nicholas, our son, we love you! We smile because you are so amazing. We cry because you are so amazing. We miss you because you are so amazing. We long for you because you are so amazing. And because God is the author of love and life…our smiles are for your angelic ways loving us today, our tears are for missing an angel-you son-that has amazingly brought love and life into a perspective we have never experienced, and longing for you is because we could never, ever get enough of your love although you and your love are never gone, never far, in our hearts & souls you are and where we are together until…because Jesus loves "us."

***Below Is Information Remaining On The Home Page Through Wednesday***

NICHOLAS COLBY GILBERT EVENT NOVEMBER 15, 2006…
AT A PLACE TO BUY WHAT YOU NORMALLY WOULD
The flyer above in the Home Page picture announces a one-day only "after hours" event for Christmas shopping to benefit the Nicholas Colby Fund. This event further helps the Nicholas Colby Fund, "Helping Children Be Children", to create lasting childhood memories by providing exceptional playful opportunities that uplifts the spirit of a child diagnosed with cancer, a degenerating condition, or other life-threatening illness. With awareness and sensitivity the Nicholas Colby Fund delivers amazing experiences for children and their families through trusted acts of love and compassion.

WEDNESDAY, NOVEMBER 15, 2006 FROM 6 - 8:00 PM

Games Unlimited
810 Sycamore Valley Road (West) at the Danville Livery
Danville, CA (a few miles from our home in Lafayette)
925 838-6358

***10 percent of the proceeds will benefit the Nicholas Colby Fund***

"HELPING CHILDREN BE CHILDREN" THE FUND HAS BEEN ACTIVE…
Sending children and their families to the Barnum & Ringling Brothers circus, Harlem Globetrotters basketball game, Golden State Warriors professional basketball games, and Disneyland are some of the experiences being delivered by the Nicholas Colby Fund. An earlier act of love and compassion was providing a modified wheelchair desired by one of all these beautiful children; and now the Fund will also be providing nutritional packs for parents with children in the Pediatric Intensive Care Unit. More experiences and efforts are being developed.

Keeping in the spirit of Nicholas' passion for caring about others, Nicholas' legacy lives on through the Nicholas Colby Fund (a non-profit organization). Thank you for helping us continue this work and share love!

Nicholas Colby Fund
1547 Palos Verdes Mall PMB 260
Walnut Creek, CA 94597-2228
________________________________________
Monday, November 13, 2006 9:55 PM CST
HOW WE ARE FEELING
Sometimes it is very hard to find the words to describe how we are feeling, understanding that it is a roller coaster that we are "now" on. We hurt, we find joy in memories, and we hurt some more missing Nicholas. Last week we talked with a new friend via The Children Hospital-Denver, and she described what she had heard from a friend about explaining how we are all feeling after the passing of "our child." So while we are, absolutely, trusting and loving God what we feel is…"It never gets easier, it gets different."

Relationships on different levels have always been cherished; and now we recognize even more the blessings of caring, sharing, and giving. Thank you Tammy!

MORE PATIENTS OUT HAVING FUN WITH THE NICHOLAS COLBY FUND
Tomorrow night, Tuesday, the Nicholas Colby Fund is sending18 children and their families from Children's Hospital Oakland into a suite to enjoy time out together watching a Golden State Warriors basketball game. PLEASE SEE PHOTO BY CLICKING ON "VIEW PHOTOS"

We remember when Nicholas had restrictions on where he could go because his immune system was suppressed and too low. However, Nicholas wanted to do "normal" things like watching basketball…and as his parents we always worked hard to give Nicholas normal childhood experiences-even if he had experienced those things before his leukemia, which he had, and even though we understood that we were on a "new normal" path. One of the places Nicholas wanted to go was a Warriors basketball game…but with sitting in the midst of over 16,000 fans we would not have been able to control the environment from a contact perspective. That is when attending the game sitting in a suite provided a controlled environment-and all the joy and excitement of being out at the game. Do you remember the journals about Nicholas out having fun and all the pictures from the Warriors games?

***Below Is Information For Monday - Wednesday***

NICHOLAS COLBY GILBERT EVENT NOVEMBER 15, 2006…
AT A PLACE TO BUY WHAT YOU NORMALLY WOULD
The flyer above in the Home Page picture announces a one-day only "after hours" event for Christmas shopping to benefit the Nicholas Colby Fund. This event further helps the Nicholas Colby Fund, "Helping Children Be Children", to create lasting childhood memories by providing exceptional playful opportunities that uplifts the spirit of a child diagnosed with cancer, a degenerating condition, or other life-threatening illness. With awareness and sensitivity the Nicholas Colby Fund delivers amazing experiences for children and their families through trusted acts of love and compassion.

WEDNESDAY, NOVEMBER 15, 2006 FROM 6 - 8:00 PM

Games Unlimited
810 Sycamore Valley Road (West) at the Danville Livery
Danville, CA (a few miles from our home in Lafayette)
925 838-6358

***10 percent of the proceeds will benefit the Nicholas Colby Fund***

"HELPING CHILDREN BE CHILDREN" THE FUND HAS BEEN ACTIVE…
Sending children and their families to the Barnum & Ringling Brothers circus, Harlem Globetrotters basketball game, Golden State Warriors professional basketball games, and Disneyland are some of the experiences being delivered by the Nicholas Colby Fund. An earlier act of love and compassion was providing a modified wheelchair desired by one of all these beautiful children; and now the Fund will also be providing nutritional packs for parents with children in the Pediatric Intensive Care Unit. More experiences and efforts are being developed.

Keeping in the spirit of Nicholas' passion for caring about others, Nicholas' legacy lives on through the Nicholas Colby Fund (a non-profit organization). Thank you for helping us continue this work and share love!

Nicholas Colby Fund
1547 Palos Verdes Mall PMB 260
Walnut Creek, CA 94597-2228
________________________________________
Sunday, November 12, 2006 11:53 PM CST
NICHOLAS COLBY GILBERT EVENT NOVEMBER 15, 2006…
AT A PLACE TO BUY WHAT YOU NORMALLY WOULD
The flyer above in the Home Page picture announces a one-day only "after hours" event for Christmas shopping to benefit the Nicholas Colby Fund. This event further helps the Nicholas Colby Fund, "Helping Children Be Children", to create lasting childhood memories by providing exceptional playful opportunities that uplifts the spirit of a child diagnosed with cancer, a degenerating condition, or an other life-threatening illness. With awareness and sensitivity the Nicholas Colby Fund delivers amazing experiences for children and their families through trusted acts of love and compassion.

WEDNESDAY, NOVEMBER 15, 2006 FROM 6 - 8:00 PM

Games Unlimited
810 Sycamore Valley Road (West) at the Danville Livery
Danville, CA (a few miles from our home in Lafayette)
925 838-6358

***10 percent of the proceeds will benefit the Nicholas Colby Fund***

"HELPING CHILDREN BE CHILDREN" THE FUND HAS BEEN ACTIVE…
Sending children and their families to the Barnum & Ringling Brothers circus, Harlem Globetrotters basketball game, Golden State Warriors professional basketball games, and Disneyland are some of the experiences being delivered by the Nicholas Colby Fund. An earlier act of love and compassion was providing a modified wheelchair desired by one of all these beautiful children; and now the Fund will also be providing nutritional packs for parents with children in the Pediatric Intensive Care Unit. More experiences and efforts are being developed.

Keeping in the spirit of Nicholas' passion for caring about others, Nicholas' legacy lives on through the Nicholas Colby Fund (a non-profit organization). Thank you for helping us continue this work and share love!

Nicholas Colby Fund
1547 Palos Verdes Mall PMB 260
Walnut Creek, CA 94597-2228

***See new photos by clicking on "View Photos"***
________________________________________
Saturday, November 11, 2006 11:59 PM CST
WHAT IS THAT "SAYING" ABOUT RAIN AND SUNSHINE?
It rained this morning, and this afternoon the sun was shinning with distinctive clouds sailing gently in the sky. At Nicholas' site the air was fresh & crisp while the sun felt warm & comfy...the grass appeared soothingly damp creating a glistening affect by the heavenly sunrays and soothing breeze.

We cleaned Nicholas' "marker" (our daily care), lit a candle in his lighthouse that sits next to the "marker," and watched the flames softly sway. Today we brought out his Harlem Globetrotters' basketball tossing it up, over and over, in the air at his site. We listened to the birds chirping and watched them playing in the air and in the trees. As we sat on his bench looking over his site, down in the valley, and over the hills...God brought us peace as we realized more of His care. All these things He daily provides-we trust-are there if and when we choose to let Him guide. God is our guide and through Him Nicholas is our light...shinning in our hearts & souls seemingly letting us know he is more than okay!

The sun, the breeze, the clouds, the birds, and the flame...everything around us seems to be purposeful. God, with Nicholas, is providing pleasures to share as Nicholas seems to say, if you could see me now you would know I am more than okay-I am loved even more, wondering how could that be...

As we left his site, the sun had gone behind the hills; however, its sunrays illuminated some of the clouds creating a distinctive glow...that was nice!

NOTES:
SPECIAL NICHOLAS COLBY FUND EVENT ON WEDNESDAY, NOVEMBER 15, 2006
Tomorrow's journal will include information about a special Nicholas Colby Fund event that will take place Wednesday, November 15, 2006, at Games Unlimited: 810 Sycamore Valley Rd (West) at the Danville Livery in Danville, CA. (925) 838-6358. A few miles from our home in Lafayette.

SURPISE TOY
Someone left a surprise on Nicholas' site this evening, on Veteran's Day. A note, "Happy 'Vet' Day little Nicholas" was written on a Hot Wheels package containing a Corvette Hot Wheel. Thank you!
________________________________________
Friday, November 10, 2006 11:59 PM CST
A WALK IN SPIRIT AND A TALK WITH NICHOLAS
The last couple of days we experienced a more embracing walk with Nicholas…in spirit. It is needed! Holding his hand, looking into his beautiful eyes, and feeling his amazing love we "just know" that our circle of love vibrantly lives on. Nicholas' sweet smile penetrates our hearts today as much as ever. We are so blessed to know and have Nicholas in our lives-we truly hope you feel his touch of gratitude for all that you have been for Nicholas through your love and support. As we have said many times, we are so grateful for your direct and indirect walking with us on this journey of love begetting love.

And the talk with Nicholas today…is real. As we have always trusted God's words to not return to Him void (accomplishing all that God said it would), we trust that because God is God our talk with Nicholas is heavenly heard and "unspokenly" received. We listen for Nicholas' words and as we close our eyes we see an amazing child loving today so much more than we could ever imagine-and he is full of love, joy, and happiness because God's words do not return to Him void. God provides all, for all, who let Him in… And God is encircled around and in Nicholas, there is no greater blessing. And it is God that we need along with Nicholas' everlasting, completely felt love.
________________________________________
Thursday, November 9, 2006 11:59 PM CST
CHILDREN UP CLOSE AND PERSONAL HAVING "A GREAT TIME OUT" TONIGHT...through Nicholas & the Nicholas Colby Fund. Tonight, again, Nicholas was "Helping Children Be Children" as patients from Children's Hospital Oakland were sent to the Golden State Warriors game versus the New Orleans / Oklahoma Hornets (professional basketball). This included front row seats on the floor next to the Hornets' bench for one 16- year old boy, Troy, who will be going out of state next week for a special treatment...tonight Troy was living his passion of basketball. And two other kids with their family seemed to have "A great time out" (part of the Warriors' slogan) with the Warriors and that helps to make us smile.

And what a special send-off gift to Troy, who happens to be a former roommate of Nicholas when Nicholas was at Children's Hospital Oakland for a short few nights stay early in Nicholas' initial treatment.

PRAYING: Please include Troy in your prayers for love to be fully felt and for a successful treatment. And will you pray for his parents to be comforted in love.

PHOTO: You can see Troy by clicking above on View Photos.

LOGO: The Nicholas Colby Fund logo is ready! What do you think of the logo (in the center of the flyer on the Home Page photo above)? Although final details of the logo are being completed, we are so grateful for the amazing creation designed and developed by Albert Treskin and we are so thankful for Virginia Vovchuk who made it possible for Albert to work with us!

There are more fun experiences being developed to share love via the Nicholas Colby Fund...Nicholas' story continues and legacy "lives" on.
________________________________________
Wednesday, November 8, 2006 11:53 PM CST
MORE OF A PERSONAL NOTE TODAY
Sheila has always stated, "it is all about Nicholas" (certainly with us paying relative attention to our older boys because everyone at every age need time for sharing and love). We focused everything about ourselves, with lots of help from many of you, on creating and providing for Nicholas helping him to "live" during the leukemia journey-and Nicholas "lived" life through the ups & downs and roller coaster effect of it all. Remember? Yeh, he had some bad days and amazingly he had the ability to deliver so many smiles.

We have this gift, Nicholas, so naturally our focus on this CaringBridge site and soon as we complete the transition to the NicholasColbyFund site (www.nicholascolbyfund.org) is on Nicholas-his vibrant touch and spirit living on in all of our lives and seemingly yours, too, as part of this circle of love. Nicholas continues to illuminate our lives with his rays of sunshine warming our hearts…his strength, energy, enthusiasm, joy, and endless passion for caring about others is having a beautiful impact today as always.

And the personal note today is from the perspective of sharing the journey as we shared Nicholas' journey along the way…and our journey for Nicholas since May 25, 2006. It is through the lens of Nicholas' sharing that continues to be a help to us and others today.

We shared in a September journal about our positive approach to Nicholas' journey based on our trust and belief in God (September 27, 2006 journal). Now as then we know that we cannot do it ourselves. Today I cried out to our Father, God, for help because songs of love and connections with Nicholas that are always sweet to hear…were bittersweet today. In a business meeting with upfront introductions, participants referenced songs they considered to be their "theme" song. In this meeting today with me as the business sponsor, coincidentally there were several songs and words of songs stated by participants that link to Nicholas.

The song, "If I Could Help Somebody," that was sung during Nicholas' Celebration of Life on June 2, 2006 was sung in the moment by a participant today as his theme song. There were songs about rainbows (Nicholas painted many of these that we are sure you have seen along the journey), songs about sunshine (a constant link to Nicholas on the Home Page), and others that for reasons unknown today…took the bittersweet to an excruciating level. Today the bittersweet took over and I was not able to control it. Today, I cried out for help and a loving hand trusting that God-and Nicholas-are with me and will comfort me.

At the forefront of our focus tonight is constantly welcoming God and Nicholas in all aspects of our lives. It is what we need!
________________________________________
Tuesday, November 7, 2006 11:59 PM CST
IT'S OUR DAY, IT'S YOUR DAY, IT'S ALL OF OUR LIVES, AND NICHOLAS' DAYS & LIFE
The sun rises and sets. The moon lights up what was dark. People smile and laugh. Babies / children warm hearts and bring about sparkles in the eyes of others.

Our days, like your days, we live our lives experiencing beauty from the sun…the sense of ahh from the moon…emotions of life…and the joy babies / children bring about in our life, our world, our reflections, our beliefs, our trust, and hope through God.

A mother, a father, a loved-one…loves. Right? While it is hard to reconcile our thoughts we cannot forget the joy Nicholas brought and brings into our lives every day. And we cannot see anything other than God loving Nicholas and Nicholas loving all of us-as much today as ever.
________________________________________
Monday, November 6, 2006 11:11 PM CST
IT IS JUST SO HARD TO RESOLVE IN OUR MINDS…that Nicholas is physically not with us. We miss Nicholas so, so much and we say physically because we sense Nicholas spiritually and in other dimensions. However, it just hurts not to physically be with him and have him with us. And our trust in God has never, ever wavered…we trust that God is delivering His promises of love to Nicholas-all aspects of love and its attributes and characteristics. So Nicholas is not wanting of anything and has everything perfectly provided for him. We trust and believe…and it is just hard to resolve what we are experiencing.

Nicholas, our love, you are "never gone, never far" in our hearts & souls is where you are…and we are with you, son! The wonders of God deliver for us as well so we are forever connected and provided for together…in His ways and in His speed.
________________________________________
Sunday, November 5, 2006 10:40 PM CST
NICHOLAS COLBY FUND…
The Nicholas Colby Fund logo, website (www.nicholascolbyfund.org), and more activities "Helping Children Be Children" are about to take flight. Many efforts have been underway administratively for the Nicholas Colby Fund and some have been slowed down because it is just very hard emotionally while at the same time emotionally "Helping Children Be Children" is what Nicholas always did (even for himself) and we absolutely love to do.

The order of the three activities above to take flight is 1) more activities starting in about a week (should bring joy to many faces including yours as well as all those beautiful children), 2) the logo and "Thank You" correspondence, and 3) the Nicholas Colby Fund site with full-current content.

HOW WE ARE DOING TODAY
The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (4)

6) Pain in our hearts, stomachs… (4)

NOTE: The August 5, 2006 journal provides foundational information about these scales.
________________________________________
Saturday, November 4, 2006 11:59 PM CST
SOMEDAYS…we just go through the days. We smile some, we cry some, we pray a lot, and we focus on love a lot. We pray trusting God will make a way for us to enjoy life and for others to enjoy life when sometimes there seems to be no way to do so. We pray for others going though difficult times, like a precious friend named Matthew (www.tsern.com). And we pray trusting that it is not just life-threatening situations when prayer provides… Everyday, anytime, anywhere, everything big or small we have seen love provide which is why we trust love to provide… It is not easy, however, trusting and feeling love has mattered.
________________________________________

Friday, November 3, 2006 11:59 PM CST
JUST THE TWO OF US TONIGHT AND…Nicholas was with us in our hearts and so much a part of our feelings as we were alone. Our other boys are young men (23, 19, & 17) and hold Nicholas-who at 6 years of age when he passed on to God just over 5 months ago-as a central person shaping their lives even today.

As our young men continue their journey, since Nicholas was born we envisioned another phase of our journey parenting Nicholas as his brothers shape their lives. Out tonight alone, we realized that soon we will be alone…and as we trust God's love we trust He will continue to bless us with Nicholas' presence and deliver to the two of us a journey of love begetting love. It will not be what we envisioned, however, Nicholas will absolutely remain a central love in our lives, shaping us, and shaping how we are to be for others.

We are so thankful that God delivered the conversations with Nicholas through the years. And conversations we had with Nicholas; and he had them with us. Specifically, we are thankful for conversations about always knowing that no matter if we could not see each other or were apart, we would know-just know-that each of us would ALWAYS be in each other's heart, soul, and feel safe, comforted, & loved.

We feel you son and just know…
________________________________________
Thursday, November 2, 2006 11:51 PM CST
SONGS OR SINGING GENERATE LOVE
In July 2006 one of the journals imparted Nicholas' love for music along with the connection the words or just the music has within each of us. Just hearing songs, especially those that included God or Jesus' name, resonate deep within us generating an amazing sense of God's omnipotence, omniscience, and omnipresence. Songs have always been a significant part of Nicholas' life before he could talk.

Although the pain in our hearts is constant, hearing or singing songs Nicholas enjoyed or songs about God's love amazingly delivers something deep within us that soothes our hearts and souls…if only for a moment.
________________________________________
Wednesday, November 1, 2006 11:59 PM CST
OUT OF THE MOUTHS OF BABES
Today a friend shared a moment experienced last night with her son that generated smiles to us...and we trust a smile from Nicholas as well. Their nightly prayers together sometimes includes a song as the 2 1/2 year old boy occasionally asks, "Mom will you sing 'Jesus Loves Me?'"

So as our friend was singing, "Jesus loves me this I know, for the Bible tells me so..." the boy stopped and told his mom last night, "Jesus loves Nicholas!" The little boy, Robert, has never met Nicholas; however, their family remains with Nicholas and our family under God's amazing circle of love.

TWO YEARS AGO THIS MONTH…AND TODAY
Following Nicholas' journey you know that Nicholas and the Golden State Warriors' (professional basketball team in the Bay Area) circle of love continues as well. Tonight was opening night of the new season and we were there-it was bittersweet. In our seats, where Nicholas played and had fun as well as experienced the first sign of something strange on November 17, 2004 that began his journey on November 19, 2004, we felt Nicholas' love and trust God that Nicholas is feeling and enjoying love unmatched by any joy that anyone could ever feel through experiencing whatever brings joy to hearts and souls.

God, we remain faithful and recognize Your loving guidance as Your love generates and delivers...always. Just like one of the messages on Nicholas' June 2, 2006 "program" celebrating his life, where we say, "Our angel Nicholas, we don't have to see you to know you are here," to our family and friends (of course including the medical staff at all three hospitals), we do not have to see you to know you are here in our hearts warmly blessing us through your love.

Tuesday, October 31, 2006 11:59 PM CST
READING AND BEING READ TO
Tonight at Nicholas' spot...we read one of Nicholas' Halloween books, prayed (well, we always do), and tried to keep our thoughts on the love and the joy love brings. Nicholas enjoys being read to and his interaction with the stories always brought us joy. We can clearly see and hear him saying, "Boo, did I scare you!"

 

It was hard this evening...seeing and hearing kids at play trick or treating. However, this Halloween evening we were sheltered from those moments because Nicholas' grandmother is in the hospital so we spent the evening with her. Sheila went right into the familiar hospital role-she beautifully cared for my mom and together we did several things for my mom the way we cared for Nicholas in the hospital.

Our precious Nicholas…we are so grateful for the joy he brings as we face bittersweet moments of our lives. We feel his touch and need it so, so much.
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Monday, October 30, 2006 11:06 PM CST
"BY HEART," SONG BY JIM BRICKMAN (pianist) AND OCTOBER (Octoberfest and Halloween)
A Jim Brickman Greatest Hits CD was recently received as a gift. Jim Brickman is one of the musical artists on Nicholas' Video Tribute referenced throughout many of the journals since May 25, 2006. And tonight his song, "By Heart," especially touched our hearts as October comes to an end with the changing Fall weather felt, leaves rustling in the wind, daylight savings time meaning it is darker sooner in the evenings as we make our way to Nicholas' Oakmont site, and trick or treat & costumes so prevalent in conversations.

Nicholas enjoyed his costumes. In fact, he would ask us to purchase costumes throughout the year and aside from Halloween he wore them a lot during playtime: clown, baby lion (cub), Spider-man, basketball player, Peter Pan, football player, Ninja, and many others in just six years. Nicholas also created his own costumes...like the time he made a Spy-Kids outfit using his sun glasses, gloves, and transitioning his clothes to complete the gear seen in the Spy-Kids' movies. And yes, he dressed as a magician and a doctor. A couple of years ago he wore three different costumes to Halloween events in the span of about seven days. Recognizing the Halloween events for tomorrow, tonight was much harder than expected. "By Heart" was helpful and listening to the sounds of the piano provided melodies that were soothing. We LOVE you, Nicholas!

BY HEART
Hold me close, baby please
Tell me anything but that you're gonna leave
As I kiss this fallen tear
I promise you I will be here

Until the stars fall from the sky
Until I find the reason why
And darling as the years go by
Until there's no tears left to cry
'Til the angels close my eyes
And even if we're worlds apart
I'll find my way back to you...
By heart

When you go, I'll stop the clock
I won't ever let this moment stop
Time is stealing you from me
But it can never take this memory

Until the stars fall from the sky
Until I find the reason why
And darling as the years go by
Until there's no tears left to cry
'Til the angels close my eyes
And even if we're worlds apart
I'll find my way back to you...
By heart.

NOTE: In the September 13, 2006 we list the Video Tribute songs and respective artists. On the Video Tribute Jim Brickman plays the song, "Beautiful," with Wayne Brady. And in the September 23, 2006 journal are some very special reflections of Nicholas coupled with words to "Beautiful."

You can hear this song by accessing www.nicholascolbyfund.org, clicking Sound Tracks, going to "Loving Tribute To Nicholas," and selecting song number 5-"Beautiful."
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Sunday, October 29, 2006 11:59 PM CST
HOW WE ARE DOING TODAY
The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (4)

6) Pain in our hearts, stomachs… (6)

NOTE: The August 5, 2006 journal provides foundational information about these scales.
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Saturday, October 28, 2006 11:59 PM CST
BITTERSWEET MOMENTS
This evening we went to watch our niece play volleyball (she is a freshman at UC Riverside and they were playing at UC Davis). Several family members were there and there was talk about Nicholas. It was bittersweet to recall that Nicholas was at UC Davis a few years ago in the same Pavilion we were in tonight…just about 50 feet to our left…as we were there to watch our oldest son playing basketball for UC Santa Cruz against UC Davis. Today, like last weekend even though we were many miles away from home, a piece of Nicholas was there to greet us. So once again, more blessings revealing that "Never gone, never far…" is real.

Tonight another niece was talking about Hawaii and we talked about our trips to Hawaii. Another bittersweet memory was felt as mom talked about a couple of days before Nicholas passed away. This was when Nicholas told us that he wanted to go to Heaven! Knowing that Nicholas loves Hawaii and Disneyland (two of his favorite places), mom's words to Nicholas were that Heaven could be like Hawaii or Disneyland; Heaven can be just what you want it to be. Nicholas did not reply or show any emotion and there did not have to be. He made a statement, mom acknowledged and made a statement, and we feel that God was there as always providing love without words, love without the need for anything except knowing that love was there. We are so grateful for God's loving ways providing for us in advance…knowing what we would need and when we would need it. This evening and tonight, like other moments since May 25, 2006, we were blessed able to feel love from a time before that we shared.

Thinking about the couple of days after Nicholas said he wanted to go to Heaven and love in action…following are excerpts from those journals:

Excerpts from May 23, 2006
NICHOLAS AND BABIES
You know Nicholas and babies...this morning in the clinic it was like experiencing two stars shinning and sparkling as Nicholas and Ethan (a 6-month old undergoing treatment) played in Nicholas' room. They seemed to bring out more than joy in each other as their play generated the sensation of "ahh" in the hearts of the staff and others.

VISIT TO THE U.S. MINT-DENVER
Thanks to a relationship the founders of Brent's Place has with the U.S. Mint-Denver, Nicholas really enjoyed a private tour of the Mint today. The United States Mint police, from the Chief to the to the officer greeting us at the entrance treated Nicholas as the prince he is (although Nicholas tells us he is the king when there are certain things being requested). You have read and seen that Nicholas loves collecting (and sharing) money so this tour illuminated his heart creating joy for all around him. We could not have asked for the experience to be any different or better and the Chief contributed significantly to the overall experience-amazing people doing amazing things even when there is no public forum. Nicholas, and mom & dad, had a great time!

Excerpt from May 22, 2006
PLAYING AND HAVING FUN
Nicholas had a quiet day at the clinic and a fun, engaging evening at the "Foundation House" at Brent's Place. He was playing, eating (better than he has in several weeks), and sociable the way we all remember Nicholas to be.

Excerpt from May 21, 2006
WHAT NICHOLAS SAID IN THE MIDDLE OF THE NIGHT (Saturday/Sunday)
"Mom, you do a good job being a mama-there is no doubt about it!"
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Friday, October 27, 2006 11:59 PM CDT
A SURPRISE TELEPHONE CALL
In yesterday's journal we simply stated how the days are (good, bad, good/bad); and we recognize God's love everyday. You know, we are so thankful for God's love that is always with us and recognize that with His love we were able to be the parents we were and continue to be for Nicholas as well as our other boys. Yes, it is so hard being without Nicholas AND there is something (hard to explain this) that provides a level of assurance that Nicholas is "playing and having fun" surrounded by love, peace, and joy. It is God's constant presence in our lives, in Nicholas' life, that just lets us know…

This afternoon we received a telephone message from Nicholas' doctor, Dr. Gore, from The Children's Hospital-Denver. We did not get the message until this evening so we will talk with her next week. Again and again there are beautiful surprises of love begetting love and surprises revealing the beautiful circle of love that surrounds all of us. Through continued relationships with Nicholas' nurses and doctors, including dinner with Nicholas' bone-marrow-transplant doctor, Dr. Agarwal, and the conversations with the staff in Denver, Nicholas is blessed and we are so grateful for the blessings God provides throughout all aspects of our day & nights (even though our days are good, bad, good/bad).
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Thursday, October 26, 2006 11:47 PM CDT
SIMPLY STATED
Nicholas always said and understood, "I know that God loves me…" We, too, know that God loves Nicholas and us as well. And-simply stated-our days along the journey and since May 25, 2006 have been bad, good, good/bad.
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Wednesday, October 25, 2006 11:59 PM CDT
ON THE 5th MONTH
5 white roses greeted us at our door this morning & at Nicholas' spot this evening, a periwinkle-evening sky, a crescent moon, stars gleaming brighter & brighter as dusk turned to darkness, and Nicholas seen in our thoughts & felt on our faces from a soothing breeze this evening...created a backdrop for two songs shining light on our hearts and souls:

"FOR GOOD" performed by Idina Menzel & Kristen Chenoweth
(This is the first song on the Video Tribute played during the Memorial Service. The song can be heard by accessing the Nicholas Colby Fund site, www.nicholascolbyfund.org, clicking on Sound Tracks and then selecting the song "For Good" from "A Loving Tribute to Nicholas")

Following are the words of the song, but first the song comes from a musical, "Wicked," that is a prequel to the "Wizard of Oz." Elphaba and Glinda sing:

ELPHABA
I'm limited,
Just look at me - I'm limited
And just look at you - You can do all I couldn't do, Glinda
So now it's up to you
For both of us
Now it's up to you

GLINDA
I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good

ELPHABA
It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend
Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I've been changed for the better?
But because I knew you

GLINDA
Because I knew you:

BOTH, ELPHABA AND GLINDA
I have been changed for good

ELPHABA
And just to clear the air
I ask forgiveness
For the things I've done you blame me for

GLINDA
But then, I guess we know
There's blame to share

BOTH, ELPHABA AND GLINDA
And none of it seems to matter anymore

BOTH, ELPHABA AND GLINDA
Like a comet pulled Like a ship blown
From orbit as it Off it's mooring
Passes a sun, like By a wind off the
A stream that meets Sea, like a seed
A boulder, half-way Dropped by a
Through the wood Bird in the wood

BOTH, ELPHABA AND GLINDA
Who can say if I've been changed for the better?
I do believe I have been changed for the better?

GLINDA
And because I knew you

ELPHABA
Because I knew you

BOTH, ELPHABA AND GLINDA
Because I knew you
I have been changed for good.

 

"BEAUTIFUL SURPRISE" by India Arie
(We talked about in the November 3, 2005 and March 2, 2006 journals)

It's like yesterday, I didn't even know your name
Now today, You're always on my mind
I never could have predicted that I feel this way
You are beautiful surprise

Whatever it is you came to teach me
I am here to learn it cause
I believe that we are written in the stars
I don't know what the future holds
But I'm living in the moment
And I'm thankful for the man that you are, you are, you are

You are everything I ask for in my prayers
So I know my angels brought you to my life
Your energy is healing to my soul
You are a beautiful surprise
You are an inspiration to my life
You are the reason why I smile
You are a beautiful surprise

As we sat, prayed, and listened to the sounds around us: the gentle breeze, children's voices from far away, a dog's bark in the distance, a cow's "moo" from the hills beyond the valley, a bird's chirp, a galloping deer, a plane's "hum"...life was living. And our other three boys, family, friends, and all these beautiful kids are present in our lives. As much as we "just know..." and feel God's presence, it is so hard to live life without Nicholas, physically. And life continues around us and within us-so on the 5th month since May 25, 2006...loving God and Nicholas is forever part of our lives and because of God and Nicholas, we live with the most amazing inspiration embedded in our lives.
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Tuesday, October 24, 2006 10:05 PM CDT
TOMORROW (Wednesday) - 5 MONTHS AGO
Tomorrow at 12:52 PM it will be 5 months ago that our son, brother, cousin, companion (as Nicholas' teacher would say), friend, and angel Nicholas left us physically...to guide us spiritually and through ALL the amazing ways that God allows him to do. For us, and through many stories we have heard from you, these are not just words to say...they are experiences realized regarding Nicholas truly being, "Never gone, never far." Oh Nicholas, as we always said and felt together, we just know that we are in each other's heart and soul. We LOVE YOU, son! And you are beatifully with our Father, God, and playing in Heaven as we all can imagine it would be.

HELPING OTHERS IS RIGHT, AND WE WISH WE COULD HELP OURSELVES…TO PHYSICALLY BE WITH NICHOLAS
There will never, ever be one day that Nicholas is not significantly in our hearts, souls, and lives! Through "Helping children be children" via the Nicholas Colby Fund and just caring & sharing like Nicholas, Nicholas' legacy lives on. As stated toward the end of the Video Tribute played during the Memorial Service (not the one accessible via Making Everlasting Memories referenced on this Home Page), we pray that you stay with us…with Nicholas…in ways that help to make all of us "better tomorrow" than we are today: "Let the memories and the promise of our gift from God shine within us forevermore."

A SURPRISE FOR MOM (from Nicholas?)
After Nicholas' bone marrow transplant in April 2005, we were away from home for a long period of time. Hardwood floors were installed throughout the house and in doing so we organized many of the toys, books, stuffed animals, etc. that Nicholas had been receiving from family and friends. Some were placed in storage containers for quick-organized access. And some of Nicholas' toys that were in his closet prior to the leukemia journey were also placed in storage containers. This included a "Tickle-Me-Elmo" talking toy that Nicholas received on his first birthday.

A few nights ago mom received an amazing gift from Nicholas. The "Tickle-Me Elmo" surprised mom. After all of these months there was a sound coming from the toy area that we have not heard since Nicholas last played with the toys that were placed there. On the evening of October 19, 2006 as mom was by the toy area she was literally greeted by hearing…"Play with Elmo…Okay, we'll play later." Those were some of the sentences that the talking Elmo says-what a beautifully timed surprise that night for mom!

Well, the "gifts" of love come in many, many ways and it seems like we can receive these blessings by "listening" and "looking" at what is around us.

As wonderful as it is to love and help others, we need it too and in many ways we receive love and help through giving…and thankfully we can always count on God to be there to love and help us along the way. We love you, Nicholas!
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Monday, October 23, 2006 11:17 PM CDT
A MESSAGE LEARNED YESTERDAY, MESSAGES FROM NICHOLAS THEN & NOW
In church yesterday the message reminded us so much of what Nicholas seemed to naturally do and continually seems to do through his love that remains ever present in our lives. Following are 5 essential practices from yesterday's message that fits Nicholas' approach and actions as well as several past journal entries. Remember?

1) "God is spirit, and His worshippers must worship in spirit and in truth." (John 4.24)

2) "May the Lord make your love increase and overflow for each other and for every one else…" (1 Thessalonians 3.12)

3) Jesus replied, "If anyone loves me, he will obey my teaching. My Father will love him, and we will come to him and make our home with him." (John 14.23)

4) "…if anyone serves, he should do it with the strength God provides, so that in all things God may be praised through Jesus Christ." (1 Peter 4.11)

5) "…be strong in the grace that is in Christ Jesus. And the things you have heard me say in the presence of many witnesses entrust to reliable ones who will also be qualified to teach others." 2 Timothy 2. 1-2)

FRIENDS - ALL THESE BEAUTIFUL KIDS
Please pray for friends met along Nicholas' journey:

Matthew. We recently included Matthew in our September 1 and 5, 2006 journals. Matthew's site is www.tsern.com.

Jacob. He was also included in the journals referenced above. Jacob's site is www.whatsssupwithjacob.org .

Would you pray with us…for all these beautiful kids that many of us do not see or know about the struggles they face. And for love to be welcomed in the hearts and lives of our families, friends, and acquaintances toward helping all of us to be comforted to some degree.

A LETTER SPEAKS TO THE "CIRCLE OF LOVE" WE HAVE TALKED ABOUT
Today we received a letter from someone in Germany we have not met…and it speaks to the "circle of love" and its amazing reach, touch:

"Dear Sheila and Lamont,

"You don't know my wife or I, but we share a mutual friend (…in Germany)…we have been truly touched by the loss of your child Nikko. In every picture one could see the love that flowed between you. He must have been very special and strong. We both noticed how in every picture he kept a smile that could brighten any room.

"Having no children of our own, we could never imagine the pain you have gone through. However, we can feel the joy you both shared, through your pictures, while he was here…"

As we have been saying, Nicholas is "Never gone, never far…!"
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Sunday, October 22, 2006 10:54 PM CDT
NICHOLAS COLBY FUND AND CHILDREN
This coming Tuesday, October 24, 2006, through the Nicholas Colby Fund…Nicholas is sending some children and their families along with some nurses and doctors to a Warriors' basketball game. Patients and staff will enjoy an evening in a suite…Nicholas and the Nicholas Colby Fund "Helping children be children." (Thank you Gina!)

HOME PAGE PICTURE TODAY
Like most children and children of all ages (including us adults), Nicholas enjoyed anytime spent with family and friends. So the seasonal holidays over the next 5 consecutive months brought fun, joyful times for Nicholas: Halloween (Harvest time, October Fest), Thanksgiving (referring to turkeys Nicholas said to mom, "I like when you make the big chickens!"), Christmas (Nicholas constantly looked to God & Jesus and loves to give as many of you have seen or experienced), Nicholas' birthday (January 27), and Valentine's Day (as well as dad's birthday a few days later in February).

Today we decorated Nicholas' site for Halloween: Pumpkins, bale of hay, a "Boo" ghost post, a "tree face" with glow in the dark eyes and teeth, and several different single colored mini discs looking like Jack-O-Lanterns. Nicholas' teacher surprised us with the mini discs. (Do you see the "Boo" post and "tree face" on the left of the picture at the tree?)

QUICK PICTURE OF NICHOLAS
With the home page picture above provided for now, by clicking on "View Photos" above you will see a familiar picture of Nicholas (since June 2, 2006). Remember, "View Photos" just shows three pictures so it provides a quick view of them without having to exit this CaringBridge site.

HOW WE ARE DOING TODAY
The past couple of weeks have been difficult; however, today with so much joy loving Nicholas and trusting God's love fully embracing Nicholas as well as us…we are comforted while at the same time missing Nicholas so, so much.

The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (4)

6) Pain in our hearts, stomachs… (4)

NOTE: The August 5, 2006 journal provides foundational information about these scales.
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Saturday, October 21, 2006 11:13 PM CDT
FOOTPRINTS IN THE SAND
Many of us have read the "footprints" poem a million times or more and tonight it came to mind as we thought about our day. You know, the poem about…

"One night a man had a dream, He was walking along the beach with the Lord. And across the sky flashed scenes from his life. In each scene, he noticed two sets of footprints in the sand; one made by him, and the other made by the Lord.

When the last scene of his life flashed before him, he looked back at the footprints in the sand. He noticed that many times along the path of his life there was only one set of footprints. He also noticed that it happened at the worst times in his life.

This bothered him very much, so he asked the Lord about it. 'Lord, you said that once I decided to follow you, you'd walk with me all the way. But I've noticed that during times of trouble, there is only one set of footprints. I don't understand why you left me when I needed you most.'

The Lord answered, 'My precious child, I love you and I would never leave you. During your times of trial, when you saw only one set of footprints, that's when I was carrying you.'"

WALKING IN NICHOLAS' FOOTSTEPS
Today, mom & dad sort of walked in Nicholas' footsteps. Of course, every part of our daily lives we walk where Nicholas has walked. However, today, we walked places that we have not in a very, very long time.

After visiting Nicholas' Oakmont site this afternoon (we placed pumpkins there today and tomorrow we will place a bale of hay), we went out for lunch. Quiznos for dad and Chipotle for mom. Nicholas liked Quiznos…he especially liked saying, "Umm toasty!" We ate at an outdoor seating area on cement blocks. These happened to be the very same blocks Nicholas played on a few years ago during an afternoon/evening out for dinner with Nicholas' friend Joey and his parents (before his leukemia journey). And, today we shared heart-warming memories about those days-making new memories even today of Nicholas.

After lunch, mom & dad went to a matinee for a movie, the very same theatre where we last took Nicholas before he passed away. And, we shared more heart-warming memories-for new memories from today.

We mention the poem, Footprints in the Sand, because today felt calming…like Nicholas was carrying our hearts AND we were carrying Nicholas in our hearts. And, we reflect on God knowing that He has been carrying all of us when we needed Him before the leukemia journey, during the leukemia journey, and now. Carrying us now and caring for Nicholas in our Heavenly home. We just know…
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Friday, October 20, 2006 11:59 PM CDT
SOMEDAYS ARE JUST OKAY
Today was okay…of course we miss Nicholas and we always feel love...so today was just okay because it is hard to "balance" our feelings. Nothing comes humanly close to easing the pain of missing Nicholas.

For us we will never forget the LOVE God provides everyday and we will never, ever give up on a good thing while taking action to cherish all that is good. God is our refuge and Nicholas is forever our shinning light-warming our hearts and patting our souls as the "good things" help in some of the same ways as well as different ways everyday! And someday...along with trusting and believing God's words... we absolutely feel that we will all cherish & relish all that is good through God, TOGETHER.
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Thursday, October 19, 2006 11:36 PM CDT
AN ANGEL'S MESSAGE
Nicholas held, patted, and played with a dolphin, named Hoku, during our December 2005 Hawaii trip. And there were moments he proactively took over the trainer's role and directed Hoku to perform acts Nicholas learned to command-it was a beautiful surprise to see Nicholas and Hoku "playing and having fun!" The trainer was pleasantly surprised. (Pictures are on the third album below under Links, and journals about the trip, scrolling to December 16, 2005 through December 20, 2005. Remember?)

Tonight we thought about a Hawaiian song, "Dolphin" by Apo & Beazley, we wrote about in the April 16, 2006 journal. This was a favorite song to play while we swam in the pool or on relaxing days. Following are the lyrics:

Oh Dolphin, tell me what you see out in the ocean.
Oh Dolphin, are you really free or is it your motion?
Take me away from here to some cool tropical isle
Leave all the doubt and fear, won't you please now help me to smile?

Oh Dolphin, do you fall in love the way that I do?
Oh Dolphin, do you ever need someone to talk to?

What do you do all day, runnin' around in the sea?
Sometimes I wonder, do you ever get lonely like me?
Tell me if you can think of a better way,
To keep my mind from listening, to what my heart wants to say

Oh Dolphin

Oh Dolphin, following the wind like a companion.
Oh Dolphin, dancing in the deep blue water canyon.
Rising out of the sea you fly, flashing a smile at the sun.
Sing a sad lullaby, before your having to run…

Like a "message in a bottle," thoughts of Nicholas & dolphins and songs of love & connection beautifully find ways to deliver to us expressions from a time before. And through the grace of God's speed the new-found expressions (messages) provide a loving impact on our lives today-God knows what we need and when.

And like a "message in a bottle," Nicholas, through God, seemingly placed his love in ways that would travel near & far, right on time.
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Wednesday, October 18, 2006 11:59 PM CDT
THESE JOURNALS have been our communication channel sharing Nicholas' journey that has included your walk with us via your guestbook entries, thoughts, prayers, etc. And for almost 5 months now these journals continue to share Nicholas' journey as the story continues…through Nicholas touching our lives every day and throughout our nights. And with the anxiety we have been experiencing, we are so glad to be able to turn to God, thank You, Father!

WE HAVE THOUGHT ABOUT THESE JOURNALS AND THEIR PURPOSE in terms of ensuring they are about Nicholas, about God, about love which when we think about love…it evokes everything that is pure and good. You may remember sometimes that Nicholas would say, "Father, I am glad that I can help others, but can someone else do it now?" He was referring to expressions from others including guestbook entries saying that Nicholas was setting amazing examples of faith, mental toughness, love, etc. during the leukemia journey. Nicholas, our love, we are so proud of you for being the beautiful, loving child always turning to God even when there were troubling times-God never left your side and continues to be right there carrying you, holding you, patting you and doing all the things that you loved mom & dad to do. And He is doing it "perfectly."

WHILE WE HAVE THOUGHT ABOUT WHETHER OR NOT WE SHOULD CONTINUE WRITING THESE JOURNALS, sitting at the computer and writing about our love for God and Nicholas seemingly guides our fingers while touching our hearts and souls. Writing the journals continue to provide a warm connection for us and is a very therapeutic experience each night. As the story continues, these journals and your guestbook entries are somewhat like a gift to us as well as an amazing connection with God, Nicholas, and love.

BECAUSE THESE JOURNALS ARE ABOUT LOVE WE TRUST the connection for you, and with you, is felt by you. So while we wonder about these journals from your perspective, we trust our hearts, our souls, and Nicholas' vibrant spirit and love to continually do what pleases God via these journals.
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Tuesday, October 17, 2006 11:42 PM CDT
THE "REACH" OF LOVE
Yesterday we received a poem from a family whose son played basketball with our older son in college. For us, receiving the poem at this time was another demonstration of the "reach" of love. The message was timely delivered and we are not surprised because God is always giving to us in amazing ways.

Here is the poem (author unknown):

When loved ones first depart from us,
Our hearts find no relief.
And then, in time, our faith in God,
Releases us from grief.

In time, we trust the Savior's claim,
That death does not endure.
It is life that lasts forever,
In a hope that stands secure.

For with His death, Christ promised us,
That souls washed clean would gain,
A place with Him in Paradise,
And there they would remain.

Thus, mourning turns to comfort,
For we know, in time, we'll be,
Together with our loved one,
For all eternity.

AND THE "REACH" OF LOVE IS OFTEN WHERE WE HAVE ALREADY BEEN
We are so thankful for the medical staffs at Children's Hospital Oakland (CHO), Stanford-Lucile Packard Children's Hospital (LPCH), and The Children's Hospital Denver (TCH) for their warm, loving care Nicholas and mom & dad experienced. Through continued conversations, emails, and guestbook entries on this CaringBridge site the care & love continues. Thank you!

So not surprisingly we have warm, loving memories because they are all amazing. From A to M to Z their names are still on our hearts and we believe on Nicholas' soul as he too sees the beauty in the way they always interacted with him, with us. We could go through every letter of the alphabet to name everyone on the medical staffs; however, here too, we trust that God is touching them in ways…so the story continues. (From doctor "A"garwal at LPCH to Nurse Practitioner "M"olly at TCH to Nurse "M"ichelle at CHO to Radiologist "Z"hang at LPCH, your interactions helped Nicholas to have good memories along the leukemia journey).
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Monday, October 16, 2006 11:48 PM CDT
ANXIETY
In last night's journal we provided the latest snapshot on How We Are Doing. Relative to the difficulty getting through the days and the pain in our hearts / stomachs, what has been overwhelming are feelings of anxiety. It is like walls are closing in and breathing room sucked away. The anxiety comes from physically not being able to be with Nicholas, to see him, to hold him. We do have Nicholas so alive in our hearts & souls and spiritually, he vibrantly lives in our lives.

Reflecting back on Nicholas' life enables us to "see" love in action and realize that Nicholas generated love through his interactions. Perhaps Nicholas was also demonstrating lessons in love through his fun nature even during "trying times." Here are a few of those "trying times" we shared on this site back in March 2005 and similar to ones throughout Nicholas' journey…the results always were an experience of fun & love combined.

1) "Boo, did I scare you?"-When going into the operating room, waking up in the operating room, and various times with the nurses and doctors least expected it.

2) "What's your name, what's your whole name?"-To just about everyone who came into his room. And he remembered their first and last names.

3) "Can I tell you one thing first?"-When negotiating for time during administration of medicines.

4) "Thank you God for making me strong to take my shots!"-When occasionally having to take G-CSF shots in alternating arms for several consecutive nights at home.

5) "What are you going to whack next?"-When a doctor was checking his reflexes and then asked Nicholas to roll over.

6) "Mom, tell Jesus thank you for giving medicine so I could go boo-boo." Then after Sheila prayed, Nicholas asked, "What did He say?" (Nicholas had been constipated from one of the medicines.)

7) "Do you want a piece of me?"-To just about everyone, including mom and dad, when having fun or being a little feisty.

Experiencing Nicholas' vibrant facial expressions and his lively interaction with everyone was so beautiful. We praise God for always being with Nicholas and for Nicholas to find ways to have fun. We praise God for finding ways for us to ALWAYS be with Nicholas. You know, Nicholas must know that "Never gone, never far" is real because we never were gone from his side and never far from his reach.

I HOPE YOU EXPERIENCED FUN & LOVE FROM NICHOLAS and continue to experience fun & love because "Our angel Nicholas…We don't have to see you, to know you are here."
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Sunday, October 15, 2006 10:30 PM CDT
FRIDAY AND SATURDAY JOURNALS CAPTURE OUR FEELINGS AND LOVE
There was a hymn this morning at church that reminds us of the love we share with Nicholas…and why we are thankful for the blessings revealed in Friday and Saturday's journal. It is a love that we believe keeps us so close to Nicholas and a love that we need so very much every moment of the day. Everyday without Nicholas is extremely difficult. And everyday we are still parents needing to love and share love (we have three other boys, young men to influence & impact the world around them). Perhaps the need to share love, not for ourselves but for God, is also what enables us to know that Nicholas and all of these beautiful kids are perfect in God, in love, and in purity.

The hymn is another message to us about love, why Nicholas seemed to always love, and why we feel the need to share love:

LOVE GROWS HERE by Stephen L. Bigger
(chorus)
Love grows here, love grows here.
If we love our Savior, we'll hold His children near.
Near to the heart of Jesus, Love grows here!

Love is our purpose here, love is our song.
We are striving for a love like Jesus: patient, gentle, sweet and strong.
May we learn to live in harmony so we can see where we belong! (chorus)

Lord fill us with a joy like we've never known.
For Your sake, Lord, we are Your peacemakers kneeling at Your Father's throne.
Praying for Your love to heal our land and warm our hearts and fill our home! (chorus)

Make Your grace, fill this place. Help us show the world Your love is here! (chorus)

HOW WE ARE DOING
The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (6)

6) Pain in our hearts, stomachs… (6)

NOTE: The August 5, 2006 journal provides foundational information about these scales.
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Saturday, October 14, 2006 11:36 PM CDT
GENTLE REFLECTIONS
- This morning provided moments for just sitting on the bench at Nicholas' spot gazing into the sky…listening to the sounds of the morning from things happening nearby, in the sky, and in my heart & soul.

- This afternoon playing basketball with the boys provided moments for just "guy time"…and Nicholas was with us as we talked about the things he would do and the fun he had playing basketball.

- This evening was difficult and we found ourselves deeply reflecting on Nicholas and his amazing love that is so alive in our lives. There were moments of walking into his room, calling out his name, and looking out the picture window from the living room praying as the sun began to set. This moment, too, was a soothing reflection on Nicholas as we thought about the warm, loving moments holding Nicholas in our arms, rocking him, singing to him, and praying with him…sometimes he would gently and lovingly fall asleep as we walked along the picture window gazing into the sky. The reflections we are talking about here are like the times we did the things with Nicholas that we did tonight (November 7, 2005 journal).
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Friday, October 13, 2006 11:47 PM CDT
OUTING WITHOUT NICHOLAS
Nicholas (our 6 year old) and his high school friends: Tonight we went to our first high school football game without Nicholas. It was the Acalanes High School homecoming game and there were several players who were and are regulars in our lives (including Nicholas'). Mom worked in the snack shack and dad sat in the stands.

For mom, she interacted with many friends of all ages as she worked in the snack shack. And there were the moments when little boys came to the snack shack…she pictured how Nicholas would be coming to buy something, probably hot chocolate. She pictured his interactions with others and it led her interactions with others tonight. There was one little boy purchasing some items with $20.00 and she gave him a quick lesson in math as she helped him to understand the change he was receiving. A simple moment, yes, however, they were moments of joy while missing Nicholas so much. (She was doing what Nicholas would be doing: helping…)

For dad, he interacted with friends of all ages as he sat in the stands. There were the parents, and kids in grade school and high school that shared moments about Nicholas and/or simply expressed joy and shared love. There were the little kids wanting to go out onto the field at half time, there were those asking their parents for money to buy that snack in their mind that would make the outing at the game just right for them. I smiled thinking about these interactions that I would be having with Nicholas (and had with Nicholas in so many places doing so many things). And I smiled seeing the joy of family and love…and I was sad missing Nicholas.

A simple thought of mom & dad's…FOREVER IN OUR HEARTS AND SOULS. However, it is this thought and being thankful for God's love that provides even more to mom & dad when we are feeling down because God has never left us alone. God has not left our side, He has not stopped being our guide. When we need Him most He is already there…and when we do not know what we need He remains there inside our hearts and souls providing guidance and companionship without us even noticing.

We know that we are blessed, it is just so hard to reconcile moments like tonight…we cry, smile, and know that love will never leave Nicholas or us.
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Thursday, October 12, 2006 11:59 PM CDT
THANKFUL, HURTING, THANKFUL
EVERYDAY we are thankful for all the amazing memories we have of Nicholas: his birth, his smile, his gaze, his words, his actions, his giving, his caring, his love…

EVERYDAY we hurt, missing him physically: his smile, his gaze, his words, his actions, his giving, his caring, his love…

AND EVERYDAY we are so thankful for the joy of having Nicholas forever in our hearts and souls: his life, his smile, his gaze, his words, his actions, his giving, his caring, his love… Seemingly all of Nicholas comes to life in ways that let us know he is "playing and having fun" fully, completely living with God and at Jesus' feet. His smile as we look at his pictures or see his smile in our minds still warmly touches our hearts. His gaze from looking into his eyes on pictures or in our minds still happily penetrates our souls. His actions seem to come to life throughout our days and nights in an array of ways (thank you God, thank you Nicholas). His giving continues through his spirit that is so vividly alive in virtually everything we see and/or experience. His caring amazingly touches lives today as much as it did in all of the yesterdays…and we trust will continue in all of the tomorrows. And Nicholas' love for God, his love for all of us in ways that God enabled, coupled with his spirit will forever-we trust and believe because of God-build loving paths that fortify our hearts and souls for each other.

Every moment, every day, every week, every month…have been awfully hard. However, we hold Nicholas in ways that are so real through God and each way that we hold & love Nicholas are a very present help in our lives.
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Wednesday, October 11, 2006 10:57 PM CDT
TODAY
While the pain in our stomachs has never gone away since Nicholas passed on May 25, 2006, thankfully we continue to feel a sense of purpose for our lives. For this, too, we recognize that we are blessed.
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(Tuesday) Wednesday, October 11, 2006 10:41 PM CDT
WALKING, PRAYING, TALKING, LOVING
Today was like everyday of walking with, praying to, talking with, and loving God as well as Nicholas. Today was also like everyday…wondering why…and falling into God's hands to hold us up, lovingly placing us where he wants us to be.

Like the song, "Count It All Joy" that is on the Video Tribute and the NicholasColbyFund.org site, under Sound Tracks, "It is hard to understand sometimes…How do I make sense of everything I'm going through…And even in the darkest night…If you look hard enough…There's a trace of sunlight waiting there…Yes, waiting there for you…Everything that I need…Was right here, yes inside of me…"

We are so thankful for God's constant reminders that our sunshine, Nicholas, is in the perfectly lit place-Heaven-and is inside of us as we are inside of him. We just know…
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Monday, October 9, 2006 11:53 PM CDT
GOOD DAY, ROUGH NIGHT
The day was filled with many conversations about "making a difference" and not surprisingly they also included conversations about Nicholas. Sweet Nicholas, you continue to warm my heart and sooth my soul with your love…and our day was good.

Tonight, however, was one of the hardest nights in a couple of weeks. There was nothing wrong, except not having Nicholas physically here to hold… And we thought about the song, "If I Can Help Somebody" that was sung during the Celebration of Life. It is so amazing how the songs, words, from those sang during all the services on June 2, 2006 poignantly depicts Nicholas' entire life. And, again, Nicholas warmly touched our lives tonight where and how we needed through our reflection of "If I Can Help Somebody" (recapped on the June 14, 2006 journal entry).

Nicholas, thank you for helping us tonight as we listen to the song and its words:
- If I can help as I pass along
- If I cheer somebody with a word or song
- If I can bring back beauty to world of wrought
- If I can spread loves message that the master taught
- Then my living shall not be in vain

Nicholas you continue to do these things and more. And you are LIVING with God, playing and having fun with Jesus!
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Sunday, October 8, 2006 11:59 PM CDT
EMOTIONAL HIGHS & LOWS BUT LOVE ALWAYS ECHOES THROUGH
In the September 27, 2006 journal we talked about seeing life in a positive light while recognizing obstacles and challenges. This was our approach during Nicholas' leukemia journey and, actually, it has always been our approach toward life. As we think more about that, although it was and is very, very hard to focus and live life happily while facing some of the obstacles and challenges (especially missing Nicholas so much), loving God actually allows us to feel comforted and guided. We guess, well we feel, that counting on God brings joy in many ways…including the feeling as we call out His name. This by itself is amazing to us and we are so thankful that the mention of His name in our thoughts or out loud generate love that we feel!

Perhaps the feeling of calling out to God is why even the "echoes of love" as we call out Nicholas' name over his site at Oakmont Memorial Park commands so much power in our hearts and souls. The echo from loudly saying, "Nicholas we LOVE YOU" is simply and wonderfully amazing. (This is talked about in the August 4, 2006 journal.)

And the positive light we are talking about seems to be about the "light" from God that He provides. It reminds us of the book, "The Next Place," that we read to Nicholas on his last physical day with us, May 25, 2006. The book is recapped in the May 26, 2006 journal and the beginning that we remember right now is…"The Next Place is an inspirational journey of light and hope to a place where earthly hurts are left behind. An uncomplicated journey of awe and wonder to a destination without barriers…"

So while we experience some very hurtful emotional lows, we are thankful for the echoes of love that keep coming to us. These echoes and God's love generate emotional highs that, thankfully, overshadow the emotional lows. We are thankful and feel blessed...

(Today was mom's birthday and here too we are thankful for the emotional highs and love that God provides, the love that Nicholas continues to provide, and the joy that mom had having all of her boys "with" her as Nicholas is never far, never gone...)
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Saturday, October 7 2006 11:59 PM CDT
LIGHT THE NIGHT® WALK (with Nicholas)
Beautiful was the tone of the night as family and friends (from home, Nicholas' school, and our work) participated on "Team Nikko" in Walnut Creek tonight for the Light The Night® Walk, which is the Leukemia & Lymphoma Society's nationwide evening walk to build awareness of blood cancers.

Friends of all ages created posters of Nicholas…and the posters included some of the things that Nicholas would say, like "You want a piece of me?" Under the full moon the time spent together talking, walking, and loving Nicholas as well as all these beautiful kids who are surviving or have passed away, was beautiful.

PHOTOS
Aside from the picture above on this Home Page, please click on View Photos above to see the girls / women of "Team Nikko," most of the kids on "Team Nikko," and lots of posters of Nicholas & love.

(Most of the pictures taken tonight are now on the third album below, under Links, and we will post some on this caringbridge site over the next several days.)

THANK YOU, thank you, THANK YOU all who directly and in-directly participated. We truly love and are so grateful for the ways that you show up for Nicholas and are in our lives!
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Friday, October 6, 2006 11:00 PM CDT
DID YOU SEE THE MOON TONIGHT?
Do you remember the August 9, 2006 journal about what we saw in the moon? (If not, please press "Journal History" and scroll to August 9, 2006.) Today's news had an article, "Sky Watch: Tonight's Moon Will Be Extra Full." The article read, "Tonight's full moon will be almost 12 percent bigger than some of the full Moons this year, according to NASA, setting up a fine viewing opportunity when it rises in the evening. The reason: The Moon is near perigee, the point on its slightly out-of-round orbit that is closest to Earth."

Tonight was "full" in a few ways:

1) One of dad's brothers and dad's nieces (Nicholas' uncle and cousin) visited and we had a full evening with dinner; talking, laughing, tears, and love shared about Nicholas; and really nice time appreciating God for his comfort, love, and care He no doubt is providing to Nicholas.

2) Our church, Moraga Valley Presbyterian Church, where Nicholas' Memorial Service and Celebration of Life were held is remembered for its words: "Love grows here." It is about nurturing our core, securing our foundation, and discovering our purpose in Jesus Christ. With the Bible as our Word from God, one another as gifts from God, and authentic desire as our aspiration for God, it is about growing in our love for God. Growing in our love for one another. Growing in God's love for the world. We mention this here because we are so thankful to be able to recognize God's continued blessings in face of what Nicholas experienced since November 19, 2004, and we have experienced since May 25, 2006.

3) And of course, tonight was full as experienced via the Full Moon. Did you see it? Mapping back to the August 9, 2006 you will read why tonight filled our hearts with joy.
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Thursday, October 5, 2006 11:15 PM CDT
WE LOOK TO FAITH IN GOD AND TRUST IN GOOD (For Nicholas)

ANGELS FLYING HIGH
Today and this evening were amazingly majestic and it felt so good to experience what we did, when we did…because we love Nicholas so, so much. Below is a snapshot of love begetting love (I trust that you understand why we keep saying this, beside the fact that it has been proven in so many ways.)

- Blue Angels and Fleet Week: Throughout late morning and early afternoon U.S. Navy Blue Angels (jets) were piercing the sky against the SF landscape and amazing, majestic clouds that were sweeping against the blue sky as well as billowing up against the blue sky. It was a picture-perfect sky and from my office on the 20th floor the clarity and crispness of the air had me enjoying God's work.

The day was another reminder that God is always good so we just know that Nicholas is "heavenly just right" although we miss him so much.

- "RISING" banners hanging high on poles around City Hall / Civic Park in San Francisco: What a site to see blended with everything experienced today. With the word "Rising" on banners there was a picture of the Golden Gate Bridge in the background along with an eagle in the foreground. It was like a subtle reminder of love, spirit, and Nicholas.

- Sound stage at San Francisco's Civic Park in front of City Hall, the Civic Center, and the Federal Building: Uplifting, angelic music was thunderously penetrating throughout my body-really! As the music was being tested in preparation for a big outdoor event, it created a very pleasing atmosphere as I walked to BART for my ride home. The sound was so pure, gentle, and uplifting throughout several blocks. What sweet moments for any day. (The outdoor event is the San Francisco Opera "under the stars," live simulcast of "Rigoletto" tomorrow night there at Civic Center Plaza SF and Stanford University Frost Amphitheater.)

- Many types of birds were flying in their clusters as if the walk to BART was staged, orchestrated to provide the feelings experienced.

Nicholas, precious, you must be smiling and know that God is love... What a magnificent sunset, day, moonrise, and moments loving Nicholas! I hope others experienced some or all of these things (no matter where you were).
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Wednesday, October 4, 2006 11:04 PM CDT
A MESSAGE FROM NICHOLAS' MONTESSORI SCHOOL TO PARENTS OF CURRENT STUDENTS
"Last year we participated as a group in the Light The Night® Walk, which is the Leukemia & Lymphoma Society's nationwide evening walk to build awareness of blood cancers.

"Walkers carry illuminated balloons-white for survivors and red for supporters-to celebrate and commemorate lives touched by cancer. We walked because our lives were touched by a very special boy and his family. Nicholas Gilbert was a very popular and much loved little boy who started DVMS in Miss Jenny's class and had moved on into Miss Shirley's class. At the Octoberfest in 2004, I remember Nicholas came dressed in his Minnesota Vikings uniform and Sheila Gilbert was helping out in the food booth. Shortly after that on November 19th, Nicholas was diagnosed with High Risk B-Precursor, Acute Lymphoblastic Leukemia (ALL). After a courageous battle in which Nicholas had gone into remission for about 10 months, he left us in the physical sense on May 25, 2006. However, Nicholas' spirit lives on as all those who knew him still carry a piece of Nicholas in their hearts.

"One of the things I love about DVMS is the sense of community and carrying among the children and their families. It is in this spirit that we invite you to join us in Walnut Creek at Civic Park on Saturday, October 7, 2006 for The Light The Night® Walk. Registration, food, and entertainment begin at 5:00PM and the walk leaves Civic Park at 7:00PM. We will be joining Sheila and Lamont Gilbert and their co-workers from AAA as part of 'Team Nikko'"…
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Tuesday, October 3, 2006 11:59 PM CDT
AS ANOTHER DAY COMES TO AN END we walk about the house thinking about Nicholas. We think about watching him just doing the things that he did, just listening to him talk, and just gazing into his eyes or onto everything about him because loving him felt and feels so good. Throughout the days and nights we periodically, just stop and deeply gaze into his eyes on pictures or in our minds. We are so captivated by his wonderfulness today as always, that draws us so very close to his spirit and his soul.

Sometimes, although there is joy from being so close in those moments captured above, there is also hurt because we just miss him so. Many times when talking about our pain we say, "we just miss him" because we want Nicholas to understand that we do MISS HIM although we trust and believe he is "playing and having fun." We do not want Nicholas in spirit or however God enables him to be connected, to feel that we are hurting for any reason other than "we just miss him." What we are trying to say is Nicholas has done EVERYTHING RIGHT and we want him to constantly just know…

So we trust God to deliver completely on His words fulfilling us all. And we think about so many hymns, songs, poems, writings, etc. like the book "The Next Place" read to him on May 25, 2006 and words in songs like "Never gone, never far"…"This bond between us can't be broken, because you'll be in my heart from this day on and forever more"…"From the moment I saw you, from the moment I looked into your eyes, there was something about you I knew, I knew, that you were once in a lifetime…"

As living goes on we do keep living with Nicholas a very present part of our lives, while balancing our strength to be a very present part of the lives of our other boys, our family, our friends (all of you) in the ways that we should, ways the we could, and ways that serve God. We are "trying" (knowing that the active word really should be "doing" but sometimes it is extremely hard) to do these things leaning on God and His guidance...and always being so connected to Nicholas.

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Monday, October 2, 2006 11:59 PM CDT
THE WIZARD OF OZ (Community Theatre presented more than the expected)
It is stated that the Wizard of Oz was simply written to entertain children of all ages…and teach wonderful lessons in the timeless and touching story. "We only need to look within ourselves to find courage, love, and intelligence that are inherent in all human beings." And, remember, "there is no place like home."

Recently mom & dad received a community-theatre post card from a beautiful girl-Lis-Nicholas met through KJ during Nicholas' leukemia journey. She performs in community plays and other venues. Like The Wizard of Oz, reflecting on Nicholas' journey there are countless experiences of his courage, love, intelligence, wit, etc. Today, we received a "program" of Lis' latest play, The Wizard of Oz, and her note: "I'm sending you this special program." Following is an excerpt from the program about Lis, about Nicholas, about KJ:

Liz "has also appeared in numerous shows with Harmony Players: Sound of Music, Pajama Game, West Side Story, Music Man, Grease, Chorus Line, Oliver, Cinderella. She also would like to dedicate this show to two special boys, KJ Estudillo and Nicholas Colby Gilbert…Thank you for being my inspiration!"

So the story continues…love begetting love. Thank you, Lis!
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Sunday, October 1, 2006 11:06 PM CDT
GOD CONTINUES TO BE A VERY PRESENT HELP, AND…
Today we went to a birthday party for Anastashia, the youngest of the Nieuwsma girls many of you may remember from reading or seeing pictures about Nicholas' journey. Anastashia will turn 6 years old in a few days. Aside from the all the things associated with a birthday party, there was rock climbing that also contributed to it being a difficult (or should say conflicting) time. Remember, Nicholas also enjoyed rock climbing (as seen via the Video Tribute played during the Memorial Service June 2, 2006). We were glad to be there for Anastashia, with her three sisters, and with her parents. We were glad to be there enjoying God through friendship and love that He provides…constant reminders that God really is a very present help to us. God has been so proactive, providing for us in ways that we do not know we need yet come to know that we needed.

AND, we were sad not to have Nicholas physically with us! We were sad to not see Nicholas physically enjoying the interaction he always lovingly contributed to. While it was difficult-conflicting emotions-we look to God, we pray, we speak to Nicholas, we pray…turning to God and His all-knowing ways we trust He is proactively ensuring that Nicholas is short of nothing. We trust God completely although it terribly hurts to be without Nicholas physically. And we were told that Nicholas, while not physically here today, truly is never gone, never far because he was contributing to Anastashia's birthday.

(Like so many friends of Nicholas who spent time with him everywhere we were during his journey, the Nieuwsma girls are the ones who played the Harp during Nicholas' Celebration of Life on June 2, 2006 and brought their Harp to LPCH to play for Nicholas and for Nicholas to play for all of us. Remember Nicholas playing the Harp on the Video Tribute? Pictures are on the third album below under Links…scrolling to 3/17/06.)

A SONG FROM CHURCH TODAY SPEAKS TO HOW WE SHOW UP FOR GOD, WITH NICHOLAS

"We Fall Down" by Chris Tomlin:

We fall down, we lay our crowns at the feet of Jesus
The greatness of mercy and love at the feet of Jesus

And we cry: Holy, holy, holy
And we cry: Holy, holy, holy
And we cry: Holy, holy, holy is the Lamb.

Note: Crowns meaning like earthly possessions.

This song reminded us of the times Nicholas would say, "I'm glad that I can help people (to know and love God), but could someone else do it now?" He said this referring to being on the leukemia journey and navigating the ups & downs. And it was during times when people would express that Nicholas' steadfast love for God and Nicholas' strength, energy, enthusiasm, joy, & endless passion for caring about others were amazing testaments to God.

And this song has us thinking about our purpose, our love, and how we show up for God, for Nicholas, and for what God and Nicholas continues to teach us.

Saturday, September 30, 2006 11:59 PM CDT
CUDDLING
Nicholas' special spot (as one sweet little friend calls it) provided cuddling moments fitting for today's weather and natural happenings. Enjoying the grounds were deer, squirrels, wild turkeys, birds...high above were planes in the distance, and whispery clouds. From above and touching below were the sun's rays shinning through the clouds...the caress of the breeze and its gentle swaying of the wind chimes provided a melody for our hearts. Seemingly all of today's happenings were in harmony.

 

From the chill in the air to the warmth from the sun...everything in harmony generated cuddling moments and thinking of Nicholas warmed our souls. Oh God, we trust and believe, Nicholas trusted and believed, so seeing and feeling Your grace in the ways experienced today...oh God Your love and grace must be amazing to Nicholas as he must be realizing everything working out for his good. And as we previously "journaled," when we are again together with Nicholas the experience to him will only be like moments apart (like when he was at school during the day).

Father, Nicholas and all of these beautiful kids need to feel Your love fulfilling them fully; we pray thanking You for Your words.

MESSAGE FROM A FRIEND
Recently a friend gave me a message and said it can be for one of the journals. Today had several diverse happenings, and from missing Nicholas to joy because of God to questions swirling, today that message seemed like a gift from Nicholas:

"I looked at the web sites and read and felt his life. My heart is full as I think of what you and your family have been going through. I looked high and low for a card and just couldn't find anything that said what I thought I may want to hear in your situation. So I took to (my) thoughts to see if there was something I would want to hear...and what I heard was a little boy named Nicholas who I did not know but who simply said:

-'When they gave me a choice to pick out my dad I picked you.
-When God asked me where I'd like to live I told Him I wanted to live with you.
-When asked who do you want to teach you things I smiled and pointed to you.
-Everyone knew I was happy, they could see it in my eyes...I was very happy.
-When they asked me what I'd like to say I simply smiled and said I know your sad dad and I know you miss me,
-When you're still and you fill the wind across your face that will be me.
-Know there are blessings in the wind, there are blessings in my passing like the day I'll see you again.
-Dad (and mom) I love you!'"
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Friday, September 29, 2006 10:41 PM CDT
CHERISH
Today and tonight we were constantly thinking about and missing Nicholas; however, today and tonight were okay. Thinking about Nicholas we thought about the life that we cherish, and the love that we cherish, with Nicholas. We treasure everything about Nicholas and thank God for His guidance toward this understanding.
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Thursday, September 28, 2006 11:59 PM CDT
AS ANOTHER DAY COMES TO AND END…
We think about ALL that Nicholas brought into our lives and brings into our lives even today. As another day comes to an end, we have tears missing Nicholas and we hear & see things that shine a light on our hearts and into our souls. One moment we are hurt so much deep inside and outwardly cry just missing Nicholas…and another moment-while the pain deep inside remains-our hearts are warmed by Nicholas' light and our souls seem to glow illuminating a perfect picture of him that thankfully is all around us in our world.

Whether we are home, at work, around town doing the daily things that most do, we look to God to guide our lives and so appreciate our family, friends (colleagues, neighbors, Nicholas' classmates & their parents, and all of you engaged along the way). We feel that the blessings that continue in our lives everyday in spite of some very tough days are reminders that Nicholas is happy & whole in spite of the journey… he is at "home" although being at home with us is where we wanted him to be. He is where we pray and live lovingly so we will be with him and Him.

IN SPITE OF CHALLENGES WE HAVE
Simply stated, Nicholas navigated and endured more than we collectively have ever experienced in our lives. He "lived" and that in itself is a loving tribute enabling us to live for him and, of course, for God. So in spite of challenges that we face, Nicholas is helping us once again as we reflect on how he navigated and lived lovingly along the way.
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Wednesday, September 27, 2006 11:59 PM CDT
WE ARE STRUGGLING ("AND" WE ARE FEELING LOVED)
Honestly, it just does not seem real…the last 125 days since May 25, 2006. Our love for God, for what is good, and for what is right make up the foundation of our lives. We do not say these things to blindly hope for God's love and graces; we say these things because we know that we do not have to ask God to be God-He is God so His work is good and right although we just cannot understand all that has happened. AND we trust and believe with our eyes wide open, with our minds, hearts, and souls rooted in Love.

Keeping our minds, heart, and hands busy with these journals, reading the guestbook entries, cards, emails, and letters are very helpful to us. All of these things have been a helpful part of our lives since November 19, 2004…and we are so thankful for God's constant presence in our lives. God and His loving touch have immensely blessed Nicholas and our family in many ways. Even though it was and is hard to understand that Nicholas was not healed the physical way we prayed, loved, and cried (cry) for. We miss Nicholas so very much.

Most of you know that I look at things in a positive light, while recognizing obstacles and challenges. I focused on the positive things in ways intended to help Nicholas "live" and love regardless of what we faced…because our Father, our daddy, was loving us and lighting up our paths. Even as May 25, 2006 approached we believe God paved a path for Nicholas to be home in the Bay Area so that Nicholas could be around the love that God provided through you. Thank you so much! We are sure you saw that Nicholas "lived" on the leukemia journey-yes there were some troubling times and yes there were smiles, laughter, playfulness, joy, fun and so many things that a child enjoys.

We know that Nicholas was so loved and remains loved by so many. Understanding more and more about grieving, we are also not understanding more and more about grieving. We are struggling deep inside and we feel loved (so the roller coaster, so to speak, continues today in this way). God, as we prayed with Nicholas, we pray ourselves to You that who we need right now is You…

Nicholas, we see you in so many ways son-love begets love, forever.
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Tuesday, September 26, 2006 11:59PM CDT
REMEMBER THE 3 FORMATIONS OF CLOUDS RECENTLY
Referring to the August 18, 2006 2:15AM journal, we talked about a heavenly surprise above Nicholas' site at Oakmont Memorial Park in Lafayette. The surprise was an amazing gift-we believe-from God and from Nicholas. Before we continue with this journal…prior to Nicholas' passing we would download photos from our camera onto the computer regularly. We have not done so as frequently and while a picture of the 3 clouds we are talking about was taken over a month ago, we did not download the picture that was more than amazing to us because viewing it on the camera screen it appeared too far in the distance to show up clear enough. But just over a week ago we downloaded pictures and what a beautiful surprise to see that the picture of the 3 clouds can be seen.

NOW, THREE (3) HAS EVEN MORE OF AN AMAZING MEANING TO US
- God
- Love
- Spirit

- The Father
- The Son
- The Holy Ghost

THE THREE (3) CLOUDS

CLOUD ON THE LEFT - I could not determine a clear figure for this cloud; however, it resembled a fire burst shooting upward or a fireworks display shooting upward.

CLOUD IN THE MIDDLE - Stunningly, the shape is a right hand with all fingers and a thumb, seemingly giving a soft high-five, a gentle wave hello, and/or message to "be still and calm" because I am okay.

CLOUD ON THE RIGHT - This cloud was shocking. It had the crisp shape of a butterfly and Nicholas enjoyed butterflies. (A few years ago Nicholas "raised" butterflies from the larvae stage on up to the beautiful butterfly stage in a butterfly container...to their release. A picture of Nicholas releasing one can be seen on one of the albums under Links and the Video Tribute that we are searching for a way to make available via a link on the Nicholas Colby Fund site.)

We have seen what we have seen, we feel what we feel, we love God and Nicholas… trusting Nicholas and God will love us in an array of ways...love begets love and will manifest love in our lives, our hearts, and our souls. So maybe this was love finding another way to embrace us.
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Monday, September 25, 2006 11:38 PM CDT
123 DAYS (4 MONTHS) since May 25, 2006 that Nicholas has been at God's side, with Jesus, and a light for all of us even brighter than the amazing way he illuminated our lives for nearly 6 1/2 years.

Love really does beget love. This evening, spontaneously, family and friends were at Nicholas' site at the same time. His teacher, Ms. Shirley, was there. From mom's work, Cyndi, was there. And a friend of Nicholas' nanny who is now our friend, Jules, was there. There were others there today. Someone left a note that no doubt has Nicholas smiling (remember his passion for writing notes and desire for collecting money?). The note read, "I love you Nico Pico. I miss you so much. We all do." And they left a dollar bill.

Two other surprises tonight: roses and a small dolphin sculpture (with three dolphins seemingly "playing and having fun").

We are so grateful for the love and support all of you directly and indirectly provide Nicholas and the rest of our family! We miss Nicholas so, so much and missing him is constantly in our thoughts, on our hearts, and in our souls. Nicholas, son, you are so loved…
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Sunday, September 24, 2006 11:41 PM CDT
QUESTIONS AND SORROWS
While we still do have questions & sorrows, we do not directly seek answers to the questions…we do seek to be even closer to God and trust & believe Him. We trust God to love because He is love. And like the analogy of the quilt talked about in the August 3, 2006 journal, sometimes things that we see, we just do not understand. Remember, the analogy was about the bottom side of a quilt and seeing knots and material that have been cut off and perhaps dangling. And imagining seeing the topside of the finished quilt or even while it is being created…what you would see is a beautiful piece of work and it transitioning into a masterpiece. (It is a masterpiece even though it is in the works of being seen as a masterpiece.)

What we heard in church today reminded us of the quilt: "Following Jesus is overcoming doubt, unbelief, and sacred ambiguity." For us, we focus on Jesus and God, knowing that God is our Father…he is our Daddy so we just know that His love is constant although some days are really hard to get through. His work is masterful and He will see us all through our questions & sorrows. And everything will work out for our good through Him.

So we trust & believe Nicholas is perfectly okay because he is with God; and we will be with Nicholas as it all works out for the good of all of us loving God. (And Nicholas was always loving God…)

HOW ARE WE DOING-we are very thankful for the continued "smiling" relative to the first 4 "views" below.

The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (4)

6) Pain in our hearts, stomachs… (4)

NOTE: The August 5, 2006 journal provides foundational information about these scales.
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Saturday, September 23, 2006 11:10 PM CDT
"BEAUTIFUL"
"Beautiful" is a song performed by Jim Brickman & Wayne Brady and is a song on Nicholas' Video Tribute that was played during the Memorial Service, June 2, 2006. (You can hear the song by going to www.nicholascolbyfund.org, to Song Tracks, to the "Loving Tribute To Nicholas" CD, to the number 5 song "Beautiful.")

This song was on our hearts Saturday morning, midday, and tonight. And we could see and feel so many moments throughout Nicholas' life, and now, that reflect the words in the song (many of the reflections have been written in the journals from the beginning).

Note: Following are words to the song and in (parentheses) below lines of the song we have captured some of the reflections we have of Nicholas:

BEAUTIFUL
From the moment I saw you
- (When Nicholas was born)
From the moment I looked into your eyes
- (From always looking into Nicholas' eyes)
There was something about you
- (Nicholas' sweetness and love)
I knew, I knew

That you were once in a lifetime
- (Nicholas loved people so much and always helping people)
A treasure near impossible to find
- (Nicholas was so genuine with his love)
And I know how lucky I am to have you
- (God's gift to us, to you, that we feel even today)
Cause I've seen rainbows that can take your breath away

The beauty of the setting sun that ends a perfect day
- (Pictures in the albums of Nicholas & sunsets)
And when it comes to shooting stars I've seen a few
- (We often talk about Nicholas as a shooting star to be seen again and again)
But I have never seen anything, as beautiful as you
- (Day & night Nicholas' beauty resonates with so many, thank you!)

Holding you in my arms
- (Nicholas loved to be in our arms as we danced; remember journals about the song, "Dance With My Father" or about us dancing with Nicholas at his Oakmont site?)
No one else has fit so perfectly
- (Nicholas' embrace has always been heavenly)
I can dance forever with you, with you
- (We often prayed, cried, and softly danced with Nicholas in our arms)

And at the stroke of midnight
- (Nicholas was often up late during the leukemia journey, remember?)
Please forgive me if I can't let go
- (Nicholas' presence, his scent, his own touch is amazing)
Cause I've never dreamed I'd find a Cinderella of my own

Cause I've seen rainbows that can take your breath away
-(Nicholas painted lots of rainbows)
The beauty of the setting sun that ends a perfect day
And when it comes to shooting stars, I've seen a few
But I have never seen anything, as beautiful as you
- (Nicholas, sweet Nicholas)

La Da Da Da Da Da Dah
Ohh Oh Oh Oh Ohh
- (Nicholas loved to sing)

I've seen rainbows that can take your breath away, away
The beauty of the setting sun that ends a perfect day
And when it comes to shooting stars I've seen a few
But I have never seen, anything, Ohh Oh Ohh, no I've never seen anything
- (Nicholas, the beautiful way you engaged with classmates, neighbors…everyone)
As beautiful as you

From the moment I saw you
- (Nicholas, then and now, you are in our hearts & souls)
From the moment I looked into your, eyes
- (Nicholas, always and forever, my love)
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Friday, September 22, 2006 11:05 PM CDT
NICHOLAS' MEMORIAL MARKER (above on this Home Page)
We remember, when we were kids, the words "stop, look, and listen." We think about these words now because when we "stop," "look," and "listen" during everything in our lives we can "see" and "hear" the joy that nothing can take away from us. It is joy unmistakably given to us by God…the joy of Nicholas that is never gone, never far, and forever in our hearts and souls. It is the joy of our other three boys…the joy of family, friends/neighbors/colleagues, and those who continually show up in our lives and become friends.

As we write this journal, in the moment we "stopped" and "listened" to the joy in our hearts because of God. In doing so we were reminded-thank you Father, God-of a video we took of Nicholas on April 9, 2006…he was playing on his laptop and interacting with a safety program. The program he was interacting prompted Nicholas to sing to it (and that is when we grabbed the video camera and videotaped him singing): "…stop, look, and listen…you don't know what you are missing…" And the genuine singing of the words, swaying of his arms/hands, and movement of his lips, his eyes, his head told us that he was happy and full of joy (in spite of all the leukemia and bone marrow stuff).

(Remember Nicholas and his laptop from his 6th birthday? If not, please refer to the photos on the third album and scroll to the period just before and after January 27, 2006 as well as refer to the journals around that time period.)

THE MEMORIAL MARKER is for our sunshine, our prince, our king-Nicholas-who every moment of our lives graces us with his loving presence in ways that do let us know that God is THE KING. God is THE KING and he is letting Nicholas be king through the amazing love that Nicholas shared and shares even today! The surprises referenced in last night's journal are the "heart-shaped" frame around Nicholas' picture on his Marker. The picture was imbedded onto marble by a laser. And the "balloons" emblem. And the "Cherub" emblem.

And the surprises that we will forever give Nicholas are love everyday, always! "Nicholas, we just know that you feel our love, your family and friend's love, and you are with Love!"
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Thursday, September 21, 2006 11:19 PM CDT
GOLDEN "PUZZLE PIECE"
Our hearts were touched by Nicholas' love again-tonight mom received an early birthday gift from a friend. It is a gold medallion…created in the shape of a "puzzle piece" with the back inscribed, "You will always have a piece of me…"

"Do you want a piece of me?" is what Nicholas would say. And mostly we replied, "We want all of you!"

NICHOLAS' "FLAT MEMORIAL MARKER"
Tomorrow afternoon Nicholas' "flat memorial marker" will be installed on his Oakmont site. This is the marker with his name and we have some beautiful, touching surprises for Nicholas. The surprises are a combination of things he loved and things about love.

DETAILS AND PHOTO OF THE MARKER fit for a prince-well fit for a King because Nicholas would convince us that he was a King-will be provided in tomorrow night's journal and Home Page.
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Wednesday, September 20, 2006 11:59 PM CDT
BUT GOD, WHO HE NEEDS RIGHT NOW IS YOU
Some days were very difficult for Nicholas and were difficult for Sheila & me as we responded to questions like, "Father, I know God loves me but how come He hasn't touched me to heal me?" Our response to questions like this was always rooted in trusting and believing God. Not blindly trusting or wishing God's love to love. Trusting and everyday seeing blessings come Nicholas' way, come our way.

We would sometimes cry with Nicholas saying, and praying, that we know God loves you and we know what we want and when we want it. And God, who we need right now is You…as we know that Your love never fails and as much as we want to see and feel healing now we trust Your love and recognize that the healing is taking place in Your way. Even now, we think about the song, "He's my son," with the words and link to the song in the January 6, 2006 journal.

As we look back over the journals written during Nicholas' leukemia journey, we reflect on the sorrows and the blessings-the blessings that were realized every, every day. And we are reminded of the song, "If You Could See Me Now," with the words to the song in the July 31, 2006 journal. The following words soothingly are felt in my heart and soul right now:


Though we've had our sorrows,
They can never compare.
What Jesus had in store for us,
No language can share.

If you could see me now,
I'm walking streets of gold.
If you could see me now,
I'm standing tall and whole.

If you could see me now,
You'd know I'd seen His face.
If you could see me now,
You'd know the pain is erased.

You wouldn't want me,
To ever leave this perfect place,
If you could only see me now.
If you could see me now...

Nicholas we see you baby and our love for you grows daily-although the love we have always had for you no one could ever measure because of its depth and breadth. My tears are because you, son, are more than amazing… We are blessed because of God, because of you. Remember, "We just know that we will always feel each other in our hearts and souls." God must be so very pleased with the love you showed Him and everyone during the difficult days. You, Nicholas, are amazing today as you were all of the yesterdays and will be all of the tomorrows!
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Tuesday, September 19, 2006 10:50 PM CDT
NICHOLAS' BROTHERS…
"I still can't or don't want to believe it. It still feels so unreal and like a nightmare that I can't wake up from...the pain and hurt just won't go away. Not a month, week, day, hour, minute or second goes by that I don't think of Nicholas and just see his face and hear his voice. Even without physically having him here, at those moments, he still finds a way to put a smile on my face and give me a sense of calmness like he always could.

"It is still so hard to understand and I feel like I never really will. But I know through it all, since May 25, 2006 at 12:52 PM, he has been and will continue to be with me every month, every week, every day, every hour, every minute and every second until the day we're together again. And I know every step I take, everywhere I go and everything I do, he is with me."
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Monday, September 18, 2006 11:46 PM CDT
DIFFICULT NIGHT, HOWEVER, WE WANT TO SHARE SOME PHOTOS
Today was okay; however, tonight we are having a very difficult time missing Nicholas so much more than words can describe.

Referring to yesterday's journal, the "Home Page" photo above and the three photos under the "View Photos" button above were taken at Camp Okizu this past weekend:

- Mom created / painted a tile at Camp Okizu that will be placed at the camp along with tiles created by other parents

- On every trip with Nicholas we found a heart-shape rock, and now at Camp Okizu too

- After all parents with a candle lit for their child participated in a reading (please refer to yesterday's journal), we all placed our candle into the fire at the camp's amphitheater. The flames provided a backdrop for Nicholas' heart-shape rock

- Nicholas was always in our arms or holding our hand, now he is still close and warm in our hearts & souls

WE WERE ASKED ABOUT HEARING THE SONGS LINKED TO NICHOLAS (so in case you missed it)
To hear songs from the June 2, 2006 Memorial Service and Celebration of Life, please refer to the September 13, 2006 journal by clicking on "Journal History" above and scrolling to September 13, 2006 for the directions and links.

Or just scroll up the "Home Page" to the heading, "Songs From The June 2, 2006 Celebration of Life Can Now Be Heard Again," for directions and the links.

HOW ARE WE DOING-we are very thankful for the continued "smiling" relative to the first 4 views below. While the day was okay, tonight was very difficult missing Nicholas… (We guess this is our roller coaster although it is so, so tiny recognizing Nicholas' roller coaster along his leukemia journey was astronomical. And Nicholas still smiled and loved so, so much!)

The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (4 today and 6 tonight)

6) Pain in our hearts, stomachs… (6)

NOTE: The August 5, 2006 journal provides foundational information about these scales.
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Sunday, September 17, 2006 11:59 PM CDT
CAMP OKIZU FOR BEREAVED FAMILIES
Mom was eager to participate in the Camp Okizu family camp for bereaved parents, and dad had some reservations. The reservations were not about welcoming any type of help along this part of our journey, the reservations were about unknown excruciating-personal conversations with people we do not know. And it has only been 115 days ago that Nicholas passed so dad was not sure about the timing. Too soon?

Surprisingly, however, being at Camp Okizu was the right place to be for many reasons. Here are a few: 1) conversations with others who feel and are experiencing the awful pain of losing a child, 2) conversations about challenges faced along this part of our journey, 3) conversations about joy that manifests in amazing ways that are "never gone, never far, in our hearts is where you are…" We were both so glad to have participated, expanding our circle of love, and creating helpful space in our hearts & souls that should continually help us along the way. This was a beautiful reminder that God's speed is God's time and He will provide for us in His time.

There is so much to share about this camp, however, for now below is a quick recap starting with Sunday (today), Saturday, and then Friday:

SUNDAY, September 17, 2006
After breakfast at camp, the 13 families went to the camps' amphitheater (with a lake and tree-lined back drop) where a "candle ceremony" was held for our children who have passed. Each parent shared a remembrance of their child as one candle lit the candle being held by another. Before the lighting of the candles and remembrances, all the parents out loud said the following words to what was written as, "We Remember Them." After each statement of "we remember them" the sounds of a chime rang through the amphitheater.

In the rising of the sun and in its going down,
We remember them.

In the blowing of the wind and in the chill of winter,
We remember them.

In the opening of the buds and in the rebirth of spring,
We remember them.

In the blueness of the sky and the warmth of summer,
We remember them.

In the rustling of the leaves and in the beauty of autumn,
We remember them.

In the beginning of the year and when it ends,
We remember them.

When we are weary and in need of strength,
We remember them.

When we are lost and sick at heart,
We remember them.

When we have joys we yearn to share,
We remember them.

So long as we live, they live in our hearts,
For they are part of us,
As we remember them.

SATURDAY, September 16, 2006
After breakfast at camp, the 13 families transitioned from the lodge to another building on the 500-acre camp. There the founder told his story about establishing Camp Okizu 25-years ago. Then each parent of a child who has passed away, from a form of cancer, shared the story about their child.

About 2 ½ hours later we all had heard stories about 1) children a couple of months old to late teens who were diagnosed with cancer, 2) these children who had passed away at an age ranging from a few months old to their late teens, 3) these children who had passed away as recent as two months ago to ten years ago. There were parents from the Bay Area (Lafayette - Nicholas, Orinda, Clayton) of California; Fairfield; Sacramento; Central Valley (Modesto, Turlock); El Dorado Hills; and Minden, Nevada.

Hearing the stories of others we cried with them, laughed with them, and reflected on God's love with them. Sharing our story about Nicholas we shared love…that is "never gone, never far, in our hearts is where you are" Nicholas! And amazingly, hearing, sharing, living these moments and reflecting on moments, love filled the air and our hearts…

The afternoon was filled with a hiking tour of portions of the 500-acre camp, a "ropes course" where we were fitted with a harness similar to those used for rock climbing and we embarked on a series of adventures that took us flying over 100 yards down a hill on a cable…to climbing up to 60 feet on a tree and "cat walking" on a beam while being secured with cables similar to rock climbing…and taking adventurous walks on the beams as well as leaping off the beam to snatch a flag suspended high off the ground…and then drifting to the ground.

Along with other activities, after dinner all the families went to the camps' amphitheater for a campfire, camp songs, and smores. After the campfire we went back to the art floor of the lodge to complete painting a ceramic tile about Nicholas that will be placed on one of the buildings along with tiles created by other parents. (Sheila created and wonderfully painted a caption about Nicholas.)

PICTURES FROM THIS WEEKEND WILL BE POSTED WITHIN A COUPLE OF DAYS.

FRIDAY, September 15, 2006
The trip to the Camp Okizu started out Friday afternoon and in some regards it seemed like a trip with all of our boys (including Nicholas) although it was just mom & dad. We started out with expectations of God's love revealing love unexpectedly although predictable because without fail He loves Nicholas, Matthew, Timothy, Christopher, and mom & dad as well as all of you. And there was the feeling of traveling that seems to always present adventure and warm memories.

Following recaps our drive to Camp Okizu:

- Singing songs holding our hearts very close to the words and wonderful memories.

- A rainbow in the distance and as we approach it was vibrant and vivid. The rainbow rose high into the sky disappearing in the clouds; and we were left with the feeling that the rainbow ended in Heaven where clearly our "pot of gold" (Nicholas) is.

- While we were mesmerized by the rainbow, we noticed a sign on the side of the road that read, "East Nicoulas," (not spelled Nicholas) the name of a small town that we were approaching. Remember the song, "Count It All Joy," at the end of Nicholas' Video Tribute? Well, count it all joy was exactly what we were feeling…counting the wonders of love, joy!
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Thursday, September 14, 2006 11:59 PM CDT
JOURNAL HIATUS FRIDAY AND SATURDAY: CAMP OKIZU THIS WEEKEND
Referring to the September 12 journal, beginning tomorrow (Friday) mom & dad will be at Camp Okizu with other parents of a child who has passed away. We are going into this trip with hopeful expectations relative to conversations & care, including time to just be away so we personally can be even closer to God as well as Nicholas.

SOMETHING ABOUT NICHOLAS FROM A FRIEND
Today, a friend gave me the following message she created about Nicholas as she was listening this afternoon to the song "Joy" from Nicholas' Video Tribute played at his June 2, 2006 Memorial Service. (All of the "Celebration of Life" songs can be heard on the NicholasColbyFund.org site as stated in yesterday's journal and now stated in the header at the top of this Home Page as an access reminder.)

Although the following is about Nicholas, we think you will experience that it is about Nicholas, God, mom & dad and our other three boys, and about you:

- N is for "New Life" here on Earth and in Heaven

- I is for "Imagine" no one could imagine the many blessings you would bring with your presence

- C is for "Care" you showed so many others while carrying the cross you were given

- H is for "Holy" in the Holy Spirit that guided you, your father, your mother and us to..."Him"

- O is for Omnipotence, Omniscience, Omnipresence of the Almighty God

- L is for "Love" you gave, Love we give, and the Love God Is!

- A is for "Apple" for the juicy little apple you are…of your mother and father's eyes

- S is for "Spirit" and how you brought all of us together under one spirit..."The Spirit of Love in the Spirit of the Lord"

- NICHOLAS, we will never be the same! :)
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Wednesday, September 13, 2006 11:47 PM CDT
SONGS FROM THE JUNE 2, 2006 CELEBRATION OF LIFE CAN NOW BE HEARD AGAIN
While the transition to the NicholasColbyFund.org site is still underway, you can again experience songs from the June 2, 2006 Memorial Service and Celebration of Life on the NicholasColbyFund.org site. Please go to www.NicholasColbyFund.org, select the "Sound Tracks" page, and then click on any of the songs to experience them again. Following are the songs:

- Nicholas' Song of Love

- "Held" originally performed by Natalie Grant, sung by Linda Freitas at Nicholas' Memorial Service

- "If I Can Help Somebody" originally performed by Aaron Hall, sung by Ed Harris at Nicholas' Celebration of Life

- Songs from the Video Tribute played at the Memorial Service (pictures of Nicholas with family, school-mates, neighbors, and many of you poignantly set to music/songs):

1) "For Good" performed by Idina Menzel & Kristen Chenoweth

2) "Step In The Name Of Love" performed by R Kelly

3) "You'll Be In My Heart" (from the movie Tarzan) performed by Phil Collins

4) "Beautiful Soul" performed by Jesse McCartney

5) "Beautiful" performed by Jim Brickman & Wayne Brady

6) "Never Gone" performed by Backstreet Boys

7) "Old Friends" performed by George Winston

8) "Joy" performed by George Winston

9) "Count It All Joy" performed by BeBe & CeCe Winans

***REQUEST***
Please let us know, on this site at this time, what you think of experiencing the songs again.

NOTE" We are still determining how to position the Video Tribute for you to view, with its amazing pictures of Nicholas poignantly set to the 9 songs above.

THANKS
The NicholasColbyFund.org site platform and setup is thanks to Reda and Luigi of Learning Technology Partners.

The Video Tribute songs and Video Tribute is thanks to Ginny.

We are blessed! And Nicholas, thanks for continually smiling on us as we all smile on you.
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Tuesday, September 12, 2006 11:59 PM CDT
BEREAVEMENT CAMP?
This coming weekend we are planning to participate in an Okizu Foundation's Oncology Family Camp for bereaved families. The mission of the Okizu (oak-eye-zoo, is a Sioux Indian Word meaning Unity) Foundation is to provide recreational, respite, and peer support programs for families affected by childhood cancer. We have heard wonderful reports from new-found friends who have had the unfortunate opportunity to attend. It should be a helpful experience, a time to connect with other families in our situation.

While Nicholas was able to enjoy MANY adventures and activities before and during his leukemia journey, he did not "officially" go camping. If we go, we expect Nicholas to be there in MANY ways. [The director of the bone marrow transplant services at Stanford-Lucile Packard Children's Hospital supervises the medical staff (pediatric oncology departments, social workers, and recreation therapists from participating hospitals.)]

ANOTHER SURPRISE AT NICHOLAS' SITE
Wrapped around the cherub statue at Nicholas' special spot last night was a very nice Hawaiian shell necklace. We are sure it has a special story behind it and hope that we will hear the story soon. It is so wonderful to know that Nicholas will NEVER be forgotten by the ones he had the chance to touch in his very short 6 years here on earth.

We are so thankful for the work that Nicholas did by just being who he was, our angel on earth and now our angel in heaven. You have probably read or heard this…"for some only dream of angels, we have held one!"
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Monday, September 11, 2006 11:20 PM CDT
ONE MORE DAY
The song, "One More Day," by Diamond Rio like most songs can provide many meanings. During Nicholas' physical journey here on earth, Sheila and I listened to the words, and even now we view the essence as beautiful heartfelt expressions of wanting to always hold love close. However, the reality for us was that if that "One More Day" meant our little guy would have had to suffer, we would unselfishly give it up and take May 25, 2006 as our "One More Day" as hard as it was.

May 25, 2006 was our "One More Day" that we had been praying so hard for, God gave it to us and we had to find a way to be thankful for that day. It was with utmost mixed emotions. But just as the song says in one of the verses that we would unplug the phone, keep the TV off, and just hold you every second and say a million I love you's. That is exactly what our "One More Day" was like-just like the song-it is so ironic. We never really knew the words to the song until after our "One More Day" had been granted.

And we think about one of his favorite songs, "I Believe I Can Fly" by R Kelly and his response to "What are things you want" question asked of Nicholas on April 19, 2006. Below is an excerpt of the June 19, 2006 journal about Nicholas' April 19 response along with other questions and his responses:

***Excerpt from June 19, 2006 Journal***
REFLECTION
Mom & dad used a "shooting star" (not falling star) analogy asking what do many of us say when a shooting star is seen? The common answer…see it again! Keeping with this analogy, we will see Nicholas again, again, again…because Nicholas lives in our hearts in so many different ways for most, if not, all of us. Because of all your beautiful thoughts and prayers, and "because you livvve son, my world has twice as many stars in the sky."

We then shared Nicholas' responses to questions a couple of months ago by a Stanford-LPCH social worker that was very engaged with Nicholas and mom & dad since March 31, 2005. The responses were generated by an open, free-flowing conversation that we were aware of. Following are some of the questions along with Nicholas' responses:

What makes you happy?
-Playing with my toys
-Drawing and painting pictures
-Writing, board games, and card games
-Playing with friends
-Easter egg hunts

What makes you sad?
-I do not get sad much

What are things that you want?
-Go to Disneyland and the Monterey Bay Aquarium again
-When things hurt, for mom & dad to fix it
-I like it when mom rocks me
-I like it when dad hugs me when I do not feel good
-Super powers: being fire, really strong, stretch real far
-To fly

Well, Nicholas is flying with amazing powers at God's side, in God's hands, and in God-speed… We realize these truths AND we miss Nicholas' physical presence so much.
***End of excerpt from June 19, 2006***

DWELLING ON GOD'S LOVE
We dwell on God's love and God's timing, as well as Nicholas, so while selfishly we absolutely would have wanted one more day with Nicholas (forever), we would not have wanted one more day for Nicholas to have to navigate what was in front of him at the time. Besides we dwell on God's love & timing and Nicholas is now at "Jesus' feet…" We trust Nicholas is experiencing his wants like being really strong (carrying others in amazing ways), stretching really far (to connect with us and others in amazing ways), and flying (just the way he likes)…

WORDS TO "ONE MORE DAY"
Last night I had a crazy dream
A wish was granted just for me
It could be for anything
I didn't ask for money
Or a mansion in Malibu
I simply wished, for one more day with you

One more day
One more time
One more sunset, maybe I'd be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day with you
One more day

First thing I'd do, is pray for time to crawl
Then I'd unplug the telephone
And keep the TV off
I'd hold you every second
Say a million I love you's
That's what I'd do, with one more day with you

One more day
One more time
One more sunset, maybe I'd be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day with you

One more day
One more time
One more sunset, maybe I'd be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day
Leave me wishing still, for one more day
Leave me wishing still, for one more day
With you

Note: You can hear the song by placing "www.ladaisey.com/onemore.html" in your browser.

WORDS TO "I BELIEVE I CAN FLY" (from the movie, Space Jam)
I used to think that I could not go on
And life was nothing but an awful song
But now I know the meaning of true Love
I'm leaning on the Everlasting Arms

If I can see it, then I can do it
If I just believe it, there's nothing to it

I believe I can fly
I believe I can touch the sky
I think about it every night and day
Spread my wings and fly away

I believe I can soar
I see me running through that open door
I believe I can fly
I believe I can fly
I believe I can fly

See, I was on the verge of breaking down
Sometimes silence can seem so loud
There are miracles in life I must achieve
But first I know it starts inside of me, oh

If I can see it, then I can be it
If I just believe it, there's nothing to it

I believe I can fly
I believe I can touch the sky
I think about it every night and day
Spread my wings and fly away

I believe I can soar
I see me running through that open door
I believe I can fly
I believe I can fly
Oh, I believe I can fly

Hey, because I believe in You; oh
If I can see it, then I can do it
If I just believe it, there's nothing to it

I believe I can fly
I believe I can touch the sky
I think about it every night and day
Spread my wings and fly away

Hey, if I just spread my wings
I can fly...(I can fly!)
(I can fly!)
Fly...
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Sunday, September 10, 2006 11:04 PM CDT
HOW WE ARE DOING
The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (6)

6) Pain in our hearts, stomachs… (4)

NOTE: The August 5, 2006 journal provides foundational information about these scales.

******NICHOLAS COLBY FUND PLANS ARE UNDERWAY TO SEND A CHILD AND FAMILY TO DISNEYLAND******
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Saturday, September 9, 2006 11:59 PM CDT
IT FEELS LIKE GOD IS SPEAKING TO US THROUGH HIS GREAT WORKS
Sitting at Nicholas' site and gazing at the sky…the beautiful blue sky with the sun's rays striking whispery clouds, that seemed to form wings, elicited an angelic sense and peace of mind. At least from a calming perspective for those moments. With the sun above the western hills of the Briones Regional Park behind Nicholas' site, the golden hills illuminated a sense of strength and softness as the golden waves of tall grass flowed from the breeze. (The southern hills can be seen in the third photo under "View Photos.")

The whispery clouds, the strength felt from the hills, and the glow of everything the sun's rays were touching left a feeling that again lets us know that Nicholas is lovingly secure in Heaven in all that is good. And nothing contrary to good could ever penetrate his surroundings or his "being."

Two songs came to mind as the breeze softly moved the dried grass on the surrounding hills and the hills, naturally, seen as pillars. As you read and think of the songs being sung, the words may remind you of many things that Nicholas enjoys:

1) What A Wonderful World

I see trees of green, red roses too
I see them bloom, for me and you
And I think to myself, what a wonderful world.

I see skies of blue, and clouds of white
The bright blessed day, the dark sacred night
And I think to myself, what a wonderful world.

The colors of the rainbow, so pretty in the sky
Are also on the faces, of people going by
I see friends shaking hands, saying how do you do
They're really saying, I love you.

I hear babies cry, I watch them grow
They'll learn much more, than I'll never know
And I think to myself, what a wonderful world
Yes I think to myself, what a wonderful world.

Oh yeah...

2) America The Beautiful

Oh beautiful, for spacious skies,
For amber waves of grain,
For purple mountain majesties
Above the fruited plain!
America! America! God shed his grace on thee,
And crown thy good with brotherhood, from sea to shining sea.

Oh beautiful, for pilgrims' feet
Whose stern, impassioned stress
A thoroughfare for freedom beat
Across the wilderness!
America! America! God mend thine ev'ry flaw;
Confirm thy soul in self control, thy liberty in law!

Oh beautiful, for heroes proved
In liberating strife,
Who more than self their country loved
And mercy more than life!
America! America! May God thy gold refine,
'Til all success be nobleness, and ev'ry gain divine!

Oh beautiful, for patriot's dream
That sees, beyond the years,
Thine alabaster cities gleam
Undimmed by human tears!
America! America! God shed his grace on thee,
And crown thy good with brotherhood, from sea to shining sea!
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Friday, September 8, 2006 11:59 PM CDT
TALKING AND WALKING WITH GOD, AND WITH NICHOLAS
Talking and praying with Nicholas have become constant. We dwell on God's promises and as we think about the many times Nicholas asked things like, "Why doesn't God touch me and heal me now," we trust that Nicholas is now simply "playing and having fun" with God. Sometimes it is very hard to understand God's plan; however, it is not hard to understand His love so we first trust and believe. Understanding will come some day although we do understand that the many blessings along the way during Nicholas' physical life here has left the character of his life spiritually implanted in our hearts & souls for eternity.

To clarify, dwelling on the promises is trusting and believing that God has filled Nicholas with amazing love, perfection in all aspects of everything pure and good. And Nicholas absolutely deserves everything pure and good although it is hard to understand the journey he had to travel! What Nicholas "thinks" he needs he will find a way to earn it. Many of you know Nicholas, he is probably negotiating for something and that something is probably for someone else as much as for himself.

Talking and praying with Nicholas is very, very helpful to us. As we listen for his voice, for sensations of him, and for his messages we anticipate the joy they will bring to us…and yet Nicholas fills us with joy everyday because we knew him, we know him, we have him always & forever.

Nicholas, we LOVE you (and we know that you know that)!
________________________________________
Thursday, September 7, 2006 11:43 PM CDT
HURTING "AND" RECEIVING BLESSINGS
Hurting continues to be deep in our stomachs and connects with our hearts in ways that leave us clinching our fists and tightening our bodies… We look at a picture of Nicholas and the sparkle in his eyes & warmth from his glowing personality, while seemingly would cause more pain, actually calms us to a degree. We reach out to Nicholas and sense our hands cradling his beautiful face. And we hold him close…

Tonight at Nicholas' site mom & dad arrived just about the same time after work. There was a family of deer prancing on the grounds, a Quail flying out of one of the pine trees on Nicholas' site and back to Nicholas' site. The moment seemed just right to reach out again to Nicholas and we asked, we asked Nicholas to let us know what he wants us to do and how he wants us to be moving forward. And, of course, we ask God for His guidance, as we keep thinking toward action on God's will for us not our will for ourselves.

Friends near and far once again were with us today and helping us along the way, thank you! And again, we realize through all of you that we are blessed…and so is Nicholas. "Nicholas, you feel your friends' providing blessings for your soul as well, right!" So today was an okay day although the hurt does not go away. "Nicholas, the hurt is only because we love you so, so much. And Nicholas, we "just know…" and we are comforted knowing that you are with God. You are with Jesus, "…enjoying Jesus, just sitting at His feet."

******PLEASE STAY TUNED FOR PLANS ABOUT NICHOLAS AND THE NICHOLAS COLBY FUND "HELPING CHILDREN BE CHILDREN" VIA DISNEYLAND******
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Wednesday, September 6, 2006 11:59 PM CDT
DISTRACTIONS ARE WHAT SOME SAY ARE NEEDED
Back at work keeping busy and the "distractions" that it generates is not enough to occupy our minds in a way that keeps us from the physical loss of Nicholas. Our other boys, our families, you-Nicholas' and our friends, who continually show up in our lives in the way that you do does help to occupy and fill our minds and hearts with love. And love felt, frees us to love. We feel love embracing everything around and within us and it feels so good.

We do not look for things to cover up or suppress what we are facing. We look for the help needed to keep us focused on God and His love that delivers, provides, cares for, and all the attributes of a mother, a father naturally provide. Being open to God's attributes generate more than we could possibly imagine. Honestly, more than we can possibly imagine is what we feel that we need-and we know that God will provide what we need.

Nicholas is not physically with us so we spend virtually all of our time "listening" and "sensing" in our home and business lives. "God-speed my love…in your soul as well as ours. We love you and are there!"

WARM, SUNNY, CALM EVENING
This evening was warm, sunny, and weather wise, calm. Greeting us at Nicholas' site today was a bouquet of Sun Flowers and a stuffed Spider-man figure. These things were alongside a double-butterfly figurine that was set out at Nicholas' site last week. Thank you! These things are so fitting for the everlasting, ever reaching, ever penetrating, warmth and gentleness that is Nicholas.

One of Nicholas' water guns and three of his action figures (Spider-man, Peter Pan, and a Power Ranger) were the toys and things enjoyed at his site this evening.

We felt the warmth of the sun today. We experienced the moon tonight. We call out God's name and just saying his name amazingly helps to soothe our hearts-the brightness of the sun and the twinkle of the moon & stars absolutely remind us of Nicholas. He is there!

******NICHOLAS LOVES DISNEYLAND…SENDING A CHILD TO DISNEYLAND IS ON THE HORIZON FOR NICHOLAS & THE NICHOLAS COLBY FUND******
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Tuesday, September 5, 2006 11:21 PM CDT
LEARNING AND TEACHING
Nicholas was constantly learning and teaching. He knew two languages, English and Spanish, and was always learning from others as well as teaching others through his actions and behaviors. And his three brothers…Chris: one of our sons has graduated from college and is fulfilling a dream working in the professional sports industry; Tim: another son is entering college; and Matt: our other son is entering his senior year of high school. Well we should say four brothers because Jordan (you may remember Jordan from the Memorial Service) is like a fifth son of ours who has entered his senior year of high school.

Today we are talking about learning and teaching because Nicholas was and still is an amazing catalyst for our family toward learning…we saw the power and beauty of learning through Nicholas' interactions with friends of all ages-literally all ages Nicholas was able to engage…learn…and teach.

Thank you, Nicholas, for continually teaching us. We love you…always and forever-we "just know!"

PRAYERS FOR A FRIEND IN NEED
On our September 1, 2006 journal we specifically talked about three beautiful kids. One of them is Matthew and his CaringBridge site can be accessed via www.tsern.com. Please pray for:

1. The doctors and wisdom in finding a good path for Matthew

2. Clarity in the minds of Matthew's parents as they make important decisions

3. Matthew's strength for what he is about to embark upon

4. Matthew's sister, Megan, and what she has to experience next

5. All these beautiful kids…

6. Recognition of the blessings in all of our lives, even in the midst of what is unbearable by ourselves, as we acknowledge God's love and his omnipotence, omniscience, and omnipresence
________________________________________
Monday, September 4, 2006 8:57 PM CDT
WHERE, WHEN, HOW, WHY
Where do we go from here when it appears our broken hearts will be broken forever? When will our hearts be at a point where we can give to others without having to tend to our hearts just to get by? How do we formulate all that naturally came together to parent-nurture and raise-when Nicholas is with God and relatively speaking we have raised our other boys to adulthood? As these questions come to mind, the fourth question most of us would be inclined to go to next is WHY…

Even as the where, when, and how questions come to mind what surfaces for each seems to answer those questions in terms of where we go from here, in terms of when our hearts will be at a point to "more" than get by, in terms of how we parent even at the current stages of our other boys' lives. Actually, what surfaces are not answers but direction-through God.

Our natural gravitation when faced with questions is to God-love and spirit-that forever has provided and guided us even in the midst of worry…even when we did not know what to do to get by…even when we were not sure what to do next to be the mother & father Nicholas (as well as our other boys) needed. All of these questions are not answered in moments of thought. They are not answered in a single journal. They are not answered in a single day and perhaps not in a week, a month, or even a year. However, what comes over us is trusting and believing God to get us where He wants us to be, when He wants us to be there, how He wants us to be along the way, and the answers of why will come where, when, and how He desires because He knows…

As we talk about "He knows" referring to God, we again are so grateful for the conversations we always had with Nicholas letting all of us know that Nicholas "just knows" no matter what, no matter the time…place…or space…that WE just know that we would be in each other's hearts and souls. Even now! "Yes Nicholas, we feel you baby and there, there is another feeling of love for you."

God's masterpiece is created in God-speed so we will continually trust and believe His omnipotence, omniscience, and be so grateful for His omnipresence rendering us a constant parent shepherding us along the way.
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Sunday, September 3, 2006 11:59 PM CDT
HOW WE ARE DOING-we are so thankful for the continued "smiling" relative to the first 4 views below.

The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (4)

6) Pain in our hearts, stomachs… (4)

NOTE: The August 5, 2006 journal provides foundational information about these scales.
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Saturday, September 2, 2006 11:59 PM CDT
ONE MIGHT THINK IT "DIFFERENT" … DINNER WITH NICHOLAS' DOCTOR. However, relative to doing things aligned with love begetting love is the difference in our lives enabling our hearts to beat and our soul to continuously move closer and closer to God. In loving and spreading love, we are closer and closer to Nicholas. And in loving and spreading love, we sense Nicholas smiling because as most of you know…Nicholas has always been and IS STILL all about love.

Dinner and conversation was very comforting…we say it again, we have been so blessed every step of the way during Nicholas' journey and even now as the story continues.

VISIT TO STANFORD-LUCILE PACKARD CHILDREN'S HOSPITAL after dinner was another way for us to express our affection for the medical staff. We brought them a snack basket; I guess I should say snack BASKET because we brought a very large basket to hold snacks for the night staff and tomorrow morning's staff.

RELATIONSHIPS…from dinner with Nicholas' doctor to a visit with the staff at the hospital. What made it "okay" for us to visit where Nicholas took his last breath on earth 100 days ago is the relationship that Nicholas and mom & dad enjoy with the staff that can never ever fail. It cannot fail because it has been built on love, love that is authentic and rooted through God. Amazing…God is "providing" for us in ways that one might think it "different" and ways that He knows we need. We are blessed because of God, so we trust and believe that Nicholas is loved in amazing ways & "playing and having fun." We are so grateful to have God with Nicholas and God in our lives.

Referring to last night's journal, please pray with us for Matthew and his family. And pray with us for Cam's family as well as all these beautiful kids…
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Friday, September 1, 2006 11:51 PM CDT
ALL THESE BEAUTIFUL KIDS
We often talk about all these beautiful kids and you may remember a picture of Nicholas with two other bone marrow transplant patients, with their arms around each other at the Ronald McDonald House. The two are KJ and Jacob-you could see the picture of the three again by accessing the third album (Day 132 leading to BMT and current pictures) below under Links and scrolling to June 27, 2005. Jacob is on the right and he could use your prayers as well. Jacob's site is www.whatsupwithjacob.org

And Matthew, another beautiful kid who received a bone marrow transplant could use your prayers as well. Like Jacob's parents, Matthew's parents were (and are) so wonderful to Nicholas and Sheila & me. Matthew's site is www.tsern.com

A child we have not talked about on Nicholas' journal is another beautiful kid to pray for. His name is Cam and at a different time he was undergoing the same drug at The Children's Hospital-Denver that Nicholas did when Nicholas was in Denver. Sheila came across Cam's site a couple of months ago and shortly after that the Nicholas Colby Fund offered to help his father out with an airline ticket to St. Jude Hospital during a very trying time medically for Cam. Cam is now back at The Children's Hospital-Denver and could use your prayers as well. Cam's site is www.caringbridge.org/ct/camdalene

DIFFICULT DAY
Today has been very difficult for no specific reason…missing Nicholas and so thankful that God allows us to love in a way that while missing Nicholas we can experience Nicholas' love. And difficult as we check in on Jacob, Matthew, and Cam.

DINNER WITH NICHOLAS' TRANSPLANT DOCTOR
Tomorrow night (Saturday) Sheila and I are having dinner at the home of Nicholas' transplant doctor. You may remember previous journals where we talked about the amazing balance that Nicholas' transplant doctor consistently had with Nicholas, Sheila, and me from a medical and "people" perspective. She has always been so comforting to us, even during very difficult times. (Again, we have been blessed with Nicholas' doctors as stated in previous journals: Nicholas' doctors at all three hospitals have been and are warmly, professionally, and amazingly special to us.) Remember, Nicholas' transplant doctor took Nicholas to his first movie at a theater since his bone marrow transplant. Please refer to the December 4, 2005 journal that shared the movie date.

PRAYING AND LOVING…

Thursday, August 31, 2006 11:59 PM CDT
HELP COMES IN A VARIETY OF WAYS
Last night's journal included several sources of messages that provide directional help, as "the story continues." And tonight, help came through DVDs received from The Children's Hospital-Denver. "A Dad's Journey Through Grief" and "Grieving and Hope." Both were provided with the hope of lessening the isolation that can be felt by parents who have had a child pass…isolation from the world of non-bereaved parents…isolation from family…isolation from friends. The lessons are reminders and reinforces that we, parents, are not alone in our struggles to move forward toward a "new normal."

 

During Nicholas' leukemia journey and now, as the story continues, we often talked about what was so very present in helping to make Nicholas' life and our lives "lively" in the face of what could have soured our spirits and zest for life. God and His blessing Nicholas' life and our lives with you-directly and indirectly-in our lives kindling love enabling us to realize more and more that love begets love. God has always been with us and just the mention of His name provides something felt, warmth & comfort, which calms our hearts from "racing" and soothes our spirits allowing them to purposefully "float." Seemingly, the calming and soothing is so that we are one with Nicholas, one with our family, and all because we solidify our oneness with God.

Thanks continues to be the real word that expresses appreciation, love, and the benefit of joy because of God and God providing you in our lives the ways that you have been and are…

As we call out to God throughout each day, we also call out to Nicholas so that he will ALWAYS know that he is "Never gone, never far, in our hearts and souls is where you are…always close, everyday, every moment in every way." And son, "as we talked about and know through God, we just know that we are in each other's soul…always close, never far…we are together trusting God because He is God and He loves you, your brothers, us, your family and your friends!" (Words to the song "Never Gone" are on the July 27, 2006 journal.)
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Wednesday, August 30, 2006 11:48 PM CDT
COUNSELORS, BOOKS, STORIES…ABOUT GRIEVING have messages to help cope, understand, live… And yet coping, understanding, living… seems to be unpredictable in so many ways. Although it has only been / or has been 97 days since Nicholas passed, missing Nicholas so much easily turns into anguish. The anguish sometimes is momentary and sometimes we are so brokenhearted that the moments are monumental.

Sometimes the sadness opens up to the memories and moments of love helping us to keep moving forward. Sometimes the sadness leaves us in tears opening up to crying. We do not know how the moments to come will be, nor do any of us-really--relative to life seemingly when life is good… without reason to grieve, without the loss of a child.

LIFE IS NOT FAIR, HOWEVER, LIFE IS NOT EVIL-we have so many memories and moments today wherein Nicholas still warms our hearts in ways that will last a lifetime as monumental as we can imagine and with every moment we hope for.

Just today as dad walked to work passing San Francisco City Hall, the sweetness of Nicholas' "being" and the motion of his "ways" from about three years ago warmed dad's heart and life. The memory was of Nicholas LIVING life and giving love to all around him that he knew and came to know. What a blessing from Heaven then and now for us to be able to reflect on those moments about three years ago when Nicholas' Montessori school class rode BART from Lafayette to San Francisco to visit City Hall. Mom was with the class on the field trip and dad (working just a couple blocks away) joined Nicholas, mom, and the class for a few moments of the City Hall tour and for every moment of the lunch in the park.

What a blessing just a moment can be…

What a blessing Nicholas continues to be…

What a legacy Nicholas is leaving and building through the Nicholas Colby Fund…so the story continues.
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Tuesday, August 29, 2006 11:55 PM CDT
ALWAYS LIKE THE DEEP, BEAUTIFUL LOVE FOR A BABY
The last month of Nicholas' life he talked about wanting us to always be able to hold him and carry him like a baby. He wanted to stay small so that we could always do just that (although we told him we always would…no matter what). We do, Nicholas, every day and every moment you are in our arms with our hearts lovingly beating with passion & excitement feeling your beautiful, perfect love illuminating from our every thought about you!

Note: Following is an excerpt from the May 27, 2006 journal speaking about holding, patting, rocking, and loving Nicholas:

"And Nicholas,
-We hold you just the way you like...
-We pat you just the way you like...
-We rock you just the way you like...
-We love looking at you just the way we like...
-We love listening to you just the way we like...
-We love touching you just the way we like...
-We love the flavor of your love and its aroma that is still in our lives...
-We love the flavor of your love that we still taste in every part of our lives...
-And Nicholas, because of you, loving you in every way instantly evokes the radiant love of God flowing within and around your spirit illuminating our lives so deeply that although we do not have a dark place in our bodies or minds-because of God, because of you-we so dearly miss the physical touch of your sunshine in so many ways...and then we feel you in more than so many ways...thank you, son, for being our son and loving us in every single way!"
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Monday, August 28, 2006 11:51 PM CDT
CARRYING ON IS, JUST, DIFFICULT!

THIS EVENING THE BREEZE DID WONDERS IN MANY WAYS
This evening at Nicholas' site we flew a kite as the breeze not only lifted it into the air, the breeze also brought a refreshing sensation to our faces that momentarily lifted our spirits a little bit higher thinking about Nicholas and his touch. We understand that a "new normal" is now the fabric of our lives…but weaving our lives around this "new normal" does not happen just because we recognize it is now the landscape for our lives.

So like a breeze that provides warmth as well as cool moments, "time" delivers to us moments of peace as well as moments of some grief. Like we did during Nicholas' journey, trusting and believing God's love for us will provide the "right" moments and transitions. And always, always remembering and loving Nicholas for his love along with our love of/and for our other boys will fulfill us. The transition is, just, difficult!

PRAYERS FOR "ALL THESE BEAUTIFUL KIDS"
There are several kids navigating some awful medical conditions…prayer for "all these beautiful kids" will reach them and their parents in many ways. Please pray with us for all of them-God knows who they are and we know that parents find strength as well as some comfort to their hearts feeling the love and care indirectly received.
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Sunday, August 27, 2006 11:59 PM CDT
HOW WE ARE DOING
The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (4)

6) Pain in our hearts, stomachs… (4)

NOTE: The August 5, 2006 journal provides foundational information about these scales.

LAKE TAHOE-THINKING ABOUT NICHOLAS AND OUR OTHER THREE BOYS
Being a way for a few days was refreshing; however, it seemed like that long-standing debate about "the glass being half empty or half full." We say this because it was nice to be away and RELAX, and at times being at rest was difficult because our hearts were not at rest…seemingly very tight although we continually move forward knowing Nicholas is loved by God and Nicholas wants us to be okay. Reflecting, sometimes when we would ask Nicholas how he was doing, he would say, "I'm O-KAY" in a reassuring and playful tone.

NICHOLAS WAS NEVER FAR FROM OUR MINDS AS WE THOUGHT ABOUT HOW WE NEED TO BE WITH OUR OTHER BOYS AS WELL.
Following are a few things about Nicholas over the last few days, in reverse order:

Sunday, August 27, 2006
Row boating on Lake Tahoe thinking about the times we were here with our other three boys. And as we were letting our hearts drift in harmony about all of our boys, mom placed her right hand into the water letting her Na Hoku ring splash in the water for Nicholas (if you do not remember the story about this ring, please refer to the August 18, 2006 journal).

Arriving back into Lafayette we first stopped at Nicholas' site. Another surprise as someone had left white roses, and a dolphin necklace placed on the adjacent wing of a cherub figure that already had a Hawaiian lei on the other wing. And there was a baseball left. (Coincidently, we play waffle-ball at Nicholas site every few days alternating with basketball using his Harlem globetrotter's ball, sword fighting, along with other things, and most importantly prayer and thanks for blessings realized everyday).

Gone just two nights but we were never gone from each other's soul…and what a beautiful, peaceful homecoming at his site as we got back into Lafayette. The air was still, the sounds serene and "playful." As most of you know, Nicholas loves to collect rocks. Mom brought three from Lake Tahoe, including one that was heart shaped. Dad brought reflections of the past few days including the rowboat sensations trusting Nicholas already enjoyed them with us as we were rowing "and having fun." Sitting at the bench on his site, hearing kids in the distance, planes above high, birds chirping as they are passing, and the wind chime softly chiming blends beauty of the world...we trust God and believe His word so we, again, are assured that Nicholas is more than okay…he is in Heaven!

Saturday, August 26, 2006
A bike ride along the lake and relaxing at the beach…while relaxing on the beach butterflies casually "danced" by (so it seemed by their movement) as we pondered the past, today, and our tomorrows. And yes, we both slept on the beach.

Friday, August 25, 2006
At Nicholas' site before we left for Lake Tahoe. At 12:52 PM (thinking about 3 months ago today) a hummingbird floated by and hovered over a flower at Nicholas' site. Then a monarch butterfly drifted by followed by several hawks soaring over Nicholas' site and the canyon of Briones Regional Park. (The hawks are always soaring around the site and it is very majestic.) And a white "wish" floated by. (You know those white fuzzy things that have lots of tiny seeds looks like a sphere; we call them a "wish" because kids seem to always blow them to make a wish and it was a favorite thing for Nicholas to do.)

At Lake Tahoe. The silvery-blue filter backdrop of the surrounding shadowy mountains and serene-muted sky was simply harmonious and majestic as the lake glistened. The crashing of the waves joined in to complete the harmonious setting, so we thought. And then a momma duck and 2 little ducklings floated by before coming ashore and walking at our feet. This completed the harmonious setting as the momma sat looking across the lake at the reflection of the sun against the water...the 2 little ducklings were adventurous checking everything out seemingly "playing and having fun."
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Thursday, August 24, 2006 11:32 PM CDT
GONE FOR A COUPLE OF NIGHTS
Sheila and I are planning to be gone for a couple nights beginning tomorrow, returning Sunday evening. We will be at Nicholas's site tomorrow morning and again Sunday evening so Saturday will mark the first day that we will have been away from the Oakmont site. Through God we trust that Nicholas is with us everywhere that we are and that through God Nicholas always knows and feels our love. (Tomorrow, Friday, marks 3 months since May 25, 2006) Remember Nicholas is "…Never gone, never far. In my heart is where you are. Always close, everyday…"

Thank you for your prayers for Nicholas and being with us in the ways that you have been. We welcome your continued Guestbook entries even while we will be away for a couple of nights because we will be able to view them (although we may not be able to post a journal entry until Sunday night). And on Sunday we will be back with you and collectively "the story continues."

A FEW GIFTS OF LOVE ABOUT NICHOLAS
Following is a recap of a few things given to us about Nicholas. As we recap the items we realized that there is a common flavor about children making us think about the Nicholas Colby Fund's tagline, "Helping Children Be Children."

- PEWTER CROSS PLACED OVER NICHOLAS' OAKMONT SITE: And written on the cross is "Defend oh Lord this child with Thy Heavenly Grace that he may continue Thine forever."

- CHILD SCULPTURE PLACED AT NICHOLAS' OAKMONT SITE: Almost like a silhouette in terms of an outline without specific features (angelic appearance), holding a metal bar that extends up curving into a circle with the word, "HOPE," encircled.

- SAINT NICHOLAS PIN & CARD: With the card reading, "God, Our Father, we pray that through the intercession (prayer) of St. Nicholas you will protect our children. Keep them safe from harm and help them grow and become worthy of Your sight. Give them strength to keep their faith in You, and to keep alive their joy in Your creation. Through Jesus Christ our Lord. Amen." (The name "Santa Claus" originated from St. Nicholas and St. Nicholas is the patron of children.)

- CARD WITH PICTURE OF THE "PIETA" BY MICHELANGELO
This card was given to us reading, "The Holy Sacrifice of the Mass will be offered for the repose (resting) of the soul of our darling Nicholas." For those of you who were physically present with us at Stanford-Lucile Packard Children's Hospital on May 25, 2006, you may remember us holding Nicholas in our arms for a long period of time after he passed. This card had special meaning to the giver of the card because they said as we were holding Nicholas it reminded them of Michelangelo's "Pieta."
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Wednesday, August 23, 2006 11:59 PM CDT
DIFFICULT WEEK
While we are truly glad to take action on "Helping Children Be Children," at the beginning, middle, and end of each day Nicholas is physically not with us and it hurts so, so much. Yes, we do, we really do, feel and sense Nicholas in virtually every thought throughout each moment of the day. Yes, we trust God's love and perfect care for Nicholas as well as all of us who love Him. But this week, almost as much as the first week after Nicholas passed, has been a very difficult week for mom & dad.

We open our arms, hearts, and soul to God welcoming Him in on every aspect of our lives. And we really want Nicholas to see and feel that we are okay because Nicholas never wanted to see us sad.

Remember the night Nicholas was diagnosed and mom started to cry? Following is part of that night's recap as Nicholas' rays of sunshine came through even during that devastating moment although he was not sure what it all meant: "As mom and dad cling to Nicholas and with every emotion swirling, all attempts of focus gave way to crying for mom and dad tightly holding on-Nicholas reaches to mom, touches her, and says 'don't worry about me, I'll be alright.'" (November 19, 2004 journal)

Along with not wanting us to be sad, Nicholas' love for God was so beautiful throughout the ups and downs. Remember the many times Nicholas kept God as his "rock"? Following is an example: "'Daddy, I know God loves me and he is taking care of me. But daddy, I want the healing to be real, right now, please. Will He do it?' This was one of many conversations Nicholas shared with mom & dad throughout the day. Literally, throughout the day Nicholas would stop and say, 'Will you read some more of the Bible to me?' We read from The Children's Bible and the Bible." (November 7, 2005 journal)

You know, understanding all of the above, we just miss Nicholas! Sometimes, it seems like Nicholas being gone is just temporary…we expect to physically see him, physically interacting with him, and enjoying the love that always radiates from Nicholas…

BUT GOD IS GOD AND WE TRUST & BELIEVE...
And now, like so many times, we continue to lean on God for His help, for His love, for His everything. We cannot do this by ourselves!

So now as we prepare for bed, we continue prayers thanking God for His love and the many blessings Nicholas received along the way. And we are thankful for the words of the song, "Never Gone," that are shared on the July 27, 2006 journal along with the song, "If You Could See Me Now," that is shared on the July 31, 2006 journal. We do feel and sense Nicholas' touch and love radiating within and around us. It always will because nothing can stop the love that God generates! We trust and believe...as we lean completely on God this understanding should consume our thinking and help us along the way.
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Tuesday, August 22, 2006 11:09 PM CDT
QUOTES ABOUT NICHOLAS AND THE NICHOLAS COLBY FUND "HELPING CHILDREN BE CHILDREN"
Linking back to the August 16, 2006 and August 10, 2006 journal entries, following are a few quotes about the Nicholas Colby Fund's first event. Remember, the Fund's tag line is "Helping Children Be Children!"

5 families from Children's Hospital Oakland enjoyed the Ringling Bros. and Barnum & Bailey circus in a suite secured for the Nicholas Colby Fund:

- A mom of one of the patients who went to the circus as a Nicholas Colby Fund guest said, "I was very moved by how well taken care of we were."

- " People were very attentive, they took us to the elevator, showed us where the suite was for all of us. At the end of the night I told someone we couldn't get on the crowded elevator because the children had cancer and they made sure we rode an elevator by ourselves."

- The following quote is about Irving, one of the patients who got to experience a circus for the first time. "Irving got so distracted by the show that he forgot his pain and forgot to go the bathroom." (Which for him is quite an ordeal, said a social worker)

- "He got lost in the fantasy of the evening and all of the pain disappeared"

- The social worker that helped us get tickets to the patients/families said the following about her letting one of the mothers know the tag line (motto) of the Nicholas Colby Fund, "Helping Children Be Children!" "When I told her your motto she said, "Well, they obtained their objective!"
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Monday, August 21, 2006 11:39 PM CDT
NICHOLAS, NICHOLAS, NICHOLAS, NICHOLAS, NICHOLAS, NICHOLAS
We thank God for Nicholas, Chris, Tim, Matt and His love enabling us to choose how we live. And we thank God for his blessing everyday as we choose to live loving God.

LISTENING. Not just just to others, also listening outside to the sounds of our surroundings: wind blowing through leaves, pine needles, and/or branches of trees, through plants, wind chimes...

LOOKING. Not just at others but to things outside around us. Gaze for a period of time and what do you see? We imagine you will see things not first noticed.

REFLECTING. We spend a lot of time reflecting, listening and looking to/at what is around us. We reflect and are happy to feel & know God's love and Nicholas' love & happiness. We reflect and sometimes sadness overcomes our forward thinking...we will never, ever forget all the physical beauty Nicholas brought into our lives and, no question, into this world. Physical not limited to what we have seen...including what we feel and know more than before that Nicholas' angelic ways were truly gifts of love that can never, ever be taken away. We constantly listen and look for Nicholas' whisper, his words, his laugh, his touch…

And, our forward thinking is rooted in Nicholas because his gifts...we believe from what we have experienced, heard, and seen...are gifts of love to beget love. We listen, look, and love because love seems to be the breath of life and there are examples of its purity and perfection all around us.

We miss you, Nicholas; we love you, Nicholas; we are full of love because of you, Nicholas; and our lives are better because of you, Nicholas and all these beautiful kids navigating terrible ups & downs in their lives. And amazingly you and these kids show all of us that love does not diminish life...it gives life in ways we sometimes do not seem to listen for, look to, or reflect on so that we, too, can become "better" tomorrow than we are today.

"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE HAS ENDED FOR NOW
The Golden State Warriors Foundation and NBA Cares have just demonstrated love and support in a beautiful, caring way. It is especially pleasing because of Nicholas' passion for the Warriors and Thunder (their mascot). In a few days we should receive an update about the auction they just put on for the Nicholas Colby Fund, raising $920.00.

Although we will, certainly, personally thank The Warriors, if you would like to express your appreciation for their support of Nicholas before, during his journey, and now, please address your correspondence to:

1) Robert Rowell
2) Neda Barrie and Jo-Marie Garber
Golden State Warriors
Warriors Executive Office
1011 Broadway
Oakland, CA 94607

3) Christopher Cohan
Warriors Foundation
Golden State Warriors
1011 Broadway
Oakland, CA 94607

4) NBA Cares
The National Basketball Association
645 Fifth Avenue
New York, New York 10022
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Sunday, August 20, 2006 11:59 PM CDT
ONLY A FEW HOURS REMAINING:
"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction is scheduled to close tomorrow night at 5:00 PM (Monday).

BEAUTIFUL DAY IN MANY WAYS-GOD REALLY IS GOOD
Our wedding anniversary…one of Nicholas' favorite spots…and family dinner made for a beautiful day. Sheila and I were in San Francisco today for our wedding anniversary…brunch at Hotel Nikko for KKSF radio's Smooth Jazz Sunday Brunch. Hotel "Nikko!"

After brunch we drove out to the Pacific Ocean and parked along Ocean Beach, a few miles south of the Cliff House. We drove to the spot Nicholas enjoyed on January 30, 2005, a few months before his bone marrow transplant. Remember, Nicholas loves the ocean, the waves, the birds, the breeze, the sky, and the beautiful sunsets at the ocean. Please access the first album (titled "Few months before diagnosis to day 79") below under links and go to the last few pictures with Nicholas in a red shirt…and you will see an awesome sunset with Nicholas & mom revealing love!

After spending time at the beach, we drove back to Lafayette and relaxed for a while at Nicholas' site. The sky, breeze, and everything about life were simply beautiful today…and our hearts were full of beautiful thoughts of Nicholas and beautiful thoughts spiritually connected "with" Nicholas. And because Nicholas and dad had always talked about "knowing" that we would forever feel each other in our hearts and souls…we just know that Nicholas is with mom, dad, his brothers, his grandparents, his uncles, aunts, cousins, schoolmates, school teachers, friends, and all of you who continue to be directly and indirectly in our lives. And we are all in Nicholas' soul. Love creates beautiful days…

Remember the book, "The Next Place," that we read to Nicholas on May 25, 2006? Following are some of the warm, touching words from the book that is shared on the May 26, 2006 journal:

"…I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one, and the circle of our spirits will shine brighter than the sun.

"I will cherish all the friendship I was fortunate to find, all the love and all the laughter in the place I leave behind.

"All these good things will go with me. They will make my spirit glow. And that light will shine forever in the next place that I go."

And for dinner, well we had one of Nicholas' favorite meals as well as a favorite of our other sons. As we write about dinner we realize that the significance here is just that we were sitting down together.

SURPRISE
This evening we were surprised by something left on our front porch near one of Nicholas "hand prints." The surprise was colorful blocks joined together with letters on each spelling out: B E L I E V E. And connected to the blocks, above, on a ceramic sheet is a statement reading: "things happen for a reason." So while we physically miss Nicholas so, so much…he is loved, he is with God, he is perfect, he is pure, and he is surrounded by everything good. We trust that things happen for a reason…and because of God we do believe…

HOW WE ARE DOING
The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (4)

6) Pain in our hearts, stomachs… (4)

NOTE: The August 5, 2006 journal provides foundational information about these scales.

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Saturday, August 19, 2006 11:59 PM CDT
2 DAYS REMAINING:
"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction is coming to a close.

LIFE
It seems like everything in life, well at least the perception that the prevailing pattern of thought tries to create, is measured in terms of quantity with a flavor of competition. Things like having the most of something, going the farthest…, doing more of something, etc.

And then along comes something "out of the mouths of babes" or something simply done by someone…a child, an adult, or a person anywhere at anytime. You know where this is going so I will simply recap in two quotes.

- One quote by someone new to Nicholas who came across Nicholas' CaringBridge site sometime before or around the time Nicholas passed: "…his seemed a life short of nothing but time…"

- And one quote from someone who has known Sheila and me for a long time…met Nicholas during the journey spending a few moments with Nicholas at the Lafayette Reservoir along with several other colleagues: "…life is measured by the quality, not quantity."

God blessed Nicholas with quality neighbors, friends, schoolmates, schoolteachers & staff and so many people and experiences throughout his life. Nicholas said things and did things that even today enhances our lives-and we hope your lives too because through God and so many of you, Nicholas' life was one of love every step of the way. Nicholas' life was born from love generating unquestioned quality. So we are comforted knowing that Nicholas' life was short of nothing but time!
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Friday, August 18, 2006 11:59 PM CDT
3 DAYS REMAINING:
"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction is coming to a close.

SINGING, DANCING AND THINKING
You know, Nicholas loved when we carried him and held him close. He loved, just as much, to hold us close and pat our backs as we patted his. Like many kids as well as adults, Nicholas loved to sing and dance.

Singing was to songs on CDs or TV/Movie theme songs. Dancing, Nicholas loved to dance at musical beats heard in his ears or his heart.

MESSAGE FROM KJ
You remember KJ, Nicholas' Ronald McDonald House buddy who became our family friend, he was a big influence on Nicholas enjoying music and dancing even more.

Guess what, early this month KJ won a championship in a USA and World competition for dancing. Here is what KJ shared with Sheila and me after the competition. "During the World Championships, when we were about to go on stage, our crew said a team prayer, lead by myself. One of our dancers, Dariane, lost her father (Ramone) last December (he was killed), so we said a prayer in honor of him. And when I led the prayer, I said, 'we dedicate this dance to Ramone and Nicholas.'"

"When I went back on stage to get the gold medal, I pointed up to God and Nicholas. I dedicated my gold medal to Nicholas that night. Nicholas will always be in my heart forever. Because he told me, 'he wanted to dance like me.'"

DANCING WITH NICHOLAS TODAY
So today, like mostly everyday with Nicholas, at his site looking over the Briones Regional Park and up at the sun…I closed my eyes, opened my arms welcoming Nicholas in. I then began to think of two of Nicholas' favorite songs: "Dance With My Father" by Luther Vandross, and "Step In The Name Of Love" by R Kelly.

As I thought about the lyrics from those songs I let what I was hearing and feeling in my heart guide my motion…my motion and emotions of embracing Nicholas and then dancing with him. It felt so good and through Nicholas-even now-a smile and love came over me in ways that only Nicholas…because of God…could generate. Today was a good day.

Following are excerpts of the two songs:

"Dance With My Father" by Luther Vandross

Back when I was a child, before life removed all the innocence
My father would lift me high and dance with my mother and me and then
Spin me around 'til I fell asleep

Then up the stairs he would carry me
And I knew for sure, I was loved
If I could get another chance, another walk, another dance with him
I'd play a song that would never, ever end
How I'd love, love, love
To dance with my father again…

"Step In The Name Of Love" by R Kelly
(Oh, how Nicholas loved to sing the following part of this song!)

Step, step, side to side
Round and round, dip it down
Separate, bring it back
Now let me see you do the love slide…
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Friday, August 18, 2006 2:15 AM CDT
4 DAYS REMAINING-"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction is coming to a close.

LOVING MESSAGE FROM NICHOLAS?
Looking north from Nicholas' Oakmont site this morning there were 3 formation of clouds near the horizon:

CLOUD ON THE LEFT - I could not determine a clear figure for this cloud, however, it resembled a fire burst shooting upward or a fireworks display shooting upward.

CLOUD IN THE MIDDLE - Stunningly, the shape was a right hand with all fingers and a thumb, seemingly giving a soft high-five, a gentle wave hello, and/or message to "be still and calm" because I am okay.

CLOUD ON THE RIGHT - This cloud was shocking. It had the crisp shape of a butterfly and Nicholas enjoyed butterflies. (A few years ago Nicholas "raised" butterflies from the larvae stage on up to the beautiful butterfly stage in a butterfly container...to their release. A picture of Nicholas releasing one can be seen on the Video Tribute that will be on the Nicholas Colby Fund site-we will let you know on this CaringBridge site when it can be experienced again via a link on the Fund's site.)

We have seen what we have seen, we feel what we feel, we love God and Nicholas trusting Nicholas and God will love us in an array of ways...love begets love and will manifest love in our lives, our hearts, and our souls. So maybe this was love finding another way to embrace us.

HOKU AND A RING FOR MOM
(Remember, Hoku was the name of the dolphin Nicholas experienced during our December 15 - 22, 2006 trip to Hawaii. Please refer to the December 16, 2005 journal that is imbedded under the December 22 heading. Also, you can see Nicholas with Hoku December 19, 2005 on the third album below under Links.)

This past Mother's Day in Denver, two of our other three boys joined us in Denver for Mother's Day. We talked with Nicholas about a gift to select for Sheila and the other boys and I purchased a purse to compliment other items she already has. When Sheila opened the gift, Nicholas' expression was crystal clear…he did not like the gift we selected. Sheila asked Nicholas if he wanted her to take the gift back, and he said, "yes, you should take it back." Sheila had seen this beautiful ring from the Hawaiian Jeweler, Na Hoku, and had wanted to get it since our trip to Oahu for Nicholas' Make-A-Wish trip. So, she asked him if he wanted her to go and pick up that ring and he said, "yes."

Last night Sheila went to a mall that happened to have that same jeweler and picked up the ring. She felt an instant connection to Nicholas when she put on. Today she decided to look up some information on their website, without knowing their story beforehand, and found it so amazing and powerful how so many things linked together-It was meant for her to get that ring!

"The Na Hoku Story

"Na Hoku is Hawaiian for "stars". Once used by voyaging Polynesians as guides on their journeys throughout the Pacific. Today, Na Hoku is your guide to the essence of Hawaiian and Island Lifestyle captured in our collection of fine jewelry. Those who wear them will themselves glitter and shine for all to admire.

"Exotic. Tropical. Elegant. Na Hoku jewelry is designed to accent the individuality, taste and style of the woman who wears it. Every piece in our collection is a link to a moment in time, an intimate memory, or secret desire."

This is amazing because of the various connections: Nicholas loved Hawaii before and after his diagnosis; Nicholas loved dolphins; it was common for us to use star synonymously with Nicholas before and after the diagnosis; the name of the dolphin our family swam with in Oahu is Hoku and Hoku means star…

How fitting. Aside from our natural links with Nicholas, from our perspective the story of Na Hoku provides a clear link to Nicholas. And this morning's messages in the clouds seem so appropriate coupled with the Na Hoku story Sheila learned today.

Thank you, Nicholas-we love you…(and mommy loves her ring)!
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Wednesday, August 16, 2006 11:59 PM CDT
NICHOLAS AND THE NICHOLAS COLBY FUND'S FIRST EVENT
Referring to last Thursday's journal (August 10), the Nicholas Colby Fund's first event takes place tomorrow night at the Oakland Coliseum when 5 families from Children's Hospital Oakland will enjoy the Ringling Bros. and Barnum & Bailey circus in a suite secured for the Nicholas Colby Fund. Although the non-profit status has been secured and other business aspects of the Nicholas Colby Fund are being completed, the opportunity toward "Helping Children Be Children" now was determined so that is just what the Fund is doing.

As stated last week, "Nicholas, truly, was happy to help others and he is still doing just that so while nothing compares to God's graces that surrounds him today, Nicholas must be smiling knowing that he is helping to put smiles on the faces of others. As one CHO representative said, "…this will be sooo wonderful for these families-truly an opportunity they would not otherwise have."

More information will soon be shared about an Oakland Coliseum suite secured for the Nicholas Colby Fund and other events at the Coliseum, "Helping Children Be Children."

Also, stay tuned to hear about a SPECIAL WHEELCHAIR secured by the Nicholas Colby Fund that is helping a person enjoy his passion.

LOGO: The Nicholas Colby Fund logo has been under development and should be ready to be unveiled by September 1, 2006.

THANK YOU LETTERS: Gina Baker, Sheila, me, and the Nicholas Colby Fund are more than thankful for the love and care expressed through donations to the Nicholas Colby Fund! I say more than thankful because your support is truly "Helping Children Be Children." Thank You letters will lovingly be prepared and sent with the Nicholas Colby Fund logo. We think you will feel Nicholas' touch softly expressed through the logo generating a sense of spirituality, creativity, and hope.

NICHOLAS COLBY FUND WEBSITE: Please understand that while the foundation/frame/platform of the new website is in place thanks to another dear friend Reda Athanasios, his company Learning Technology Partners, and Luigi DiGrande, there has been an emotional element Sheila and I are navigating until we are ready to transition to the new site. Of course, having the logo is one of the developing business steps and that step should be completed by September 1. Most likely it will be a gradual transition from CaringBridge and we will, certainly, keep all of you informed through the CaringBridge site. Please stay with us because your direct and indirect presence (including Guestbook entries) is lovingly helping us along the way relative to our sweet Nicholas, and is providing a level of comfort helping us to be positioned to "Helping Children Be Children" through Nicholas.

5 DAYS AND COUNTING-"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction soon comes to a close.
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Tuesday, August 15, 2006 11:59 PM CDT
NICHOLAS' FAVORITES
Capturing and maintaining a list of favorite things Sheila and our boys like has been a way to track what they like on a variety of topics. Following is the last list of Nicholas' favorites. Of course, as you are listening to Nicholas' Song-Of Love, playing in the background on the Home Page, you will hear other things that are his favorites (words to the song are on the September 7, 2005 journal).

APPETIZERS:
California rolls (crab, avocado, sea weed, and rice)
Carrots and ranch dressing
Chicken noodle soup
Chips & salsa
Crab cakes
Meatballs
Miso soup with tofu

SALADS:
Hearts of Romaine with tomatoes and thousand-island dressing (homemade with eggs)

FRUIT:
Peaches
Pineapples

VEGETABLES:
Edamame
Green beans
Corn on the cob

ENTREES:
Shrimp tempura
Chicken teriyaki
Salmon
Shrimp fried rice
Spaghetti

DESSERTS:
Maple oat scones (from Starbucks)
Maple nut ice cream
Mint chocolate chip ice cream
Strawberry ice cream
Vanilla ice cream

Lollypops

DRINKS:
Orange mango Nantucket
Martinelli's sparkling apple juice
Limonata
Ginger ale
Root beer
Hot chocolate

COLORS:
Blue
Red
Yellow
Orange
Green
Purple

MUSIC/SONGS:
Disney (Like "Because You Live" by Jesse McCartney, "It's A Small World After All," and theme songs from shows on Disney, Nichelodeon, and Toon Town channels)
R&B ("Step In The Name Of Love" by R Kelly, "Lets Get It Started" by Black Eyed Peas, "Dance With My Father" by Luther Vandross...)
Christmas

TYPES OF MOVIES:
Comedy
Disney
"How The Grinch Stole Christmas"
"Space Jam"
"Spider-Man 1" and "Spider-Man 2"
"Mulan I" and "Mulan II"
"Spy-Kid" (all of them)
"Scooby-Doo" (all of them)
"Snow Dogs"

TV SHOWS:
Disney's "That's So Raven"
Disney's "Proud Family"
Disney's "Phil of the Future"
Disney's "Sister, Sister"
Toon Towns "Camp Lazlo"
Food Channel's "Rachel Ray" (He was hooked when mom & Nicholas watched Rachel Ray's "$40 a Day" program, when she went to Oahu, Hawaii on that particular show and took her first surf lesson.)

GAMES:
Play Station 2 (PS2-and "all" of the games starting with these: Loved them all, however, the following he played the most: Spider-Man II, NBA Street, Matrix, Jimmy Neutron-Attack of the Twonkies, King Kong, Nick Toons Unite... Narnia was the last one Nicholas played.)
Monopoly Jr.
Candy Land
Hi Ho Cherry O
Sorry
Whonu
Go Fish (card game)
Slap Jack (card game)
Wig Out (card game)

TOYS:
Action Figures: Power Rangers, Spider-Man, Peter Pan...
Stuffed Animals/Characters: Bears, Dolphins, Dogs (he liked black Labradors), Thunder from the Golden State Warriors...you name it and it is probably on his bed

BOOKS: (Nicholas loved to read all the time)
Mickey's Haunted Mansion
I Want To Be Somebody New
The Children's Bible
(All Children's books)

And now we trust that a favorite book is "The Next Place" that we read to Nicholas on May 25, 2006 (please refer to the May 26, 2006 journal about this book).

SEASON:
(All of them: winter, spring, summer, and fall)

WEATHER:
Sunny
Rainy days (Nicholas said, "Because when it stops raining you could splash in puddles!")

HOLIDAYS:
Easter
Halloween
Christmas

SPORTS:
Basketball
Baseball
Football

Sword fighting

Swimming, Snorkeling

Dancing

Singing

Acting

ITEM OR SYMBOL:
"Money and stuff"

6 DAYS AND COUNTING-"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction soon comes to a close.
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Monday, August 14, 2006 11:04 PM CDT
QUESTIONS OF WHY BUT NO REGRETS
We had/have an angel in Nicholas and as we think about his journey…the ups and downs on the roller coaster and slippery road we often wrote about in these journals, we have no regrets because we know that we were blessed to have had Nicholas in our lives and in our lives today! Nicholas "lived" and loved the experiences in his life that took him near and far, with family, with friends, and to places that he completely enjoyed.

Of course, we do have the questions of why Nicholas was not healed, as we wanted; however, he was no less loved by God-and His love will/is perfectly providing for Nicholas. Thinking about some of the words to the song written on the Home Page above, God is God, so Nicholas is enjoying Jesus, just sitting at His feet.

And with no regrets we are thankful that the team of doctors at Stanford-LPCH as well as The Children's Hospital-Denver prepared us well…to observe and be "out front" of any pain issues. So while Nicholas did experience pain, it was never a suffering type of pain and we are so, so grateful.

While the nurses and doctors at all three hospitals were passionately in tune with "caring" for Nicholas and preparing us, Nicholas focused on our love, God, and caring about others which, we believe, manifested love over-and-over again in Nicholas' life.

7 DAYS AND COUNTING-"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction soon comes to a close.
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Sunday, August 13, 2006 11:21 PM CDT
8 DAYS AND COUNTING-"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction soon comes to a close.

A SONG FROM CHURCH TODAY: "GRACE ALONE"
Ev'ry promise we can make, ev'ry prayer and step of faith,
Ev'ry difference we will make is only by His grace.
Ev'ry mountain we will climb, ev'ry ray of hope we shine,
Ev'ry blessing left behind is only by His grace.

Grace alone, which God supplies; strength unknown He will provide.
Christ in us, our Cornerstone; we will go forth in grace alone.

Ev'ry soul we long to reach, ev'ry heart we hope to teach,
Ev'rywhere we share His peace is only by His grace.
Ev'ry loving word we say, ev'ry tear we wipe away,
Ev'ry sorrow turned to praise is only by His grace.

QUESTION: Reading or singing this song, can you picture the times that Nicholas was living with Grace Alone? From Nicholas' faith, rock climbing (in the third photo album below under Links), sunshine through Nicholas that shined into our hearts, how now we understand that Nicholas was teaching us, and now trusting that he is at peace and "playing and having fun"…

HOW THINGS ARE GOING
The song above that was sung during church today was one of several along with a poignant message of "connecting." And I was thinking about how beautifully Nicholas connected with God even in the midst of some very serious, significant challenges. Nicholas never, ever let go of trusting and believing God's love although there were the times when Nicholas would cry, pray, and say to God, "God, I love you and I am doing all the things for you. Why don't you heal me…" (Please see the journals from November 18 - 20, 2005) Amazingly, in the midst of pain or crying Nicholas would find ways to have at least an okay time…and he found ways to have abounding joy-what a blessing-thank you God!

Our hearts were filled with grace during and after church (it is not going to church that fills our heart with grace, however, surrounded by lots of love for God sure does help accelerate the spirit of God felt…). On the way home, well to Nicholas' site first, lifting our hearts to God in song and prayer also felt so good. And, then there were sad moments that brought tears and more prayer as we cried out to God, even now, to help us because it is still not easy not having Nicholas physically with us. Just like when we would hold Nicholas, carrying him in our arms while crying and praying together, we too were comforted today as we talked with God.

The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (8)

6) Pain in our hearts, stomachs… (4)

NOTE: The August 5, 2006 journal provides foundational information about these scales.
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Saturday, August 12, 2006 11:59 PM CDT
CHANGED FOREVER
We remember November 19, 2004 when Nicholas was diagnosed. A lead doctor said, "…your lives will be changed forever." We really did not know what he meant because all that we were going to do, all the time, was sustain our love for Nicholas and sustain our love for God.

Reflecting back on the weeks, months, and the 1 ½ years navigating the journey, we are grateful that through God our love accelerated, changed forever each and every day in positive ways. It would seem impossible that the profound love from a mother and father could grow any deeper; however, each and every day through God the depth and breadth of our love grew to new heights helping us to be parents providing the greatest, positive impact on a child.

Our lives did change forever, each day and step of the way. Reflecting back we realize that we faced awful challenges, impacts, and choices-this is what the lead doctor meant by "your lives will be changed forever." However, choosing to love, be loved, and grow in Love generated positive impacts on our lives, our hearts, and our souls. And the challenges, we are still overcoming them for Nicholas and all these beautiful kids, with God-and our amazing son, Nicholas-as our guides.

So while we are changed forever, we fight the sadness in favor of the love that Nicholas was able to experience, feel, and share during the journey and now as the journey continues with Nicholas' spirit changing lives for the better today, for tomorrow, and all of the tomorrows.

9 DAYS AND COUNTING-"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction soon comes to a close.
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Friday, August 11, 2006 11:59 PM CDT
WHAT DOES IT ALL MEAN
It is with a heavy heart that as it beats we are 1) sad missing Nicholas so, so much on one side and 2) lifted up with a rhythmic beat on the other side trusting God's love. And we smile knowing that Nicholas' life, like the lives of so many of these beautiful kids, is being celebrated everyday in an array of ways representing how all of you show up in our lives…in the ways that you do (direct and indirect, near and far).

As one aunt has always said, "…there is just something about Nicholas that is so touching and makes you love him."

A school administrator said, "We just knew from the very first day we met Nicholas that he was lovingly unique." And an administrator over a year later said, "Whatever Nicholas was doing, he would never hesitate to stop if another child needed some help unlike others who would step around a peer rather than stopping to lend a hand. I know this is one reason so many were drawn to Nicholas and so many will continue to be drawn to him."

I guess we all have unique purposes and we understand more and more that God was guiding Nicholas for a unique purpose from Nicholas' creation to transcending back to God. Perhaps for every one of us our purpose toward understanding is to live life with love, getting closer-and-closer to the purpose everyday…and when it is time to really understand the purpose…we all will.

10 DAYS AND COUNTING-"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction soon comes to a close.
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Thursday, August 10, 2006 11:44 PM CDT
CIRCUS AND NICHOLAS "HELPING CHILDREN BE CHILDREN"
The Nicholas Colby Fund is "Helping Children Be Children" via the Nicholas Colby Fund. I'm sure you remember through either personal interactions with Nicholas or through this CaringBridge site, stories recounting Nicholas' amazing passion for caring about others. From spontaneously giving one of his teddy bears to a fellow patient who was crying when Nicholas himself was a patient strolling down the halls with mom & dad at Children's Hospital Oakland (CHO)…to using his money while a patient at Stanford-Lucile Packard Children's Hospital to buy a gift for a former patient coming to visit him…to regularly inviting neighbors and cousins over to our home for play-dates to share and enjoy times that kids create.

As stated under the photo above on this Home Page, Nicholas' spirit, love, and caring about others is vibrantly living through the Nicholas Colby Fund "Helping Children Be Children." Through the Nicholas Colby Fund, five (5) patients from CHO and their families will hear, "Ladies and gentlemen, children of all ages, step right up and meet some of the most remarkable performers The Greatest Show On Earth® has ever known, and explore the rich history of America's Living National Treasure®." Yes, it is the Ringling Bros. and Barnum & Bailey circus and the Nicholas Colby Fund is sending these five families to the circus at the Oakland Coliseum next Thursday for them to enjoy the excitement and wonder in a private suite.

"IF I CAN HELP SOMEBODY"
Remember, the Celebration of Nicholas' Life on June 2, 2006? Do you remember the song that was sung, "If I Can Help Somebody" (recapped on the June 14, 2006 journal entry)?

If I can help as I pass along
If I cheer somebody with a word or song
If I can show somebody he is traveling wrong
Then my living shall not be in vain

If I can do my duty as a good man ought
If I can bring back beauty to world of wrought
If I can spread loves message that the master taught
Then my living shall not be in vain

Then my living shall not be in vain
Then my living shall not be in vain
If I can help somebody as I pass along
Then my living shall not be in vain

NICHOLAS AND WHAT CHO SAID ABOUT THE CIRCUS
Nicholas, truly, was happy to help others and he is still doing just that so while nothing compares to God's graces that surrounds him today, Nicholas should be smiling knowing that he is helping to put smiles on the faces of others. As one CHO representative said, "…this will be sooo wonderful for these families-truly an opportunity they would not otherwise have."

DIFFICULT, OKAY, BLESSINGS
Today was somewhat a difficult day because of things seen that triggered sad thoughts. But today was okay because we just know that God's love for Nicholas is also His love for us. And it was a blessed today to have talked with several families who have been so close to Nicholas and mom & dad along this journey. A few words of hello and expressions of love does wonders for our hearts (we are blessed to have all of you in our lives directly and indirectly).

11 DAYS AND COUNTING-"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction soon comes to a close.
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Wednesday, August 9, 2006 11:59 PM CDT
DID YOU SEE THE MOON TONIGHT?
What we saw in the moon tonight might sound surreal; however, you know that Nicholas loves nature, the sun, the stars, the moon, etc. In fact, we have talked about these things many times throughout Nicholas' journey before May 25, 2006 and afterwards. Nature is one of the reasons his spot at Oakmont Memorial Park is so fitting (have you seen the third picture under the current View Photos, or the last several pictures on the third album below under Links?). And on the Home Page we talk about Nicholas' Star In The Sky that was established through the International Star Registry.

Well, tonight as we were looking at the full moon perhaps we were seeing what we wanted to see.

WHAT WE SAW (Thanking God for providing love to us in such an amazingly, special way!)
We saw Nicholas' face: his eyes, his nose, and his mouth almost like the "have a nice day" pictures of the yellow smiling face. And amazingly, a few times it appeared that what we saw as his mouth, it moved. Perhaps the moving of the mouth were reflections or something else that deals with light and distance. However, time and time again as we looked at the moon it was Nicholas' face we saw and the movement of his mouth like he was saying something loving... It was just like his expression in the picture taken at The Children's Hospital-Denver on May 23, 2006. (The picture referenced is on the third album below under Links, the caption on the picture reads: "No words are needed to speak and feel...everything good...") Coincidently, this is the picture we had "cropped" so that it is just Nicholas' face and it was scanned onto a heart-shape marble piece that will soon be on Nicholas' marker at his site.

Without thinking further about what it was we saw and see in the moon at this moment, we just thank God for providing love to us in such amazingly, special ways. We were full of joy and some sadness. And full of joy again feeling Nicholas' presence and seeing him as pure, perfect, and spiritually full of happiness in every sense because he is with us and we are with him…we, including Nicholas, "just know." Over and over, forever, we trust God and therefore Nicholas is thankfully in the greatest hands. Remember the song, "Never Gone," we talked about and shared the words to on the July 27, 2006 journal? Some of the words are:

Though the distance that's between us
Now may seem to be too far
It will never separate us
Deep inside I know you are

Never gone, never far
In my heart is where you are
Always close, everyday

12 DAYS AND COUNTING-"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction soon comes to a close.
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Tuesday, August 8, 2006 11:59 PM CDT
13 DAYS AND COUNTING-"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction soon comes to a close.

EMOTIONAL ROLLER COASTER
Nicholas was simply amazing how he navigated the leukemia and bone marrow transplant roller coaster! We find ourselves on an emotional roller coaster and feeling so many emotions all at once is overwhelming.

We feel the presence of Nicholas and God and this really helps. And we think about Nicholas wanting us to hold him, to pat him…(examples referenced in the May 1, 2006 and May 27, 2006 journals). Here too, we are blessed with God's love enabling us to lovingly "hold" Nicholas-even now-in our hearts and souls.
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Monday, August 7, 2006 11:21 PM CDT
14 DAYS AND COUNTING-"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction soon comes to a close.

HOW THINGS ARE GOING
The "faces pain scale" measuring pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale, modified to capture several dimensions for an overall view instead of just the correlation of 0 - 10 for pain.
- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for views 5 - 6: Uses the above 0 - 10 measurements.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (6)

6) Pain in our hearts, stomachs… (8)

NOTE: The August 5, 2006 journal provides foundational information about these scales.
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Sunday, August 6, 2006 11:04 PM CDT
LOVE AND LEARNING
Never, ever forgetting Nicholas will be EASY because his love shined so brightly that it produced an amazing glow in our hearts, and we suspect yours, that will never, ever become dim. What may be HARD, however, is sustaining what we learned along Nicholas' journey. We say hard because some of the lessons were connected to difficult situations. Situations like feeling pain but loving, trusting, and believing God's love and spirit to manifest in and around himself and God did deliver blessings over and over. And situations like Nicholas not feeling so well because of the leukemia process, but he received the strength to care about others who were and were not going through difficult situations such as his.

So while it may seem hard for us to reflect on the difficult moments, there is no question that God was loving Nicholas every step of the way, so along with sustaining what we learned, we are recognizing and sustaining lessons we are still learning because of Nicholas, because of God, because of all these beautiful kids.

15 DAYS AND COUNTING-"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction soon comes to a close.
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Saturday, August 5, 2006 11:59 PM CDT
GUIDING FACES
We often thought about those pain charts in medical offices that have 6 pictures of faces with expressions to help describe a patient's feelings. Remember these, the "faces pain scale" measures pain intensity from no pain (0) to excruciating pain (10) for a 0, 2, 4, 6, 8, 10 scale. We thought about this chart in terms of how we are feeling these days because sometimes like a child it is just too difficult to describe.

However, we think of the charts in several dimensions providing an overall view and instead of the correlation of 0 - 10 for pain, we think of an A and B scale that includes pain (below).

- Scale A for views 1 - 4: Uses a smiling face, no expression, and sad face.
- Scale B for view 5 - 6: Uses the described 0 - 10 measurements.

For mom & dad, the #1 view governs everything (all scales at least how we describe them) through God's omnipotence, omnipresence, and omniscience.

1) Our outlook with God as our guide, shield, protector, teacher, spirit, love… (smiling)

2) Trusting, believing, knowing Nicholas is loved by God so there is nothing that he is lacking… (smiling)

3) Love to/from our other boys, family, friends… (smiling)

4) Source of love and support (smiling)

5) Difficulty getting through the day (4)

6) Pain in our hearts, stomachs… (6)

Now that we did this, it would have been simpler to recognize that God's love and spirit is fulfilling all of us in ways that we may not even understand right now-and forever. And that God is shining a light on our physical pain for His love to manifest love no matter where it resides within us…and helping us realize that "there is no spot where God is not."

ONE OF NICHOLAS' COUSINS BROUGHT SMILES TO OUR FACES
Today one of Nicholas' cousins spent the afternoon and night with us and it was so nice to be "playing and having fun" the way Nicholas always enjoyed and does now. From swimming to even watching Nicholas' favorite channel-Disney, we had touches of love massaging our hearts.

16 DAYS AND COUNTING-"WARRIORS FAN EXPERIENCE" TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction soon comes to a close.
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Friday, August 4, 2006 11:59 PM CDT
ECHOES OF LOVE
Words in the first song on Nicholas' Video Tribute played during the Memorial Service begin with, "I have heard it said that people come into our lives for a reason bringing something we must learn, and we are led to those who help us most to grow if we let them and we help them in return…I know I'm who I am today because I knew you…I have been changed for the better because I knew you, I have been changed for good…"

This evening as we bellowed out over Nicholas' site, our voices carried down into the valley of Briones Regional Park and over the slopes of the hills. We bellowed, "Nicholas, we love you always and we know that you know, you just know." And the echoes provided a thumping sensation in our souls that really felt good. There was a gentle breeze and over the valley behind Nicholas' site several hawks were effortlessly gliding about, soaring up-and-down, side-to-side. It seemed like they were "playing and having fun!" It seemed like there was something for us to learn…and perhaps the learning is something that we had written on Nicholas' program for the Memorial Service/celebration of his life: "Our angel Nicholas…we don't have to see you to know you are here."

These echoes of love, as we call them, are comforting and combat the feelings of hurt, pain in our stomachs. We know God wants us to feel His love and for us to know that He has Nicholas safely with Him and for us to trust His love will provide…for Nicholas, for us. We also trust that God is providing for you, as you have also helped us to be changed for the better with your love. So we see these echoes of love as moments penetrating into our souls providing beautiful reflections of Nicholas' life-letting us know that knowing Nicholas, we learned and are learning so much more about love, life, friends, and living for God.

17 DAYS AND COUNTING-WARRIORS FAN EXPERIENCE TO HELP GENERATE LOVE
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction soon comes to a close.
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Thursday, August 3, 2006 11:40 PM CDT
THE MASTERPIECE
Last night's journal ended talking about Nicholas being part of God's master plan…and today dad heard an analogy of that master plan relative to things we sometimes see here on earth. Things we see that we just do not understand in terms of all the why, why, why questions.

The analogy went something like this: Imagine the bottom side of a homemade quilt. What would you typically see? You would see knots and material that have been cut off and perhaps dangling. And imagine seeing the top side of the finished quilt or even while it was being created. What would you typically see? You would see a beautiful piece of work; and you would continually see that beautiful piece of work transitioning into a masterpiece! Here on earth, seemingly, what we some times see is the bottom side of the masterpiece in terms "knots, things that were cut off, and/or things that are dangling." This refers to things like the awfully terrible aspects of Nicholas' leukemia and bone marrow transplant journey. We do not always see the top side and its magnificent beauty unfolding. And sometimes we do get a glimpse of the top side…the beauty of love begetting love.

We have seen that beauty in Nicholas so many times before, during, and even now after Nicholas' journey because his love and spirit is amazingly still generating love. We are grateful for God's love; we know His love is constant although some days are really hard to get through.

As others have said…Nicholas' story continues…

18 DAYS AND COUNTING
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction will soon come to a close.
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Wednesday, August 2, 2006 11:59 PM CDT
STILL PRAYING, LISTENING
So last night we were more comforted in terms of feeling Nicholas was in the right place because while Love definitely provided for Nicholas along the way...we believe Nicholas "labored at times" to be the warm, joyful, loving person he displayed for us, he displayed for you. Remember when he would say, "I want my life back; I want my happiness!" (November 20, 2005 journal), or "I don't have my smile back." Here too, Love did provide for Nicholas and we remember after Nicholas talked about wanting his smile, his wonderful smile was lovingly revealed that day (December 2, 2005 journal and December 2, 2005 pictures of Nicholas at home sailing down the play structure's slide, on the 3rd album below under Links). And once again Nicholas brightened our day…God provided for Nicholas and for us.

Like the words to the song, "If You Could See Me Now," in Monday's journal Nicholas is with God and that is absolutely comforting. However, we still pray (as always to be closer to God), not for answers because we trust and believe...however, we pray asking God to help us along the way. We pray for all these beautiful kids having to navigate awful cancer journeys.

The truth is, God has always been with Nicholas as the Journal History reminds us of the love, joy, and blessings -including you in our lives along the way.

GOD WILL MAKE A WAY
We cannot help but wonder why, why, why…why did we not see the healing we wanted to see here on earth, why Nicholas, why any of these beautiful kids. And we also thank God for reasons stated above; it is hard to understand but we trust and believe God, His love and spirit to always provide. And Nicholas, you just "know" that we are in your soul and that you are in ours. You are happy and free, son. We feel you and trust you feel us too. And we just know that God is there for all of us in ways we may not understand, except you must now understand and are part of His master plan!

God Will Make A Way
(By Integrity Music-Songs Of Hope, God Will Make A Way)

God will make a way,
Where there seems to be no way.
He works in ways we cannot see,
He will make a way for me.

He will be my guide,
Hold me close to His side.
With love and strength for each new day,
He will make a way.

19 DAYS AND COUNTING
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction will soon come to a close.
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Tuesday, August 1, 2006 11:59 PM CDT
NICHOLAS' FAVORITE PERSON IN THE WHOLE WORLD
Tonight we were looking at home videos and during a November 2, 2005 video we were shooting we asked Nicholas, "Who is your favorite person in the whole world?" Nicholas' response was, "My family!"

And we cannot stop thinking about Nicholas and his experiences from another day in November, a year before, "that" day is November 19, 2004. And thinking about "that" day through May 25, 2006, our family knew Nicholas was our favorite person in the whole world before, then, and now. We think about his reactions to the very extreme life altering processes that he faced and endured. Knowing Nicholas, mom & dad, and our passion for God's love you know that our passion, trust, belief, and the realization of love enabled Nicholas to "live" and have fun...from hospital to home, to clinic to home, to hospital to Ronald McDonald House (RMH), to clinic to RMH, to home to clinic, to hospital to home, to clinic-Minnesota to home, to clinic to home, to hospital to home, to Hawaii to home, to clinic-Denver to Brent's Place-Denver, and to hospital-Denver to hospital-Stanford LPCH.

We are thankful family and friends (YOU) were so very present in Nicholas' heart & soul more than ever on May 25, 2006 at LPCH to home-Heaven. We have seen and known that Nicholas, mom & dad, and our other three boys have been blessed because of God, you, and we have been blessed to daily experience love manifested in Nicholas & radiating from Nicholas.

All of the foregoing is a mouth full, however, all of Nicholas before and now provides a life and spirit that illuminates with rays of sunshine warming our hearts; Nicholas' strength, energy, enthusiasm, joy, and endless passion for caring about others amazingly inspires us daily-every day!

Every day there are gut wrenching and heart wrenching pain missing Nicholas so much...and we know and put ourselves fully into God hands for His love to work within us. And it always feels much better; never, ever forgetting all aspects of Nicholas' presence we trust God will provide comfort for all of us...yes we know seeking and listening to God is the first step every day.

20 DAYS AND COUNTING
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction will soon come to a close.

Monday, July 31, 2006 11:59 PM CDT
NICHOLAS AND SONGS CARRYING US THROUGH EACH DAY
Nicholas loves music and along with songs as written, we would modify some to make harmonious and true, our love for each other as well as for God. Songs have always been part of Nicholas' life before he could even talk and as much as part of our other boys before they could even walk. For us, God has always worked within and around our lives even in ways we could not see…remember the Hymn we talked and prayed about: "…my hope we cannot measure, my path in life is free, my Father has my treasure, and he will walk with me…?"

 

While the words resonated deep within our souls, we are comforted knowing Nicholas' knowledge of the words were a testament of their healing…even if the healing was just in our hearts and souls where nothing contrary to God can take hold. The following song is new to us (thank you brother); however, we can feel God's touch as a million times before:

If You Could See Me Now
(By Integrity Music-Songs Of Hope, God Will Make A Way)

Our prayers have all been answered,
I finally have arrived.
The healing that had been delayed,
Has now been realized.

No one's in a hurry,
There's no schedule to keep.
We're all enjoying Jesus,
Just sitting at His feet.

If you could see me now,
I'm walking streets of gold.
If you could see me now,
I'm standing tall and whole.

If you could see me now,
You'd know I'd seen His face.
If you could see me now,
You'd know the pain is erased.

You wouldn't want me,
To ever leave this place,
If you could see me now.

My light and temporary trials,
Have worked out for my good.
To know it brought Him glory,
When I misunderstood.

Though we've had our sorrows,
They can never compare.
What Jesus had in store for us,
No language can share.

If you could see me now,
I'm walking streets of gold.
If you could see me now,
I'm standing tall and whole.

If you could see me now,
You'd know I'd seen His face.
If you could see me now,
You'd know the pain is erased.

You wouldn't want me,
To ever leave this perfect place,
If you could only see me now.
If you could see me now...

21 DAYS AND COUNTING
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above AND access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details about the Golden State Warriors Foundation and NBA Cares as the auction will soon come to a close.
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Sunday, July 30, 2006 11:20 PM CDT
GOD KNOWS WHAT WE NEED
As another week comes to an end, we think back over the last 7 days reflecting on how we lived for God, for Nicholas, for our other boys, for our family, for our friends, and how we lived meeting new people in our lives. Not just living, proactively living for God and allowing His love to let us "know" that Nicholas, like a dream, is enjoying God's Kingdom that is now also Nicholas' Kingdom-Heaven. And living for God fulfills our hearts and souls in ways that we, actually, could not have known we needed.

For us, we do not know what we need and have not known what we needed during Nicholas' journey and as the story continues; however, as the days, weeks, and months go by since Nicholas has passed, we felt God's presence every moment of the way. Reflecting back on these feelings, God has daily provided for us although some of what He provided we would not have thought about…we really did not know what we needed or even need now. God's guidance is working and we trust His words to continually provide for us…He knows what we need and when we need His blessings. And like during Nicholas journey, which we have now called his "story," God continues to bless us with all of you directly and indirectly in our lives. Love is amazing; so the story continues…

NICHOLAS AND FRIENDS…OUR "NEW NORMAL"
Today was another forward step for our family as friends-with their kids-visited just like our "old normal" talking, music, barbequing, swimming, playing, talking, and relaxing together reflecting on life and fun. We felt Nicholas' presence and know that because Nicholas is in our hearts and souls, he will always be present in our lives and we thank God for giving us such a blessing enabling us to trust Him to provide for us knowing what we need. And to trust Him knowing that He has Nicholas in His hands-there is no better place to be so we are okay in our thinking about how Nicholas is…

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details as the auction will soon come to a close.
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Saturday, July 29, 2006 11:59 PM CDT
LOOKING UP TO HEAVEN
Yesterday was a day with friends for a friend. Today was a day with family for our family, "out and about" the way our "old normal" used to be. Tomorrow will be a day, not too unlike everyday, with family and friends in our "new normal" with more joy for God and certainly loving Nicholas even more deeply as we love our way to deeper & higher dimensions of love.

Looking up to Heaven is everyday, loving God and Nicholas as personal guides lighting up our paths & lives so darkness continually gives way to light. Family & friends, remember journals along the way talking about gratitude (we were blessed everyday), blessed days continue and looking up to Heaven day and night reveals wonders to our hearts & souls as we imagine Nicholas...and then recognize God's work continually unfolding enabling joy to push back sorrow because Nicholas is free, happy, playing, and having fun. Spirit & love soars in and around our lives and it sure "feels" better allowing God's harmonious love to provide for us.

Day and night it is so amazing to gaze into the sky!

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details as the auction will soon come to a close.
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Friday, July 28, 2006 11:59 PM CDT
REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details as the auction will soon come to a close.

TODAY
Today was a sad day as dad attended the funeral of a colleague who happened to be buried in the cemetery (Queen of Heaven) below where Nicholas' body is buried (Oakmont Memorial Park). Looking up from the Queen of Heaven dad could see the edge of Nicholas' serenity ridge site at Oakmont and with sadness for our colleague, Nicholas, and others known to have passed away comes mixed feelings about their ascending to Heaven.

One of the messages today drew attention away from the physicality of our lives…to love, to family, and to action. As mom & dad talked about this we realize the ever-present love in and around Nicholas' life and how all of us-including you-took action to be part of a family of love that provided, and provides today, true purpose and power of life here…so imagine how great it is in Heaven. We are so grateful to know love through Love-God. It is God's love and spirit that is sustaining our lives and filling our hearts and souls with everlasting memories of perfection and purity that has no end although it was a physical end for Nicholas here on earth.

The QUALITY of Nicholas' life through God brings everlasting joy and gratitude because Nicholas was short of nothing here on earth! We thank God and thank you for directly and indirectly contributing then and now. And the QUANTITY of Nicholas' life to us is measured in memories generated from omnipotent love received and given that will, absolutely, last a lifetime. Nicholas has made it face-to-face with God in God's speed.

The constant pain as well as void is in missing Nicholas physically so we are focusing on the spiritual aspect with God that is bringing us closer to Nicholas and bringing Nicholas closer to us. We felt God's presence with Nicholas and He would not leave His child, as any truly loving mother, father, or guardian would not. We are focusing on holding these truths as sensors for our hearts and souls.

TONIGHT
Surprise tonight at Nicholas' site were Yellow Parade Roses, yellow Disc Sunflower seeds, blue balloon dolphin, and white with black-lettering spelling Love-rock. Along with last night's surprise of a Piggy Bank with wings (remember Nicholas loves money and has several "piggy" banks) we are in awe of the love continually shared and hopefully received.

Again, do you remember the book we read to Nicholas on May 25, 2006 (May 26 journal) called, "The Next Place?" Calm, peace, and inspiration is drawn from the book that has amazing pictures with vibrant colors bringing the words to life. Tonight at Nicholas' site looking up at the sky was like seeing pages of the book and feeling our little angel, Nicholas, spiritually alive. There were picturesque colors of blue, including periwinkle, in the Western sky and a brilliant crescent moon. We thank God for this soothing night and Nicholas for helping to illuminate the night. Our sadness is just physical and there is happiness because of Love and the promise of Heaven.

TOMORROW
We do not know what tomorrow will bring, except love because of God's love. We will love and focus on actions of love as our lens to see our world, starting with our family. And sweet Nicholas, we are so glad that you "just know…"
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Thursday, July 27, 2006 11:59 PM CDT
NEVER GONE
Songs selected for the Video Tribute played during the Memorial Service help us to realize the care that God provides us and how He helps us to "feel" just how close Nicholas is and will always be.

The void felt in our stomachs is like an empty spot somewhere deep inside that we cannot identify or sooth. It is really hard to pinpoint where the void is felt…and then we think about knowing what is true and the words that helped us along the way with Nicholas. Remember, "There is no spot where God is not!" And we know that God, spirit and love, shines light on every spot that is hidden or not…and we trust His light to light up our lives revealing Nicholas, always close (never gone).

Following are the words to one of the songs, "Never Gone," by the Backstreet Boys that was on the Video Tribute. (And thanks for being so patient with us regarding us having the Video Tribute accessible to you to again here the poignant music helping us to continually feel Nicholas' love and spirit in our lives. A link will soon be available.)

Never Gone

The things we did, the things we said
Keep coming back to me and make me smile again
You showed me how to face the truth
Everything that's good in me I owe to you

Though the distance that's between us
Now may seem to be too far
It will never separate us
Deep inside I know you are

Never gone, never far
In my heart is where you are
Always close, everyday
Every step along the way
Even though for now we've gotta say goodbye
I know you will be forever in my life
Never gone

No, no, no
I walk alone these empty streets
There is not a second you're not here with me
The love you gave, the grace you've shown
Will always give me strength and be my cornerstone

Somehow you found a way
To see the best I have in me
As long as time goes on
I swear to you that you will be

Never gone, never far
In my heart is where you are
Always close
Everyday
Every step along the way
Even though for now we've gotta say goodbye
I know you will be forever in my life

Never gone from me
If there's one thing I believe
I will see you somewhere down the road again

Never gone, never far
In my heart is where you are
Always close
Everyday
Every step along the way
Even though for now we've gotta say goodbye
I know you will be forever in my life

Never gone, never far
In my heart is where you are
Always close, everyday
Every step along the way

Never gone, never far
In my heart is where you are
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Wednesday, July 26, 2006 11:59 PM CDT
OUR NEW VISIT TO LPCH
We did it! Mom & dad understand that a very hard thing for parents to do after the loss of a child is to go back and visit the hospital where they spent so much of their time. We were nervous about what we would feel-would we become too emotional and feel awful? Not at all; our visit today to Stanford-Lucille Packard Children's Hospital was a warm, welcoming, and an "at home" feeling. It was very, very nice to see all the loving and caring doctors, nurses, social worker, child life members, and the chaplain that were so much a part of Nicholas' and our lives.

In our hearts we had adopted each one of them to become part of our family, our new hospital family/friends. They were all SO helpful every step along Nicholas' journey. We thank you all for the wonderful jobs that you do. We shared hugs and tears, tears of sadness and tears of happiness. We shared stories of our darling little Nicholas. He was such a special little boy and now our heavenly little boy. We all MISS Nicholas deeply and long for his physical presence. We are comforted, however, by his strong spiritual presence…we feel it every day in everything we do, everything we see, and everywhere we go. He is never gone or never far away…remember, we talked with Nicholas many times enabling us to have a shared understanding of God's omnipotence, omnipresence, and omniscience. And a shared understanding that we would always KNOW that we are in each other's heart and soul-always!

Mom & dad, our selves, are very surprised at the strength God is giving us amidst our physical pain longing for Nicholas. The strength, we guess, is another blessing amidst the physical loss of Nicholas. And remember, Nicholas is never far away!

NICHOLAS AND YOUR MEMORIES OR INSPIRATION (specific request through at least July 28, 2006)
The memories and inspirations shared based on last Thursday and Friday night journal entries are beautiful-thank you for the guestbook entries, emails, and phone calls with your remembrances. We will keep a message similar to this one posted on these journals through at least July 28, 2006. We have a few ideas on how the remembrances will live on from your hearts into ours and others. So what is your memory or inspiration?

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details as the auction will soon come to a close.
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Tuesday, July 25, 2006 11:41 PM CDT
TWO MONTHS AGO TODAY…
We are very, very sad AND we are thankful knowing that God loves Nicholas and is with him in heaven. We are thankful for God's love because we faithfully trust His words placing Nicholas "in heaven" the greatest, loveliest, playfulness…and the "perfect" place for all to want to be when we leave this place.

Remember the book, The Next Place, recapped in the May 26, 2006 journal?

Do you remember the journals and guestbook entries about May 25, 2006 and the pure love within and around Nicholas? The love from so many of you waiting in the waiting area for Nicholas' plane to land in California after midnight…The love from all of you after Nicholas was in his Pediatric Intensive Care Room…The love and beautiful witnessing of Nicholas surrounded by everything pure and perfect letting us know that Nicholas is loved by God although we would miss him in the most gut wrenching, painful ways.

The morning of May 25, 2006 we were informed that Nicholas would probably not live through the night and dozens of family members, friends, and medical staff who were with us after midnight came back to be with many who remained at LPCH. As the dozens grew, the love in the air multiplied providing Nicholas an atmosphere of calm and comfort.

While we were trusting God to guide and shield Nicholas keeping him full of light and love, we also decided to ensure that Nicholas "knew" he is loved by everyone present and representing all of you. And it really was "all of you" because amazingly everyone who was part of Nicholas' journey was physically represented and surrounding Nicholas. And to ensure Nicholas knew this, we read books to Nicholas, prayed, sang, played his Song-Of-Love, had videos playing of Nicholas engaging with many of you, and we had Nicholas' room filled to capacity-in shifts-letting Nicholas deeply know that he is loved. Following are a couple recaps of guestbook entries describing the feeling felt in Nicholas' room at LPCH as he ascended to Heaven:

- Our little friend, Nicholas, died this afternoon. His parents brought him back to LPCH by air ambulance from Denver last night, so his family and friends could say goodbye.

As Nicholas was slipping away, his dad asked each person in the room to let Nicholas know they were there, and the room was filled with love as pure as I've ever felt.

- I want to thank you for allowing me the honor and privilege of being with you today. I am so grateful to you for yet again having the strength to allow others to share in Nicholas' and your journey and for giving us all the opportunity to say our goodbyes and to love Nicholas that little bit more. Whilst it was the saddest moment of my life it was also one of the most uplifting, poignant and treasured moments of my life. The love in the room surrounding Nicholas was so tangible. By doing it "your way" as you put it Lamont, Nicholas knew how much he was and will continue to be loved by so many. He looked so peaceful; he fell asleep and flew up to heaven. God had bigger plans for him. No more pain, no more medication dear little Angel, be with God and be at peace.

- We are honored to have been there today at 12:51 p.m. when Jesus took the hands of Nicholas to be with God. We are honored. For KJ to hold his right hand when he took his last breath, was a profound experience for him. Thank you, Lamont, for allowing us to be there. My children now know that death, albeit sad, is nothing to fear. That Nicholas was surrounded with so much LOVE in that room today. You and Sheila inspire us so much. Thank you for allowing us to say good-bye to him in "your" way.

Nicholas would always say, "You want a piece of me?!" Now, we are left with a piece of him. And for that we are blessed.

There will always be a piece of Nicholas in our hearts.

TOMORROW, RE-PLAYING OF THE MEMORIAL SERVICE VIDEO TRIBUTE
Recognizing that while many of the Stanford-Lucile Packard Children's Hospital staff were able to be at the June 2 services, many were not able to be there so tomorrow (Wednesday) mom & dad will re-play the June 2 Memorial Service Video Tribute for the staff. Coupled with the staff once again getting a "piece" of Nicholas, we are praying that the time will be very therapeutic for us as well as the staff based on the warm, caring, and loving relationships that we (including Nicholas) have with the staff-so the relationships part of "the story" continues as well.

NICHOLAS AND YOUR MEMORIES OR INSPIRATION (specific request through at least July 28, 2006)
The memories and inspirations shared based on last Thursday and Friday night journal entries are beautiful-thank you for the guestbook entries, emails, and phone calls with your remembrances.

Because some of you are away and can only access the journals through a variety of connections, such as telephone calls we are told, IT IS AN OPEN INVITATION TO SHARE YOUR REMEMBRANCE on the guestbook at any time. However, we will keep a message similar to this one posted on these journals through at least July 28, 2006. We have a few ideas on how the remembrances will live on from your hearts into ours and others. So what is your memory or inspiration?

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Monday, July 24, 2006 10:54 PM CDT
SAD DAY
We have been very sad all day for several different reasons all relating to missing Nicholas so, so much. We call out to our Father, God, knowing that he knows our pain and knows what we need not just want. And we feel that it is okay to pray for what we think we want because He will still listen.

Sadness also came over us while thinking about Nicholas' last 48 hours of which there was absolute love flowing through and around Nicholas. You could see it in his eyes, hear it in his words, and feel it from the sense of peace & calm all about Nicholas. Thankful is the word that comes to us and it might seem odd to recognize our thankfulness during the worst time of our lives. And oddly Nicholas had happiness and joy as much as he experienced his entire life…in his last 48 hours as he was "playing and having fun" with a baby that was being treated at The Children's Hospital-Denver, lively engaging with the nurses, and loving mom & dad as much as ever during our visit to the US Mint-Denver as well as throughout the day on May 23. And going to the ER on May 24 just after midnight, Nicholas was being carried in our arms just the way he likes and patted by mom just the way he likes.

Our hearts and bodies ache…and because of God we know that His love was in operation throughout Nicholas every moment then and now, in operation from mom & dad, from Nicholas, and the combined love cannot create anything contrary to love. Not humanly and absolutely not heavenly! Although the sadness is so very real, we trust and believe that as we get even closer to God love will further be revealed and manifest further in our hearts and bodies. And Nicholas, our love, love has never failed you and you know that now. Son, our spirits and souls are together, forever!

NICHOLAS AND YOUR MEMORIES OR INSPIRATION (specific request through at least July 28, 2006)
The memories and inspirations shared based on last Thursday and Friday night journal entries are beautiful-thank you for the guestbook entries, emails, and phone calls with your remembrances.

Because some of you are away and can only access the journals through a variety of connections, such as telephone calls we are told, IT IS AN OPEN INVITATION TO SHARE YOUR REMEMBRANCE on the guestbook at any time. However, we will keep a message similar to this one posted on these journals through at least July 28, 2006. We have a few ideas on how the remembrances will live on from your hearts into ours and others. So what is your memory or inspiration?

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details as the auction will soon come to a close.
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Sunday, July 23, 2006 10:27 PM CDT
TODAY
At church, in the pool, and at Nicholas' site (Oakmont), the day and evening were a little more difficult because missing Nicholas' pure love for God, swimming, and flying kites just hurt. (Today's evening breeze provided warm gusts of wind lifting Nicholas' kite above his site.) While it has been 59 days, we still just cannot believe what has happened-it just makes us ill!

And we trust & believe that Nicholas is just fine although we are not sure about hearing, that for us it will just take time. We talked about time a lot during Nicholas' journey and what was felt then we believe is true today. So in God's speed we are open to be what He wants us to be…and it has nothing to do with time. Nicholas IS loved and he knows it because along with us you showed him over and over…and Nicholas knew he was loved by God…now Nicholas clearly sees the love of God as he freely plays and has fun.

God is loving Nicholas and loves us too-he always has and always will so for us listening and living for God, He will show us the way for peace…without thinking about time. A song in church today is providing comfort tonight:

"He Knows My Name

I have a Maker, He formed my heart.
Before even time began, my life was in His hand.
He knows my name, He knows my every thought.
He sees each tear that falls and hears me when I call.
I have a Father, He calls me His own.
He'll never leave me no matter where I go."

NICHOLAS AND YOUR MEMORIES OR INSPIRATION
The memories and inspirations shared based on Thursday and Friday night journal entries are beautiful-thank you for the guestbook entries, emails, and phone calls with your remembrances.

Because some of you are away and can only access the journals through a variety of connections, such as telephone calls we are told, IT IS AN OPEN INVITATION TO SHARE YOUR REMEMBRANCE on the guestbook at any time. We have a few ideas on how the remembrances will live on from your hearts into ours and others, so we will keep a note posted on these journals for about a week asking for your remembrances. So what is your memory or inspiration?

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details as the auction will soon come to a close.
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Saturday, July 22, 2006 11:59 PM CDT
MAKING A DIFFERENCE
This morning for about 5 minutes a butterfly and hummingbird flew and landed from flower to flower outside our living room picture window. Of course it is not unusual to see this; however, coupled with seeing different types of bees simultaneously doing the same thing as well had us stop and observe beyond the flowers and the bees/hummingbird/butterfly. What came to mind was how a flower provides more than once to something else, and provides for more than one purpose. I think about the butterfly, the hummingbird, the bees, our eyes, our noses, our hearts…and sharing. I think about how many of us love to share pictures of flowers; talk about the ones we have or have seen; and purchase pictures, cards, clothes, etc. with flowers as the subject. I think about all of these things and the hundreds of things about flowers that warm our senses and heart.

Then I thought about Nicholas, about God, about love, about family, about friends, about this shared journey you are taking with Nicholas and mom & dad in a variety of ways. And then I remembered the many journals of Nicholas' journey and the constant subject was and is God, spirit, love, strength, energy, enthusiasm, joy, and caring about others to name a few. Finally I thought again about the flower this morning…what a difference (how ever it is for you) that a flower makes, what a difference Nicholas made and makes, and what a difference all of you made and make in our lives. Perhaps all of us do not completely know the difference we make in the lives of others-we just do it based on a foundation of love God has placed within each of us.

NICHOLAS AND YOUR MEMORIES OR INSPIRATION
The memories and inspirations shared based on Thursday and Friday night journal entries are beautiful-thank you for the guestbook entries, emails, and phone calls with your remembrances.

Because some of you are away and can only access the journals through a variety of connections, such as telephone calls we are told, IT IS AN OPEN INVITATION TO SHARE YOUR REMEMBRANCE on the guestbook at any time. We have a few ideas on how the remembrances will live on from your hearts into ours and others, so we will keep a note posted on these journals for about a week asking for your remembrances. So what is your memory or inspiration?

EXPANDING OUR COMFORT ZONE AGAIN
Remember last night's journal about a wedding anniversary and that tonight we would be attending a scholarship awards banquet? These were two more steps forming our "new normal" and thanks to so many friends attending both events (more so tonight) we were helped along the way. Tonight's event seemed a little harder on us because in Nicholas' first year of life he attended one of the same scholarship awards banquet with us. We are so happy to remember and have so much to remember… And yes, Nicholas was with us tonight as he will be forever!

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details as the auction will soon come to a close.
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Friday, July 21, 2006 11:59 PM CDT
LOVING NICHOLAS MOVES US CLOSER…
Mom & dad moved out of our expanded "comfort zone" this evening and attended a wedding anniversary for our dear friend who is behind the Nicholas Colby Fund (comfort zone talked about in the July 18 journal). On one hand we DID go out of our comfort zone as the sounds and sights of the evening came from joyful couples and families with kids "playing and having fun." On the other hand we DID NOT go too far out of our comfort zone in terms of location as the celebration was held right here in Lafayette at the Lafayette Park Hotel.

Like going back to work, this evening was a "taste" of the lives we lived before. It actually was a beautiful blessing showing us that continually moving forward into the life we shared with Nicholas, being "out and about," IS the life we cherished with Nicholas (the life he lived and loved). Although we did leave a little early because emotions sporadically had us feeling uneasy, the evening had whispers of love in a "new normal" sort of way and we believe Nicholas was there with us every step of the way.

Coincidentally, tomorrow night we will expand our comfort zone again as we attend a AAA scholarship awards banquet. Remember the words of the song "Because You Live" by Jesse McCartney that we talked about in the June 17 journal? Remember, we modified the words a little singing, "Because you livvve, son, my world, has twice as many stars in the sky…" Nicholas does live in so many ways inside and around us that we will continually expand ourselves-in love-and therefore get even closer to all the wonderful things he touched in this world. And we will never, ever forget ALL the wonderful things he touched and touches in the world today and forever. Nicholas, you are in our hearts and souls…and we are in your soul, forever sweetheart! Remember, we just know… To get through it all, well, to "live" through it all we continually pray for God's help and guidance because we cannot do it by ourselves.

YESTERDAY'S JOURNAL ABOUT YOUR MEMORIES OF NICHOLAS-AND SOMETHING ELSE
In case you missed it, please go to Journal History and see yesterday's journal asking if you would share your memories of or about Nicholas. ALSO, because some of you may not have personally engaged with Nicholas, perhaps you would not mind sharing an inspiration generated from your connection with Nicholas via this CaringBridge site. So once again, we would love to hear from you by writing us a guestbook entry onto this CaringBridge site or email us if you prefer using the email address toward the bottom of this Home Page (mama4boys@sbcglobal.net).

We know we are blessed with you in our lives.
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Thursday, July 20, 2006 11:59 PM CDT
WILL YOU SHARE YOUR MEMORIES OF NICHOLAS WITH US?
Our memories overflow in our hearts, minds, and souls and they sure help us along the way...we look, feel, hear, smell, and taste the love Nicholas provides in all aspects of our personal, family, and professional lives. AND, spiritually we continue to be blessed because we knew, know, and love Nicholas. What is that "saying" about a gift that keeps giving? For us the "saying" manifests itself in Nicholas and his glow is the gift continually lighting our path along with our trust and belief in God.

Mom & dad would really love to "capture" your memories of or about Nicholas. Maybe your memory was when he was a baby; during a play date; at a theatrical performance; a park; a school function; at a basketball game; in the yard; swimming; on the telephone; playing board games, basketball, baseball; or just "playing and having fun." What plays over and over in your mind about Nicholas? What made you smile, laugh, and/or what caught you by surprise? What did he do or say that was inspiring to you? And just as important, what memory do you think Nicholas has of you?

QUESTION: WOULD YOU PLEASE SHARE THE ABOVE WITH US by writing us a guestbook entry onto this CaringBridge site or email us if you prefer using the email address toward the bottom of this Home Page (mama4boys@sbcglobal.net)?

Nicholas Colby Gilbert, we love you! And all of you, we love and appreciate you for being with us as well as staying with us along the way-thank you!
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Wednesday, July 19, 2006 11:59 PM CDT
MEMORIAL SERVICE VIDEO TRIBUTE AT LPCH
Following up on the July 16, 2006 journal, re-playing the June 2 Memorial Service Video Tribute for the staff at Stanford-Lucile Packard Children's Hospital will take place Wednesday, July 26. Coupled with the staff once again getting a piece of Nicholas, the time together will be very therapeutic for mom & dad based on the warm, caring, and loving relationships that we (including Nicholas) have with the staff-so the relationships part of "the story" continues as well.

DELIBERATE ACTS OF LOVE
For us, calming of the physical and emotional pain come from God's love-although we have natural feelings of being hurt-and we are so fortunate to more than reflect on the love Nicholas received from so many of you along with the love Nicholas had for life beyond what now, seemingly, can truly be said to be heavenly love. So reflecting on Nicholas, his life, and his continuing story...calms our hearts and thoughts like gentle "pats" of Nicholas' tender, sensing hands.

SOMETHING NICHOLAS SAID
"Don't worry about me, I'll be alright." (November 19, 2004 when Nicholas was diagnosed with leukemia as mom & dad were clinging to him with every emotion swirling, all attempts of focus giving way to crying for mom, and dad tightly holding on to both Nicholas and mom, is when Nicholas reached out to mom touching her saying "Don't worry about me, I'll be alright." )

SOMETHING WE SILENTLY HEARD FROM NICHOLAS TIME AND TIME AGAIN
"This little light of mind, I'm going to let it shine, let it shine, let it shine, let it shine...," (Many times as he politely replied to questions and enthusiastically was getting ready to do one of the many things he enjoyed, it was like a cue for this verse to play in our hearts.)

OUR MEMORIES WILL VIBRANTLY LIVE AND FOREVER PLAY AGAIN AND AGAIN…AND WE WILL LISTEN FOR GOD'S VOICE AND NICHOLAS' WHISPER
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Tuesday, July 18, 2006 11:59 PM CDT
TIME, PROCESS, CHANGE
"It takes time," "it is a process," "it is now a change journey," are some of the coping steps we have learned through reading, counseling, and many of you-are FRIENDS.

Like our recent journal entries, believing that time is relevant to God's speed and process is governed by God's guidance, we faithfully focus on God's words of love for Nicholas, mom & dad, our other sons, you, and everyone during and through this life. For mom & dad, during and through this "change journey." We pray, trust, listen, believe, and follow love, which, thankfully, begets love. We fully expect God to fill our hearts and souls with love that only He can provide (or orchestrate).

MOVING TOWARD NICHOLAS' RAINBOW
Thinking of the "change journey," mom & dad have modified a concept from work-zones of change-that speaks to our preparedness and trusting of God to fulfill us when it sure seems like being fulfilled with such an un-describable pain & void in our lives could not be felt (or known). The work concept involves 3 circles with one in the center of a bull's eye-like diagram (Comfort Zone). Just outside the comfort zone is another circle (Fear Zone). And the third of 3 circles (Learning Zone) around the first 2.

A few purposes of the Zones of Change are to create awareness around one's Comfort Zone, think differently about our willingness to be in the Fear Zone with risks and its relationship to learning, and to begin to hold fear differently. The notion is around moving outside one's Comfort Zone and into the Fear Zone toward learning, meaning one would have to push through the Fear Zone.

FOR MOM & DAD, we substitute the word Mental Preparedness for Fear and Rainbow for Learning. While we are in our Comfort Zone where it is safe and secure, to get to Nicholas' Rainbow we have to push through the Mental Preparedness. The only way is through God guidance and moving out from our Comfort Zone into Mental Preparedness, and to get "out" of Mental Preparedness into the Rainbow we have to get "in" the Mental Preparedness Zone where things will not be comfortable but as we pray and grow spiritually we will push through mentally expanding our Comfort Zone and find our way to Nicholas' Rainbow.

And we are so thankful for you, our circle of friends continually supporting us in amazing ways. Thank you!

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details.
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Monday, July 17, 2006 11:59 PM CDT
SOME DAYS missing Nicholas is to the extreme that it is seems hard to breathe. Anxiety overwhelms our hearts and we pray much more frequently for the calm and peace that God has provided us along the way. This evening was one of those "some days."

At Nicholas' site it was a still, calm, warm evening with a sky that took on the sensation of a soothing ocean. We played Hawaiian music on the way to and from his site (you know Nicholas enjoys Hawaii). Wanting to touch Nicholas' beautiful face I lifted my arms out, and up into the sky facing the sunset. Closing my eyes I prayed knowing our Father could hear us and trusting He will comfort us-with arms extended I could sense Nicholas' face, including his eyes, his lips, his cheeks, as well as his joyful tenderness. And moments of comfort followed…

On the way home, at dusk, we had the sunroof back and windows down as the warm, comfortable air flowed through the car providing sensations that Nicholas and mom & dad enjoy.

As we lay down our hearts are beating with anxiety-we trust God to fill our hearts at least with a layer of comfort even if it is a thin layer. And we think…God would not want us to "just get by," He wants comfort, peace, and layers of joy in our hearts. Joy, understanding that Nicholas is more than comforted and we are to be as well.
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Sunday, July 16, 2006 10:16 PM CDT
EVERYDAY LIVING HAS CONSTANT REMINDERS AND THEY ARE GOOD AS WELL AS SAD, BUT…
Today, like most days, just going through everyday living takes us to many reminders of Nicholas and we are so, so grateful for the constant memories of love & happiness. And today at Broadway Plaza in Walnut Creek (outdoor mall) and the grocery store there were people we have known a long time and a short time sharing loving memories of Nicholas and thanks for what Nicholas has taught them along the way. These are happy moments and some of these moments along with others bring sadness. Sadness because we, naturally, miss Nicholas. But below are words we have often spoken about that help us along way. It is not just about the words, it is about knowing, trusting, and seeing God's perfect work through and in Nicholas-and praying and believing God's love for all of these kids is all that all of these kids and all of us need and have.

"I walk with God along the way, and oh, it is a joyful-dominion day. No more I suffer cruel fear, I feel God's presence with me here. The joy that none (and nothing) can take away is mine, I walk with God today."

"Green pastures are before me, which yet I have not seen. Bright skies will soon be over me, where darkest clouds have been. My hope I cannot measure, my path in life is free. My Father has my treasure, and He will walk with me."

UPCOMING EVENING WITH NICHOLAS' NURESES, DOCTORS, & OTHERS
An evening with the Stanford-LPCH staff is being planned to take place in about two weeks. While many of the LPCH staff were able to attend the June 1 Visitation Service and/or the June 2 Memorial Service, there were so many others that were unable to attend. The LPCH staff (like those at Children's Hospital Oakland and The Children's Hospital-Denver) is still so much a part of Nicholas and our lives so this will be an opportunity for mom & dad to engage with many of them at one time. And another way for Nicholas' spirit to soar to even greater heights as well as further distances in terms of the love he has for LPCH.

The plan is to play the Video Tribute that was played during the June 2 Memorial Service (not the Making Everlasting Memorials' short video that was played during the June 1 evening Visitation Service that is accessible through the www link above). The room will have the collage posters, puzzle pieces of Nicholas (Do you want at piece of me?), and some of Nicholas favorite items like those displayed during the Memorial and Celebration of Life Services. Remember, this Video Tribute has pictures of Nicholas and so many of you over the course of his life, beautifully set to poignant music that Nicholas liked and music that has been part of his life.

We hope all of you enjoyed and found love as well as peace through the Video Tribute; and hope it will continue to do the same for the remaining LPCH staff (and other people once the link is on Nicholas' web site). Gifts from God come in amazing ways!
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Saturday, July 15, 2006 11:59 PM CDT
SUNNY DAY AND SUNNY THOUGHTS
A day in the sun for dad with one of our other sons who took dad to a SF Giants' game. A day in the sun for mom at Orchard Nursery getting some of the same plants/flowers for our yard at home that we had asked/had planted at Nicholas' site. Mom also got dozens of ladybugs and we set them free tonight at Nicholas' site (remember seeing pictures from last year when Nicholas found ladybugs on the LPCH patio with mom?).

AND "YOU ARE MY SUNSHINE"
51 days later and sometimes we can feel or sense Nicholas in ways like runny down the hall at home to greet us, or swimming in the pool just saying, "look at me." Sometimes we just find it so hard to believe that Nicholas is not physically with us. All the time we pray and thank God for loving us so that all the time we can be comforted through His love providing peace, calm, and trust.

As hard as it is for us, we trust and believe that these days are not a question for Nicholas as he is more than at peace, he is free and enjoying all that God's love promises. Nicholas is even closer to that love than us so we should not want... Remember the times when Nicholas would talk, cry, and pray about…"I just want to be me." He is now what he wanted to be in terms of being free to be "me" and beautifully so much more. He has graduated doing all the right things to be in the right place for evermore. He is not missing us, but through God preparing for us…well we trust and believe his loving nature has him doing these things while deservingly playing, loving, and just being free to be "me."

AND ANOTHER LOVING SURPRISE
Tonight at Nicholas' site a CD and note marked with a "heart shape" was left stating the CD is one of their favorites and they had read to Nicholas, their favorite children's book. The CD is from the movie, "O Brother, Where Art Thou?" One of the songs on the CD we played was, "You Are My Sunshine" and the title correctly speaks about Nicholas. Thank you!

A GIFT FROM NICHOLAS TODAY
Mom & dad were taking dinner and a movie to Nicholas' grandmother Eva (dad's mom) and Nicholas treated us to the movie we selected at Blockbuster-via Nicholas' Blockbuster gift card. He would be, well he is, smiling knowing that he was again doing something for someone! Thank you son for giving us all so, so much helping all of us smile loving you!

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details.
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Friday, July 14, 2006 11:59 PM CDT
PRAYING
We pray that little boys and girls, well everyone, will some day not have to go through all that Nicholas or any child facing leukemia goes through. We also pray for those children and parents going through tough times now…for them to love, really love providing the gift from loving that will always be in each other's heart and soul. It matters so much…while we painfully miss Nicholas we "know" the level of love shared and love from God can never be taken away. We are always in each others' soul. Love adds...it does not subtract!
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Thursday, July 13, 2006 10:58 PM CDT
BUBBLE SURPRISE THIS EVENING FOR NICHOLAS AND MOM & DAD
This evening we were surprised by an automated bubble-blower that someone dropped off at Nicholas' site. There was a note that read, "I love you baby. Have fun with the angels; I hope you enjoy the bubbles. XOXO" The bottle of bubble liquid read, "billion bubbles" and not only did a lot of bubbles float from the handheld blower, there were bubbles of all sizes: small, medium, and really big ones. Thanks, mom & dad smiled a little more this evening.

ANOTHER SURPRISE
How does Nicholas do it, referring to extending love to people he has never known and never knew him…even up until today? While at Nicholas' site this evening a mother with 3 small children came up to us saying that driving by Nicholas' site her girls asked if they could find out about the little boy from the site. Well, the mother walked over with an angel pendant and rubber fish-the type that you could squeeze and it squirts out water-for Nicholas and told us about her girls' desire to know more about him. So once again, the story continues…

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details.
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Thursday, July 13, 2006 11:23 PM CDT
OUR PRECIOUS NICHOLAS
Every day seems like a struggle of love and then we think that with love all things will be okay. So the struggle, perhaps, is a transition aspect that will some day get to the point where love is all that we feel enabling us to get through the days a little better.

As we said on the Celebration of Life program, Good-bye comes…always too soon, before our hearts are ready to let go. Focusing and letting the memory and the promise of our gift-Nicholas-from God shine within us forevermore does brighten our days. And is helping mom & dad and our other boys focus even more on love.
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Tuesday, July 11, 2006 11:13 PM CDT
BOOKS READ AND EXPERIENCES shared by others who have lost a child is "information" we are very thankful for; and, we are finding that getting through everyday is like an un-chartered journey requiring navigation through reflections, emotions, and gut-wrenching aches. It is ironic that the journey and navigation that was common language in these journals about Nicholas…is the common language about the impact Nicholas' leukemia story is having today. And like Nicholas, the aspects of our experiences are now like a roller coaster. Except, OUR EXPERIENCES DO NOT COME CLOSE TO ANYTHING Nicholas dealt with moment-by-moment. As we think about what he dealt with, we are still so amazed at how he lovingly navigated everything placed in his path. Again and again, we see that Nicholas was so loved to be able to navigate the journey as he did. God has to be so pleased with Nicholas!

A CARD RECEIVED TODAY provided mom & dad with a very nice sense of how Nicholas' story about joy and love is touching lives: "Just wanted to drop you a note and let you know I'm thinking about you and Nicholas. I tucked my piece of Nicholas in my hospital badge so I could carry that piece around with me. Several people have asked what the puzzle piece was about…and so the story continues…"

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details.
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Monday, July 10, 2006 11:59 PM CDT
AS HARD AS IT ALL IS…COUNT IT ALL JOY HAS SPECIAL MEANINGS
We will never, ever forget everything about Nicholas. As hard as it is to experience all that has been going on these days, through Nicholas' life he has changed-and is changing-our lives toward becoming so much better in every aspect of loving. We hear his voice in ways enabling us to further remember and even learn some things. We are realizing that Nicholas' impact on our lives is building on who we are and want to be. This is so real for mom & dad, his brothers, and family. We suspect that you, too, are realizing things favorably impacting your lives. We do not know what to make of Nicholas' "passing" in terms of why and it hurts. We have always trusted and believed in the words of God...as we still do today along with crying for continued help along the way.

We remember Nicholas saying, "I am glad that I can help others, but can someone else do it now?" referring to guestbook entries saying that Nicholas was setting amazing examples of faith, mental toughness, and what love is during the leukemia journey.

Do you remember the Video Tribute played during the Memorial Service on June 2, 2006 (a link to the photos and music will be on the NicholasColbyFund.org site when it is completed, around July 31)? The ending song, with the profile picture of Nicholas overlooking the ocean in Hawaii, is titled, "Count It All Joy." We mention this today because it seems to fit what Nicholas was going through and how he navigated the journey. Following are excerpts of the song:

COUNT IT ALL JOY (by BeBe and CeCe Winan)
It is hard to understand sometimes
Is there a master plan
How do I make sense of everything I'm going through

So count it all joy, all that you're going through
Even when you are feeling down
Count it all joy, each moment is a gift to you
So turn it all around
And even in the darkest night
If you look hard enough
There's a trace of sunlight waiting there
Yes, waiting there for you

Been searching everywhere to find
That rainbow in the air
Whenever I came close it just seemed to disappear
I had to change my point of view
Start looking at myself
I can't believe I never knew
Everything that I need
Was right here, yes inside of me

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details.
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Sunday, July 9, 2006 11:42 PM CDT
ONE MORE DAY
Peace really does come from our love for God and His love…and our shared love with Nicholas that comes back to us over-and-over every day and night. We know we are blessed with God's love and as we do focus on our blessings, we are comforted. But then again we still do wonder why…and at the same time knowing that God's love is always good and always just right although at times it is so very hard to understand.

As God and Nicholas' love constantly comfort us, we still do wish for one more day with Nicholas like we shared from January 27, 2000 for 6 years, 3 months, and 28 days to May 25, 2006…

ONE MORE DAY (sung by Diamond Rio)
Last night I had a crazy dream
A wish was granted just for me
It could be for anything
I didn't ask for money
Or a mansion in Malibu
I simply wished, for one more day with you

One more day
One more time
One more sunset, maybe I'd be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day with you
One more day

First thing I'd do, is pray for time to crawl
Then I'd unplug the telephone
And keep the TV off
I'd hold you every second
Say a million I love you's
That's what I'd do, with one more day with you

One more day
One more time
One more sunset, maybe I'd be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day with you

One more day
One more time
One more sunset, maybe I'd be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day
Leave me wishing still, for one more day
Leave me wishing still, for one more day
With you

Note: You can hear the song by placing "www.ladaisey.com/onemore.html" in your browser.

AND, WE ARE THANKFUL
We are thankful for one more day, for the rest of our lives, to always have one more day with God and one day always have Nicholas at our side in every way. Nicholas, we are with you and you with us every day; thank you God!
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Saturday, July 8, 2006 11:59 PM CDT
KNOWING ALL THAT IS GOOD
Today was a day of knowing that every day is so much better when we focus on all that is good and all of our tomorrows...with Nicholas part of it all because of all the good that he has brought, and continues to bring, into our lives.
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Friday, July 7, 2006 11:59 PM CDT
TODAY AND THIS EVENING WERE OKAY BUT TONIGHT…
Settling into work is getting smoother with fewer occurrences of overwhelming heart and stomach aches, although all of our senses constantly long for Nicholas. Today and this evening were okay culminating into beautiful moments at Nicholas' site: Remember the movie, Titanic, and the scene where the lady is at the front of the ship leaning forward with her arms out embracing the wind? Remember how Nicholas enjoyed Hawaii (the warm trade winds we talked about) and swimming in the backyard (the delight of being in the sun having fun)? Blending those moments are what we experienced this evening with the warm, gentle yet strong wind blowing allowing us to embrace Nicholas as we stretched our arms out overlooking Nicholas' site and Briones Regional Park. Seeing deer slyly prancing on the grounds and the evening blue sky with the rising moon-seemingly getting brighter and brighter as it gets closer to being a full moon-providing an amazing backdrop presented a picture-perfect moment generating smiles.

The aches in our heart and stomach can be tolerated (Nicholas went through so, so much more) but tonight the aches are unbearable. Sometimes these occurrences just happen as a result of something we see, hear, or think about. We miss Nicholas although he is in the right place with God-we are happy for Nicholas and hurt because his love is so great. And we know that God is not a confusing God providing warmth, comfort, and love to one (Nicholas) and not another (mom & dad and our other three boys).

Leaving Nicholas' site tonight we "sang" the prayer he would always say before falling asleep:

"Now I lay me down to sleep,
I pray to the Lord my soul to keep,
Thy love be with me through the night,
And wake me with the morning light."

Nicholas has the morning and evening "light" to forever keep him safe, happy, and free; we know through trust that he lives on and many times it just feels so unreal that he is physically gone. Although transitioning through all of this is not emotionally easy at all, we trust God and love to see us through to the day we fully embrace Nicholas and Nicholas fully embraces us. In the meantime, remembering what we talked with Nicholas about-we just know that we are in each others soul and feeling mutual love. So we are never, ever alone.

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund are in the Home Page information above. (Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details.
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Thursday, July 6, 2006 10:51 PM CDT
THE NOTION OF TIME WITHOUT NICHOLAS AND TIME IN HEAVEN FOR NICHOLAS
The last paragraph of the July 1 journal entry talked about time and how we believe that when we are together with Nicholas again, because it will be via "God's speed," Nicholas will not have missed us and we all will simply relish the love that surrounds us!

Although the physical pain in our stomachs continue because we miss Nicholas terribly, we are experiencing that time without Nicholas is not being measured because of God's speed working in us as well. While we wonder when the pain will stop…we are finding that when we "can" stop wondering when the pain will stop and let the love of Nicholas in and around our lives soak in (that is still at work), God's love and Nicholas' love comforts us enabling gentle smiles.

The following excerpt from a book called, "Someday Heaven" by Larry Libby, is soothing to us as we think about Nicholas in heaven:

"HOW LONG WILL I BE IN HEAVEN?
When you're at your best friend's house, laughing and playing, time goes by so fast that you can hardly believe it. Zip! Whiz! The hands seem to fly around the clock. Maybe you can remember saying in your heart, 'Oh, this day is so good. I wish it could last forever!'

"Really, time won't go fast or slow, because there will be no time at all in heaven! If you stopped an angel and said, 'Please, what time is it?' The angel would just laugh and say, 'Why, it's right now and it's forever.'

"Jesus will see to all that. And even though Jesus may be the busiest person in all of heaven, He will never be too busy to laugh with you or sail a boat with you or go for a walk with you. Do you know what He said? He said, 'I am always with you' (Matthew 28:20)."
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Wednesday, July 5, 2006 10:44 PM CDT
NICHOLAS LOVED TO READ
Sometimes it seems right to just pray, listen, and read. Nicholas loved to read and we all have either experienced, seen, or read about the mutual love he had with so many of you and others. As we think about the source of Nicholas' love there is no doubt that it is God. We continually experience Nicholas' love today in so many things he did that are still having amazing impacts on our lives. It feels like Nicholas is a gift to all of us and the giver of the gift is God. This may seem like a play on words, however, we have shared gratitude for the gift we have in Nicholas and shared our constant gratitude for the blessings God has bestowed along the way. Putting it all together, we are so grateful for God being the "giver" of Nicholas-a gift that is forever illuminating the power of love.

As we read books at Nicholas' site as well as at home, love comes up virtually every time. And we are reminded about love and a book that speaks to how if we were to only do one thing-love-we could fulfill all rules, even the 10 commandments because if you "loved" you would not lie, cheat, steal… The book, "The Greatest Thing In The World," is by Henry Drummond. Just reading opens our hearts to learning more and prayer coupled with reflection has helped us love Nicholas in ways that soothes missing him physically. Nicholas was always reading or being read to with mom reading constantly and dad sporadically (although just about every day now at Nicholas' site). Reading has led our hearts and minds to reflection…quiet moments, soothing moments, and shared moments. Thank you, Nicholas!
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Tuesday, July 4, 2006 11:59 PM CDT
OUR FIRST 4TH OF JULY WITHOUT AND WITH NICHOLAS
Today mom & dad reflected back on Nicholas' first and only 4th of July-last year-while navigating the leukemia journey. Following is an excerpt from our July 4, 2005 journal:

"…Nicholas' spirit is GREAT and we are all over the Ronald McDonald House immune wing doing various things. We are planning to find an optimal spot overlooking the Port of Redwood City tonight, which is about 7 miles away, to view a fireworks show billed as SPECTACULAR. We will have a good 4th of July!"

And today is our first 4th of July without Nicholas in body; however, Nicholas is with us in spirit, in love, through God. Today, like many days we played a few 15-second movie clips of Nicholas just being Nicholas which is really not "just" 15-seconds of Nicholas because he truly radiated with love in everything he said and everything he did. A moment with Nicholas, like having "a piece of Nicholas," carry's well beyond the words he said or the action he took with others. This is a blessing from God…we have heard a lot about angels over the last 39 days and there is one particular phrase that illuminates Nicholas:

"Some people dream of angels, we have held one!"

So tonight at Nicholas' site, our eyes were warmed to the sparkles as we lit sparklers for and with Nicholas-celebrating Nicholas again as well as Independence Day. His spirit, love, and way of being continue to bless our lives…his loving spirit will never, ever pass away. As the moon began to light the sky and the ground, the first star we saw tonight help to light our hearts and souls. And the booming sounds of fireworks in the distance felt like echoes of love touching our bodies.

As GREAT as Nicholas' spirit was on July 4, 2005, it is even more SPECTACULAR now that he is "playing and having fun" in heaven… We just miss Nicholas so, so much!

A HYMN FROM CHURCH THIS PAST SUNDAY (by Stephen L. Bigger)
For us as we sing, read, and focus on the hymn below, we see love, light, life, Nicholas, heaven, and everything sweet dreams with God bring:

"Through the darkest night, long before the dawn,
Through the fiercest fight, Lord, Your glory will shine on.
So we lift our eyes to behold the prize;
We are finally free to worship at Your throne.
Safe, forgiven, we are grateful for the gift You have given.

"So let freedom ring!
Let it rise above,
By the power of Christ's sacrifice we are free to love.
Lord of Liberty, O Redeemer King,
By the grace of God let freedom ring, let it ring!

"When all hope is gone, when our wills are weak,
When our tears fall down, Lord, Your mercy we will seek.
May we trust in You to make our hearts new,
We will worship You, our Savior and our God.
Safe, forgiven, we are grateful for the gift You have given.

"My Jesus, 'tis of Thee, sweet Lamb of Calvary,
Of Your mercy, now I sing,
With all my heart, my soul, my everything!"

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund are in the Home Page information above. (Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details.
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Monday, July 3, 2006 10:37 PM CDT
WE FEEL LOVE ALL AROUND US SO LETTING GO AND TRUSTING…
One step at a time, one day at a time, looking forward, and moving forward are a few approaches toward overcoming all of the stomach aches that linger…and similar to the comfort and calmness that have soothed us while loving God during the "roller coaster" effect of everything Nicholas experienced since November 19, 2004 to May 25, 2006, today marks another day and opportunity for us to really let go of our fears, fully placing ourselves in God's hands. We feel, trust, and believe that God desires so much to guide our lives through the goodness and wonderment that He has for us. Perhaps it would be relatively easier because we know what we trust and believe in based on God's word and the wonderful way Nicholas lived his life. Love is in control and love begets love so Nicholas is loved, receiving all the derivatives of God's promises no matter how you explain love.

I guess what we feel is that we have to trust God so fully allowing nothing except His love to take over in our lives. We feel God understands that it is not easy for us (as most of us) to completely turn EVERYTHING over to Him. He recognizes there are so many phases of this "passing" transition. And we are sensing that it is not about the phases, it is about focusing on God to guide us through the phases. He loves us and wants to do just that, EVERYTHING to love us so we do not have to "find our way" through these times. Nicholas' journey then and now is with God and it feels right to really turn EVERTYHING over to God enabling us to "be" closer to Nicholas because we will solely be listening, following, and experiencing God's love without over thinking everything, which itself has no power except "swirl."

Of course, we will never, ever forget so it is about remembering the love God provided during the journey enabling the blessings that we have talked so much about throughout. And not forgetting enabling us to keep that love so fresh that by itself will fuel our love to be greater and greater in God. It's not easy-we miss Nicholas so much because he is still everywhere in our hearts and lives-so we will continually pray, listen, follow…really follow His word & voice and be grateful to expect love to be love.

We are so grateful to still experience Nicholas' love that will continually bless our lives and we feel the lives of children and others, which is his passion. Remember?

MOM & DAD ARE FULLY BACK AT WORK
While dad transitioned fully back to work two weeks ago, mom started today for the first time since November 19, 2004. The emotions are heartwrenching and painful; will you please pray with us specifically on this transition while we keep our focus on being thankful for the blessings that enabled Nicholas to navigate the things he did...while remaining so faithful, caring, and loving.

HAPPY 4TH OF JULY, everyone! Nicholas loves firework displays and sparklers. Will you light a sparkler for him?
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Sunday, July 2, 2006 11:32 PM CDT
ONE MONTH AGO TODAY…THE CELEBRATION OF NICHOLAS' LIFE
Along with hundreds of you at the Viewing Service we held on June 1; and hundreds more at the Memorial Service, Interment, and Celebration of Life on June 2, so many of you wanted to help develop and pull together all of the overall-celebration of life services which was yet another blessing of love and support you continually provided to us. To everyone, your love for Nicholas is still so amazing-thank you!

While one month ago today was the celebration of Nicholas' life, today we are acknowledging-through this journal-those of you behind the scenes enabling the overall "Celebration of Nicholas' Life" (including the Memorial Service and Interment Service) to take flight & soar, and thank everyone else who wanted to help:

-CYNDI Moritz-Atkinson: "Piece of Nicholas" puzzle, bubbles
-SARAH Atkinson: Puzzle assembly
-SOHA Athanasios: Framed artwork and notes from Nicholas, CDs to contribute toward the Video Tribute (Nicholas' CDs were still in Denver)
-MARIE Andel: Memorial Service Speaker
-GINA Baker: Celebration of Life speaker, Nicholas Colby Fund set up
-SARA Bannwart: Interment singer
-SHIRLEY Bacchus: Memorial service speaker
-VALERIE Bigelow: Moraga Valley Presbyterian Church liaison, Celebration of Life display setup of Nicholas' personal items
-MINAS Be-Emmet: Celebration of Life cleanup
-GINNY Bruzzone: Video Tribute creator/developer, printed "Program" creator/developer
-MARILYN Corvin, Reverend, Lucile Packard Children's Hospital: Celebration of Life speaker
-ALEX Cowling: Co-created the collages of Nicholas, Celebration of Life cleanup
-DOMINIQUE Cowling: Celebration of Life cleanup
-KATHY Cowling: Planning/management, Memorial Service speaker, Celebration of Life cleanup
-LARRY Cowling: Planning, Celebration of Life emcee, Celebration of Life cleanup
-STEPHANIE Cowling: Church lobby preparation, speaker, Celebration of Life cleanup
-TOM Dabasinskas, Pastor, Moraga Valley Presbyterian Church: Pastor of services
-PHYLISS Edwards: Tissues, Bubbles
-DON Ellison: Celebration of Life speaker
-KJ Estudillo: Memorial Service speaker
-JORDAN Fillmore: Pallbearer
-BRUCE Fox: Funeral director
-LINDA Freitas: Planning, Memorial Service singer
-CHRISTOPHER Gilbert: Planning, Memorial Service speaker, pallbearer
-FELECIA Gilbert: Church lobby preparation, speaker, Celebration of Life cleanup
-JASON Gilbert: Memorial Service display setup of Nicholas' personal items
-SCOTT Grane, Wolf Camera: Editing and development of picture for Nicholas' marker
-MATT Guelfi, Hartmann Studios: Plants, video engineering, catering
-MELINDA Guelfi: Video engineering pre-work, silk tablecloths
-ED Harris: Celebration of Life singer
-Derek Jones: Celebration of Life cleanup
-KEVIN: Moraga Valley Presbyterian Church sound manager
-CHICO Kinnebrew: Celebration of Life cleanup
-JAMIE Kinnebrew: Co-created the collages of Nicholas, Celebration of Life cleanup
-KAREN Kinnebrew: Co-created the collages of Nicholas, Celebration of Life cleanup
-LINDA LaSorsa: Balloon bouquets and arc
-MATTHEW Martinez: Pallbearer
-TIMOTHY Martinez: Pallbearer
-TERRY McGlynn, Admac Digital Imaging: Printing of the "Program"
-GREG Mollering: Moraga Valley Presbyterian Church logistics
-JUDY Mollering: Moraga Valley Presbyterian Church liaison and logistics
-DAVE Nieuwsma: Memorial Service speaker
-ALEXANDRA Nieuwsma: Celebration of Life harpist
-ANASTASIA Nieuwsma: Celebration of Life harpist
-SOPHIA Nieuwsma: Celebration of Life harpist
-VICTORIA Nieuwsma: Celebration of Life harpist
-MATTHEW Reamer: Photographer
-CHERIE Skillman: Funeral service counselor
-THUNDER, Golden State Warriors' mascot: Celebration of Life appearance
-AL Tolentino: Photography
-STEPHANIE Tolentino: Planning, balloons
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Saturday, July 1, 2006 11:59 PM CDT
CHILDREN BRING US JOY WHILE NICHOLAS' SPIRIT STILL HELPS TO FULFILL OUR LIVES
We spent the day around two of our nieces and Marquis, Nicholas' 2nd cousin. I, dad, have 8 brothers & sisters and being number 7 of 9 with most of the older ones nearly 10 years or more before me, I have always been around children. Lots of children…through these nephews & nieces and their kids. Coupled with neighbors during our married life, we constantly have children around as "playing and having fun" is something we just always have done with the kids before Nicholas, with Nicholas, and now with Nicholas in his spiritual way guiding us these days toward even being better at "playing and having fun."

Our nephews and nieces are truly like best friends to us and we have been so blessed with the love and care they provide to us-we guess it is just the kid in us that we do not let go of and we enjoy it so, so much. And things just hurt so, so much right now.

The hard part in our lives now are our emotions that pop up sporadically, in the midst of just about anything we are doing and even when we are just in a mental place that seems neutral. We trust and believe-well, we know because Nicholas' life was and is so pure and loving-that he is "playing and having fun" in the golden play yard (part of his heaven). So, we know Nicholas is with God and nothing do we fear in terms of his condition and surroundings: He is surrounded by the purity and perfection of the greatest love. Yet, missing Nicholas constantly and feeling the turning of our stomachs constantly have become our life.

We mention all of this because our lives have become a balancing performance in terms of loving Nicholas and missing him so, along with enjoying and being with children that have always been a big part of our lives. So we pray, we pray knowing that God loves us so much that he will shepherd us through these times. He will; we trust and believe that God will provide for us as we continually open our hearts and trust Him. And while it has only been 37 days since Nicholas has passed, the number of days are not a measuring stick for anything because God's love and God's "speed" is not governed by numbers at all. GOD is loving Nicholas and while we miss him terribly, GOD is loving Nicholas and there are no better hands for him to be in. So, we pray for strength and God's love to do what it does…love, enabling us to not forget, but live knowing Nicholas is loved and when we see him again…because it will be "God's speed," Nicholas will not have missed us, we all will simply relish the love that surrounds us!

Friday, June 30, 2006 11:07 PM CDT
OUR BODIES HURT BUT WE KNOW THAT GOD IS LOVING NICHOLAS, AND GOD IS LOVING US SO WE PRAY FOR HELP

 

We also pray to be nearer to Nicholas and feel God's presence assuring us of His love for Nicholas…and this is what we feel in expressions to Nicholas:

Nicholas, our love, forever you are so deeply in every aspect of our lives. You are forever loved so deeply that we just know you are perfectly, and purely, happy and free from earthly infirmities…"playing and having fun" in your golden play yard.

While life sometimes seems to have no reason or rhyme to how things unfold, when we spiritually look at life here on earth we just know that your loving touch-through the many ways your spirit embraced our hearts and souls-was not by chance. Your love, Nicholas, was and is a gift that guides us to love. And it guides our forever-memories to love in our life, you son! You continually light up our world and spirits illuminating our path even closer to God. You brothers are blessed because of you and love you so, so much. And son, the purity and perfection of God's arms around you must feel so, so good. You, son, are so amazing. We are sure God is more than pleased…and He is more than pleasing you.

You are not away from us and remember, we know that our shared love will always be felt-we just know that and trust and believe God is making this, too, true for you.
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Thursday, June 29, 2006 11:59 PM CDT
CONVERSATIONS
This evening at Nicholas' site there was another surprise visit by friends (met during Nicholas' treatment at Stanford-LPCH). And once again while reading a book aloud, a visit brought joy to our hearts through our collective reflections on Nicholas and the way he was with people of all ages (and the way he still is with people). Expressively, we were told that our doing the things that Nicholas did with people would further open our hearts to his love resulting in peace & joy in our lives. They were talking about the Nicholas Colby Fund…"Helping children be children."

Sometimes we try to describe what it is we are feeling along with our emotions; words just do not make sense to us right now. We do, however, feel Nicholas being at peace and full of wonderment along God's side. We sense his playfulness scrambling in and around us throughout the days and nights. Then we sort of let go, falling onto God from our constant leaning on Him for help and direction. And missing Nicholas we ask God to show us the way while we trust and obey.

READING IT AGAIN
Nicholas certainly had favorites when it came to books, songs, movies, and TV shows. Many times he wanted to read it again, sing it again, watch it again as well as act-out what he was learning. It was fun watching him portray different characters; and sometimes we can vividly see him acting out scenes from things read, sung, and/or watched. Other times we play some of the videos we have of him acting out scenes.

Nicholas is the joy that nothing can take away because Nicholas was brought to us by God…and nothing has power over God…and we are comforted experiencing Nicholas' joy time-and-time again.

Tonight's book, "The Legend Of The Three Trees" by Catherine McCafferty, is one we read to Nicholas a few times. You may remember we talked about it a long time ago. We mention it again now because the notion of God "providing" is poignantly revealed. An excerpt from the book is, "Sometimes, the dreams that we have for ourselves are much smaller than the dreams that God has for us." As hard as this is, we trust and will continually work to obey His words having faith that He will provide…

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund are in the Home Page information above. (Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details.
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Wednesday, June 28, 2006 11:45 PM CDT
IN THE MIDST OF UNDERSTANDING
Remember the journal about "I Wonder Why" written by family friend, Hana (November 11, 2005 journal)? While we still wonder why…we pray and listen toward better understanding God's love and His spirit that has always been in operation around Nicholas-and more so now. Nicholas was more than kind, more than caring, more than loving. Through his constant actions it is clear that his love was directed by God and his love was fueling hearts with love, truly from all walks of life and all ages. We were and are blessed with Nicholas IN OUR LIVES.

The things we did and the things we said with Nicholas provide constant memories of love revealing truth about faith from the perspective that Nicholas was able to trust our love and promises to always be with him…as we trusted his love that is with us! Knowing that God is so, so much greater than all of us have us feeling just how much (more than we can imagine) God is delivering on our faith in Him. And Nicholas deserves all the good in heaven!

SURPRISES AND JOY
This evening while mom & dad were reading a book ("You Are My Miracle by Maryann Cusimano Love*) at Nicholas' site, we received a nice surprise via a visit at the site by Nicholas' nanny-Kimmy-and family friend-Julie.

We enjoyed the gentle warmth and occasional breeze that generated lovely sounds from the wind chime and soothing sights from the three-tiered rainbow pinwheel spinning freely with the breeze. We enjoyed the colorful sunset, gazing at the clouds forming wonderful shapes reminding us of Nicholas, and listening to songs (remember Linda singing "Held"** during the Memorial Service?).

And then the crescent-shaped moon against the blue twilight sky warmed our hearts and souls some more as the shape of the moon immediately had us seeing a "smile." Sharing stories while thinking and praying had us rejoicing, momentarily, and there was some laughter. Mom & dad were reminded about another thing Nicholas said; "As long as we are laughing, we are having fun!"

*The book is about how "nothing beats the magic time spent between parent and child…" and is "presented in gentle rhymes and illustrations as warm and glowing as a winter's fire…" Some excerpts: "I am your cocoa; you are my marshmallow…I am your wrapping; you are my surprise…I am your steady hands; you are my rising star…"

**The words and other information about the song are in the journal dated June 8, 2006.

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund are in the Home Page information above. (Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details.
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Tuesday, June 27, 2006 11:59 PM CDT
TIME
Nicholas taught us about time…time to SIT, TALK, PAT ("patting" him helped to make him comfortable), ROCK (being "rocked" gently in our arms and/or on our laps was soothing to him), SHARE, CARE, WALK, RUN (even when physically it was improbable he created the courage and strength spiritually, mentally, and physically to more than try…he ran in his way a step at a time and trying again when he fell), LAUGH, PLAY, PRAY, CRY, and above all to better understand LOVE. Nicholas' love continues to teach us these things and more; and through the guestbook entries, cards, emails, and telephone calls the stories of Nicholas' love are growing. Thank you!

Through God, love was the greatest thing that Nicholas helped us to better understand because through love all times and things were right for everyone around each other (near or far). Through God and love…Nicholas is still teaching mom & dad as we sit, talk, pat (remembering Nicholas constantly), rock (feeling his presence consistently), share, care, walk, run, laugh, play, pray, cry, love, and so much more from A ~ Z.

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund are in the Home Page information above. (Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details.
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Monday, June 26, 2006 10:45 PM CDT
MEMORIALS NEAR AND FAR
We have received word from a few family/friends regarding memorials that will be constructed...plans underway. These memorials range from Lafayette here in the Bay Area ~ to the Central Coast in the Monterey Area ~ to the Hollister area in the Central Valley. Although we will provide details of these plans as they become final, we are mentioning it now to express our appreciation to everyone continually "showing up" in our lives-in your own way-helping us to feel more than supported…we just know that we are loved. And the reason for it all is Nicholas! What a blessing he is in our lives: touching, guiding, and leading us even today because of God.

JOURNALS AND THE UPCOMING NICHOLASCOLBYFUND.ORG SITE
The focus of our journals always has been Nicholas and moving forward focusing on him will continue. While we have touched on our feelings, we want to ensure that Nicholas remains the focus because it is through God and because of Nicholas that sharing experiences and our learnings have meant so much to us-and we trust have meant so much to you as well. In fact, Nicholas saying, "Do you want a piece of me?" is seemingly his calling card to all of us so from that perspective Nicholas' legacy living on through the Nicholas Colby Fund will continue to provide real experiences (pieces of Nicholas) that should touch our hearts and lives moving forward.

Speaking of the Nicholas Colby Fund, the frame of the new website (www.nicholascolbyfund.org) is in place with some content; however, the final logo, structure of the site, content flow, etc. will soon be populated and on this CaringBridge site we will let you know once the nicholascolbyfund.org is in full operation. Also, we will soon provide details about the Nicholas Colby Fund including how the Fund has already helped others. Nicholas' legacy will live on…"Helping children be children." Thank you for your direct and in-direct support and donations-you continue to make a wonderful difference in Nicholas' life and spirit, in our lives, and in the lives of others the Nicholas Colby Fund helps!

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The content of the message about the Warriors Foundation and auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. (Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details.
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Sunday, June 25, 2006 11:37 PM CDT
THE GREATEST LOVE IN THE WORLD
Today is the 31st day since Nicholas has left us in body and although we believe Nicholas is in heaven-experiencing ALL the good prevailing thoughts imagine heaven to be-and believe God absolutely loves us as well...the physical pain and pain cutting into our minds generates unbearable moments throughout the day & night.

And like so many times during the 552 days Nicholas was navigating all the "leukemia and bone marrow stuff" (when with Nicholas we would talk, cry, pray, and feel God's love) we cry, pray, and do feel God's love. We pray more and more to open up to better receive God's love allowing God's love to do what the greatest love does...

Our trust, belief, and witnessing love do some wonderfully amazing things for Nicholas during the 552 days (in fact, before November 19, 2004 and even now) clearly demonstrates that God does things "for" us and not "to" us. While "hope" is a good thing and no good thing ever "dies"...with evidence of God's love we more than hope His word fulfills its promises-we trust God's word to do what it says it will do. Through God our little sunshine, Nicholas, continues to light up our lives in thought and feeling all around us. Oh how we need God to fulfill us as we pray recognizing that only God can give us joy & peace. And Nicholas, "you know, you just know" that we are loving you as we know you are loving us…we are so, so grateful to know that God, Jesus, love, spirit, and all the pure & perfect attributes of heaven are your playground where you are "playing and having fun" providing love to all of us as we think of you!

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The contents of the message about the Warriors Foundation and there auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. (Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details.
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Saturday, June 24, 2006 11:36 PM CDT
OVERWHELMED
The feeling of emptiness is overwhelming-we miss Nicholas so much. Although we absolutely trust that he is fine: fulfilled with all the goodness and greatness of God in all the goodness and greatness of God's work…

WHAT WE READ TODAY
Love has been constant in our lives…although it has been so easy with Nicholas because he radiates with love himself and love really begets love. So if you could not tell, the love in our journals is truly love in our lives (in everything we do love is the foundation that builds who we are and how we "show up" in the lives of others). Not surprising then, today the book we read at Nicholas' site was about love-we trust everyone at every age and stage in there life will appreciate the way love is presented in the book, "No Matter What" by Debi Gliori:

Small was feeling grim and dark.
Playing toss and fling and squash,
Yell and scream and bang and crash.
Break and snap and bash and batter…
"Good grief, " said Large.
"What is the matter?"

Small said, "I'm a grim and grumpy little Small and nobody loves me at all."
"Oh Small," said Large. "Grumpy or not, I'll always love you no matter what."
Small said, "If I was a grizzly bear, would you still love me, would you care?"
"Of course," said Large, "bear or not, I'll always love you no matter what."
Small said, "But if I turned into a bug, would you still love me and give me a hug?"
"Of course," said Large, "bug or not, I'll always love you no matter what."

"No matter what?" said Small and smiled. "What if I was a crocodile?" Large said, "I'd hug you close and tight, and tuck you up in bed each night." "Does love wear out," said Small, "does it break or bend? Can you fix it, stick it, does it mend?" "Oh help," said Large, "I'm not that clever, I just know I'll love you for ever."

Small said, "But what about when we're dead and gone, would you love me then, does love go on?" Large held Small snug as they looked out at the night, at the moon in the dark and the stars shining bright. "Small, look at the stars ~ how they shine and glow, but some of those stars died a long time ago."

"Still they shine in the evening skies, love, like starlight, never dies."

Note: The books we have talked about on these journals deeply touch your senses when you read the words and see the pictures. Until then, we trust Nicholas' selected books touch your heart as they provide a glimpse into his heart…and now his soul as his spirit is lifted to the highest of the high, and with the highest of the high!

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
The contents of the message about the Warriors Foundation and there auctioning a special Warriors experience to benefit the Nicholas Colby Fund is in the Home Page information above. (Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details.
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Friday, June 23, 2006 11:44 PM CDT
FLAVOR OF HAWAII IN LAFAYETTE
Most of you know that Nicholas loved being in Hawaii: the beach, snorkeling, dolphins, rainbows… Tonight, Hawaii was brought to his Oakmont site; Sarah (a family friend) just returned from a high school graduation trip spent in Hawaii. She brought a Lei, sand, and a song sung Hawaiian style called "Over The Rainbow" (you could hear it in the movie, "50 First Dates"). So at his site tonight, the Lei was laid out into a heart shape, the sand was sprinkled over his site, and "Over The Rainbow" was playing as we enjoyed the sunset…

And a wind chime gift from friends (Emma & Michael) met at Children's Hospital-Oakland was placed in a tree over his site. The wind that sometimes sweeps over the rolling hills of Briones Regional Park provides an array of speeds…and generates soothing sounds from the chimes.

THANKFUL
Although we have not fully shared the pain that penetrates everywhere within us, we are thankful for countless blessings. We have been asked in many caring ways about our un-wavering trust in God's love. While it is has been a very, very difficult and devastating leukemia and bone marrow journey, we have been thankful for the ability to love Nicholas in all the ways shared (most of you read about on these journals) because God has "enabled" us to love Nicholas. It may seem like God did not give Nicholas what he needed (Nicholas prayed and called out to God for "what I need") and we still struggle with this notion along with questions of why. And then we trust God to know what Nicholas needed…and knew as well as know how mom & dad needed as well as needs to "be there" for Nicholas fulfilling him in ways that could only be accomplished through God. God has given us the ability to provide for Nicholas in ways we simply may not understand right now…but we feel Nicholas was-and IS-loved in ways that let him know that he was-and IS-LOVED!

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
June 19, 2006 through August 21, 2006 (or later)
The contents of the message about the Warriors Foundation and there auctioning a special Warriors experience to benefit the Nicholas Colby Fund will be in the Home Page information above, at least through August 21, 2006. (Please see above or access (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html) for complete details.
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Thursday, June 22, 2006 11:59 PM CDT
***UPDATE UNDER "TO OUR FAMILY AND FRIENDS"***

REMINDER: GOLDEN STATE WARRIORS FOUNDATION AND NBA CARES
June 19, 2006 through August 21, 2006 (or later)
The contents of the message about the Warriors Foundation and there auctioning a special Warriors experience to benefit the Nicholas Colby Fund will be in the Home Page information above at least through August 21, 2006. (Please see above)

TO OUR FAMILY AND FRIENDS
It has now been four weeks since Nicholas has passed and our hearts and minds hurt so much. The pain seems to be settling deeper and deeper, and our prayers keep on getting stronger and stronger. Stronger because we need God just as much now as we have always needed Him as we pray being thankful for so much good that has been in Nicholas' life. And we pray for God's love to continually embrace us as He certainly is embracing Nicholas. As children, many of us remember the song, "Jesus loves me this I know, for the Bible tells me so…" As horrible the last four weeks have been, we think that we would not want to have been without God during any moment of Nicholas' 552-day fight or now. As we have sung and prayed words from the song, "He's My Son"…"God, who he need right now is you…" and we open our arms needing God just as much now.

"To our friends who have become family and to our family who are our friends, may you be blessed with the same love and care you have given to Nicholas and to us." This is the message we wrote on the Celebration of Life program and it is the message that continues to be true in terms of how you are still in our lives-thank you so very much for being with us, in your own way but "being with us!"

All three hospitals (Children's Hospital-Oakland, Stanford-Lucile Packard Children's Hospital, and The Children's Hospital-Denver) continue to be in our lives through their cards, guestbook entries and telephone calls. Since Nicholas' passing, his primary nurse at the TCH-Denver has talked with us a few times and today we received a call from his doctor at the TCH-Denver. A warm, helpful conversation ensued and it reminded us of the amazing loving & attentive care Nicholas regularly received. It has always been a blessing for mom & dad to consistently experience the staff-at all levels-"being there" for Nicholas every step of the way: during good medical days and bad medical days. The medical staff has become friends and, here too, they have become family to us. Thank you…well instead of stating the names at these three hospitals that will take us down the alphabet…thank you all at CHO, LPCH, and TCH! You show what it means to care and Nicholas was and is benefiting from it in many dimensions, as well as mom & dad.

God is with us, He has placed you in our lives!

WHAT WAS READ TONIGHT
Nicholas knows that he is loved and tonight at his site dad read, "I Love You As Much…" by Laura Krauss Melmed. Here are the words:

Said the mother horse to her child, "I love you as much as a warm summer breeze."
Said the mother bear to her child, "I love you as much as the forest has trees."
Said the mother camel to her child, "I love you as much as the desert is dry."
Said the mother goose to her child, "I love you as much as the endless blue sky."
Said the mother sheep to her child, "I love you as much as the grass on the hill."
Said the mother mouse to her child, "I love you as much as the grain in the mill."
Said the mother goat to her child, "I love you as much as the mountain is steep."
Said the mother whale to her child, "I love you as much as the ocean is deep."
Now sleep, child of mine, while the stars shine above-I love you as much as a mother (father) can love.
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Wednesday, June 21, 2006 11:20 PM CDT
VIEWING SERVICE VIDEO
(From the "Viewing" the night before the Memorial Service)

The Video Tribute from the Memorial Service-that was set to poignant music including songs that Nicholas loved, and pictures including many of you-will soon be available. In the meantime, following is the web address to the view the Viewing Service video that was playing at Oakmont the night before the Celebration of Life services held on June 2, 2006. This video primarily shows Nicholas & family members, captions, and includes quiet music enabling soothing reflection moments.

Please go to www.mem.com; go to "Search" under the menu bar on the left side and enter "Gilbert" and press "GO;" then at the bottom of the page showing people with the last name of Gilbert select a "page" that reveals Nicholas; then click on Nicholas' name; then select "Music" under the menu bar on the right side of the page; turn your PC speakers on and you will then see, hear, and have another opportunity to reflect on Nicholas.

Again and again, we know we are blessed to have you in our lives and we thank you so very much.

REMINDER: WARRIORS FOUNDATION AND NBA CARES
As you have seen or learned, the Golden State Warriors (professional basketball team) relationship continues to vibrantly live with Nicholas! Through the Warriors Foundation (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html), they are auctioning a special Warriors experience to benefit the Nicholas Colby Fund. Please copy and paste the link above into your browser or go to the Warriors Home Page to access the "Warriors Fan Experience Auction" link for all the details about the auction (and see another picture of Nicholas with Thunder-his favorite mascot).

Remember, we will soon transition this CaringBridge site to a www.NicholasColbyFund.org site enabling continuance of the sharing all of us have been part of, making it more interactive, and enabling Nicholas' legacy to live on-helping children be children.
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Tuesday, June 20, 2006 11:59 PM CDT
***WE CANNOT LET GO***
It has now been 26 days since Nicholas has passed; along with the constant piercing and gut wrenching pain we are sporadically comforted by calling out "Father…" as we pray to God for His love. Remember, crying and praying with Nicholas was a comforting way to be closer to God as our crying enabled us to deeply connect with our feelings transforming them into words of prayer.

Because we cannot, or chose not to, let go we are so thankful for so many blessings received prior to and during the 552 days of all the "leukemia and bone marrow stuff." A June 8 guestbook entry from New York provided a poignant perspective: "…his seemed a life short of nothing but time." And we will hang on to last night's journal one more day as we, too, reflect on all of you and your amazing way that you love Nicholas and support us.

So one more time: bubbles, shooting star, what makes Nicholas happy, what Nicholas wants…

BUBBLES
Remember the bubbles jetting out from car windows after the Memorial Service, during the procession? Nicholas loves bubbles: they are full of light, color, and fun. PLEASE CLICK ON VIEW PHOTOS and scroll to the third picture to see the bubbles floating tonight at Nicholas' site. They were floating around and up, up to heaven to continually delight Nicholas.

CONCLUDING THE CELEBRATION OF LIFE RECAP
From the Memorial Service, Interment, and Celebration of Life, Nicholas' passion and love guided their delivery and last night's journal concluded the recap of speakers and singers (please click on View Photos and scroll to the second picture to see the details of the overall celebration). And after the Nieuwsma girls blessed our ears and hearts with beautiful songs played on a harp, mom & dad reflected on Nicholas' life and the Celebration of his life.

REFLECTION
Mom & dad used a "shooting star" (not falling star) analogy asking what do many of us say when a shooting star is seen? The common answer…see it again! Keeping with this analogy, we will see Nicholas again, again, again…because Nicholas lives in our hearts in so many different ways for most, if not, all of us. Because of all your beautiful thoughts and prayers, and "because you livvve son, my world has twice as many stars in the sky."

We then shared Nicholas' responses to questions a couple of months ago by a Stanford-LPCH social worker that was very engaged with Nicholas and mom & dad since March 31, 2005. The responses were generated by an open, free-flowing conversation that we were aware of. Following are some of the questions along with Nicholas' responses:

What makes you happy?
-Playing with my toys
-Drawing and painting pictures
-Writing, board games, and card games
-Playing with friends
-Easter egg hunts

What makes you sad?
-I do not get sad much

What are things that you want?
-Go to Disneyland and the Monterey Bay Aquarium again
-When things hurt, for mom & dad to fix it
-I like it when mom rocks me
-I like it when dad hugs me when I do not feel good
-Super powers: being fire, really strong, stretch real far
-To fly

Well, Nicholas is flying with amazing powers at God's side, in God's hands, and in God-speed… We realize these truths AND we miss Nicholas' physical presence so much.

LIGHTING UP OUR WORLD
Concluding the celebration, once again Nicholas' song-of-love began to play. (It is the song playing in the background once this site is accessed; are your PC speakers on right now for you to hear his song about caring, passion, love, and so much more that is truly pieces of Nicholas continually lighting up our world.)

REMINDER: WARRIORS FOUNDATION AND NBA CARES
As you have seen or learned, the Golden State Warriors (professional basketball team) relationship continues to vibrantly live with Nicholas! Through the Warriors Foundation (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html), they are auctioning a special Warriors experience to benefit the Nicholas Colby Fund. Please copy and paste the link above into your browser or go to the Warriors Home Page to access the "Warriors Fan Experience Auction" link for all the details about the auction (and see another picture of Nicholas with Thunder-his favorite mascot).

Remember, we will soon transition this CaringBridge site to a www.NicholasColbyFund.org site enabling continuance of the sharing all of us have been part of, making it more interactive, and enabling Nicholas' legacy to live on-helping children be children.
________________________________________
Monday, June 19, 2006 11:59 PM CDT
BUBBLES
Remember the bubbles jetting out from car windows after the Memorial Service, during the procession? Nicholas loves bubbles: they are full of light, color, and fun. PLEASE CLICK ON VIEW PHOTOS and scroll to the third picture to see the bubbles floating tonight at Nicholas' site. They were floating around and up, up to heaven to continually delight Nicholas.

***CONCLUDING THE CELEBRATION OF LIFE RECAP***
From the Memorial Service, Interment, and Celebration of Life, Nicholas' passion and love guided their delivery and last night's journal concluded the recap of speakers and singers (please click on View Photos and scroll to the second picture to see the details of the overall celebration). And after the Nieuwsma girls blessed our ears and hearts with beautiful songs played on a harp, mom & dad reflected on Nicholas' life and the Celebration of his life.

REFLECTION
Mom & dad used a "shooting star" (not falling star) analogy asking what do many of us say when a shooting star is seen? The common answer…see it again! Keeping with this analogy, we will see Nicholas again, again, again…because Nicholas lives in our hearts in so many different ways for most, if not, all of us. Because of all your beautiful thoughts and prayers, and "because you livvve son, my world has twice as many stars in the sky."

We then shared Nicholas' responses to questions a couple of months ago by a Stanford-LPCH social worker that was very engaged with Nicholas and mom & dad since March 31, 2005. The responses were generated by an open, free-flowing conversation that we were aware of. Following are some of the questions along with Nicholas' responses:

What makes you happy?
-Playing with my toys
-Drawing and painting pictures
-Writing, board games, and card games
-Playing with friends
-Easter egg hunts

What makes you sad?
-I do not get sad much

What are things that you want?
-Go to Disneyland and the Monterey Bay Aquarium again
-When things hurt, for mom & dad to fix it
-I like it when mom rocks me
-I like it when dad hugs me when I do not feel good
-Super powers: being fire, really strong, stretch real far
-To fly

Well, Nicholas is flying with amazing powers at God's side, in God's hands, and in God-speed… We realize these truths AND we miss Nicholas' physical presence so much.

LIGHTING UP OUR WORLD
Concluding the celebration, once again Nicholas' song-of-love began to play. (It is the song playing in the background once this site is accessed; are your PC speakers on right now for you to hear his song about caring, passion, love, and so much more that is truly pieces of Nicholas continually lighting up our world.)

***WARRIORS FOUNDATION AND NBA CARES***
As you have seen or learned, the Golden State Warriors (professional basketball team) relationship continues to vibrantly live with Nicholas! Through the Warriors Foundation (www.nba.com/warriors/community/Nicholas_Colby_Gilbert_Auction.html), they are auctioning a special Warriors experience to benefit the Nicholas Colby Fund. Please copy and paste the link above into your browser or go to the Warriors Home Page to access the "Warriors Fan Experience Auction" link for all the details about the auction (and see another picture of Nicholas with Thunder-his favorite mascot).

Remember, we will soon transition this CaringBridge site to a www.NicholasColbyFund.org site enabling continuance of the sharing all of us have been part of, making it more interactive, and enabling Nicholas' legacy to live on-helping children be children.

NOTE: In case I did not state the correct Warriors link above for you to access the Warriors Foundation and their effort for Nicholas, I will provide it tomorrow night although beginning tomorrow (Monday) I believe you will be able to access complete information through the Golden State Warriors home page>Community>Warriors Foundation.


4:07 PM
HAPPY FATHER’S DAY
HAPPY FATHER’S DAY
“Happy Father’s Day!” in a soft, warm, loving way would have been the first thing Nicholas said this morning—or just after midnight last night as we were often up until then. Today at church and a brief stop at a Farmer’s Market we were around children as any other day and, understandably, Nicholas was the lens for which we saw the children, the families, and the congregation. As gut wrenching difficult every moment continues to be, we see Nicholas in the world of our eyes, hearts, souls, and spirit. And amazingly, seeing Nicholas spiritually makes some of these encounters okay. Okay, we guess, because seeing Nicholas we still see God’s loving touch and perfect work although it is still so piercingly painful to be without Nicholas. We trust God’s love to deliver peace, comfort, and love although some things are still hard to understand.
One of our prayers on this Father’s Day is trusting God’s words to deliver what they say they will…and perhaps Nicholas is saying Happy Father’s Day to my father…and I believe I am feeling, really feeling, in my heart and soul that Nicholas’ spirit is delivering a kiss to me and patting my back with the gentle, loving touch his beautiful little hands always delivers!

Our Father’s Day wishes is that every father today, and everyday, continually cultivates and really “show” love to your family. It is so comforting to know—to really know—that the love shared is received, felt, and shares itself. When you wake up in the morning, when you may be away during the day, and when you go to sleep at night…knowing the high, active level of love shared within your family fuels your heart and soul to a point that comforts more than you would ever, ever, ever imagine. Love and really help your children to be children…


Saturday, June 17, 2006 11:59 PM CDT

***CONTINUING OUR RECAP OF NICHOLAS’ JUNE 2 CELEBRATION OF LIFE***
Picking up from Thursday night, completing the recap will continue Sunday night and should be complete by Tuesday night.

MUSIC AND PRAYER ARE OUR BRIDGES GETTING US WHERE WE WANT TO GO
Throughout Nicholas’ journey in life, not just the leukemia and bone marrow journey, music has been a bridge for many of our conversations—many experiences and expressions. Our prayers have turned into songs and our songs have led to prayers.

You may remember the song, “Because You Live,” by Jesse McCartney that we would hear over and over on the Disney Channel. As much as many of you as well as mom & dad have used sunshine and star in conversations describing Nicholas, many months ago we modified the song, “Because You Live,” to fit how we felt. Remember, we sang it like this: “Because you livvve, son, my world, has twice as many stars in the sky…”

As we listen to the words since Nicholas’ passing, we choose to interpret part of the song and position it as another reason for us to carry on Nicholas’ passion for caring about children. Nicholas, himself, was a child in one respect; a beautiful, caring person in another respect; with a spirit that is so alive, at play, and still at work for God today. Following is a portion of the song flowing throughout our thoughts: “…Because you live there’s a reason why; I carry on when I lose the fight; I want to give what you’ve given me, always; because you live…”

***NOTE***
Please click on View Photos and scroll to the third picture showing the transition underway of the family/Nicholas’ site at Oakmont in Lafayette. (Other photos of the transition, and view to the right of the setting sun, are on the third album below under Links.)

***GET READY***
AMAZING RELATIONSHIP…WARRIORS FOUNDATION AND NBA CARES
The Golden State Warriors (professional basketball team) relationship continues to vibrantly live with Nicholas! Through the Warriors Foundation and to be referenced on this CaringBridge site, in a couple days you will have complete information about an online Warriors auction to benefit the Nicholas Colby Fund.

 


Friday, June 16, 2006 11:59 PM CDT

***CONTINUING OUR RECAP OF NICHOLAS’ CELEBRATION OF LIFE***
Instead of last night, Sunday night we will share the “behind the scenes” message from Stanford-LPCH nurse practitioner Karen Kristovich, and the touching poem written by LPCH Dr. Gary Dahl referenced Thursday night. Also, we will share a very, very touching replay of an Open Mic Remembrance shared by Nicholas’ life long friend, Joey—whom Nicholas shared virtually every moment of his life. (Joey’s message will be shared as he wrote it, the sweet little friend that he is.)

TODAY AND TONIGHT
Mom & dad visited Nicholas’s site late morning before driving to a small town near Yosemite for a nephew’s high school graduation. The bench and bird-bath was installed at Nicholas’ site today to go along with all the plants added in the borders of the site and going down the slope toward Briones Regional Park. The Oakmont site in Lafayette is now the park-like setting that is so fit for Nicholas. As much as he loved everyone (you have seen it, heard it, or experienced his love) he also loved nature which is why we say the site is so fit for him. The walks we would take, the stroll along beaches, the gazing into the sky, it was all so beautiful. And it is still all so beautiful: beautiful “times” Nicholas equals heavenly walks, strolls, and gazes that we will share in our hearts and souls with Nicholas as he will with us!

Tonight up in the mountains, mom & dad were even closer to the stars which were so vivid and vibrant that it was truly as if we could touch them. The stars were densely speckled and brighter than bright. And we praise God for these moments reminding us of His love; these moments generate a lot of comfort knowing that Nicholas is more than all right. In a way, we believe that time now for Nicholas is in such a way that when we see him again (when ever that is), for him it will have been like he was at school for the day, or visiting a friend, or away having a play-date.

Following is something Nicholas would sing with us: “I do, I do, I do love you, I do love you, I do love you, I do—love you!” Our little sunshine, our angel, we know that you know we love you. We are so glad that we talked many times about “knowing” each of us loves the other and feeling it within our spirit and our souls. We miss Nicholas so, so much and really believe he is "playing and having fun!"

AMAZING RELATIONSHIP…WARRIORS FOUNDATION AND NBA CARES
The Golden State Warriors (professional basketball team) relationship continues to vibrantly live with Nicholas! Through the Warriors Foundation and to be referenced on this CaringBridge site, in a few days you will have complete information about an online Warriors auction to benefit the Nicholas Colby Fund.

 


Friday, June 16, 2006 1:59 PM CDT

***Update Since Last Night***

AMAZING RELATIONSHIP…WARRIORS FOUNDATION AND NBA CARES
The Golden State Warriors (professional basketball team) relationship continues to vibrantly live with Nicholas! Through the Warriors Foundation and to be referenced on this CaringBridge site, in a few days you will have complete information about an online Warriors auction to benefit the Nicholas Colby Fund.

Thursday, June 15, 2006 11:59 PM CDT

THE “NICHOLAS COLBY FUND”
Remember, in memory of our beautiful son—Nicholas Colby Gilbert—who will continue to vibrantly live in all of our lives, a non-profit Nicholas Colby Fund has been established by a dear friend of ours to help other children or children of parents who are sick or suffer setbacks—lovingly providing for children. While overall details about the Nicholas Colby Fund are being documented, please know that more information about the Fund will soon be provided.

Also, we will soon transition this CaringBridge site to a www.NicholasColbyFund.org site enabling continuance of the sharing all of us have been part of, making it more interactive, and enabling Nicholas’ legacy to live on—helping children be children.

Tax-Deductible Donations May Be Made To:

Nicholas Colby Fund
1547 Palos Verdes Mall, PMB 260
Walnut Creek, CA 94597-2228

***CONTINUING OUR RECAP OF NICHOLAS’ CELEBRATION OF LIFE***
The celebration of Nicholas’ life continued with the Friends Remember segment, before transitioning to Open Mic Remembrances where family, friends, and new acquaintances in the audience directly participated by sharing stories about the experiences with Nicholas. Following is the replay of the last two speakers before Open Mic:

ANGEL, NICHOLAS

There was once a little angel in Heaven who decided to come down to Earth. In order to leave Heaven he had to give up his wings, full well knowing that being bound to Earth's physical laws would be a great weight and a challenge. Nevertheless he went, knowing he would touch many lives with love. This little angel touched many lives with love. He brought sunshine to his family and to many others.

Earth life was a great challenge, and this little angel encountered difficulties along the way, as do all angels who come to Earth, but he soldiered on. He missed being able to fly above the complexities of life. But it was at night, in his sleep, that he once again donned his angel wings and soared above the earthly realm, reveling in the soft breezes only found above the clouds.

One day this little angel was done with his time on Earth. He missed his wings, and his Heavenly Father missed him too. He called him Home again, meeting him at the door of Heaven with his cherished angel wings, which he donned immediately.

Now this little angel dances in the skies above us. He blows us kisses and whispers to us that the sun is still shining above the clouds, and that the stars still faithfully twinkle even when they are blocked from our sight. He is light as a feather now, with no more weights and cares, surrounded only by the all-encompassing love of Heaven.

Our hearts are with you, little angel. Thank you for braving the challenges of Earth to bring love to us, and thank you also for watching over us now. You will always be a reminder to us that our wings are also waiting, and someday we will soar together again, like we did once upon a time before our Earth lives.

It's only a matter of time before we are all together again in the light of a heavenly new day. Then there will be no regrets, no tears, only love and happiness, hugs, and heavenly music, times of fellowship and joy, and the spending of all eternity, together once again.

-Anonymous, read by Don Ellison

MESSAGE ABOUT NICHOLAS AND RELATIONSHIPS

Good Afternoon.
Today has been an opportunity for hundreds of people to give witness to how many lives a child can touch. Some of us were privileged to know Nicholas Colby Gilbert. Others know of him through their friendship with his parents Sheila and Lamont, his brothers, his grandparents, his aunts and uncles. Other people have the sense that they have known Nick because of the generosity of word and witness that his family has made on Nicholas’ website. His encounter with leukemia—a journey that lasted about a third of his life—is one what demonstrates enormous courage, resilience, faith, hope and especially love. I don’t really like the words: battle and fight—because they imply that there are winners and losers. Nicholas’ leukemia was very powerful—that is true—and the cures for it do not yet exist—but Nicholas was a winner—and oh, what a race he ran for us to admire.

As a Chaplain at Lucile Packard Children’s Hospital, I have the privilege of meeting families from many faith traditions. It seems to me that a common thread is “relationship”. Relationship with a divine presence, which in this place we call God, manifested in God’s son Jesus Christ…or relationship with a sense of the universal or the natural world,…or relationship between human beings as the best example of creative life.

Nicholas was “all about relationship”. His natural exuberance and winning ways drew people to him under all conditions. Sheila and Lamont had nurtured such a confident, well-loved child that he was totally free to make connections with as many people as he could fit into his world. He never forgot a name and he made each of us believe that our arrival in his room at the hospital was the visit he had been waiting for all day.

When I first met Nicholas in the spring of 2005, he liked to pray. It was part of his family’s way of life and we were all optimistic, faithful, and confident. We sent Nicholas out of the hospital to enjoy his summer and thrive. By the fall, his condition had become unstable again and fear sat permanently in the back of the minds and hearts of those close to him. Perhaps even Nicholas sensed that all was not well—for he resisted returning to the hospital a few times. Sheila and Lamont courageously held their cherished hope for their child in one hand while they absorbed more and more sobering news in the other hand. Their “hope” was expressed in little ways—the desire for as much of a normal life as possible. One day, Nicholas asked why he was still getting “time outs” when he was so sick in the hospital. His parent’s reply: “because you need to be a thoughtful, kind person.” Live as if you’ll live forever!

During this time, Nicholas sent me away sometimes when I came in to pray. “No, thanks,” he’d say to my inquiry. When I finally figured out that our praying aloud together often caused his mom to cry, I told him we’d take a break—and I’d say my prayers out of the room. I wouldn’t ask him anymore “how are you today” and I wouldn’t ask his mom questions either. When I honored his rules…I could visit. You see…the chaplain is one of the hospital people you can throw out of your room and not suffer any consequences.

In late November, Lamont told me that Nicholas himself was praying aloud all day long—for healing, for God’s presence, for care of his family. Relationship! I asked Nicholas about his prayers and asked if he would be willing to pray for me because I was having a difficult week, meeting some new families. “Sure”, he said. And this six-year-old boy enveloped me with words of encouragement, challenge, gratitude and so much love. When I wrote him a note later that day, I told him that I had had a wonderful day with patients and families because I felt God so close to me.

Because we had shared prayers together, Nicholas and I became more comfortable with each other. We didn’t have deep, theological conversations. I think he had those with his Mom and Dad, which was more appropriate than with me. He would ask me to pray that he would be healed and be a normal kid.

The healing has occurred, but Nicholas Colby Gilbert was never a “normal” kid—he was extra-ordinary—one of a kind—gifted and joyous. In the Christian tradition, we read a particular passage of scripture at the baptism of children: it is the story of the adults around Jesus trying to discourage the crush of parents bringing their children to be touched by Jesus. “Let the children come to me, do not hinder them; for to such belongs the realm of God. Truly, I say to you, whoever does not receive the realm of God like a child shall not enter it.”

Nicholas understood this “realm” of God. He may have tried to bargain with God for time—just like he tried to bargain for a few more chips with salsa or another shrimp. I don’t believe Nicholas had any barriers with God—only relationship. For that, I am truly grateful—and will forever be reminded when I think of Nicholas, that love—love of a child—love LIKE a child-- makes ALL relationships possible.

Dr. Gary Dahl was one of Nicholas’ oncologists. Dr. Dahl writes poetry to express the deep feelings associated with his life work. He isn’t here today, but asked if I would read his poem for Nicholas. This is a poem of relationship—of connection—of faithful confidence—of a life lived fully.

And I say to you—the Gilberts’ friends and family—remember relationship—in Nicholas’ style. Stay close to Sheila and Lamont and their boys. Give them your love, your laughter, your “check-in”, your home-cooked meals, your prayers, your faith. That is how we will all continue to honor Nicholas.

-Written and read by Reverend Marilyn Corvin, Stanford-Lucile Packard Children’s Hospital

NOTE: Tomorrow we will share the “behind the scenes” message from Stanford-LPCH nurse practitioner Karen Kristovich, and the touching poem written by LPCH Dr. Gary Dahl referenced above. Also, we will share a very, very touching replay of an Open Mic Remembrance shared by Nicholas’ life long friend, Joey (whom Nicholas shared virtually every moment of his life).

 


Wednesday, June 14, 2006 11:59 PM CDT

NICHOLAS’ LIFE WAS/IS CERTAINLY NOT IN VAIN
Today hurt so much, not for any specific memory triggered, it just hurt so much not having Nicholas physically with us. Yes…we know, trust, and believe Nicholas is having a heavenly time in God’s hands—and he absolutely deserves EVERYTHING an angel deserves because he gave all of himself, and is giving, in so many ways for the joy of others.

Recent Guestbook entries and a couple specific telephone calls today, clearly let us know that God’s love for Nicholas is lively working through Nicholas even today, as we have said before, love is begetting love. Like the poems in yesterday’s journal that were read during the June 2, 2006 Celebration of Life, the song and poem below let us know that God is God, good is good, and love will beget love…God will provide for us as well.

A walk on the trail right next to our home provided some warmth, comfort, and beauty: in the air, in the sky, in our thoughts, in our memories, in our senses…and in conversations with friends on the trail as well. We could feel Nicholas’ presence all around us: the warm breeze was like his breath against our cheeks as we would cuddle, the twinkling of the stars were like his eyes sparkling as we would gaze into each others eyes, and the sweet scent of the flowers were like the wonderful scent of his skin as we would gently kiss goodnight or any other time we could sneak one in. We miss his physical presence so deeply; we pray for God’s comfort to help us through this.

***CONTINUING OUR RECAP OF NICHOLAS’ CELEBRATION OF LIFE***
As the celebration of Nicholas’ life began to flow, Ed Harris, Sr. sang— A-Cappella (no instruments)— a slow, beautifully penetrating song titled, “If I Can Help Somebody.” For those who know and are beginning to know Nicholas, most likely you will feel and see Nicholas’ smiling face & gentle touch in the words and the rhythm of the music. Then, the first of our last three speakers, Gina Baker, read a poem titled, “I’m Free,” that she wrote for Nicholas. As you read the words, here too, you will see that it speaks of our little sunshine—Nicholas, the words are so comforting to mom and dad. The recap of June 2 have enabled mom & dad to focus on Nicholas in the celebratory way that he lived. We thank all of you for being part of the celebration as your presence and actions are gifts to us. And the gifts are because of Nicholas who continues to vibrantly live in all of us!

IF I CAN HELP SOMEBODY
(The version sang is from the original motion picture soundtrack for Fried Green Tomatoes, and originally sung by Aaron Hall.)

If I can help as I pass along
If I cheer somebody with a word or song
If I can show somebody he is traveling wrong
Then my living shall not be in vain

If I can do my duty as a good man ought
If I can bring back beauty to world of wrought
If I can spread loves message that the master taught
Then my living shall not be in vain

Then my living shall not be in vain
Then my living shall not be in vain
If I can help somebody as I pass along
Then my living shall not be in vain

-Sung by Ed Harris. Sr. at Nicholas’ Celebration of Life

I’M FREE

I’m in your heart and you’re in mine.
We’ll be there ‘til the end of time.

I’m with you always don’t worry so,
It was just time for me to go.

I’m free now and everything is okay,
I can run and jump, and laugh and play.

Swing on the stars that’s what I will do,
Or fly to the moon, that will be fun too.

Next, to the beach I must go,
And play with the dolphins that I love so.

The clouds are a fun place to laze about,
I’m free, I’m free, can you hear me shout?!

No worries and no care,
In your dreams you will see me there.

I’m in the stars, I’m on the moon,
I’m flying round and around, zoom-zoom.

I’m watching over you from above,
And spreading around my heavenly love.

-Written and read by Gina Baker

 


Tuesday, June 13, 2006 11:59 PM CDT

WHAT A DIFFERNCE A DAY—WELL GOD—MAKES
It seems like just as Nicholas’ journey was long, our journey with this “new normal” is long and it has only been 19 days. Mom & dad were reminded today that missing Nicholas so badly and hurting could be two different things. Two different things because God does not have Nicholas in Heaven for us to be hurting…although missing him is certainly understandable because he was and continues to be so amazing in terms of love begetting love… This knowledge does not make everything okay; however, this knowledge certainly helps us to focus our prayers and understanding that God loves all of us and His love begets love and love will help ease, at least, the pain away.

GUESTBOOKS AND EMAILS FROM YOU TODAY LINK SO WARMLY
We received a couple of emails today that were consistent with the above understanding as well as some of today’s Guestbook entries—thank you so, so much for these and no doubt your prayers. We say it again, what have we done to be so blessed with your—all of you—friendship?

And the Guestbook entries along with the emails referenced above, as well as readings from the beginning of the Celebration of Life on June 2, 2006 are aligned with the goodness of God during this terribly hard time…

***CONTINUING OUR RECAP OF NICHOLAS’ CELEBRATION OF LIFE***
The Memorial Session and Interment Session were as much as a Celebration of Life as the third and final component positioned as the Celebration of Life. After some lively stories about Nicholas, our nieces, Felecia and Stephanie, read the following poems, respectively:

I’M FREE

Don’t grieve for me, for I’m free,
I am following the path God laid for me.
I took His hand when I heard Him call,
I turned my back and left it all.

I could not stay another day,
To laugh, to love, to work or play.
Tasks left undone must stay that way,
I found that peace at the close of the day.

If my parting has left a void,
Then remember it with remembered joy.
A friendship shred, a laugh, a kiss,
Ah, these things I too will miss.

Be not burdened with time of sorrow,
I wish for you the sunshine of tomorrow.
My life’s been full and savored much,
Good friends, good times, a loved one’s touch.

Perhaps my time seemed all too brief,
Lift up your heart and share with me,
God wanted me now, He set me free.

To live in the hearts we leave behind is certainly not to die.

-Read by Felecia (Nicholas’ cousin)

A HOPI PRAYER OF THE SOUL’S GRADUATION

Do not stand at my grave and weep,
I am not there,
I do not sleep.

I am a thousand winds that blow,
I am the diamond glints on snow.
I am the sunlight on the ripened grain,
I am the gentle autumn’s rain.

When you awaken in a morning hush,
I am the swift uplifting rush of quiet birds in circled flight.
I am the soft stars that shine at night.

Do not stand at my grave and cry,
I am not there,
I did not die.

For everything beautiful that you see,
Will bring everlasting memory of me.

-Read by Stephanie (Nicholas’ cousin)

NOTE: Tomorrow the recap will continue with the song, “If I Could Help Somebody” sung by Ed Harris, and a poem from the first of three speakers, Gina Baker.

 


Monday, June 12, 2006 11:59 PM CDT

STILL TRUSTING AND BELIEVING
As hard as EVERYTHING has been during the last 18 days, we still trust and believe God to be God and His love to provide what love provides—EVERYTHING. Love is simply and wonderfully perfect and pure and provides everything perfect and pure. Of course, we do not know God’s plans; however, we trust and believe God is perfectly providing for Nicholas in heaven and His love warms our hearts where our hearts sometimes seem to feel so cold, chilled and shaking wanting to be sure Nicholas is full of endless love that provides EVERYTHING…

Remember, we would talk and pray with Nicholas regarding a “new normal” for him as he was navigating all of the “leukemia and bone marrow stuff” and now we talk and pray asking God to help us with our “new normal.” We cannot just move on and we do not want to just move on; we are diligently praying and acting toward this “new normal” and while we trust and believe, it hurts so much moment-by-moment. And we realize that God being God will provide for us, He will comfort us although we first want to know that Nicholas is completely comforted—wanting nothing, full of God’s love providing EVERYTHING. We love Nicholas so!

FRIENDS (THANK YOU GOD)
We know that we are blessed and your love directly and indirectly is amazing. Being the way you have been and continue to be lets us know that we are so blessed. We thank God everyday for you and how you show up in our lives (when we know that you have your lives to live and you include us in living your lives). From meals, to walks, to talks, to love begetting love, we know we are blessed.

All of you…thank you! Tonight, the Nieuwsma girls had mom & dad visit as they indulged us with homemade-baked treats along with tea. And Victoria (the eldest) treated us with peaceful & soothing music from a Harp. As hard as everything has been, the sounds were more than music to our hearts and souls, it was simply heavenly and reassuring in a way that seemed to remind us that Nicholas is in God’s hands and there are absolutely no better hands to be in—not even the loving hands of mom & dad. The song she played was “Purcell’s Ground In F.”

***CONTINUING OUR RECAP OF NICHOLAS’ CELEBRATION OF LIFE***
Before the Interment concluded and the third component of Nicholas’ services—the Celebration of Life—began there was a quiet moment mom & dad had with the keeper of the doves. In that moment, the keeper read and gave us the following poem”

Why God Takes Children

When God calls little children to dwell with Him above,
We mortals sometimes question the wisdom of His love,
For no heartaches compares with the death of one small child,
Who does so much to make our world seems so wonderful and mild.

Perhaps God tires of calling the aged to His fold,
So He picks a rosebud before it can grow.
God knows how much we need them, and so he takes but few,
To make the land of Heaven more beautiful to view.

Believing this is difficult, still somehow we must try.
The saddest word mankind knows will always be “Good-bye.”
So when a little child departs, we who are left behind,
Must realize God loves children: “Angels” are hard to find!

 


Sunday, June 11, 2006 11:59 PM CDT

YOUR LOVE STILL AMAZES US
Today we learned that Nicholas’ favorite Japanese restaurant, Blue Ginko, served up some of Nicholas’ favorite items—Edamame, Shrimp tempura, and California rolls to some of you visiting Lafayette. And when we visited Nicholas’ Oakmont site this evening, we found a soothing blend of Hawaiian and Californian love through flowers and some sweets left. The deer will love his site even more tonight! And we sure do love all of your continued love and support directly and indirectly felt, thank you very, very much!

***TRANSITIONING TO THE INTERMENT SERVICE***
As the Video Tribute was concluding the Memorial Service, the last picture was a profile of Nicholas, the one seen on the back of the “program” above. Remember, Nicholas was always asking, “Do you want a piece of me?” In Nicholas’ way at the Memorial Service, he was saying, “You will always have a piece of me…” To that end, everyone leaving the Memorial Service received a puzzle piece of Nicholas (from a puzzle made with the profile image).

In addition to the puzzle piece, everyone received a bottle of bubbles and during the procession to the Interment Service, bubbles were streaming from windows of cars from Moraga Valley Presbyterian Church to the Oakmont Memorial Park. (Photos of bubbles coming from cars will also be in the upcoming Celebration of Life photo album.)

BUBBLES AND LOVE FOR MILES
We have heard lots of stories about the length of the procession and we learned that after seeing the size of the love at the Memorial Service, Oakmont Memorial Park called in and immediately received additional motorcycle escorts for the procession. QUESTION: What are your stories about the bubbles, procession, and Nicholas?

THE INTERMENT
Lovingly stated, the interment was about love…a soloist singing “Amazing Grace,” doves released by mom & dad, and butterflies released with many of them staying close by before flying off into the wind at the family Oakmont site. (The upcoming Celebration of Life photo album will include these beautiful moments of the celebration.)

Amazing Grace modified and sung, A-Cappella (no instruments), by Sarah Bannwart:

Amazing Grace! How sweet the sound
That saved a soul like me!
I once was lost, but now am found;
Was blind but now I see.

Through many dangers, toils and snares
I have already come.
'Tis grace hath brought me safe thus far
And grace will lead me home.

Yes, when this heart and flesh shall fail,
And mortal life shall cease,
I shall possess within the veil,
A life of joy and peace.

Amazing grace! How sweet the sound
That saved a soul like me!
I once was lost, but now I know I am found;
He was blind but now Nicholas can see...

***
NOTE: Please stay tuned as we are even closer to providing the details about the Nicholas Colby Fund so you, too, can continually rejoice in knowing that Nicholas’ passion for caring about people will continually thrive…

 


Saturday, June 10, 2006 11:59 PM CDT

ANOTHER EVENING OF SHARING WITH NICHOLAS
Tonight at the family Oakmont site, mom & dad had pistachios (another Nicholas favorite). Again, while we recognize that the site just holds Nicholas’ body and that his spirit and soul are freely soaring and playing in Heaven and all around us, being at the site daily is another way for us to be close to Nicholas. (We do not need to be at the site to be close spiritually and through “heavenly ways,” we chose to be at the site to be close in this physical way.)

Remember the trees on both sides of the family site, the one on the left can be seen in the third picture under View Photos. A few days ago on that tree we hung a rectangular-caged bird feeder with a mixture of bird food compressed into a block that sits in the caged feeder. At home, Nicholas always loved seeing the birds eating from our bird feeder and splashing around in the birdbath. On the Oakmont grounds and in the air there are plenty of birds including hawks (soaring over Briones Regional Park behind our site), butterflies, squirrels, deer, etc. While there are plenty of birds, the bird feeder is just another touch for Nicholas and the last few days it seems the birds have been enjoying their treat. However, this evening the cage was open and the blocked-food was gone—it appears the squirrels wanted the treat for themselves (we catch them at home leaning over the gutter from the roof trying to get to the bird seeds).

Note: While the grounds crew at Oakmont are putting in the ground cover and plants in the left, right, and back borders of the family site, soon we will have a curved concrete-like bench and bird bath placed on the site.

NICHOLAS AND SONGS: CREATED, MODIFIED, AND SANG
There are so many songs that we regularly sang with and to Nicholas throughout his entire life. Sometimes we sang them the way they were written, sometimes we created songs, and sometimes we modified songs to fit Nicholas or the situations we were experiencing. A favorite modified song had the following verse and it was flowing throughout our hearts tonight:

You’re my love,
You’re my angel,
You’re dream of a son,
I’d like to thank you,
For the waiting patiently,
Yehhh
Daddy is home,
Your daddy is home,
To stay,
I’m not a million miles away…

Many of us have heard that “home is where your heart is!” And home seems to generally be viewed as a place where one is safe, comforted, and loved. As hard as all this has been for 16 days now, we continually pray for God’s love to continually do what It does for Nicholas as well as mom & dad and our other boys. Thinking about the verse above, we feel how much Nicholas is loved as an angel and son of God, that he is home with God, and that he is not a million miles away—he is with us as a loving angel every day.

***CONTINUING OUR RECAP OF NICHOLAS’ CELEBRATION OF LIFE***
As we begin to close the recap of the Memorial Service and transition to the Interment Service, we think back how June 2, 2006 began:

- Nicholas’ song-of-love playing as mom & dad and Nicholas’ brothers walked in with Pastor Tom Dabasinskas. (It is the song playing in the background once this site is accessed; are your PC speakers on right now for you to hear his song about love, about people?)

- Welcome and Prayer

- Friends and Family Remember, six recounts of experiences with Nicholas weaving the joy, laughter, and love that contagiously spread from and to Nicholas

- Soloist performing a song called, “Held”

- Spiritual Message by Pastor Tom Dabasinskas

Then, mom & dad said a few words about Nicholas and everyone in his life, before introducing a Video Tribute about Nicholas—positioning pictures, songs, and you as the ingredients that helped to make Nicholas’ life amazingly special.

Mom & dad talked about a story with “this little boy” (Nicholas), “people” (everyone present and directly or indirectly part of his life), “this lady” (who started the Nicholas Colby Fund), “this lady” again, “people” again, and “this little boy” again.

Mom & dad then talked about conversations we would have with Nicholas, specifically, about always knowing that no matter if we could not see each other, if we could not feel each other, hear each other, or simply were apart, we would know—just know—that each of us would “always” be in the other’s heart and each of us would feel safe, comforted, and loved.

We then talked about a surprise gift that was placed on our doorstep before we were to leave for the Memorial Service. The gift (from that amazing lady again) was a “star” officially re-named "Nicholas Colby" and a framed document & framed map from the International Star Registry providing details about Nicholas' star. The registered star is now “Nicholas Colby” and the coordinates are: Hercules RA 18h 18m 23.34s D15° 49’ 14.52”

So we talked about the sky, Nicholas-as always our shinning star, and another modified verse of a song that we sing (we would hear from the Disney Channel by Jesse McCartney): “Because you live son, my world, has twice as many stars in the sky…”

And then we turned to the large screen as the Video Tribute began (remember, soon it will be available to experience again).

 


Friday, June 9, 2006 11:08 PM CDT

UPDATED PHOTOS, UPDATED PHOTOS
Photos from Denver are now available on the third album below, under Links. Please scroll toward the end of that album to see Nicholas' one-on-one love with mom, with dad, his brothers, The Children's Hospital-Denver nurses, Bugs Bunny & Daffy Duck, Brent's Place staff, and a baby at TCH-Denver.

Photos from the Celebration of Life including the bubbles, doves, butterflies, and you are upcoming.

IT IS SO HARD TO GO ON
Today marks 15 days since Nicholas has passed and 15 days that he has been free, “truly” playing and having fun because he is free off all earthly ills. However, it is so very hard, everyday to breathe, to go about the day even though we are going about the days loving him, and loving the work that we are concentrating on that he would be doing…the Nicholas Colby Fund.

Tonight at his Oakmont site, we had chips & salsa. Remember, he loved chips & salsa so much that he even negotiated for them with the doctors during some medical challenges that he faced.

***CONTINUING OUR RECAP OF NICHOLAS’ CELEBRATION OF LIFE***
Following is the message delivered by the 5th of six family and friends speakers (although the immediate-previous journals included the first four, the sixth, and the song that was sung during the Memorial Service). The 5th speaker, Marie Andel, is from AAA and many of you will remember the amazing ways AAA has supported mom & dad along this journey, even now. Like the Golden State Warriors in many regards, it is one thing to say that you are an organization that cares about people; it is another thing to not only show that but also “be that—a caring organization.”

“It is quite overwhelming to be here today talking to all of you after hearing those amazing words and seeing Lamont and Sheila's family. Sheila and Lamont's love and faith have been truly inspiring and is evidenced by their beautiful children.

Lamont and I have talked from time to time over the past year and a half. We would talk about Nicholas and his prognosis, how he was feeling and what he was up to. We agreed in the past few months that we needed a miracle. It was pretty obvious to us - that was what was needed. I suspect many of you have been praying for one, too. Well, we got one. True, we may not have got precisely the one we were asking for but we aren't in charge, are we? But we truly got a miracle. At least that is what I call it when a little boy is able to affect so many people in such positive ways. Just look around the room at all these people, at how many lives were touched by Nicholas.

Nicholas reminded us how important it is to treat each moment we have together as a gift.
He taught us how families need to pull together when times are tough - he taught us to redefine what families are.
He reminded us what is important in life.
He reminded us that it is not always the destination that is important but the journey.

It has been quite a journey for Nicholas and I am comforted by the knowledge that he is in a wonderful place now.

Many of you know that Nicholas had recently taken to the phrase "do you want a piece of me?" And we are grateful for the piece of himself that he gave all of us. Thank you, Nicholas.

Lamont and Sheila - I hope you know that you have so many friends who love you very much.”

 


Thursday, June 8, 2006 10:55 PM CDT

BEFORE CONTINUING OUR RECAP OF NICHOLAS’ CELEBRATION OF LIFE
Mom & dad and Nicholas’ brothers are so grateful for the continued support & love flowing our way through individual and group actions from family, friends, and even new friends that we have not known until now. Nicholas’ spirit is fully present and amazingly touching us in warm, caring, loving ways. And we recognize that through your direct and indirect support and love, how you continue to show up in our lives is completing the circle of love that we have coined, “love begetting love.”

Thank you for staying with us, your presence on the Guest Book, and staying tuned for the details about the Nicholas Colby Fund. There is so, so much to share and we are getting really close to doing just that so you, too, can rejoice in knowing that Nicholas’ passion for caring about people will continually thrive…

And now, on with our recap of Nicholas’ June 2, 2006 Celebration of Life!

But first, tonight’s reading at Nicholas’ site was “Zack’s Alligator” by Shirley Mozelle. Nicholas’ favorite part was about the meatloaf sandwiches.

***CONTINUING OUR RECAP OF NICHOLAS’ CELEBRATION OF LIFE***
After our six family and friends speakers whose presentations are in the previous journals, the Memorial Service transitioned into song. Mom’s life-long friend, Linda Freitas (who, at dad’s request, actually cut Nicholas’ umbilical cord when he was born) sang a song, “Held,” that is sung by Natalie Grant.

NOTE: Soon online we will have this song, along with other songs at the Celebration, and the video tribute. In the meantime, you could probably go to your music server (like Yahoo Music to see the video and hear the song).

Held by Natalie Grant, sung at Nicholas’ Celebration of Life by Linda Freitas:

Two months is too little
They let him go they had no sudden healing
To think that providence would take a child from his mother while she prays is appalling

Who told us we’d be rescued
What has changed, and why should we be saved from nightmares
We’re asking why this happens, to us who have died to live it’s unfair

This is what it means to be Held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell we’d be Held

This hand is bitterness we want to taste it,
Let the hatred numb our sorrows
The wise hand opens slowly to lilies of the valley and tomorrow!

This is what it means to be Held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell we’d be Held

If hope is born of suffering,
If this is only the beginning
Can we not wait for one hour
Watching for our Savior

This is what it means to be Held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was—“when everything fell, we’d be Held”

We’d be Held
And this is what it is to be loved and to know
That the promise was when everything fell, we’d be Held

This is what it means to be Held!

 


Wednesday, June 7, 2006 11:59 PM CDT

LOVE AND PRAYERS
This evening mom & dad went to Nicholas’ site at Oakmont Memorial Park in Lafayette as we have everyday (please click on View Photos and scroll to the third picture). We recognize that this spot is just a resting place for his body as his spirit is all around us, everywhere that we are, so the time at his site is just a connection place—and it is such a beautiful place with the gentle breeze flowing over the mountain ridges and softly sweeping through the valleys, along with a view of Mount Diablo to the East and the sun setting to the West.

Tonight we did a few of his favorite things at his Oakmont site: Flew a small kite, read “I Want To Be Somebody New!” by Robert Lopshire, and prayed. Our prayers are grounded in love and understanding. On the understanding, we trust and believe God’s words while we do struggle so very, very much not having Nicholas physically with us. And we know, we just feel and trust that Nicholas is absolutely in a better place—even with our amazing love for Nicholas, we cannot selfishly want him here when he is lively, angelically, and heavenly flourishing along God’s side.

Along Nicholas’ journey we gave praise for the way, with God, Nicholas was navigating the treatments, set backs, and new medical challenges. As we reflect, we are so grateful for the additional time—time after time—we had with Nicholas when all medical interventions did not result in what we were hoping for although miraculously Nicholas came through loving, living, and loving some more. Perhaps, God was allowing Nicholas to touch more lives in more places such as Denver. Well, instead of “perhaps” we say “to God’s plan” Nicholas was doing God’s work; God was fulfilling Nicholas and preparing Nicholas; God lovingly enabled a warm and soothing transition for Nicholas with so many of you present two weeks ago tomorrow (May 25, 2006); and for God & all of us (especially children) Nicholas is still in our lives in amazing ways. Through the Nicholas Colby Fund, Nicholas will continually touch all of our hearts bringing smiles on our faces, especially children.

***CONTINUING OUR RECAP OF NICHOLAS’ CELEBRATION OF LIFE***
Following is the contents from the sixth message, from Dave Nieuwsma (a family friend), delivered during the Friends and Family Remember portion of the Memorial Service. Tomorrow it will be the words and other information to the song, "Held," sung by our family friend—Linda Freitas—after the Friends and Family Remember portion...

THE REST OF THE STORY
One might think that Nicholas’ story began January 27,2000 (the day he was born) and ended May 25,2006 (the day he passed away.) Is that the end of the story? Is that all there is? Do we close the book? Not exactly! His story began long before January 2000—before the foundation of the world, actually, and continues today. In fact, his story does not end—it is a forever story. It is a story that shows God’s omniscience, His omnipotence and omnipresence. It is a story of hope, of joy, and of peace.

God is an omniscient God. He is all-knowing. God knew before he was born that Nicholas would be with us exactly 6 years, 3 months and 28 days. Psalm 139 says, “For you created my inmost being. You knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.”

Before the foundation of time, God knew the exact number of breaths Nicholas would take, every word he would say, how many lives he would touch. Luke 12:7 tells us God knows the number of hairs on our heads. For Nicholas, I’m not sure if that was before or after chemo. Actually, it was before, during AND after his treatment.

God had a plan for Nicholas, as He does for each of us. The Bible tells us, “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.“ God knew exactly what He wanted to accomplish in Nicholas’ life. Nicholas was very efficient—he got the job done in 6 ½ years. It’s taking a little longer for the rest of us.

God knew every pain Nicholas felt, every tear that fell from his eyes, every smile that would cross his face. Right now Nicholas is feeling no pain, he is shedding no tears. I am sure he is smiling a lot, though. The Scriptures tell us in Revelation 21:4—“He will wipe away every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away…” He said, “I am making everything new.”
God can make all things new. He is an omnipotent God—He is all-powerful. He can do anything.

Nicholas liked to play a game—“I’ve got the power.” I wonder how well that’s going over with God. Nicholas, you may have the power, but God has ALL the power. Genesis 1:1 says, “In the beginning God created the heavens and the earth.” The awesome God of the universe, who spoke the world into existence, created Nicholas (with a little help from Lamont & Sheila.) God created the sunshine, he created the rain. He made the oceans, with the dolphins Nicholas loved so much. He made the deserts. God created man in His own image--he made Nicholas like Him. He made you and me like Him, too.

God knows everything, He can do anything and He is everywhere (omnipresent.)

God has promised never to leave us or forsake us (Heb. 13:5.) Many have wondered how Lamont & Sheila have made it through all the ups and downs of the past 18 months. Their hope & peace has been in the Lord. God has & always will be with them & with all who trust Him. He has been with Nicholas throughout the whole journey.

He was there when Nicholas was initially diagnosed with leukemia in November of 2004. He was there in April of 2005 when Nicholas received his bone marrow transplant. God was there when Nicholas relapsed in September 2005. He was there in November 2005 when the doctors reported a partial remission. He was there when Nicholas relapsed in January of this year. He has been with the Gilberts from Children’s Hospital in Oakland to Lucille Packard Medical Center at Stanford to Children’s Hospital in Denver, Colorado. God has been there the whole time through all the ups and downs, good news and bad news, home to hospital and back again. How have they survived through it all?

Philippians 4 says: “Rejoice in the Lord always. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

God gives a peace the world cannot understand, joy in the midst of pain and a hope that does not disappoint. His omniscience, omnipotence & omnipresence surround us.

Nicholas’ story is not over. His time here on earth has been a preface to eternity—the rest of the story. God makes a promise in his Word. John 3:16 tells us that God loves us so much He sent His one and only Son to die for us. Whoever believes in Him shall not perish, but have eternal life.

Our hope & prayer is that each one here will have the peace that only God can give. There will come a time for each of us to say good-bye to this world & enter eternity. Will you be ready?

I will conclude my words with a hymn (Don’t worry—I’m not going to sing it, just read the words…)

“My hope is built on nothing less than Jesus’ blood and righteousness; I dare not trust the sweetest frame, but wholly lean on Jesus’ name. On Christ the Solid Rock I stand; all other ground is sinking sand; all other ground is sinking sand…”

Dave Nieuwsma

 


Tuesday, June 6, 2006 11:59 PM CDT

MOM & DAD HAVE SO MUCH MORE TO SHARE AND GIVE
Keeping with our sharing of the Memorial Service, Interment Service, and Celebration of Nicholas’ Life from last Friday through recapping that day, it will include the thoughts we shared during the overall celebration as well. Those initial thoughts will be shared in a few days, followed by our other thoughts.

However, as we think about our hearts and lives since May 25, 2006, it is God who we lean on (as we did when Nicholas was navigating all the “leukemia and bone marrow stuff”) to guide us through each day. It is not easy at all, as the knots in our stomachs are present 24-hours a day. And we think about the different types of “knots”-so to speak that Nicholas was dealing with every day for 552 days.

Our focus was to love and help to protect, guide, and see Nicholas through ensuring that things were being done “for” him and not “to” him. As his mother and father, we imagine, we feel, we trust, and we believe God as our mother/father is loving us in every imaginable and unimaginable way toward seeing us through the gut-wrenching times of our lives associated with the loss of Nicholas. And we are reminded that our loss is not a loss for Nicholas for he has found his place at our Father’s side and that is the right place to be. We struggle with balancing our thinking toward this understanding and continually pray, trust, and focus on love in every aspect to better understand and to guide our understanding.

MAKING A DIFFERENCE IN CHILDREN’S LIVES
As the Nicholas Colby Fund continues to ramp up, the opportunities to tangibly make a difference in the lives of children are coming together very nicely. And the solid, favorable impact on their lives is expected to also provide love in the hearts of their parents and/or loved ones.

Remember, love begetting love that we often wrote about in Nicholas’ journals? Well, Nicholas’ rays of sunshine are warming our hearts and his endless passion for caring about others, via the Nicholas Colby Fund, continues to amaze—love begetting love. The Fund is getting closer and closer to providing to you the loving details that will make amazing differences in children’s lives.

Once again, the Golden State Warriors (professional basketball team) are amazing us with their support and love for Nicholas via the Nicholas Colby Fund. Here too, details will soon be provided.

***CONTINUING OUR RECAP OF NICHOLAS’ CELEBRATION OF LIFE***
Following is the contents from the fourth message, from Nicholas’ teacher Ms. Shirley, delivered during the Friends and Family Remember portion of the Memorial Service.

“Nicholas Gilbert began his journey to Diablo Valley Montessori in 2002 when his family followed a favorite teacher from a school that was closing in Moraga. Her name was Lani, and Manmeet was one of his teachers there also.

Then he came to Jenny and Lani’s class and he was there one year, then to Shirley, Jessica, and Moni’s class in 2003-4 until he left us in what I now term unforgettable November. All totaled Nicholas spent almost 480 hours at Diablo Valley Montessori. He came when Sheila could part from him (always late, but now considered heavenly minutes), but I had late quality time with him as mom rarely arrived until 6:00PM or after.

Children left long periods of time are considered typical students, especially in the Montessori framework. After everyone left, our practical life activities included sweeping, turning off lights, putting away snacks and drying dishes. After all chores were done, he liked to watch Crosby’s Little Bill-loving Alice the Great Grandmother who had so much respect on that show and laughing our sides out at Elephant, Bills little hamster.

One episode concerned, ironically, a visit to the hospital. Also ironically, this was his favorite. It had a Hip Hop rock that said, “I broke my arm, it hurts so bad, gotta go to hospital” with all the correct gyrating movements of a good Hip Hopper. He loved that song and would parade around the rug (often with me in tow) chanting those words.
I haven’t watched Little Bill since November 04.

He was an excellent student, once he could stop being social-and was well on his way to solid academic work before his arm hurt. All of his teachers fell in love with him and in our role at Montessori, this is easy to do with each child. From the time a little one, from 3 months to 5 years is admitted, they are welcomed both socially, spiritually and physically.

Early in the Toddler Class he showed unusual friendly welcoming skills. He wanted to know each name of any adult or child coming through the door and would remember it the next time he saw them.

He was a physical child and loved to run and climb, sandbox play, modeling skills, and sit and chat with either the children or teachers. He showed great gross movement skills with kickball and basketball and T-Ball.

As a typical 4 year old, he had his moments-most of them jolly and funny. Take the Popsicle incident. Hearing that Popsicles had been served for a party in Suzette’s class, some other mates including brave Ben and Nicholas climbed up on stools, opened the fridge and helped themselves to Popsicles when they were supposed to be simply going pee.
Of course, they wore the evidence. Obvious with mouths and lips resembling bright orange and Nicholas was chagrined that he not only had to buy the Popsicles to replace them, but carry them in front of his peers and apologize to Suzette...

One day he had been a bit aggressive with a little girl on a slide. I will never forget as Lamont came, he held Nicholas back from the group to reiterate my request that he never push people down the slide. Lamont had on a brown suit and lovingly had his arm around Nicholas explaining everything. I thought to myself then what special parents Sheila and Lamont were to always support positive attitudes and loving behavior towards others.

He has been my companion, my student, my buddy and my willing listener. As an older person in his life, I have shared more of my life with him as a kid then I have any other child because we have had such alone times-which now I review as extraordinarily precious.

His favorite story involved the Hawaiian state fish and every time we would come to it in the book, he would take the cue and say it- Humuhumu-nukunuku-a pua a. When he went to Hawaii to swim with the dolphins, he went around impressing everyone there with his Hawaiiana store of knowledge, knowing the state bird, mammal, fish, flower. He knew that Queen Lilliokalani wrote Aloha Oe and the circumstances under which she was tested writing that song at Iolani Palace.

At a luau, one of my favorite pictures is Nicholas looking at a petite Tahitian dancer as she is wearing the most amazing coconuts on top. I’ve seen those before, but never in a coconut.

His favorite friends were Brandon, Amanda, Jessica, Kierra and Teddy. Teddy was his host on nights this past year when he came into his old Montessori classroom and we had night school. He went right back to materials he had used and was open and willing to re-learn ones he had forgotten. He was becoming a perfectionist. If it wasn’t right, he would erase it. Joining the other 2 at snack table was bit of what it was like before, and Lamont and Sheila wisely pulled away and just let him enjoy himself.

These children were amongst many who adored and loved Nicholas. Now they will never forget him, as one always remembers going through a first leaving. At our luau on Sunday, we will have a huge picture of Nicholas in Silhouette against a Hawaiian sunset sky. Whether we remember his smile, his fabulous sense of humor and monkey-boy-ness, his lovingness and helpfulness to others, he had it all wrapped up in one.

We were lucky the other school closed and that Lani motivated the family to bring him to us. Those almost 500 hours with us were extraordinary and I now read a cute story:

I wanted to share the story that Sheila told me about her Mothers Night experience a few years back. Sheila overheard a mother shushing her little boy. He seemed to be trying to say something important. Sheila couldn’t help overhearing, and breaking out in laughter, when she heard the boy point at Nicholas and say, “Look at him, his mommy is white and his daddy is blue!”-Author unknown.”

I now share Lanis thoughts about Nicholas:

“Unforgettable Nicholas-He would ask every person who came through the door what their name was, never had to ask twice and always remembered and greeted them by name everyday.

The teachers at that school would come into my classroom in the morning just to look at and talk to this beautiful, precocious child.

Somehow I know Nicholas is standing beside St. Peter at the gate to Heaven greeting each newcomer, and he already knows their name. Lovingly, Your Teacher-Miss Lani”

 


Monday, June 5, 2006 11:59 PM CDT

***CONTINUING OUR RECAP OF NICHOLAS’ CELEBRATION OF LIFE***
Following is the third message during the Friends and Family Remember portion of the Memorial Service. (Tomorrow it will be the message that was presented by his teacher, Ms. Shirley.)

Hi, my name is KJ Estudillo and I am 13-years-old. Thank you, Lamont and Sheila, for allowing me to speak today. I am deeply honored and touched. My heart goes out to you, Chris, Tim and Matt.

I first met Nicholas last June, 2005 at the Ronald McDonald House in Palo Alto. He was in Suite 101 and I was in Suite 102. I kinda knew we were both at Lucile Packard Children’s Hospital at the same time, but because we
were both bone marrow transplant patients and we were immunosurpressed, I couldn’t be out of my room to see the other kids at 2-North.

But after my 36-day stay at the hospital, I met Nicholas when we lived atthe Ronald McDonald House. Nicholas would knock on my door every morning…okay, noon and night…my father would answer the door and Nicholaswould always, say, “Can KJ come out and play?” We would play video
games or watch a DVD. We would play like typical boys…like fake sword fighting, pretending we were in Star Wars, or running up and down the hallways with another bone marrow transplant patient named Jacob (Hi Anne). There
was never a bad time for me to play with Nicholas; I could play with him 24 hours a day…okay…when I’m not sleeping or eating.

And how could I even forget the times Sheila would make lunch for Nicholas and me? Thanks, Sheila. Lunches with Nicholas every day made me really feel like we were brothers.

What was really special were the times Nicholas and me would cuddle on the couch at night with our mothers watching a DVD (and he had a huge collection!)…and then breaking at 9 p.m. for our IV drip hydration. Or the
times Sheila and my mom would work on a 1000-piece puzzle and then have me and Nicholas put in the final piece.

Who could forget Nicholas with cash money on one hand, his brown doll named “Nicholas” and his favorite clothing on the other hand? Always attached to his t-shirt was a heavy pin holding up his Broviac catheter. Oh yes, did we dread that thing attached to our chest. Well, Nicholas, you finally got that Broviac off of you!

When Nicholas left the Ronald McDonald House, we continued our friendship and I would visit him in Lafayette, …or wherever he was…he was sure to call and tell me.

My father and I had our plane tickets to board a flight to Denver for last Friday, only to have Lamont call us on Wednesday telling us Nicholas was flying back to Stanford.

I last spoke to Nicholas several weeks ago when we were talking about my trip to visit him in Denver, and I was counting down the days with him. I told him I couldn’t wait to see him, and the last thing I said to him was
“I love you, Nicholas”, and he said, “I love you, too.” That’s how we would always end our phone calls.

Yes, my heart aches for my best little buddy. I am so, so sad he is gone. I can’t even believe he passed away. And I was so honored to be in the room last May 25th when Nicholas took his last breath. As I watched his
blood pressure on the monitor go down to zero, I held his right hand and I shouted, “Thank you God for sending us a guardian angel.”

And that is exactly what Nicholas is to us all…an ANGEL.

What has Nicholas taught us? For only a 6-year-old boy, Nicholas taught the world so much---more than anyone even 10 times his age could teach us. But for me, he taught me several things:

1. Nicholas taught me about strength and courage. Being in
middle school, there can be so much pre-teen drama. One of my classmate said, “she hates life and life sucks.” I told her I know a 5-year-old boy who is fighting leukemia, what can YOU possibly complain about?! What can I complain about?!

2. Nicholas taught me not to complain. While I was recovering from my bone marrow transplant, I would have to take about 18 pills a day. Some, like cyclosporine were huge elephant-like pills, which smelled like rotten egg, and I had to take about 5 of those a day. Now I was then
12-years-old, so I can swallow pills. But Nicholas couldn’t swallow pills then, and either Sheila had to grind up the pills or give them to him in liquid form. And those medicine were nasty tasting! How can I complain if
this little kid had more to take in liquid form?!

3. Nicholas taught me about love. As you know, Nicholas was such a happy boy, with his remarks that would make you laugh. Like he would say, “You want a piece of me?” or he would say, “Oh Snap!” or something in a certain crazy accent. He made everybody feel loved and special. Everybody who encountered him felt loved.

4. Nicholas reminded me that life is short. I realized that life is short when I was suddenly diagnosed with Severe Aplastic Anemia and when I received bone marrow from my baby brother, Zachary. Nicholas reminded me that life IS short, to live for the moment and don’t worry about
tomorrow. We were ready to see each other last week, but he passed away the day before I was to see him.

I also learned from my illness that there is God and God is a healer, and God has bigger plans for us. So, I know God has plans for Nicholas. He is using Nicholas to teach us. He is using Nicholas to teach us about love. He has Nicholas in His loving arms and Nicholas is running up and down the hallways of heaven, playing swords and asking Jesus, “You want a piece ofme?”

I love you Nicholas, I will always keep you in my heart. I will never,ever, ever forget you…. because you inspire me.

I love you Lamont and Sheila. Thank you for treating me like a son, and most of all, thank you for sharing Nicholas with us. And finally, thank you God for bringing Nicholas to this world.

Love, KJ

 


Sunday, June 4, 2006 11:59 PM CDT

TODAY
Today was the 10th day since Nicholas has passed and each day we have missed Nicholas so terribly that our stomachs are in knots. And, we remember that Nicholas did not like to see us sad. And, we know that Nicholas is at God’s side: comforted and loved beyond any desired earthly dream so he is without pain, he is full of light and with all surroundings freely illuminated and heavenly satisfying. And, we are reminded that because of God we know that it is only Nicholas’ body on the earth while his path in heavenly life has his spirit freely soaring to the heights of his desires.

So while we do ache for Nicholas we trust and believe God’s love and his promise that Nicholas is without need, freely soaring to the heights of his desires in every imaginable & unimaginable way.

***CONTINUING OUR RECAP OF NICHOLAS’ CELEBRATION OF LIFE***
Following is the second message during the Friends and Family Remember portion of the Memorial Service. (Tomorrow it will be the message that was presented by his friend, KJ.)

Message from Nikko’s Aunt Kathy
Title: We Should Have Known!

1) We Should Have Known – When you, Nikko, were 1st born you had a special purpose. Your 1st gift was to be the bridge for your blended family & community…AND you did that so well with your quick wit, your smile, your energy, and your laughter. From Day 1, with your golden brown afro and sparkling blue eyes--you simply were beyond BEAUTIFUL – both inside and out!

2) We Should Have Known – When you started preparing for school you would master both Spanish and English at the same time. Because for you, working on just ONE thing at a time was not enough.

3) We Should Have Known – When you were1st diagnosed it wouldn’t be the typical symptoms and it wouldn’t start slow. A simple, my wrist hurts would lead to YOUR parents and doctor taking immediate action based on the smallest symptom AND demand tests that others thought were not necessary.

4) We Should Have Known – Your mission would demonstrate that miracles still occur. You wouldn’t have just one perfect Bone Marrow match, But 2 to pick from. You would have 3, not just 1 hospital aggressively join your mission – as well as many doctors you would never meet live take active part in your battle thru email only.

5) We Should Have Known - your fight would include an army of extraordinary people doing extraordinary things! Your parents, their company-AAA, your friends, your family, your medical teams and even strangers doing anything and everything they could - Not because we had to. —Because our hearts demanded it!

6) We Should Have Known - that your journey would not be an easy one—Because your spirit, your strength, your love for life needed to teach us how to rise above every obstacle. Instead of saying why me? You would say, mom and dad I’m sorry you can’t go to work today, but I’m glad you’re here with me.. This after months of 24-hr/day stay in the hospital where your parents never, I mean NEVER left your side.

7) We Should Have Known – your mom and dad would be our role models – they would be your body & spirit guards—demanding to be taught how to administer your meds from home. They would learn the medical options and complex jargon so they could carefully and meticulously chart for all of us to follow your online journal of pictures, poems and medical stats… We should have known, doctors too would learn from you.

8) We Should Have Known – That even in your last days when the doctors openly above your bed used the dreaded word ‘terminal’, Your mom and dad would later ask you, what did you hear? Your simple, but angelic response was—I heard that I’m a special kid!”

9) We Should Have Known - you wouldn’t hear or get distracted by anything but the positive. Often asking your parents to buy birthday gifts for other patients fighting the same battle. We should have known, you would always, I mean ALLWAYS, think of others first, before you thought of yourself..

10) We Should Have Known – You would fight the hard fight to the very end. You would have a website with a record # of hits per day. Strangers, family and friends all wanting, needing to be a part of your journey. To learn from you…

11) We Should Have Known … And NOW we do!!! Your life/ your mission was special!! With YOU we have truly witnessed a rare and precious ANGEL on earth. And Your legacy will live on as a unending gift, a beacon call to action for each of us to follow…We NOW KNOW you have taught us to Live Large, to Love Deeply and to embrace each and every obstacle with a flaming zest for life…

12) As I often wrote in your journal, and I say again now, THANK YOU my little Warrior Angel for your many unending gifts. WE CLEARLY KNOW NOW AND PROMISE TO NEVER FORGET … We will continue your mission …

I will Love You Always and Forever.

NOTE:
Please click on View Photos to see the inside cover of the "program" including Nicholas' artwork that has lots of pots of gold, details of the program, and the angelic resting spot of Nicholas' body.

 


Saturday, June 3, 2006 11:59 PM CDT

NICHOLAS' CONTINUED JOURNEY AND STORIES...
Starting today we will recap yesterdays's Celebration of Nicholas' Life by sharing the speeches, poems, songs, and stories. The stories will come from you as presented and/or unfolded during the celebration.

NOTES:

1) Please click on View Photos to see the inside cover of the "program," details of the program, and the angelic resting spot of Nicholas' body.

2) A separate photo album of photos capturing the celebration, including the "bubble" procession, release of the doves and butterflies, and the "piece" of Nicholas that we all now have will soon be accessible.

3) And we expect to have the Video Tribute linked to this site sometime next week.

4) Photos from the time we left for Denver will also soon be accessible.

***SPEECH FROM ONE OF HIS BROTHERS***
After opening with Nicholas' song-of-love that plays when this website is accessed, and a welcome & prayer from our Pastor, the Memorial continued with the following speech from one of Nicholas' brothers:

"I decided to write a letter to my brother…

Nicholas,

Hey buddy, daddy must’ve been right you are the golden child, look at everyone here celebrating you.

Growing up as a single child, I always wanted brothers. I was blessed with two step brothers but I always wanted a baby around and you were the answer, the baby brother I always wanted. The baby that I remember always asking about saying: “When will he talk? When will he walk?” I wanted you to grow up so fast so I could do the things big brothers do with and even sometimes do to their baby brothers.

I remember January 27, 2000 rushing to the hospital for your birth but getting there too late and walking into the room to see you being held by mommy and daddy. I remember swinging you in your swinging chair. I remember your cries…even though I’m still convinced that you faked some of them.

I remember playing endlessly with you, I remember taking your socks off and throwing them across the room…even when it made you mad. I remember cuddling with you and falling asleep with you on the couch. I remember you sleeping in my bed with me…even when you would constantly talk and ask questions instead of going to sleep. And I remember you kicking me in bed those nights too.

I remember mornings when you would wake up early and come into my room, pull the covers off me and wake me up…even though the night before you promised you wouldn’t do that. I remember you walking around the house looking at pictures of me, saying and even arguing that they were you.

I remember missing you so much when I was away at college only to come back home and see how much you had grown in the short time I was away. I remember all the phone conversations we had together and I remember our little game when I said “guess what?” and you said right away “I love you!” I remember all of your messages you left me on my cell phone…they’re still there.

I remember you sitting and cheering at my basketball games, yelling my name…and getting mad when I didn’t turn or look back and respond to you. I remember you running out of daddy’s arms and running alongside the team in Santa Cruz as we ran out of the locker room and onto the court. And I remember you being the best halftime show I’ve ever seen.

I remember November 19, 2004 when I was in Seattle preparing for the first game of my Senior season, not knowing what was going on back home. I remember looking at my phone after the game and seeing that I had at least 10 missed calls from “Dad’s Cell,” just knowing that something was wrong when I heard his message. I remember “that call” and that was the beginning of all that “Leukemia and Bone Marrow stuff”…even though at the time I didn’t exactly know what it really was or what it really meant.

I remember crying on the shoulders of my teammates and coaches that night, wanting to fly home that minute. But I remember daddy telling me he wouldn’t let me, telling me to play our last game of the weekend and come see you Sunday when I got back. So I did that and I remember driving to Oakland and buying a Spiderman toy for you on the way.

I remember all the trials and tribulations you encountered along the roller coaster that would become your final ride in “body.” I remember the hospitals, I remember The Ronald McDonald House, your Bone Marrow Transplant and through it all…I remember how strong you were and still are.

I remember seeing you and spending our last physical days together during Mother’s Day weekend in Denver, at Brent’s Place. And I remember May 25, 2006 at 12:47 PM when you left me in body and moved up to a better place in heaven where you’ll always be my brother, my friend, my hero, and my angel.

There are so many memories I have of you and I will carry them with me forever; I’ll always be your big brother Chrissy. You taught me so much in your 6-plus years and today I see so much of you in me. I’m so proud to say that I’m your big brother. I can picture you now, sitting up in heaven smiling down on all of us saying “Boo! Did I scare you?” or “You wanna piece of me?” And you know what …I do wanna piece of you, a piece that I can hold onto until the day I see you again. When I can pick you up and just give you a big hug and kiss. Through all of these memories, I know we’re not remembering your death but actually celebrating your life and I find some comfort in knowing that you’re looking down on me—normal again, free of the pain and medicines.

You always were a fast kid and I guess you just made it to the sunshine and to heaven before me. So I’ll see you when I get there; I love so you much Nicholas, I’ll never forget you.

Love always,
Your big brother Chrissy"

 


Friday, June 2, 2006 11:59 PM CDT

AMAZING!

TODAY
Today as Nicholas’ Memorial Service began, it wonderfully began with sounds that many of us have become so accustomed to…Nicholas’ song-of-love playing as Pastor Tom Dabasinskas, our other boys, and mom & dad walked into the sanctuary.

Amazing because the spirit of Nicholas was so alive throughout the Moraga Valley Presbyterian Church. Seemingly—and although we know angelic—enjoying it from the MEMORIAL SERVICE and the bubble procession that followed…to the release of doves and butterflies at the INTERMENT…and with the continual love of hundreds of “people” during the CELEBRATION OF LIFE remembering, sharing, and enjoying the beauty of Nicholas and God’s work manifesting in our hearts because of His work in Nicholas.

While there was prayer; nine speakers (at two of the three components of today’s celebration), three separate soloists performing (one at each celebration component); performance by four beautiful-little harpists; bubbles, doves, and butterflies; Thunder of the Golden State Warriors professional basketball team sharing his and the Warriors’ organization’s love through the interaction with Thunder during an “open mic” portion of the Celebration of Life component; …it was Nicholas’ favorite thing that truly made today amazing. It was…the people!

It was everyone present representing an unbelievable cross section of Nicholas’ life. From family, friends, school, hospitals, church, and cross sections of those that have come to know Nicholas by his actions of love that have become word of mouth to so many. Mom & dad realize that it is about Nicholas and God’s love for Nicholas and all of us, that IS making Nicholas' journey amazing. We are so proud of our 6-year old boy who continually and vibrantly lives in spirit…teaching us over the past six years, today, and now...forever.

CONTINUING JOURNEY
The stories of Nicholas Colby Gilbert were amazing because of the interactions with you, with people from everywhere. There are now so many more stories to tell. As one person wrote on tonight’s Guest Book, “The stories, music, and planned details were beautiful to participate in and so perfect for not only a child, but brought so much comfort and release to those present.”

Over the next week we will share the speeches, poems, songs, and stories of love from the Memorial Service, Interment, and Celebration of Life. We are so excited to be getting ready to share today’s experiences because we will get to experience them again and again! Oh, and the “program” describing how our day unfolded will be shared because it tells a story as well. A story of Nicholas’ artwork integrated onto the program and his pictures that provide a glimpse into his world. And, we are determining the best way to make the “Video Tribute” set to poignant music available to you as well-“The Story of Nicholas.”

There were dozens of people behind the scenes creating and delivering a moving experience—The Celebration of Nicholas’ Life. Because we just referenced the program and video tribute, we are referencing our thanks to another dear friend of ours, Ginny, who tirelessly and lovingly produced the program and video tribute providing a consistent look & feel of “The Story of Nicholas.” What an amazing friend and what amazing friends you will hear more about!

Thank you so much for your Guest Book entries, they are very helpful to mom & dad as well as our other boys, and we have learned they are so inspiring to the Nicholas Colby community which is this website.

……

Nicholas’ legacy will live on through……

The Nicholas Colby Fund:

A non-profit fund established by a dear friend of ours to help other children or children of parents who are sick or suffer setbacks—lovingly providing for children. The Nicholas Colby Fund is in memory of our beautiful son, Nicholas, who will continue to vibrantly live in all of our lives. More information about the Nicholas Colby Fund will soon be provided.

Tax-deductible donations may be made to:

Nicholas Colby Fund
1547 Palos Verdes Mall, PMB 260
Walnut Creek, CA 94597-2228

Tuesday, May 30, 2006 10:28 PM CDT

***
Thank you for your reflections and sharing on the love you experienced and experience with our sweet Nicholas. As this week unfolds, our focus is on our Nicholas that is now an angel to us all. For now, this is where our heart has landed and soon we will share our reflections on this CaringBridge site.
***

JOIN US
We hope that all of you can join us for all or parts of Nicholas’ services celebrating his life…sharing the love of God and memories as a tribute to Nicholas that will forever live in the hearts and souls of so many of us:

THURSDAY, JUNE 1, 2006
Viewing of Nicholas Colby Gilbert
Oakmont Memorial Park
2099 Reliez Valley Road
Lafayette, CA 94549
(925) 935-3311

Private: 4 to 5:00 pm
Public: 5 to 7:00 pm

FRIDAY, JUNE 2, 2006
Memorial Service
Moraga Valley Presbyterian Church
10 Moraga Valley Lane
Moraga, CA 94556
(925) 376-4800

11:00 am to 12:30 pm

FRIDAY, JUNE 2, 2006
Interment Service
Oakmont Memorial Park
(Address above)

1:00 pm

FRIDAY, JUNE 2, 2006
Celebration of Nicholas' Life
Moraga Valley Presbyterian Church
(Address above)

2 to 5:00 pm

IN LIEU OF FLOWERS
In lieu of flowers, please consider making a tax-deductible donation to the Nicholas Colby Fund, a non-profit fund established by a dear friend of ours to help other children or children of parents who are sick or suffer setbacks—lovingly providing for children. The Nicholas Colby Fund is in memory of our beautiful son, Nicholas, who will continue to vibrantly live in all of our lives. More information about the Nicholas Colby Fund will soon be provided; meanwhile donations may be made to:

Nicholas Colby Fund
1547 Palos Verdes Mall, PMB 260
Walnut Creek, CA 94597-2228

CELEBRATION OF NICHOLAS’ LIFE
Nicholas, our little sunshine continues to warm our hearts with his strength remaining as a source of strength in so many of us; his energy still serving as the source of energy to drive change; and his enthusiasm, joy, & endless passion for caring about others as the lens we look through cherishing his words, actions, and the flavor of his love.

So as we try to understand why our son, Nicholas, is no longer physically here, we are realizing that his “love” and teachings—through his six years—will never leave us void although painfully we miss him so dearly. We have always talked and took action toward trusting and believing in God’s words…His promise to protect, shield, guide, provide, and love Nicholas.

So as we trust and believe, we are considering God’s promises as perfectly performed in the way that God needs Nicholas, His son too. What Nicholas has done and is doing really is God’s work as experienced through the testimonies of all of you, although painfully we miss him so dearly.

We hurt so much wanting to make sure Nicholas is in a beautifully lit place, warm, comforted, full of joy, and full of love. So as hard as it is missing our little sunshine, we are trusting and believing that God is delivering His promises to Nicholas and will deliver His promises to us as well. Still…”God, who we need right now is You!”

"And Nicholas,
-We hold you just the way you like...
-We pat you just the way you like...
-We rock you just the way you like...
-We love looking at you just the way we like...
-We love listening to you just the way we like...
-We love touching you just the way we like...
-We love the flavor of your love and its aroma that is still in our lives...
-We love the flavor of your love that we still taste in every part of our lives...
-And Nicholas, because of you, loving you in every way instantly evokes the radiant love of God flowing within and around your spirit illuminating our lives so deeply that although we do not have a dark place in our bodies or minds—because of God, because of you—we so dearly miss the physical touch of your sunshine in so many ways...and then we feel you in more than so many ways...thank you, son, for being our son and loving us in every single way!"

SHARING LOVE
Please continue to share on the GuestBook, with all of us, your memories and experiences with Nicholas…love generating love!

 

 


Saturday, May 27, 2006 11:59 PM CDT

CELEBRATION OF NICHOLAS’ LIFE
Nicholas, our little sunshine continues to warm our hearts with his strength remaining as a source of strength in so many of us; his energy still serving as the source of energy to drive change; and his enthusiasm, joy, & endless passion for caring about others as the lens we look through cherishing his words, actions, and the flavor of his love.

So as we try to understand why our son, Nicholas, is no longer physically here, we are realizing that his “love” and teachings—through his six years—will never leave us void although painfully we miss him so dearly. We have always talked and took action toward trusting and believing in God’s words…His promise to protect, shield, guide, provide, and love Nicholas.

So as we trust and believe, we are considering God’s promises as perfectly performed in the way that God needs Nicholas, His son too. What Nicholas has done and is doing really is God’s work as experienced through the testimonies of all of you, although painfully we miss him so dearly.

We hurt so much wanting to make sure Nicholas is in a beautifully lit place, warm, comforted, full of joy, and full of love. So as hard as it is missing our little sunshine, we are trusting and believing that God is delivering His promises to Nicholas and will deliver His promises to us as well. Still…”God, who we need right now is You!”

"And Nicholas,
-We hold you just the way you like...
-We pat you just the way you like...
-We rock you just the way you like...
-We love looking at you just the way we like...
-We love listening to you just the way we like...
-We love touching you just the way we like...
-We love the flavor of your love and its aroma that is still in our lives...
-We love the flavor of your love that we still taste in every part of our lives...
-And Nicholas, because of you, loving you in every way instantly evokes the radiant love of God flowing within and around your spirit illuminating our lives so deeply that although we do not have a dark place in our bodies or minds—because of God, because of you—we so dearly miss the physical touch of your sunshine in so many ways...and then we feel you in more than so many ways...thank you, son, for being our son and loving us in every single way!"

JOIN US
We hope that all of you can join us for all or parts of Nicholas’ services celebrating his life…sharing the love of God and memories as a tribute to Nicholas that will forever live in the hearts and souls of so many of us:

THURSDAY, JUNE 1, 2006
Viewing of Nicholas Colby Gilbert
Oakmont Memorial Park
2099 Reliez Valley Road
Lafayette, CA 94549
(925) 935-3311

Private: 4 to 5:00 pm
Public: 5 to 7:00 pm

FRIDAY, JUNE 2, 2006
Memorial Service
Moraga Valley Presbyterian Church
10 Moraga Valley Lane
Moraga, CA 94556
(925) 376-4800

11:00 am to 12:30 pm

FRIDAY, JUNE 2, 2006
Internment Service
Oakmont Memorial Park
(Address above)

1:00 pm

FRIDAY, JUNE 2, 2006
Celebration of Nicholas' Life
Moraga Valley Presbyterian Church
(Address above)

2 to 5:00 pm

In lieu of flowers, please consider making a tax-deductible donation to the Nicholas Colby Fund, a non-profit fund established by a dear friend of ours to help other children or children of parents who are sick or suffer setbacks—lovingly providing for children. The Nicholas Colby Fund is in memory of our beautiful son, Nicholas Colby Gilbert, who will continue to vibrantly live in all of our lives. More information about the Nicholas Colby Fund will soon be provided; meanwhile Tax-Deductible Donations May Be Made To:

Nicholas Colby Fund
1547 Palos Verdes Mall, PMB 260
Walnut Creek, CA 94597-2228

SHARING LOVE
Please continue to share on the GuestBook, with all of us, your memories and experiences with Nicholas…love generating love!

 


Friday, May 26, 2006 11:59 PM CDT

CELEBRATION OF NICHOLAS' LIFE AND LOVE THAT "IS" WITH US, ALWAYS
Nicholas Colby Gilbert continues to vibrantly live in all of our lives and there is so much more to share of Nicholas in so many days, weeks, months, and years ahead. (All meaning your life as well; and we are so thankful it includes all of you as all of you mean so much to Nicholas, mom & dad, and our other three boys.)

Final details of Nicholas' memorial service, internment service, and celebration of life should be posted by this coming Sunday (May 28), and here is the brief information:

THURSDAY, JUNE 1, 2006
Viewing of Nicholas Colby Gilbert
Oakmont Memorial Park
2099 Reliez Valley Road
Lafayette, CA 94549
(925) 935-3311

Private: 4 to 5:00 pm
Public: 5 to 7:00 pm

FRIDAY, JUNE 2, 2006
Memorial Service
Moraga Valley Presbyterian Church
10 Moraga Valley Lane
Moraga, CA 94556
(925) 376-4800

11:00 am to 12:30 pm

FRIDAY, JUNE 2, 2006
Internment Service
Oakmont Memorial Park
(Address above)

1:00 pm

FRIDAY, JUNE 2, 2006
Celebration of Nicholas' Life
Moraga Valley Presbyterian Church
(Address above)

2 to 5:00 pm

In lieu of flowers, please consider making a tax-deductible donation to the Nicholas Colby Fund, a non-profit fund established by a dear friend of ours to help other children or children of parents who are sick or suffer setbacks, lovingly providing for children. At the end of this journal is additional information about this fund, including the address for your donations.

NICHOLAS ON MAY 25, 2006
There is so much of Nicholas to share and there is so much love filling our hearts fighting the piercing pain throughout every part of our bodies and the deepest parts of our being. Including Nicholas' last day with us all in body, the love from Nicholas and the love from so many (seemingly representing everyone near and far), there are stories of love filling our hearts and minds--we will soon share them all.

Right now we want to share a piece of Nicholas' last physical day with us all. It is a moment with family and friends. Imagine, everyone from everywhere who helped to welcome Nicholas back to California shortly after 12:45 am on May 25, 2006. His brothers, grandparents, uncles & aunts, cousins, neighbors, playmates & their parents, teacher, friends he met along this journey, and amazingly his doctors, nurses, & other hospital staff from all three hospitals that have been part of Nicholas' life. Yes, around 1:15 in the morning they (you) were there! And yes, throughout the rest of the early hours and throughout the day up to 12:50 pm on May 25, 2006, they (you) were there for Nicholas.

The moment that we will share is the reading of a book, "The Next Place" by Warren Hanson, that was given to Nicholas on May 24, 2006 by his doctor (Dr. Gore) at The Children's Hospital-Denver while in the Intensive Care Unit (ICU) as we prepared to be flown home to California. Dr. Gore and all of the nurses who had been around Nicholas during our stay in Denver stayed with Nicholas and mom & dad from the time we entered the Emergency Room at 1:30 am on May 24, to 9:45 pm on May 24 when we left for California. The reading of the book was with everyone from everywhere present in Nicholas' ICU room:

"The Next Place

The Next Place is an inspirational journey of light and hope to a place where earthly hurts are left behind. An uncomplicated journey of awe and wonder to a destination without barriers.

Lose yourself in the uplifting sense of comfort and serenity. Embrace the joyful spirit of oneness. Then pour yourself into the lives of those you love.

The Next Place is, above all, a celebration of life. Hear the music. Feel the warmth. And be carried away along life's everlasting flight.

The next place that I go will be as peaceful and familiar as a sleepy summer Sunday and a sweet, untroubled mind.

And yet...it won't be anything like any place I've ever been...or seen...or even dreamed of in the place I leave behind.

I won't know where I'm going, and I won't know where I've been as I tumble through the always and look back toward the when.

I'll glide beyond the rainbows. I'll drift above the sky. I'll fly into the wonder, without ever wondering why.

I won't remember getting there. Somehow I'll just arrive. But I'll know that I belong there and will feel much more alive than I have ever felt before. I will be absolutely free of the things that I held onto that were holding onto me.

The next place that I go will be so quiet and so still. That the whispered song of sweet belongings will rise up to fill the listening sky with joyful silence, and with unheard harmonies of music made by no one playing, like a hush upon a breeze.

There will be no room for darkness in that place of living light, where an ever-drawing morning pushes back the dying night. The very air will fill with brilliance, as the brightly shining sun. And the moon and half a million stars are married into one.

The next place that I go won't really be a place at all. There won't be any seasons--winter, summer, spring or fall--Nor a Monday, Nor a Friday, Nor December, Nor July. And the seconds will be standing still...while hours hurry by.

I will not be a boy or girl, a woman or a man. I'll simply be just, simply, me. No worse or better than. My skin will not be dark or light. I won't be fat or tall. The body I once lived in won't be part of me at all.

I will finally be perfect. I will be without a flaw. I will never make one more mistake, or break the smallest law.

And the me that was impatient, or was angry or unkind, will simply be a memory. The me I left behind.

I will travel empty-handed. There is not a single thing I have collected in my life that I would ever want to bring except ­the love of those who loved me, and the warmth of those who cared. The happiness and memories and magic that we shared.

Though I will know the joy of solitude...I'll never be alone. I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one, and the circle of our spirits will shine brighter than the sun.

I will cherish all the friendship I was fortunate to find, all the love and all the laughter in the place I leave behind.

All these good things will go with me. They will make my spirit glow. And that light will shine forever in the next place that I go."

THE JOY THAT NONE CAN TAKE AWAY...
Below are words we have spoken about often, that have helped us along Nicholas' journey. And it is not just about the words, it is about knowing, trusting, and seeing God's perfect work through and in Nicholas--AND praying and believing God's love for all of these kids is all that all of these kids need and have.

"I walk with God along the way, and oh, it is a joyful-dominion day. No more I suffer cruel fear, I feel God's presence with me here. The joy that none (and nothing) can take away is mine, I walk with God today."

"Green pastures are before me, which yet I have not seen. Bright skies will soon be over me, where darkest clouds have been. My hope I cannot measure, my path in life is free. My Father has my treasure, and He will walk with me."

***PLEASE STAY WITH NICHOLAS ON THIS CARINGBRIDGE SITE***
Please stay with Nicholas, mom & dad, and our other three boys Christopher, Timothy, and Matthew as there is so much more of Nicholas to share. More than we could imagine as his love for God, mom & dad, his brothers, and all of you are really so much more than we could ever imagine.

Nicholas always and forever will illuminate with rays of sunshine that warms our and your heart. His strength, energy, enthusiasm, joy, & endless passion for caring about others will amazingly embrace the world and heaven because of God and all of you:

-Can you see the love from Nicholas' beautiful eyes?
-Do you taste the caring flavor evoked from Nicholas' radiant smile?
-Can you feel the warmth of his touch?
-Do you hear the love, gentle, sharing, and fun words invoked from his mouth?
-Can you and do you get a scent of Nicholas and everything about him?

MEMORIES
On this CaringBridge site we have read some beautiful memories of your experiences with Nicholas captured on the GuestBook. PLEASE continue to share on the GuestBook, with all of us, your memories and experiences with Nicholas. Nicholas will read and feel the love generating love!

IN MEMORY OF NICHOLAS COLBY GILBERT...­
In memory of our (and your) Nicholas Colby Gilbert who will continue to vibrantly live in all of our lives, a non-profit Nicholas Colby Fund has been established by a dear friend of ours to help other children or children of parents who are sick or suffer setbacks, lovingly providing for children. More information about the Nicholas Colby Fund will soon be provided; meanwhile Tax-Deductible Donations May Be Made To:

Nicholas Colby Fund
1547 Palos Verdes Mall, PMB 260
Walnut Creek, CA 94597-2228

 


Thursday, May 25, 2006 11:58 PM CDT

A short note from Nicholas’ big brothers…

Today was a good day and a bad day…
Bad, in that our brother, your friend and this world’s little angel is no longer with us in body, but good in that we can honestly say that he is so much happier now and in peace, forever with us in spirit, thought and memory.

By my watch, at 12:47 PM our little warrior to some and superhero to others passed away peacefully this afternoon at LPCH in the arms of family and friends, with much comfort and love surrounding him. Being with him last night and today there was definitely a sense of calmness within and around Nicholas which was great to see. After hours of dialogue with Nicholas and comforting words by many we hesitantly left LPCH and made it back home in Lafayette around 7 PM. We then sat together and watched a few slideshows of our brother in a small, but soothing celebration of his life. Naturally, we are all exhausted and worn down by today’s events, as well as the past months dating back to November 2004 when our journey first began. Our parents are both deservingly getting some rest now together in the family room and we are preparing dinner for us all. We decided to order out for Nicholas’ favorite – Japanese from his favorite restaurant – Blue Gingko here in Lafayette. When they wake up we will all enjoy a family dinner together, our parents, us and most importantly Nicholas Colby Gilbert, sitting at the head of table with his favorite shrimp tempura on his plate.

We’re sure our parents will sit down together and write their version of today’s journal, but until then we wanted to share this information with you in our own words. We all love Nicholas very much and look forward to the day we can see him again. Until then, we know he is sitting up in heaven smiling down on us all, “normal again,” (without his Broviac) free of the pain and medicines.

***NOTE – A dear family friend of ours has set up a foundation in honor of Nicholas, exact details of it will follow and be posted here in the coming days***

Sincerely,
Christopher, Timothy, Matthew (& Jordan our family friend and brother in every sense)

 


Thursday, May 25, 2006 8:26 AM CDT

HOME (CALIFORNIA)
Yesterday, Wednesday, afternoon in the Pediatric Intensive Care Unit at TCH-Denver, Nicholas had continuous trouble breathing and maintaining a desired oxygen level. He had to be intabated (tube down his throat) and placed on a ventilator. At that time...we also made a decision to have Nicholas home...so arrangements were made to be transported via "Air Ambulance" once he was stabalized from the intabation.

Wednesday night we left Denver around 9:45 and we landed safely in California around 12:45am PST. By the way, as we entered California Nicholas' blood pressure and oxygen level were better-the flight nurse and respiratory therapist said they guess Nicholas certainly wanted to be home!

Following the medical-uneventful flight (good), literally as Nicholas was entering his Pediatric Intensive Care Unit room at Stanford-LPCH his pulse and blood pressure were lost. The medical team got his pulse and BP back without having to shock him. Nicholas is relatively stable right now and amazingly is breathing a tiny bit on his own. And once again, we are reminded to "be still and know that I am God." Nicholas, as you have witnessed, is extraordinary and we know God absolutely loves him.

Note: Nicholas continues to be blessed in so many ways. What is so embedded in our hearts is love for the medical staff at CHO and LPCH, and like CHO and LPCH, also love for the TCH-Denver staff-at all levels-for who they are and how they do what they do. We thank them for "showing up" in such a loving, caring, and joyful way in the face of awful challenges patients and their parents confront. And then we again are reminded to "be still and know that I am God." God's omnipotence, omniscience, and omnipresense is at work so Nicholas is loved so deeply, completely, and perfectly-today, tomorrow, and always. And, Nicholas love and joy is not done...he walks with God on this earth!

 


Wednesday, May 24, 2006 9:23 AM CDT

UPDATE #1

EARLY WEDNESDAY JOURNAL BECAUSE ER AND ICU
Following posting of last night's journal (Tuesday), at 1:30 this morning we took Nicholas to the Emergency Room (ER) where his doctor met us after talking with her on the phone. During a regular blood pressure check our machine was unable to detect a blood pressure on Nicholas (it did on mom) and he complained of severe pain in his stomach and back.

While in the ER his blood pressure and oxygen level were running too low and his stomach was distended. Stomach and chest X-rays were taken and air was determined to be leaking somewhere. Nicholas was transported to the Intensive Care Unit (ICU) to ensure high-level of follow up and monitoring. His blood pressure and oxygen level have come up (good) and they are working toward them being stable.

PLEASANT SURPRISES IN THE ICU
Nicholas, thankfully "being Nicholas" surprised the staff a couple of times by the way he navigated some of the troubled moments...

While he is still in the ICU, we pray & love God continually, trusting and believing His words...

 


Tuesday, May 23, 2006 11:16 PM CDT

NICHOLAS AND BABIES
You know Nicholas and babies...this morning in the clinic it was like experiencing two stars shinning and sparkling as Nicholas and Ethan (a 6-month old undergoing treatment) played in Nicholas' room. They seemed to bring out more than joy in each other as their play generated the sensation of "ahh" in the hearts of the staff and others. PICTURES when we return (in 2 weeks).

VISIT TO THE U.S. MINT-DENVER
Thanks to a relationship the founders of Brent's Place has with the U.S. Mint-Denver, Nicholas really enjoyed a private tour of the Mint today. The United States Mint police, from the Chief to the to the officer greeting us at the entrance treated Nicholas as the prince he is (although Nicholas tells us he is the king when there are certain things being requested). You have read and seen that Nicholas loves collecting (and sharing) money so this tour illuminated his heart creating joy for all around him. We could not have asked for the experience to be any different or better and the Chief contributed significantly to the overall experience-amazing people doing amazing things even when there is no public forum. Nicholas, and mom & dad, had a great time!

AND THE MEDICAL NEWS ON THIS PAST FRIDAY'S BMA
Although we, too, certainly want to know the medical news, we want to talk about experiences of love first and foremost because these are things that really matter most. So like the experiences this morning with baby Ethan and the visit at the Mint, our experiences of love, caring, and sharing are focal points of our lives. Amazingly, these types of experiences are like a circle-of-love: caring, giving, sharing, experiencing, and rejoicing. And with these types of experiences you crave more so giving more repeats the circle-of-love...

Fridays' bone marrow aspirate (BMA) results were received today and the interpretation is that there has been a little bit of progress from May 9. However, the progress was not medically significant in terms of percentage of blasts. Remember, the May 9 analysis revealed 90percent blasts with 40percent viable; and this past Friday's number is 82percent with the percent viable not reported although some percentage are not viable. Mapping back to what we stated in yesterday's journal, now that we added the steroid, Decadron, could this be the medical twist needed and could the results lead to better medical options for others?

So while we do want to understand the numbers, we are not holding out for the numbers to indicate Nicholas' future! Nicholas is in God's hands and His hands are not governed by numbers-they are governed by Love. We are sure you have seen (through Nicholas' journey as well as others) love manifest amazing realizations-miracles in many regards and God being God although we wonder why things unfold as they do. And, we trust and believe.

WHAT IS NEXT
Specific lab work sometime toward the end of next week or before we come home to California June 6. And those results will influence decisions for next steps with the Forodesine and any other medical options. Discussions are underway with BioCryst to allow Forodesine to be administered in California at either Children's Hospital-Oakland (CHO) or Stanford-LPCH so we would not have to stay away from home beyond this 6-week Forodesine induction. (CHO preferred because it is much closer to our home and considering the every-weekday treatment...)

May 23, 2006 Blood Counts:

WBC: 0.5
HGB: 11.1
PLTs: 19 - Platelets transfusion today after this level was reported.
ANC: NA

 


Monday, May 22, 2006 11:59 PM CDT

FRIDAY'S BONE MARROW ASPIRATE RESULTS NOT KNOWN YET (Some Information From Scientists)
A broken machine at TCH-Denver has delayed results of this past Friday's bone marrow aspirate.
The lab work is now being performed by The University of Colorado's main hospital's lab. While the results now should be known to us tomorrow, samples from Friday's procedures that were sent "overnight" to BioCryst's scientists give us some information now.

The scientists' analysis reveals that the blasts are sensitive to the drug-Forodesine (good), however not as sensitive as it is in other patients. So it is having a favorable impact, we just will not know percentages until the results stated above. And, now that we added the steroid, Decadron, could this be the medical twist needed? (And could these results lead to better medical options for others?) We are very anxious and we remind ourselves to keep Nicholas in God's hands-trusting and believing His words.

NOTE: Sporadically, Nicholas' emotions are running high and this is a side effect of the steroid. Here too, we pray for God's shielding of Nicholas... We expect the steroid to be used for about two weeks (and today we started tapering the dose down).

BY THE WAY
-The oxygen that we started providing Nicholas around the clock last week has not been needed since Friday night-yeah.

-Nicholas had a quiet day at the clinic and a fun, engaging evening at the "Foundation House" at Brent's Place. He was playing, eating (better than he has in several weeks), and sociable the way we all remember Nicholas to be.

May 22, 2006 Blood Counts:

WBC: 1.6
HGB: 7.7 - Red Blood Cells transfusion today after this level was reported.
PLTs: 15 - Platelets transfusion today after this level was reported.
ANC: 80

 


Sunday, May 21, 2006 11:59 PM CDT

WHAT NICHOLAS SAID IN THE MIDDLE OF THE NIGHT (Saturday/Sunday)
"Mom, you do a good job being a mama-there is no doubt about it!"

ANOTHER QUIET, UNEVENTFUL MEDICAL DAY (Good)
Quiet day and nice moments, although short, on the balcony bench "taking in" the warm, gentle breeze; evening sky; and listening to the sounds of Denver (home-away-from-home). We are so grateful for the constant events of God's love and the outcomes of His words revealing truth over anything contrary to them. While uneventful medically, that in itself is amazingly eventful as God's love keeps Nicholas safe on this roller coaster journey.

TOMORROW (Monday)
Tomorrow we will learn the medical outcome of Friday's bone marrow aspirate-praying for the manifestation of God's words to be fully realized now. While it is not "our" will that will be done, God's will for His child is good so we trust and believe recognizing the good that we continually see.

May 21, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, May 20, 2006 11:59 PM CDT

QUIET DAY, SOOTHING EVENING
Nicholas and mom & dad had a quiet morning and afternoon-and it was uneventful medically which was so nice. The afternoon was spent lounging, playing silly games (funny faces and made-up hand games while we were lounging), talking, and praying.

We were given tickets to tonight's Colorado Rockies baseball game; however, at the time to go Nicholas wanted to go for a walk instead. We found some young people walking near Brent's Place and gave the tickets to them-they were naturally surprised and thankful.

Off we went on our walk enjoying the warm evening weather and refreshingly beautiful Western sky. The sky was a vibrant blue with scattered clouds as the sun was going down toward the Rocky Mountains. As the sun momentarily went behind some clouds, the blue sky and clouds took on an amazing majestic appearance providing a vibrant blue backdrop with a blend of yellow/pink/lavendar/orange and other colors seemingly glowing at the clouds edges. Along with the cascading mountain ranges at the horizon, we were in "awh" of God's great work. Just as awesome and inspiring is God's creation-Nicholas. Nicholas is...and we are so thankful and loving of this great work!

Nicholas had a good day. We thankfully pray for an even better Sunday, loving, living, trusting, and believing God's words to fulfill their promises-because truth is divinely real and will continually be what it is: omnipotent, omniscient, and omnipresent.

May 20, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, May 19, 2006 11:59 PM CDT

LAST NIGHT (Thursday) WAS ANOTHER GOOD NIGHT AND TODAY (Friday) WAS FULL WITH PROCEDURES

-Thursday night was peaceful and we all slept fairly well.

-Friday morning we were at TCH-Denver's clinic for the every-weekday Forodesine treatment.

-Then Nicholas was in the operating room for the bone marrow aspirate. Analysis should be complete by Sunday so we will either receive the results on Sunday or Monday.

-Remember, last week the medical community just learned that on this experimental treatment, adding the steroid-Decadron-has shown to get one of two patients into remission. Today, Nicholas started receiving Decadron and will over the weekend. Next week's lab results will be a factor determining if Nicholas will receive it for about one week before tapering it off.

-Tomorrow and Sunday we will administer the oral form of Forodesine. We are doing this because the last couple of weeks Nicholas has experienced tougher times during mid-week. The weekend oral dose is an addition for some on this experimental protocol; however, no significant benefits have been realized (to date). Recognizing the mid-week tougher times it is the doctor's hope the weekend dose will provide a benefit to Nicholas.

-Remember the monthly IVIG (immune booster) Nicholas appeared to have a reaction to on May 5? Today they tried to administer it again and he appeared to have another reaction to it so we will not give this to him until we return to California.

-The pre-treatments and sedation for all the procedures today also resulted in Nicholas resting or sleeping just about the whole day & night.

-We are so fortunate to continually have nurses/doctors that truly engage and "care" about Nicholas in ways that go well beyond the medical role. In fact, the engaging and caring is equally extended to mom & dad.

-And we continually are amazed with the love and support from long-time and new friends. Thank you so much for the cards and packages Nicholas is blessed with (through you). Your endurance, continually being with us in the ways that you are touch our hearts and amazingly helps make things easier in a variety of ways. We are blessed and so grateful to each and EVERY ONE OF YOU!

-Love leads and follows Nicholas in amazing ways. Note: while it is very warm in Denver these days, we heard today that it was raining back home in Lafayette. And this evening we received a telephone call about a rainbow over Lafayette. Not one, two rainbows.

May 19, 2006 Blood Counts:

WBC: 1.2
HGB: 8.7
PLTs: 44
ANC: 12


Thursday, May 18, 2006 11:59 PM CDT

LAST NIGHT WAS A GOOD NIGHT...the best in 19 nights! No fevers, no pain, no vomitting, and no sleepless night. SIDE NOTE: During the night when the oxygen mask was too close-accordingly to Nicholas-he would wake up and say, "Way too close!"

THIS MORNING WAS VERY GOOD...Nicholas woke up saying he was hungry which was the first time he "wanted" to eat breakfast in a couple of weeks. He was up (not wanting to lay down as the case has been lately), he was energetic (not wanting to just be "patted"), he was mentally alert (not wanting to just concentrate on breathing and wanting to rest), and engaging with his surroundings (not just seemingly concentrating internally).

TODAY IS A NEW DAY...and love is love-truly. Love is lighting up our lives and Nicholas' path. In previous journals we talked about our love and appreciation for God's constant love as well as our recognition of His love regardless of what "numbers" are reported or what we hear medically. Our love, too, is constant even when things do not appear the way we want. Thankfully, we are experiencing and living amazing testaments along the way-when it appears to be dark, our hearts our warmed and souls glowing with God's illuminating love. Can you sense the lighted path that we are experiencing, again? God has always been a very present help in seemingly times of trouble.

NICHOLAS HAS THE DOCTORS "SCRATCHING THEIR HEADS" IN A GOOD WAY...as the clinical evaluations and medical condition are baffling to them. One moment things look concerning and then things look good; things just do not add up to them which was similarily the case at LPCH. We just focus on God and adding up his omnipotence, omniscience, and omnipresence by virtue of the truth calms us knowing God is in control so nothing should we fear.

TODAY'S ECHO-CARDIOGRAM...reveals no pulminary hypertension. So the fluid revealed on yesterday's CT scan is not because of poor heart function. The heart's ventricles are moving properly, valves doing what they are suppose to be doing, and no excess pressure. So, if we want to use the oxygen it can still be given for comfort, however, it is not needed for any compensation reasons. Yeh! So what is the reason for the fluid build up? No answer yet, however, we continually trust and believe God's amazing work for so many beautiful reasons we have witnessed.

LONG-LASTING INTERACTION...with Betsy (Housing and Special Events Coordinator at Brent's Place) who visited Nicholas in our apartment (home-away-from-home). And Nicholas was...well, you know what he was doing..."playing and having fun." Amazingly, his energy & enthusiasm are dramatically up and for long periods of time.

TOMORROW (Friday)...Nicholas will be in the operating room late morning for the fourth-week bone marrow aspirate (BMA). Also, he will receive a 4-hour IVIG (immune booster) infusion in the clinic. While this BMA is a very, very important medical step, "Oh Father, we rejoice recognizing Your love, shielding, protecting, and guiding Nicholas' path. We rejoice praying and behaving for You, recognizing that our lives are a testament of all that Your love always deliver.

WE ARE LOOKING UP...and forward because...well, you know what you have read, heard, seen, experienced, and are part of along this journey...

May 18, 2006 Blood Counts:

WBC: 1.4
HGB: 9.1
PLTs: 64
ANC: 14

 


Wednesday, May 17, 2006 11:59 PM CDT

ANXIETY BUILDS...and trusting & believing remains as our foundation because God is God. The many blessings along the way continue today, just some are in different ways.

Nicholas' breathing has been more laborious so a CT Scan was performed today. The good news is that there is no pneumonia or fungus. The anxiety is around hearing there is fluid around Nicholas' heart and lungs, it could be caused by leukemia. Also, the shift in altitude (Denver being one mile above sea level) could be causing pulmonary hypertension so an echo-cardiogram may be performed tomorrow to help identify intervention steps. Tonight at our home-away-from-home we began administering oxygen to ensure he receives the level needed without laborious breathing.

Because God is God, Nicholas is in the hands of love and His love is not confined to physical ideas like blood counts and oxygen levels. While this is all so hard to deal with, we are reminded that because of His love, "Be still and know that I am God." And because God is God, Nicholas is not confined to any process other than the process of love. We do believe because we-and you-have seen love shine in Nicholas along the way-and God's love is unwavering.

A SPARKLE AND GLOW...was a beautiful surprise as Nicholas got up from laying down all day and this evening to take a bath. During his bath Nicholas was Nicholas-and it was so good to see and feel. And as our evening comes to a close, Nicholas is Nicholas. Note: There was a glimmer of Nicholas' glow this afternoon in the clinic when two professional hockey players visited the clinic. At Nicholas' request because he was tired, Brad Larsen (of the Atlanta Thrashers, and formerly of the Colorado Avalanche) and Dan Hinote (of the Colorado Avalanche) were taking a picture with mom & dad. And in the picture, with Nicholas in the background, what do you think we saw on his face? Yes, Nicholas beginning a smile.

The blessings continue and tomorrow is a new day. We are so glad that God is the same yesterday, today, and tomorrow-He is the light of our lives continually illuminating Nicholas' path.

May 17, 2006 Blood Counts:

WBC: 2.6
HGB: 9.4
PLTs: 16 - Platelets transfusion after this was reported
ANC: 26

 


Tuesday, May 16, 2006 11:59 PM CDT

PRAYING
Today, 81 blasts were reported in the peripheral blood. And today was the second consecutive day without a key marker (Segs, that contributes to having the ability to fight off infections-ANC) being detected in the analysis of the blood. It is concerning because of the lack of "progression" and link to leukemia. Again, we pray that what is reported in the peripheral blood...well, God is God and Nicholas is loved because of God.

This evening Nicholas received a package exuding with love; including an inspirational message that summarizes most of the journals: "Love always protects, always trusts, always hopes, always perseveres" (1 Corinthians 13:7).

These journals are becoming hard to write because of physical and mental exhaustion. And then we realize that as hard as it is, it is all about God and Nicholas, and there is no greater reason to love. With love, there are no boundaries and no limitations... God, we love you, live for you, and know that You know what Nicholas needs. And You know Nicholas wants (and he deserves) to see and feel the manifestation of Your truth-love-in simple ways that enable Nicholas to fully and completely live for You: pure and perfect in EVERYWAY.

NOTE: An early evening stroll and Nicholas' first hair cut at a salon since the diagnosis. Afterwards, his first comment was, "Do I get a lollipop?" This is a good reason for us to go, tomorrow, to Enstroms candy store we have read about in the guestbook.

May 16, 2006 Blood Counts:

WBC: 2.8
HGB: 10.1
PLTs: 22
ANC: NA - see above comments

 


Monday, May 15, 2006 11:59 PM CDT

SNAPSHOT OF THIS PAST WEEKEND AND TODAY (Monday):

-A nice Mother' Day weekend created with love (we "made" it nice by not focusing on any limitations).

-Saturday: More site seeing around Denver; this time Nicholas was sort of the guide for his brothers who flew into Denver Friday night for Mother's Day and for Nicholas (and for dad too). Shopping at the outside/inside Cherry Creek Mall was a nice reminder of times at home, talking and finding ways to just be "playing and having fun." And dinner out, on an outside patio (so no mask for Nicholas). NOTE: Nicholas has received an invitation to tour the U.S. Mint here in Denver whenever he is ready (probably next week).

-Sunday: Although it was Mother's Day, all of us boys watched a little of the NBA playoffs. Actually, seeing her boys (dad too) watching basketball or playing it makes mom happy. Nicholas has not been watching very much of the NBA playoffs, maybe because the Golden State Warriors are not playing...

Fun in a park walking, talking, and playing. Nicholas enjoyed playing "tag" on a walkway that has hills/valleys and lots of curves. Nicholas especially enjoyed the speed of the game because he was "buckled up for safety" in a touring stroller (he has been too sore to walk other than very, very short distances) and dad was propelling him around the walkway following his directions-hand signals and laughter were dad's guides. Nicholas was "it" just once as he navigated the walkway and mom & his brothers without getting caught...

Being outside together was so beautiful (just being together outdoors) and the snow-capped Rocky Mountains provided a beautiful backdrop and amazing points for gazing...

And for Mother's Day dinner, we had dinner out again, on another outside patio-Cherry Creek Grill providing a sunset that rivaled Hawaii (just no water). Well, it was the warmth and relaxing time together that reminded us of Hawaii. Nicholas ordered Prime Rib just like the last time we were in Hawaii.

-This morning: Nicholas' brothers left Denver as the sun began to rise and they received a beautiful Denver send-off, the sun's beams illuminating the snow-capped Rocky Mountains.

-Today: Nicholas slept most of today receiving transfusions (below) at TCH-Denver clinic...

-Today: Doctors pulling information from Stanford-LPCH regarding Chimerism and Cytogenetics because the DNA from the donor and Nicholas is not adding up-more about "not adding up" later. Remember, Chimerism is the test that determines what cells are at work in the marrow, the donor or Nicholas'. And remember, Cytogenetics looks further into the DNA and those results were the reason Nicholas received a transplant (best medical-cure approach determined)...

-This evening: We left the clinic around 6:00 after being there all day. Nicholas had "awaken" and wanted to go to the Foundation House at Brent's Place (the main building of the apartments). Inside there was another little boy, Luis, playing with a staff member and Nicholas took the place of the that member. Luis and Nicholas had a good time and had dinner together (family night at Brent's)...

Then, Nicholas asked to go back to the park we visited yesterday. And off we went to the park with the sun getting close to setting. And off we went in Nicholas' touring stroller onto the walkway that has hills/valleys. Guess what we heard from Nicholas as we were zooming around the walkway, down, up, and around the curves? ..."Weeeee" were the sounds as he treated the ride like a roller coaster. And mom & dad, certainly, enjoyed seeing and hearing Nicholas "playing and having fun" as the sun began to set.

-This coming Friday: Next BMA.

-Perfect Timing: Nicholas' TCH-Denver doctor received special approval from BioCryst to deviate from the experimental protocol after the end of the fourth week and its BMA (this coming Friday). The deviation is administering a 3-day pulse of a steroid called Decadron. This past Thursday through Saturday his doctor was in Germany participating in a conference held by BioCryst (company that developed Forodesine Nicholas is receiving) with scientists and other lead doctors. In this conference it was first reported that in two difficult cases...receiving Forodesine, one patient went into remission with the addition of Decadron. So Decadron will be administered for 3 days starting this coming Saturday. God speed and God's time...

May 15, 2006 Blood Counts:

WBC: 1.3
HGB: 7.8 - Red Blood Cells transfusion after this was reported
PLTs: 10 - Platelets transfusion after this was reported
ANC: NA

 


Friday, May 12, 2006 4:51 PM CDT

A GOOD DAY (Relatively Speaking)
Nicholas was in full swing in all aspects this morning: letting the sunshine of his spirit shine. In fact, he had the best energetic and vibrant morning since we have been in Denver.

The day is going well and Nicholas is very excited about seeing his brothers tonight (and over the weekend). The boys arrive in Denver late tonight and it will be the start of a Mother's Day-Weekend for Sheila. She is naturally excited to be around her boys, and she is more excited to see Nicholas around his brothers. It will be great for dad, to be dad to all in one place.

NOTE: The peripheral blasts were down to 64 today.

MOTHER'S DAY WISH
Simply stated, however, deeply communicated, for all the mothers and those of you who share "motherly qualities" in & around your lives, Happy Mother's Day! Know that your love is powerful, needed, and wanted all the time. Even when your loved ones seem to take it for granite, your love is soft and warm-comforting and teaching always.

NO JOURNALS THIS WEEKEND!
This weekend we will not have access to update Nicholas' site; so we do not expect to be providing journals for Saturday and Sunday unless there is a dramatic change in things.

NOTE: We constantly talk about being blessed in a variety of ways, including you being in Nicholas' life the way that you are. Thank you, and thank you for being part of Nicholas' CaringBridge site.

WE WILL SEE AND HEAR FROM YOU ON MONDAY (Virtually)!

May 12, 2006 Blood Counts

WBC: 1.2
HGB: 9.9
PLTs: 16 - Platelets transfusion today after this was reported
ANC: 48

 


Thursday, May 11, 2006 11:59 PM CDT

NICE DAY AND THE JOY OF NICHOLAS WAS EASILY FLOWING
From interacting with his nurse practioner's 15-month old son, Mikka, who visited TCH-clinic with his mom this morning (remember the joy and love from his interactions with his LPCH nurse's son, Satchel?)...to just "playing and having fun" with mom & dad tonight, Nicholas' joy actually provided joy to mom & dad's heart as well as the nurses at TCH. After we left TCH Nicholas said, "That baby was cute and I liked playing with him." If you remember, Nicholas has always enjoyed babies, kids, and in general just caring about others.

WHAT DOES THIS MEAN?
Today, the daily blood work results show 81percent blasts in the peripheral blood. Over the last 7 days the percentage of blasts in the peripheral blood has increased from 10, 27, 47, 45, to 81. At this time the doctors are not sure what this means. We pray that like the dead blasts in the marrow this past Monday, the blasts in the peripheral blood are dead.

We do trust and believe that divine intervention is omnipotent, omnipresence, and omniscience so the miracles of God is God just being God. Of course we pray for miraculous turning of events and in some ways, although it has been so slow in our hearts and minds, we have continually seen Nicholas overcoming so many things in his way for 538 days now. We have and will always turn to God for the turning of all things to good.

AMAZING GOD
As amazing as Nicholas' joy is to our hearts, we are reminded that, "The joy that none can take away is ours, we walk with God along the way." Because nothing has power over God, nothing contrary to God has power over Nicholas. So putting everything going on into perspective, we are more & more amazed at the manifestation of God's love and spirit enabling Nicholas' joy to be full of life and the blessings of Nicholas' life to fulfill our lives.

We do wonder why Nicholas is still having to battle all that is going on. It is so, so hard to see him fight and battle his way through it all and we continue to trust and believe that God being God will continue to lovingly provide all that Nicholas needs. It is just so hard not having what we want now! And we can only believe that as faithful as Nicholas, at age 6, and we are, God WILL provide all that we want and need-Nicholas deserves everything good and true to His word. And we pray that a new day will be provided to all these beautiful kids battling life threatening situations (any situation) to create a new day for the world toward trusting and believing...

May 11, 2006 Blood Counts

WBC: 1.5
HGB: 10.5
PLTs: 20
ANC: 60

 


Wednesday, May 10, 2006 11:59 PM CDT

FINAL REPORT ON MONDAY'S BMA HAS EVEN BETTER NEWS
This afternoon Nicholas' doctor met with us regarding the final report on this past Monday's BMA. The final analysis is that of the 70-80percent blasts, a significant amount were dead cells so there were only 40percent active blasts. So relative to the 90percent blasts before we started this new treatment, down to 40percent is very good news.

NOTE: While Nicholas received pain medicine today for his legs, he had a little more energy and even had smiles to go along with all the love he feels and has.

SURPRISE PACKAGE
After we returned to our home away from home today, from the TCH-Denver clinic, Nicholas was greeted with a surprise package from parents so, so close to our journey. The Falsetti/Diffenderfer's sent Nicholas a large package that had packages within the package. For Nicholas (and mom & dad), opening the package felt like unfolding love touching our hearts again and again. What a blessing! With the packages/envelopes there was card that touched our hearts as well, as it spoke of support and love that had mom & dad smiling and knowing that we are supported. (We feel so much love and support from all of you: thoughts, prayers, guestbook entries, cards received...)

And, there was an envelope with a message shared with Nicholas: "These are red envelopes. They are a tradition in the Chinese culture usually given during Chinese New Year. The Red is a lucky color in Chinese culture and the symbols are for good fortune. I thought you might enjoy sharing them with Nicholas." We will give them to Nicholas over consecutive days, letting him know that there are so many people loving Nicholas along the way and we expect will love him forever.

SOMETHING NICHOLAS SAID TONIGHT
"Do You know where I think God's best spot is? In your heart because it is just a great spot."

May 10, 2006 Blood Counts:

WBC: 1.9
HGB: 11.6
PLTs: 36
ANC: 95

 


Tuesday, May 9, 2006 11:59 PM CDT

SLEEPLESS NIGHT (Monday)
Nicholas continued to have pain in his legs throughout Monday night/Tuesday morning so we were up every 2 hours administering IV Dilaudid, praying, "patting" & rocking, and comforting him. And can you imagine: not sleeping, experiencing pain, middle of the night, and Nicholas was still so loving in asking for help. One time he said, "Mom, if I asked, would you mind getting me some IV Dilaudud?"

NOTE: If needed, another plan is in place using a Fentanyl patch that continuously releases pain medicine. Here, too, "There is no spot where God is not!"

And tonight when Nicholas was talking to one of his brother's on the phone, Nicholas calmly said, "I was in a little pain, but I'm good now."

MEDICAL RESULTS OF MONDAY'S BONE MARROW ASPIRATE AND BIOPSY
Remember, the last BMA showed 90percent leukemia and we have been looking to this experimental drug (Forodesine) to at the very least decrease the percentage at this 2-week stage of the 6 week process. And overall through God we, naturally, pray for complete and everlasting healing-whole and free from anything contrary to God's love and spirit.

The GOOD NEWS is that medically there is a reduction in the leukemia-down to 70 to 80percent. So a favorable difference is being realized; AND Nicholas deserves so, so much more! Through God Nicholas HAS infinitely more and we pray for the good that Nicholas' journey may do for others AND for the manifestation of God's truth to be revealed now in Nicholas-he so deserves it.

The Forodesine process continues here in Denver and our discussions with his doctor is ongoing as up-to-the-moment information is being secured from the pharmaceutical company (BioCryst). Our focus remains on God and Nicholas so we are keeping our actions on ensuring we are doing things "for" Nicholas and not "to" Nicholas.

NOTE: This evening we reduced the oral medicines Nicholas takes by stopping the evening dose of Cyclosprine. Remember this one used to manage/control graph-versus-host-disease (GVHD) from the BMT? This means three less pills at night. Another benefit of this experimental process and the Forodesine that Nicholas receives every weekday, is medical evidence that it also combats GVHD providing what is called graft-versus-leukemia effect (GVL). Daily, Nicholas' skin, liver function, and other things will be monitored that could be impacted. If these things are not negatively impacted, after one week we may stop administering Cyclosporine completely.

TRANSFUSIONS KEPT NICHOLAS IN CLINIC ALL DAY (Tuesday)
We were in the clinic late morning, noon, and evening receiving the every weekday Forodesine treatment and then two transfusions: Red Blood Cells and Platelets. Note: Although Nicholas received a Platelets transfusion yesterday, it was an extremeley small amount so we were not surprised to only see a slight increase in the Platelets count.

May 9, 2006 Blood Counts:

WBC: 1.1
HGB: 8.1 - Red Blood Cells transfusion today after this was reported
PLTs: 18 - Platelets transfusion today after this was reported
ANC: 55

 


Monday, May 8, 2006 11:59 PM CDT

LONG, EXHAUSTING DAY for Nicholas in the TCH-Denver clinic and operating/recovery rooms for treatment and procedures to assess the bone marrow. Nicholas slept just about the entire day (and mom & dad were physically and mentally exhausted throughout the day and night).

Complete medical results of today's procedures will be known tomorrow.

Nicholas started experiencing leg pain again and we re-started administering pain medicines; however, trusting and believing that God (who we continually love and need) will continually shield and guide Nicholas because He is God and Nicholas is His creation.

THANK YOU, EVERYONE, for being how you are with us: thoughts, prayers, guestbook entries... Nicholas has really enjoyed receiving the cards sent to him, the comforting words, and the nice surprises that also make mom & dad smile.

We continually hear that Nicholas remains a significant part of conversattions at his school, mom & dad's work, the hospitals, and other places where "you" are. We do feel your love-thank you. The love and encouragement are helpful as we focus on Nicholas, who deserves all the love in the world. As do all these beautiful kids who seemingly fight this fight for all kids!

NOTE: The Hemoglobin (HGB) count below shows NA; it was unable to be determined because of Lipemia that is something to do with the fat content in the TPN, food in a bag via IV, that was started May 4. The TPN was started because Nicholas was not eating well enough the last couple of weeks and we wanted to ensure he was receiving specific levels of nutrition. His eating has improved so we will soon stop the TPN mom infuses that runs through the night.

The Hematocrit count will probably be used to determine if a Red Blood Cells transfusion is needed while the HGB count cannot be determined.

May 8, 2006 Blood Counts:

WBC: 0.8
HGB: NA (see above note)
PLTs: 11 - Platelets transfusion today after this analysis
ANC: 104

 


Sunday, May 7, 2006 9:49 PM CDT

ANOTHER GOOD DAY
It has been a long time since Nicholas has been in a shopping mall. This afternoon we took him to the Cherry Creek section of Denver that has everything for every type of browser, shopper, diner, etc. Enjoying the weather strolling the outside mall and fun being in the inside mall. We went into a toy store that had an enormous variety of fun and educational toys; and then we went into the Cherry Creek Mall that is simply as good as it gets from an extravagant-mall perspective.

Nicholas said it, "Today was a great day!" And it was uneventful medically (great).

BMA TOMORROW (Monday)
Tomorrow we will be at TCH-Denver all day to begin the 3rd week of the 6th week treatment, and a bone marrow aspirate (BMA) to assess the status of the bone marrow. This is an early BMA because we want to determine, now, that these treatments are making the difference we expect. Nicholas will still have the BMA being scheduled for aproximately May 19 that is part of the experimental protocol.

Our thoughts and prayers continue to focus on God's omnipotence, omnipresence, and omniscience...therefore, knowing there is no spot within Nicholas that the light of God does not reach.

May 7, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, May 6, 2006 11:28 PM CDT

GOOD DAY-ALL DAY AND NIGHT
-Outside play with Nicholas riding/driving a miniature race car around the playyard at Brent's Place. The miniature car looked just like those at miniature raceways; however, it had pedals instead of an engine. Because we wanted Nicholas to feel the excitement of power and speed (again), dad was the engine pushing Nicholas around the track. It was fun seeing Nicholas maneuver the car at high speeds and on sharp turns. I guess you could say dad had a view as if there was an "in-car camera."

-"This is FUN," Nicholas screamed with joy and laughter in his voice while mom and Nicholas were playing "Mother May I" in the play area. He directed mom to do a lot of silly things around a made-up obstacle course.

-The play structure provided lots of fun as we created games and activities using the structure's bars, slide, school house facade, and a seperate miniture wooden/brick house.

PICTURES: We cannot wait for you to see the pictures of all this fun. Clearly, the light of love has Nicholas outwardly glowing and his eyes sparkling. We will try to make time to get all the Denver pictures posted soon. Be ready to smile seeing Nicholas' spirit shinning-through all that he is overcoming.

NOTE: again, no pain medicines needed and we rejoice and give thanks. As Nicholas' doctor said yesterday, "Nicholas keeps us on our toes!" referring to the amazing ways Nicholas has been lifted out of troubling moments and some troubling days.

May 6, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, May 5, 2006 11:59 PM CDT

GOOD START TO THE DAY as Nicholas woke up joyful with more strength, ease of walking, more lively display of his spirit, ease of eating, and overall more engaging with everything and everyone around him.

REACTION TO A MONTHLY TREATMENT had us afraid when Nicholas awoke 30 minutes into a 4-hour infusion of IVIG (immune booster) saying he could not breathe and "I feel like I am going to die." Mom & dad went into action with our love, stopping the IVIG infusion, calling in the medical team, and expressing God's presence (including the understanding that "There is no spot where God is not"). The doctors and nurses went into action: confirming the IVIG infusion was stopped; providing constant flow of oxygen; administering Hydracortisone (in addition to pre-medications already "on board": Benadryl, Tylenol, and Zantac (Ranitidine); listening to his lungs (they were clear); checking his oxygen level; and then hooking him up to monitors providing continuous awareness of vital signs. Then there was a level of calmness over Nicholas as he rested and fell asleep. And when he awoke he was calm and joyful-imagine that.

A decision was made not to continue the infusion today; we will do it next week (now, with four pre-medications).

BMA THIS COMING MONDAY (May 8) to check the status of the bone marrow. We pray and cry out to God for His healing touch as we trust and believe His healing words. We expect good things because love begets love, good begets good, and God-love and spirit-is good. We expect God's words to come back to Him in truth.

GOOD EVENING although Nicholas had a couple episodes of sadness and crying tonight that we transitioned into prayer and crying. Of course, we do not have answers to so many questions Nicholas has about "all this leukemia and bone marrow stuff" including questions that we, mom & dad, have about it all.

As Nicholas cries out for mom & dad, saying, "father, mother...," it seems to comfort him knowing we hear his crys and we are right there! And thinking about the comfort we provide Nicholas, we are comforted in the face of all that is going on as we cry out with Nicholas saying, "Father...". If mom & dad can comfort Nicholas by hearing and being there for him, we look to God-our Father-for His comfort and "being there" for Nicholas recognizing that He offers infinitely more of everything Nicholas needs.

Nicholas had a good evening "playing and having fun": opening and reading cards received in the mail, PS2 games with mom, "rough housing" with dad, conversations with mom as well as dad on a variety of topics, and all three together watching a movie: The Road To El Dorado ("Captivating songs and spectacular animation" about a search for gold with unlikely heroes making a decision to run off with the gold or face unforseen dangers to save the people of El Dorado.)

And NO pain medicines again-imagine that!

May 5, 2006 Blood Counts:

WBC: 1.7
HGB: 10.4
PLTs: 57
ANC: 51

 


Thursday, May 4, 2006 11:59 PM CDT

GOOD DAY MEDICALLY
After the last few days needing pain medicine every two hours around the clock, NO pain medicine was needed at all today-yeh! Along with being free of pain, Nicholas "showing" more of himself is more than pleasing to our eyes, ears, and hearts. His WBC rose again (good) and there were a lot of new cells forming and looking like good generation of young healthy cells.

GOOD DAYS SPIRITUALLY
The ups and downs of this roller coaster journey keeps us forward thinking as we "trust and believe" because of what we have seen. It is a journey of love even when we are down-because God is love so no matter what Nicholas faces he faces everything following God. We, truly, feel there is a message of love unfolding reminding us that hope with God means miracles of long, long ago.

BEAUTIFUL SURPRISES (Again)
Coming back to our apartment (home away from home here in Denver) after today's hospital-clinic treatment, there were several packages waiting for Nicholas. Packages of love representing all of you-from Nicholas' life-long friend, from a brother, from an aunt, and from someone we have never met.

The someone we have never met is a friend of our niece (Marcia): Terrence Robinson of Spun Silk Entertainment and Wolf Films (Universal City). Nicholas received an array of items that were everything he liked (even things we haven't wrote about on these journals-imagine that). And this is what they wrote:

"To the Gilbert Family,

We're friends of Marcia and she's been giving us updates from time-to-time on Nico, and from the information she relays, I have to tell you, words can't express how inspirational your son, Nico, and your family has been to our staff. We wish you all the very best, and know that you are all in our prayers every night. Please accept these gifts on behalf of the staff of Spun Silk Entertainment, and tell Nico to enjoy."

NOTE: As we have said before, it is not about gifts, it is the love that is behind the gifts and behind the thoughts and prayers from all of you. Blessings to us from God...

NICHOLAS' MEDICAL TEAMS, THANKFUL FOR GUESTBOOK ENTRIES
...We give praise to God and are so thankful for the medical staff being all and more than we would expect. As we have said before, we have been so blessed with seamless, heartfelt care from Children's Hospital Oakland, Stanford-LPCH, and here at TCH-Denver. We are blessed...

...And, it is so pleasing to continually read entries from "Nicholas's nurses" and staff from Stanford-LPCH and Children's Hospital Oakland. Nicholas loves and always remembers what one of his nurses at LPCH says, "Nicholas, I am always your nurse even if I am not assigned to you!" And these are the actions of everyone on his medical team.

May 4, 2006 Blood Counts:

WBC: 1.2
HGB: 10.5
PLTs: 19-Platelets transfusion today after this analysis
ANC: 48

 


Wednesday, May 3, 2006 11:59 PM CDT

SPIRIT, LOVE
Nicholas' wonderful spirit has generated so much passion for life and love-from him to us and from us (including all of you) to him. His spirit is so evident from the abundance of love we see & feel coming from within him, as well as his outwardly vibrant spirit. Outwardly, we are speaking about the sparkle and glow we have witnessed from his pictures along this journey that you, too, have seen on this CaringBridge site and his photo albums (under Links below). By the way we will soon post pictures from Denver that continually shine in the midst of everything going on.

While outwardly love is ever-present, it is a reflection of the equally ever-present love deep within Nicholas. And God, Spirit & Love, is ever-present so we absolutely expect the reflection of love to fully and permanently be expressed in Nicholas.

PROGRESS
Today Nicholas' White Blood Count (WBC) surpassed 1.0 (1.1) for the first time since mid-March. The doctor was very, very pleased to see this improvement. While it is just one step closer to all that we expect, it is "one step closer!"

Gaining control of the pain (with focus on Nicholas not having to experience pain) through medication is getting better and Nicholas had a better day than the previous five days. This evening we took a little drive after the weekday hospital-clinic treatment and it was very, very pleasing to see & hear smiles & playful laughter from Nicholas. Although he was still very tired. The drive included a trip to a toy store and he enjoyed looking at a variety of toys (having mom & dad surprise him with a couple toys).

ANOTHER AMAZING BLESSING
The following words are only for the purpose of sharing another blessing.

A former colleague (Kathy) wrote to dad today, coincidentally at the moment I was trying to secure flights for our other three boys to be in Denver for Mother's Day-facing challenges for a variety of reasons. Without her knowing about this, she wrote offering available tickets. And what she later wrote is a reflection of how we have been blessed by all of you: "Throughout experiences such as this, it's a blend of the big and little things that can help make a day a little bit better..." We are blessed and we feel it from all of you. Thank you!

May 3, 2006 Blood Counts:

WBC: 1.1
HGB: 11.2
PLTs: 25
ANC: 22

 


Tuesday, May 2, 2006 11:59 PM CDT

Another emotionally draining day trying to keep the pain under control; and we have a plan that includes mom delivering Dilaudid via IV, through his broviac (central line), that is faster acting than taking it orally. NO BLASTS in peripheral blood (after detection of blasts last Friday and yesterday)-we are so happy to see this.

God is God so we know we do not have to ask Him to be God: omnipotent, omnipresent, and omniscience. And we know we do not have to ask Him to love Nicholas and for Nicholas to be freed from any of this non-sense that has no power over God. Our trusting and believing is not blind faith because as hard as the last 529 days have been, there have been amazing blessings along the way. Nicholas IS an amazing blessing!

Remember, the next big medical step is a bone marrow aspirate that is scheduled to be performed May 19, checking to see if the treatment is doing what is expected. And we remember and know God...

May 2, 2006 Blood Counts:

WBC: 0.5
HGB: 11.9
PLTs: 48
ANC: 40

 


Monday, May 1, 2006 11:59 PM CDT

NICHOLAS' CRY FOR GOD
"Why me, why doesn't God touch me?" was the cry for help Nicholas repeatedly cried this morning. His tears and full body expression to mom & dad was to hold him, pat him (rhythmatic patting of our hands on his body), and rock him gently to help soothe the pain away.

As we softly talk and pray with Nicholas we tell him that he continually does everything just right and as hard as it certainly seems, God loves him so very, very much! He knows, we know, that God has blessed him in many ways; AND we cry out to God asking Him to let Nicholas FEEL His love in more ways because Nicholas really, really deserves complete healing NOW. (We recognize that it is not our will, but His that will be done and His word tells us that Nicholas is healed by His love.) We pray so hard for the manifestation of God's love to completely do, NOW, what it does-reveal purity and perfection...

ROUGH SUNDAY NIGHT, MONDAY MORNING
Nicholas had a rough Sunday night (could not sleep, leg and back pain, and did not "feel like myself") and Monday morning. We thought things had already been extremely difficult for us, and now we are at un-imaginable difficult time with his pain and effects of the leukemia breakdown due to the medicine. We know God is leading us and we trust & believe Him completely; however, we are struggling so much right now and need Him more and more.

We also pray that the leukemia blasts now seen in the peripheral blood is the breakdown of leukemia in the bone marrow as a result of this new medicine. God, who we need right now and always is You is our constant prayer along with our unwavering love and actions for Him.

NOTE: New apartment phone number at our home away from home: 303 864-9047 (same mailing address).

May 1, 2006 Blood Counts:

WBC: 0.9
HGB: 13.0
PLTs: 5-A Platelets transfusion today after this analysis
ANC: 18

Sunday, April 30, 2006 11:59 PM CDT
QUIET DAY
Today was another quiet, relaxing day full of joy (although we really miss being home with family and friends).

Tomorrow we begin week 2 of 6 of the every weekday treatment. We pray for God's continued shielding, protecting, guiding, and directing of our lives-full of love and comfort for Nicholas.

April 30, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Saturday, April 29, 2006 11:32 PM CDT
YESTERDAY EVENING AND LAST NIGHT:
Nicholas left the hospital mid-afternoon after being at the hospital since 3:55am, and was as vibrant as ever, yeh! He was smiling, joking, and just "playing and having fun." Imagine, time after time, challenge after challenge, this little light-Nicholas-shines through the darkest times and brightly lights up the world around him.

Last night he was as lively as ever and with a gentle touch of his hands on mom & dad from time-to-time seemed like another way for him to let us know of his amazing love and caring about others (in the midst of all that he faces). Talk about clarity of vision and purity of thought, we are blessed everyday with the constant reminders of purpose that Nicholas always leads us to. The purpose of focusing on our loved ones and love because when you "love" the clarity of purpose and actions lead us down the "right" path.

ENDLESS LOVE
While we pray for the possibilities that this new medicine offers, we trust God's love and believe His word and ALL the possibilities that He does provide-endless love providing endless good.

TODAY
Relaxing, restful day. And Nicholas was a typical, joyful 6-year old playing board games, wrestling-with mom, football catch with dad, reading, and...well you can see the picture in your mind and imagine our smiles seeing Nicholas playing and having fun. What a difference God always makes in our lives!

NOTE: 1 week down with 5 weeks to go before we return to California.

April 29, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Friday, April 28, 2006 10:32 AM CDT
***Overnight Update***

NICHOLAS WAS IN THE EMERGENCY ROOM
Shortly after midnight Nicholas had some chest pain and then a fever (he has not had a fever since Monday). We were in the emergency room at 3:55am for blood cultures (to rule out any bacteria or virus) and a chest xray. The chest xray was clear (yeh) and the cultures will take at least 24-hours to reveal anything. We stayed in the ER until 8:30 this morning and then transferred to the clinic to see his doctor here at TCH-Denver.

The fever has broke (yeh), the chest pain has gone away (yeh), and Nicholas has finally been able to sleep (yeh). We will be in the clinic until sometime this afternoon for the Forodesine infusion, RBC transfusion because his Hemoglobin (HGB) is a little low, and continued monitoring. We will then go back to our home away from home-apartment-only 2 blocks from TCH-Denver.

The experiences last night are side effects that can occur. Here too, we are reminded to "Be still and know that I am God" and nothing has to occur that is contrary to God, Love.

April 28, 2006 Blood Counts:

WBC: 0.5
HGB: 9.2
PLTs: 49
ANC: 40

THURSDAY, April 27, 2006
(A snapshot of this journal is being recreated because somehow it appears to have fallen "off")

ANOTHER GREAT DAY (AND FUN WITH DAFFY DUCK AND BUGS BUNNY)
Nicholas had an uneventful day at the hospital (clinic) for the Forodesine infusion and afterwards he was still full of joy and happiness. The joy and happiness continued when we got back to our home away from home via a visit by Daffy Duck and Bugs Bunny (from Six Flags-Denver). Playing and having fun along with a game of basketball.

We pray that the Forodesine does what we all want it to do AND we pray for all the possibilities through God which is all we really need.

April 27, 2006 Blood Counts:

WBC: 0.9
HGB: 11.1
PLTs: 69
ANC: 42
________________________________________
Wednesday, April 26, 2006 5:01 PM CDT
CHANGE IN WEATHER, NO CHANGE IN LOVE
The weather has changed from cool, warm, hail, snow, and hot in consecutive days. And just like the continuous flow of love that appears everywhere, really everywhere, the changes in everything we are experiencing reveals God's constance presence, guidance, and protection. The joy of the various degrees of nature compressed in a few days has been amazing to see and experience.

Day three of this treatment and everything is going even better than planned. Nicholas continues to be without any pain-this is so amazing! In fact, this morning when the hospital staff talked to the pharmaceutical company (BioCryst) that makes Forodesine, they were excited about Nicholas' experiences this soon. It is so comforting to walk with God knowing that through Him all things are possible; and navigating things that Nicholas is experiencing really gives substance to trusting and believing when sometimes it is hard to do based on this terribly long journey. Love leads, surrounds, and always follows Nicholas every step of the way. In the face of awful challenges, we are so grateful to have God's presence and His love.

CONTINUED FORODESINE TREATMENT THEN...
Although this initial treatment lasts for 6 weeks, after the fourth week a bone marrow aspirate will be performed to check the status of the marrow. It is one thing to hope and pray that the medicine does what we would like it to do-destroy leukemia and move Nicholas into remission-and we pray for all those things and the glory to God. With gratitude we also pray for God's continued guidance of the doctors' minds and hands. And we pray that medically this stage of Nicholas' journey may lead to a healing path for so many of these beautiful kids.

YES, NICHOLAS HAD AN AMAZING DAY
Think about love and how you would want to see a child enjoying life. And know that Nicholas was surrounded by love (well, you know this because we feel your love too), enjoying being "out & about," simply playing and having fun, and learning through practical application of things with subjects like language, math, history, science, etc. in mind. Being able to continue his learning with so many things going on is another blessing.

April 26, 2006 Blood Counts:

WBC: 0.6
HGB: 11.3
PLTs: 10 (Platelets transfusion today after this analysis)
ANC: 31
________________________________________
Tuesday, April 25, 2006 5:19 PM CDT
ANOTHER UNEVENTFUL TREATMENT DAY-THIS IS GREAT
Remember, every weekday we take Nicholas to the hospital for a 30-minute Forodesine treatment (overall time at the hospital is about 2 1/2 hours) and he does not have to be in the hospital for this 6-week treatment. Note: After the 6 weeks, follow up to this treatment can be performed at LPCH and that is our plan.

We are so grateful that just like yesterday, continually Nicholas' spirit and joy is taking flight and illuminating our hearts through his actions and "way of being" that appear to be a way for God reminding us of His omnipotence, omniscience, and omnipresence. Today, Nicholas continued his exuberance before treatment and after treatment at the hospial. This is simply amazing and we are reminded...Be glad, rejoice, for this is the day the Lord has made...

MEDICAL NOTE
During this treatment the doctors will specifically monitor the Uric Acid and Electrolytes. Today the Potassium, Phosphorus, and Magnesium were a little out of range and tonight we are adding Potassium to Nicholas' ovenight hydration (via IV when he is sleeping).

AS HARD AS ALL THIS IS, IT IS A JOURNEY OF LOVE FOR ALL OF US
Simply stated, love has been amazing and love always and forever will flow from God, Nicholas, our family, and all of you. Thank you for doing the things that you do, and being the way that you have been for Nicholas and our family. ...and for all these beautiful kids who needs all of our love.

NOTE: We were ask where we were staying in Denver and below is that information. Generally you can see where we are by looking on the home page, under Hospital Information (even when we are home).

MAILING ADDRESS FOR WHERE WE ARE STAYING:
C/O Brent's Place
1129 East 17th Avenue
Denver, CO 80218.

PHONE NUMBER FOR OUR APARTMENT:
(303) 864-9452

April 25, 2006 Blood Counts:

WBC: 0.8
HGB: 11.3
PLTs: 28 (Extremely low, even after yesterday's Platelets transfusion)
ANC: 35
________________________________________
Monday, April 24, 2006 8:32 PM CDT
SMOOTH HOSPITAL TREATMENT
Today, Nicholas began the new chemotherapy treatment that is part of a Phase 1 experimental study. There is some medical evidence suggesting that it could help Nicholas, at least destroy some of the leukemia to make things better for Nicholas. And with God, it could do so much more because of God (trusting and believing).

It was a very smooth transition to The Children's Hospital-Denver and the staff are as great as the staff we have been blessed to have at the other hospitals. The infusion of the chemotherapy went as planned (30 minutes and uneventful). Also, Nicholas received a Platelets transfusion.

SNOW, AND FEELING GREAT-THANK GOD
We settled in to an apartment (beautiful, warm, old Victorian 2-story) that is similar to the Ronald McDonald House called Brent's Place. As we were settling in it began to snow-slow, soft, pedals of snow. And better than that, Nicholas is having a great evening: eating, looking out at the snow, energetic, mobile, full of spirit... Amazingly, this is a huge difference from this morning, from yesterday, and from the overall weekend. Has the medicine had a positive impact already? The doctor expects a positive impact within 2 days. And God is God so we are so thankful for all that he provides.

April 24, 2006 Blood Counts:

WBC: 0.7
HGB: 11.1
PLTs: 21
ANC: 48
________________________________________
Sunday, April 23, 2006 10:02 PM CDT
PERSONAL INTRODUCTIONS AND DAYLIGHT DRIVE
This afternoon we personally met Dr. Gore and based on telephone conversations with her, the building of the relationship was as expected. She has a wonderful blend of communication with the patient, parent, medical, and possibilities in mind. It was an easy flowing convesation and she had a very good understanding about Nicholas.

We have been so blessed with our doctors from Children's Hospital Oakland, Lucile Packard Children's Hospital at Stanford, and The Children's Hospital at the Univesity of Colorado-Denver. Their collaboration and handling of the baton, so to speak without letting it go, has been comforting. We are reminded of the following that a friend shared with us: When a door seems to have closed, God opens a window! Words, yes, however, it is more than comforting to know that God is in control of Nicholas and His guidance provides the direction and manifestation of all that is true to His word. The light of Love is shinning everywhere within Nicholas exposing all of Nicholas to purity and perfection-God's creation.

NOT SNOW BUT...
After our meeting with Dr. Gore we were driving back to the hotel when we heard loud banging and clanking. We looked around and realized the noise was coming from above. It was hailing and the hail was about a 1/4 inch in diameter. Everywhere, the cars and ground became covered with the hail. It was actually a beautiful sight although there were people running to take cover.

After the hail stopped, we went for a drive around down (in the daylight this time) and really enjoyed the character of Denver in terms of the buildings, parks, and trails (that we could see).

TOMORROW (Monday)
Tomorrow morning at 9:00 we will be at the hospital for administrative stuff and preparation of this new treatment that will begin tomorrow as well. We expect to leave the hospital by 1:30. The rest of the every-weekday treatments are scheduled to take about two hours. Remember, no hospitalization is planned and this treatment can generate medical improvement within a couple of weeks.

Again, we trust and believe.

April 23, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Saturday, April 22, 2006 11:59 PM CDT
QUIET DAY, MIDNIGHT DRIVE
Nicholas and mom & dad slept most of the day-we were all very tired. It was a quiet day for us and in the evening as we looked over the city of Denver from our room the sunset provided us with quiet, calm, and peaceful moments. Our Marriott hotel suite (relationship with The Children's Hospital for families away from home) has a kitchen so we were able to eat when we needed to. (We stocked up on food last night after we checked into the hotel.)

We enticed Nicholas to get outside, up and about, by letting him know that we could take a drive around downtown Denver-and he could watch the rest of a movie that he was watching during our drive last night from the airport to the hotel. YES, was his response and like the lyrics, "This little light of mind, I'm going to let it shine, let it shine, let it shine, let it shine...," There was a bright light illuminating from Nicholas. And it sure brightened our hearts and souls to see the glow from him.

Off we went for a midnight drive that included links to a couple of Nicholas' passions. What do you think they were? ...Okay, 1) The Pepsi Center where professional basketball is played-home of the Denver Nuggets; and 2) The United States Mint-where money is made.

THANK YOU
Again and again, we know that we are blessed to also have YOU in our lives. Thank you for your thoughts, prayers, and guestbook messages. They truly help and the guestbook messages with us being so far from home maintains the feeling of closeness.

TRUST AND BELIEVE...

April 22, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Fr iday, April 21, 2006 11:59 PM CDT
NICHOLAS IS NOW IN DENVER
We had a very nice early evening flight and arrived in Denver at 8:05 PM MST (7:05 PM PST). Soaring above the clouds is always a wonderful feeling. Seeing the snow-covered mountain tops, evening lights starting to bring character to the ground below, and the sunset from the sky was just beautiful. Nicholas had a good time, imagine that (enjoying it all from his window seat)!

When we were on our way to the hotel Nicholas talked about this 6-week stay. He then began to cry, wanting to just be home. We talked and mommy found the right words to provide a level of comfort the soothed him. We are looking to break up each week with something special from different friends each week. Note: The 6-week plan is a two-hour (approximately) visit including half-hour outpatient treatment at the hospital everyday, except the weekends we will not have to go to the hospital at all.

While we are all tired, being with Nicholas and loving him so deeply every heartbeat and step of the way, mom & dad are engergized by the love within and around Nicholas. And that love was fully unleashed tonight as Nicholas was being Nicholas-playing and having fun in spite of it all.

WEEKEND CONVERSATION/VISIT WITH THE DENVER DOCTOR
Tomorrow (Saturday) or Sunday, Dr. Gore will meet with us and begin her relationship with Nicholas (as well as us). This weekend conversation/visit is a nice touch toward the acclimation to The Children's Hospital, University of Colorado.

April 21, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Thursday, April 20, 2006 11:59 PM CDT
(April 21, 6:30 AM PST)

GOOD DAY, GREAT NIGHT
Nicholas had a good day and a great night. The day was spent playing a little bit and then resting as he received a Red Blood Cells transfusion and Platelets transfusion before we left LPCH this evening. The night was full of smiles, laughter, and fun with friends (grown ups).

Mom & dad stayed up very, very late and into the morning light as we prepared for the 6-week trip to The Children's Hospital at the University of Colorado, Denver. (Please refer to the April 13 journal for more information.)

A SENSE OF CALM, PEACE, AS WE JOURNEY ON
Please remember with us:

"There is no spot where God is not!" From the depth of our being is God's truth that whatever is contrary to His love, has no place in Nicholas. God fills even hidden places (like Nicholas' bone marrow) with light, love. He exposes, reveals, and opens things up so that nothing can be hidden from His truth. Through it all, just look (deeply as well) and listen to Nicholas, amazingly he truly illuminates with rays of sunshine that warms your heart. His strength, energy, enthusiasm, joy, & endless passion for caring about others are testaments of Love. We pray for all of these beautiful kids and for this truth to be realized as they bless the lives of everyone around them.

We recently shared the following hymn through Nicholas' site and we want to share it again as we journey on:

Everlasting arms of Love
Are beneath, around, above;
God it is who bears us on,
His the arm we lean upon.

He our ever-present guide
Faithful is, whatever betide;
Gladly then we journey on,
With His arm to lean upon.

From earth's fears and vain alarms
Safe in His encircling arms,
He will keep us all the way,
God, our refuge, strength, and stay.

THANKFUL NOTE (late entry to the April 18 journal that you may have missed)
Corporate Angels is a nationwide network for corporations offering flights for patients in these kinds of situations when their corporate planes are flying to the same destination. Amazingly, a corporation-Granite Construction-paid for a round trip flight commercially. They did not have a plane going to Denver and some how, for some reason their CEO/President wanted to still help the Gilbert family. We do not know who he/she is or why us, as we understand this is something Corporate Angels administrators have not seen happen before-not even from really, really big companies.

What comes across our thoughts right now is that "it is not the size of your heart, it is simply amazing to have a loving heart." And our hearts our warmed knowing that people and companies do so much to help others in a variety of situations/ways-"giving (how ever you do) is loving." Not only did Granite Construction want to pay for the trip, they made it happen through their own corporate travel department. What a blessing and what true angels lovingly helping when no one is even looking (no publicity)-thank you Granite Construction.

April 20, 2006 Blood Counts:

WBC: 0.6
HGB: 8.9
PLTs: 45
ANC: 72
________________________________________
Wednesday, April 19, 2006 9:27 PM CDT
ONE MORE NIGHT AT LPCH
Nicholas had a couple fevers this morning and from 12:30 this afternoon to 8:30 tonight he did not have any fevers. However, at 8:30 he had a fever. Thankfully, no bacteria or virus have turned up. The doctors want us to stay one more night to ensure everything is okay and the revised plan is that we will go home tomorrow morning. Then, he will receive a 24-hour dose of antibiotics to cover him during Friday's trip to Denver.

A friend who visited us last night said, "Nicholas looks great-and if we did not know what was going on medically-one would never know..." Yes, and what we do know is God's love and there is no love deeper or care better!

DISNEYLAND VISIT AT LPCH
Nicholas woke up to two colorful surprises-Mickey and Minnie Mouse visited Nicholas. Nicholas "half-way jumped" out of bed, put his mask on and had a GREAT visit with Mickey and Minnie. Spontaneously, Minnie Mouse and Nicholas embraced for a very, very long period of time. And then it was Mickey and Nicholas. What a treat! Nicholas asked mom if she would write a note for him and he dictated, "Mickey and Minnie came to see me at the hospital; and I had lots of fun. I love Mickey and Minnie."

PAIN, WHAT PAIN
Well, Nicholas has not needed any pain medicine today and we will leave it at that..."There is no spot where God is not!"

ACTIVITIES TODAY
Dodgeball, basketball, painting, and other fun stuff with mom & dad and staff in Nicholas' room.

NICHOLAS' LIST
Today, Nicholas met with a LPCH social worker that has been with us every step of the way. In concert with the nurses and doctors, the social workers help in a variety of ways. This afternoon the social worker and Nicholas had an open, free-flowing conversation. Below is Nicholas' list from the conversation:

THINGS I WANT
-Super powers (being fire, really strong, stretch real far).
-To fly.
-Go to Disneyland and The Monterey Bay Aquarium (again).
-When things hurt, for mom & dad to fix it.
-I like it when mom rocks me.
-I like it when dad hugs me when I don't feel good.
-I want to play soccer in the sun.
...

HAPPY
-Playing with my toys.
-Drawing and painting pictures.
-Writing, board games, card games.
-Playing with friends.
-Easter egg hunting.

SAD
-I don't get sad that much.

THINGS I DO NOT WANT
-No more pokes (with needles) or shots.
-Green beans.
-Eggs.
-Sometimes I don't want to go to the hospital.

AS ALWAYS, GOD IS IN OUR LIVES (before us, behind us, on the side of us, and within us)
From the depth of our being is God's truth that whatever is contrary to His love, has no place in Nicholas. God fills even hidden places with light, love. He exposes, reveals, and opens things up so that nothing can be hidden from the truth. Through it all, just look and listen to Nicholas. Thank you, Lord!

April 19, 2006 Blood Counts:

WBC: 0.6
HGB: 9.9
PLTs: 64
ANC: 180
________________________________________
Tuesday, April 18, 2006 11:57 PM CDT
IN THE HOSPITAL AND PLANS UNFOLDING FOR DENVER
-Fevers off and on. However, you know Nicholas, thankfully he manages well through them in terms of not letting anything dim his spirit.

-Thankfully, so far the blood cultures to assess the fevers have come back negative (no virus or bacteria).

-Administration of Dilaudid is managing pain well. It is planned that we will go home with Dilaudid and another significant pain medicine. Because we feel it we will say it-God is really all that we need. Just like the thoughts of anything medically happening, pain medicine does not have control over Nicholas. God is God!

-We hope to be going home tomorrow evening because Nicholas wants to be home for a couple of days (although it would be just one and a half days) before we depart to The Children's Hospital at the University of Colorado in Denver.

-And we are on track to depart Friday evening for Denver. In the midst of all that is going on, the administration of pulling everything together to be away, get there, and have all the needs in place is a chore! Thankfully, the staff at the hosptials, the insurance companies, and other key places have been very caring and action oriented. (Our health insurance company has been very caring and personally attentive; and we have these feelings about them even though travel and lodging will not be covered because it is not a transplant. We say this because we can imagine the heartache families must have when they are faced with an array of challenges outside of the medical situations they face. We are blessed and we know it!)

Thankful Note: Corporate Angels is a nationwide network for corporations offering flights for patients in these kind of situations when their corporate planes are flying to the same destination. Amazingly, a corporation-Granite Construction-paid for a round trip flight commercially. They did not have a plane going to Denver and some how, for some reason their CEO/President wanted to still help the Gilbert family. We do not know who he/she is or why us, as we understand this is something Corporate Angels administrators have not seen happen before-not even from really, really big companies. What comes across our thoughts right now is that "it is not the size of your heart, it is simply amazing to have a loving heart." And our hearts our warmed knowing that people and companies do so much to help others in a variety of situations/ways-"giving (how ever you do) is loving." Not only did Granite Construction want to pay for the trip, they made it happen through their own corporate travel department. What a blessing and what true angels lovingly helping when no one is even looking (no publicity)-thank you Granite Construction.

-Visits, lots of them today, were great representatives for "all of you." Our hearts are warmed by the continuous love and amazing friendships. And we were so comforted and lovingly touched by the Tsern family who brought dinner tonight (Nicholas' favorite-Japanese food) even though they are navigating through "leukemia and bone marrow stuff" with their beautiful son, Matthew.

-Uno king! When Nicholas found out that I was going upstairs at LPCH to write this journal, he asked, "Dad, will you write that Nicholas is the best Uno king in the world? If anyone wants a match, ask them to come on!"

Not just words: trust and believe, trust and believe, loving God through it all, we trust and believe.

April 18, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Monday, April 17, 2006 11:59 PM CDT
VERY ROUGH SUNDAY NIGHT AND FEVER HAS NICHOLAS IN THE HOSPITAL
Last night was extremely rough for Nicholas as he just could not rest or sleep at all. He said it was the worst night of his life-and we held him tight, expressed and demonstrated our love, prayed with him, played Christian-music-for-kids (that we all enjoy) through out the rest of the night, and prayed, prayed, prayed. Morning seemingly came so quickly. We cannot imagine how we would have made it through the night without praying. Because God is omnipresent, simply put, "there is no spot where God is not" and trusting His omnipotence we believe-in fact-that His omniscience will deliver Nicholas free from anything contrary to purity and love.

During the clinic appointment this morning Nicholas had a fever. The standard medical process for a fever in these cases is a minimum 48-hour hospital stay for antibiotics and action to eliminate any virus or bacteria.

Understandably, Nicholas was not happy about the hospital stay. However, Nicholas being Nicholas, this evening his spirit shined through "it all" and his love touched our hearts. We were amazed once again! How does Nicholas go through all that he does and come through with a smile? We wonder how does he continually demonstrate caring about others during and after these times? And we know, we know that it is God who has never left Nicholas for a moment. Who has never, not heard our thoughts, our pleas, and our prayers. It is God enabling us to navigate through these trials & tribulations because they have no power over Him.

Frightened and as hard as these trials & tribulations seem to be, "WE WALK WITH GOD ALONG THE WAY" and trust they will continue to be JOYFUL, DOMINION DAYS. We believe in love and the promises that God has made!

April 17, 2006 Blood Counts:

WBC: 0.9
HGB: 12.4
PLTs: 11-Because of this low number, a Platelets transfusion was given this evening
ANC: 230
________________________________________
Sunday, April 16, 2006 11:59 PM CDT
ROUGH NIGHT, ROUGH DAY, AND MOMENTS OF JOY SHINED THROUGH
Nicholas had warm, loving visits over the weekend and joyful moments. And, last night and today were rough for Nicholas. It has been more emotionally and physically draining for mom & dad and like the sparks igniting Nicholas' spirit enabling him to reveal his love for God, people, and joyful playing, mom & dad call on God to continually ignite our ability to lovingly comfort, support, and "be with" Nicholas as he needs-as we all need, rejoicing His love and healing touch upon Nicholas.

We know God hears our pleas as we pray, "Dear lord hear our pleas, removing suffering from any part of which it does not belong-which is to remove ALL and ANYTHING contrary to You, as well as any suffering from Nicholas because he is your child, Lord. You are who he needs RIGHT NOW!" There is no spot where God is not! These are words AND they are the "actions" of God and we plead for His words to not return to Him void, trusting that God does not have to be asked to be God-He is God.

Early evening, Nicholas and mom & dad were cozily bundled up swinging on the bench-swing on the patio as the nearby waterfall was roaring, birds chirping, wind gently blowing, clouds slowly sailing, and soft Hawaiian music playing.

The Hawaiian CD playing was one of our favorites when we are swimming in the pool; and it has a song titled, "Dolphin" which is so soothing. Following are some of the lyrics:

Oh Dolphin, tell me what you see out in the ocean.
Oh Dolphin, are you really free or is it your motion?
Take me away from here to some cool tropical isle
Leave all your doubts and fear, won't you please help me to smile?

Oh Dolphin, following the wind like a companion.
Oh Dolphin, dancing in the deep blue water canyon.
Rising out of the sea you fly flashing a smile at the sun.
Sing a sad lullaby before your having to run…

KNOWING WE WALK WITH OUR LOVING GOD-PROVIDER AND PROTECTOR
Below are words we have spoke about often, that have reassured us along Nicholas' journey. And it is not just about the words, it is about knowing, trusting, and seeing God's perfect work through and in Nicholas-AND praying and believing God's love for all of these kids is all that all of these kids need and have.

"I walk with God along the way, and oh, it is a joyful-dominion day. No more I suffer cruel fear, I feel God's presence with me here. The joy that none (and nothing) can take away is mine, I walk with God today."

"Green pastures are before me, which yet I have not seen. Bright skies will soon be over me, where darkest clouds have been. My hope I cannot measure, my path in life is free. My Father has my treasure, and He will walk with me."

TOMORROW (Monday)
Early tomorrow morning we will be at LPCH for lab work and possible Platelets and Red Blood Cells transfusions. Tomorrow and everyday we walk with God, trusting His love and His omnipotence, omnipresence, and omniscience.

PLEASE CLICK ON View Photos FOR A SNAPSHOT OF NICHOLAS' WEEKEND

April 16, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Saturday, April 15, 2006 11:59 PM CDT
A LOVING EASTER
We wish you a happy Easter! Easter is a wonderful time of year for many kids and families; and it is a wonderful time of year for Nicholas and our family for several reasons. One, the reminder of God's omnipotence, omnipresence, and omniscience. Two, we pray for God's continued manifestation of love and spirit throughout Nicholas in seemingly dark hours as we feel His presence and see love & spirit operating in Nicholas. We are blessed with Nicholas' smiles and love that have shown us so much more about God, love, and spirit. Three, it is the time of year for our other three son's birthdays: April 14, 18, and 19.

Our family received, from AAA-people & performance, an incredibly colorful, fragrant bouquet of roses that warmly brought about a refreshing sense over our thoughts. And they sent an Easter bunny from the Build-A-Bear Workshop that is so soft & cuddly-we cannot wait to see & hear Nicholas' expressions Sunday morning. We speak about blessings often, thankfully because we have been blessed so often in so many ways.

And AAA has been an amazing employer transcending "values" into action through its way of being as an organization even when "no one" is looking. The people, from all facets of the organization, with their love have cared for our family every step of Nicholas' journey-what an amazing blessing through our times of piercing heartache to be so loved by what people do (it is easy to say one is a caring organization, it is love for why one exists to be a caring organization). Thankfully, we have also seen this type of love from an organization shine on Nicholas and our family from Nicholas' Montessori school and the Golden State Warriors basketball organization from day one of this journey!

NICE DAY (Saturday)
Saturday was quiet in terms of action; however, love continues to shower on Nicholas from everywhere. From morning to night there were visits from a friend we met at Children's Hospital-Oakland, short-time family friends, & long-time family friends.

LAST NIGHT (Friday)
Nicholas had a rough night trying to sleep and mom was up throughout the night comforting him. Our son, this little boy, needs God's help. We know that Nicholas continues to receive blessings of love-and we lovingly pray, asking for our little boy to not only know he is loved, completely feel and see love manifested in him enabling him to be free of pain and any disease because they do not have any place in him. Our thoughts of love are aligned recognizing God's omnipotence, omnipresence, and omniscience.

April 15, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Friday, April 14, 2006 11:59 PM CDT
ANOTHER GREAT DAY
Nicholas had another great day: Easter egg hunt in the back yard with grandparents; swinging on swings; telephone call from his former school class (the kids sang "Happy Easter to you..." and the teacher engaged Nicholas with a variety of interactive learning over the phone); visit by his teacher including a movie, "It's The Easter Beagle, Charlie Brown;" visit by friends included lots of games and kids being kids at play; and visit by a long-time family friend.

The picture above as well as the three pictures seen by CLICKING on View Photos provide segments of the day and last night: My granddad and me, …swinging and having fun, simple pleasures generate happiness.

GRATEFULLY RECEIVING LOVE
Along with being all that we can for God and Nicholas, we try very hard to do the small things that we can for our older sons, and the loving way we can for all of you. Love is the lens that we look through and we know we are blessed to have love infused in our lives because of all of you through your thoughts, prayers, guest book entries, and visits.

We see every moment of love as a blessing-nothing is taken for granted as we more than appreciate the way you continually show up in our lives. And the way Nicholas continues to… "playing and having fun" are beautiful gifts every moment. You help fuel our fire to continually strive to be all that we can and this, too, is a blessing from God.

GETTING READY FOR DENVER
We have contacted various agencies like the Corporate Angels Network and Angel Flight for a private flight (with their connections communications have gone out to many pilots) and are doing all the things needed for a 6-week trip although all that is really needed is getting Nicholas there.

Another segment of Nicholas' journey with God directing our path!

April 14, 2006 Blood Counts:

WBC: 0.6
HGB: 12.4
PLTs: 54
ANC: 186
________________________________________
Thursday, April 13, 2006 9:48 PM CDT
WE ARE HEADING EAST
The consultation with The Children's Hospital at the University of Colorado, Denver went very well in terms of the conversation about Nicholas. The drug in this experimental protocol is Forodesine and it does offer a medical hope when there was no more medical hope! We are making arrangements to leave the Bay Area for Denver next Friday, April 21. The treatment will start April 24 with IV infusion of Forodesine, Monday-Friday, via their Outpatient Clinic. We will be in Denver for the 6-week course; then we will return to the Bay Area for follow up treatment at LPCH. (Once again, the collaboration shown by multiple hospitals revealed the main focus-these wonderful kids.)

It is an experimental protocol offering therapeutic and other potential benefits that could medically steer Nicholas toward a medical cure. And it appears to be tolerable, minimum side effects. As we always pray, we listen for God's voice, His direction. With trusting and believing it is God we lean on and God we will follow. We trust His shielding of Nicholas and believe that because of His love for Nicholas (and all of these wonderful kids), we are guided toward making the right decisions. Continually, we also ask God for His guiding of the doctors' minds and hands… God is all that we need and He has been "a very present help" throughout this journey-we see it and sense it in Nicholas!

NICHOLAS HAD A GREAT DAY
Thankfully, we get to keep saying that Nicholas looks great and is doing great. His energy was truly amazing all day long, not congruent with the medical news-praise God. Nicholas loves the sunshine so he was thrilled with the weather, playing outside for the better part of the day. He searched for a variety of nature-things on the back patio/yard and in the front yard; played airplane on the tower of his play structure, "taking mom to Disneyland;" painted on his easel outside; and even took a short spin on his bike. He and mom then played on the front bench under the olive tree, making up games with olive seeds.

The sounds of a child at play are so beautiful!

April 13, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Wednesday, April 12, 2006 11:59 PM CDT
"THROUGH IT ALL" NICHOLAS HAD A GOOD DAY
Yes, through everything going on we are so happy to say that Nicholas had a very good day. He was very active with lots of energy and full of spirit: running around, playing with neighbors who visited after they arrived home from school, and a short visit from other friends this evening. If you did not know what was medically going on, you would not know that something medically is "thought" to be going on-and we are so happy to see & and say that God, Spirit & Love, manifesting within and around Nicholas is in control so the medical aspect of things amazingly HAVE to take a "back seat." The medical aspect is what it is, and God is who He is!

We are holding on, trusting & believing, as the continuance of miracles that we see are revealing love and happiness in Nicholas' life. We do not know what "tomorrow" will bring, however, God in Nicholas' life continues to bring love, joy, spirit...and today like the rest of OUR lives trusting, believing, and being better in so many ways each day reveals love in many ways.

TELEPHONE CALL OF HOPE
While the medical development of everything culminated into the doctors not having anything medically left to cure Nicholas, following up on some new research, shortly before noon we received a call from Nicholas' LPCH doctor about a potential protocol that is new (phase 1 treatment). Our LPCH doctor talked about Nicholas with a lead doctor of this protocol at The Children's Hospital, University of Colorado at Denver and the doctor believes that the protocol may offer therapeutic and other benefits to Nicholas. While we have some research information discovered over the last week we do not at all have comprehensive medical information on this protocol. Tomorrow (Thursday) we will have a telephone consultation to determine if this protocol is something for Nicholas-a medical hope when there was not a medical hope.

We are praying, listening, and "following" our hearts & minds as we continually ask and know that God is who we need... Trusting and believing, we will follow... And happily, Nicholas is smiling, playing, learning, loving...

April 12, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Tuesday, April 11, 2006 11:59 PM CDT
THE NOW WHAT THAT HAS ALWAYS BEEN THE NOW WHAT
We have been so blessed to "see" what we have continually seen in Nicholas-our little sunshine constantly revealing the "twinkle" in his eyes, the "love" from his smiles, and "passion" for caring about others. And we are so blessed to continually see these blessings now.

The "now what" medically does not offer Nicholas what he needs. So now, thinking back several months ago there was a period of time Nicholas was not feeling like himself and he asked, "Why doesn't God give me what I need?" We, too, have asked this question in our prayers-down on our knees crying as well as upright stretching, reaching out to God. This was/is a difficult question to answer and with Nicholas we have talked about all the things that God HAS given us along this journey. And with so many thanks we do still pray asking God for the healing Nicholas so deserves. We know that all the things we continue to receive are, truly, blessings enriching our lives in ways we have not even thought about. And, we do know the type of answer-healing-that Nicholas is looking for (that we are looking for). We just do not know the answer in terms of the medical healing.

However, WE DO KNOW GOD AND HE IS THE ANSWER. We trust and believe this to be true-it is His word and we pray, pray, pray trusting and believing that it will not return to God void. Faithfully we trust and lean on God and as hard as "all of this leukemia and bone marrow stuff" is we do feel God's love and His presence.

Thank you for staying with us and all of our rejoicing to date, and all of our rejoicing in "all of our tomorrows!"

WHAT WE NEED FROM YOU!
Following are two songs we have previously shared on this CaringBridge site and we ask that in addition to your continually praying and thinking about Nicholas as well as believing, you once again refer to these two songs that are in our hearts.

:) HE'S MY SON
(If you would like to hear the song, please place the following in browser window: http://hometown.aol.com/sunnyasalways/SUNNYSHESMYSON.html")

Down on my knees again tonight,
Hoping' this prayer will turn out right
See, there is a boy that needs Your help
I've done all that I can do myself

His mother is tired,
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through,
But God, who he needs right now is You

Let him grow old,
Live life without this fear
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how
See, he's not just anyone,
He's my son

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow.
See, he's not just anyone

Can You hear me?
Can You see him?
Please don't leave him,
He's my son

:) HOLD ON
(If you would like to hear the music and see the words at the same time, please place the following in browser window: http://www.inspiringthots.net/movie/hold-on.php)

Hold on tightly to what is truly important in life.
Hold on to faith, it is the source of believing that all things are possible.
It is the fiber and strength of a confident soul.

Hope
Hold on to hope,
It banishes doubt and enables attitudes to be positive and cheerful.

Trust
Hold on to trust;
It is at the core of fruitful relationships that are secure and content.

Love
Hold on to love;
It is life's greatest gift of all, for it shares, cares, and gives meaning to life.

Family
Hold on to family;
They are your roots and the beginnings that you grew from;
They are the vine that has grown through time to nourish you, help you on your way, and always remain close by

Friends
Hold on to friends;
They are the most important people in your life, and they make the world a better place.

Yourself
Hold on to all that you are and all that you have learned,
For these things are what makes you unique.
Don't ignore what you feel and what you believe is right and important;
Your heart has a way of speaking louder than your mind.

Dreams
Hold on to your dreams;
Achieve them diligently and honestly.
Never take the easy way or surrender to deceit.

Room for Others
Remember others on your way and take time to care for their needs.
Enjoy the beauty around you.
Have the courage to see things differently and clearly.

Contribute
Make the world a better place one day at a time.
And don't let go of the important things that give meaning to your life.

Hold on to these things!

LOVE CONTINUES
We confess the Word of God abides in Nicholas and delivers to him perfect soundness of mind and wholeness in his nature, in his immortal spirit, even to the joints and marrow of his bones. God's Word is medication and life to Nicholas' flesh, for the law of the Spirit of life operates in Nicholas. Love is operating in Nicholas as we have continually seen Nicholas being Nicholas-illuminating with rays of sunshine that warms your heart; his strength, energy, enthusiasm, joy, & endless passion for caring about others are amazing.

Thanks for "holding on" with Nicholas, mom & dad, and our other three boys. Please hold on to God and PRAY with us as we hold on to God; and through God hold on to Nicholas, hope, trust, love, family, friends, ourselves, dreams, room for others, and contributing (you contribute so much in our lives-thank you).

April 11, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Monday, April 10, 2006 11:59 PM CDT
FAMILY, FRIENDS, FUN
Today was ANOTHER GOOD DAY. Nicholas had fun playing kickball in the yard and talking to our neighbors. He enjoyed swinging on his swings with family friend, Allie, and along with mom spending time with Allie and her mother. "Ahh, this is the life!" is what Nicholas said to mom tonight as they were reading together and he had a cool sip of ice water. It was "icing on the cake" to hear that tonight because a late-afternoon short drive that included talks about basketball and the fun & learning experienced on the court together as well as a drive by the little league ballpark (Buckeye Fields) where someday he will be playing was a prelude to this is the life. And the good day continued into the night as former Ronald McDonald House mate, Kaeli (and her mother and brother) spent the evening with us. What another blessing to have developed a family relationship that extends beyond all the medical stuff and into Love.

TRANSFUSIONS TOMORROW (Tuesday)
Tomorrow we will be at LPCH for Red Blood Cell (reference HGB) and Platelets transfusions. We will also talk with Nicholas' bone marrow transplant (BMT) doctor who has worked in concert with the oncologist. We feel so fortunate to have always had doctors who seemingly "work for Nicholas" and the BMT doctor who has a warm, wonderful, perceptive way of engaging with mom & dad as well.

NOTE: Please click on View Photos to see Nicholas and his cake (unless you have already seen the cake photos via the third photo album below).

***For "Now What," please refer to the April 7 journal***

April 10, 2006 Blood Counts:

WBC: 0.7
HGB: 8.8
PLTs: 18
ANC: 224
________________________________________
Sunday, April 9, 2006 11:59 PM CDT
GOOD DAY
Nicholas had a good day doing "homework;" playing, using his computer to help with learning more about numbers and words; and lots of fun cutting, eating, and playing around as we celebrated his one-year post bone marrow transplant. PICTURES of his cake and celebration-smiles will be posted to this site tomorrow night (they are already posted, at the end, onto the third album below under Links).

Looking at Nicholas we smile with thanks and admiration for his amazing spirit continually shinning through-seemingly reminding us to "look" at him and not any numbers. God's loving touch comes through in ways we do not always understand; yet His touch comes through and we pray for help toward continued learning and understanding.

TOMORROW (Monday)
Tomorrow morning we will do blood draws at home, deliver to a laboratory in Lafayette to process, and they will deliver the analysis to LPCH by mid-afternoon. Results will determine if we take Nicholas to LPCH Day Hospital Tuesday for blood transfusions (amazingly, here too, Nicholas is doing just fine so we can not tell if any transfusions are needed). NOTE: Our adventure for miniature golfing and Expedition-picnic will take place sometime in the next couple of days because, simply, Nicholas was "playing and having fun" at home today.

***For "Now What," please refer to the April 7 journal***

April 9, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Saturday, April 8, 2006 11:59 PM CDT
A YEAR LATER
It was a year ago late last night, early this morning that Nicholas had his bone marrow transplant (BMT). God, we pray, bless the donor and other donors as well as those who lend a hand as best they can. Tonight mom baked a cake for Nicholas-he asked, "Can I have a cake for my special day? And can you put Easter eggs on it?" Mom had already planned a cake and other special things for Nicholas' special day. Nicholas sure loved getting a whiff of cake as it was being baked and mom decorated it with hand-designed Easter eggs using Easter colors (gel and snowflake sprinkles).

SURPRISED TREATS (other than eating)
Nicholas woke up to a visit by his teacher, Ms. Shirley. She brought an array of books for Nicholas and he picked one out for her to read as his day began. His grandparents, an aunt, and a cousin then surprised him with their visit. Just like yesterday when another aunt and uncle visited, Nicholas continually feels the love coming his way near and far.

AFTERNOON OUTSIDE SOAKING IN FRESH AIR AND…WELL NOT RAIN
In addition to the picture above seeing Nicholas enjoying outdoors, please CLICK ON View Photos to see his smile and a grin while outdoors today, and his lively spirit full of energy and enthusiasm this past Thursday right before we left LPCH. Thankfully, last Thursday his spirit and actions were not congruent with the medical news and for this we praise God for Nicholas' way of navigating through it all.

TOMORROW
Nicholas wants to go miniature golfing and have a picnic in the Expedition-probably somewhere near water because this is something he really enjoys (it is like miniature camping: nature/scenery, food, different types of fun, reading, togetherness…)

NICHOLAS, MOM & DAD, AND HIS BROTHERS
Well, all of this is just so, so hard. All of us wish we could trade places with Nicholas although we know that cannot be done. Nicholas, a son, a brother, and a special person in your lives too, is in all of our lives and we give earth-shattering thanks for the blessings we continue to see. And understanding more and more about God's love for Nicholas and His healing arms, our minds are guided toward calmness and peace. Nicholas is loved!

Everlasting arms of Love
Are beneath, around, above;
God it is who bears us on,
His the arm we lean upon.

He our ever-present guide
Faithful is, whatever betide;
Gladly then we journey on,
With His arm to lean upon.

From earth's fears and vain alarms
Safe in His encircling arms,
He will keep us all the way,
God, our refuge, strength, and stay.

- Hymn based on the work of John R. Macduff (nineteenth-century Scottish preacher)

***For "Now What," please refer to the April 7 journal***

April 8, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Friday, April 7, 2006 10:56 PM CDT
THE DAY AFTER "YESTERDAY" AND LOVE IS LOVE
The day after yesterday does not bring about change in our hearts, minds, or souls as the "truth" about Nicholas continues. The truth is the amazing shinning light that continues to illuminate from Nicholas in many ways-through his eyes, smile, and loving nature that has astonished us throughout… The truth will always be that God loves Nicholas and we are so blessed to know that God is the same yesterday, today, and "tomorrow"-loving, protecting, shielding, guiding…Nicholas. This fight is awfully terrible and as hard as it is we cannot give in to anything contrary to the "truth." We do not know what to expect except God's love. Healing is going on!

NOW WHAT
-With Nicholas' blood counts being low, we are passionately praying for the spirit and love of God to do what it does: shield Nicholas from infection and fever helping to keep Nicholas out of the hospital over the next 10 days

-The doctors, we pray that with God's guiding of their minds and hands, are researching for novel-tolerable chemotherapy to generate the change in the marrow that Nicholas so deserves. The expectation is that on April 17 Nicholas will be back at the hospital to begin treatment determined from the research

-Next Tuesday, April 11, we will further talk with the doctors about the next medical steps

-And the "now what" now and always has to be keeping everything turned over to God and following Him. As hard as it is fighting this fight we trust God because you know how much we love Nicholas and we know that as much as we love… God loves Nicholas immeasurably more so Nicholas is in the right hands

NICHOLAS
Nicholas had a slow start to his day in terms of energy level-recouping from yesterday's procedures. However, you know Nicholas, his light always has shined through…and this evening he perked up and was beaming with enthusiasm.

April 7, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Thursday, April 6, 2006 8:50 PM CDT
NOT GOOD NEWS-WE ARE CRYING OUT TO GOD THAT WE TRUST AND NEED HIM
Late this afternoon we met with the doctors and discussed the results of this morning's bone marrow aspirate-it is not good news. The doctors report the marrow is 90percent leukemia. From day one we have focused on God seeing the love, smiles, and laughter from Nicholas because of Him. Throughout everything Nicholas has faced there has never been any reason to not focus on God. So while the medical news is not good at all, we will maintain our focus on Him, His never-ending and unchanging love for Nicholas, and that He is what we need.

Our thoughts, our prayers, our heart-aching cries call out admitting that what we need is God and we trust Him to continually be right there in and around Nicholas. The medical news is just that, medical news and nothing is congruent with God except love, purity, and perfection. We have seen God's work within Nicholas-you have seen the smiles and Nicholas' way of navigating through what he has faced. There is no reason for that to stop now! We know that all things are possible with God and love is guaranteed with God. So we trust, we believe, and we fight following God as we pray out loudly, yet so lovingly, crying that what we need is Him.

AND THE GOOD NEWS
Along with knowing God loves Nicholas, there was more truth about God's love today. Nicholas not only looks great, he is really feeling great. Other than waking up in the recovery room, very early this morning and this afternoon he was "playing and having fun." In fact, the doctors even marveled at how well he looks and his amazing spirit..."playing and having fun." We thank God for this amazing blessing: Nicholas not being congruent with the medical news! Thank you, Lord!
________________________________________
Wednesday, April 5, 2006 10:43 PM CDT
PRAYING...BONE MARROW ASPIRATE TOMORROW (Thursday)
Tomorrow morning at 7:30 another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Naturally we are praying for complete healing (free of any leukemia) realizing God's omnipotence, omniscience, and omnipresence. We are praying so very hard for the continuance of the miracles we have seen in Nicholas and for all the glory to God; for Nicholas to continue to feel and know that he is loved; and for Nicholas to feel and know that he is comforted because of God, mom & dad, and all of you.

We are praying for the marrow to express the love that is flowing freely throughout & around Nicholas and nothing contrary to love, purity, and perfection has a place within Nicholas because God's word is His word. We ask these things recognizing that it is not our will that will be done, it is Love that reigns over Nicholas and love begets love.

Have you seen the love that we have seen in operation? Have you seen the sparkle in Nicholas' eyes? Have you sensed the caring and loving that Nicholas continues to express, even when he has faced some terribly-awful challenges? Our little sunshine "rains" amazing love in our lives and mom & dad really hope that you see it, you have felt it, and that you stay with us in prayer and truth. We love the way that you are with Nicholas as well as with us. We lovingly call out and pray, "Oh Father...we love the way that You are with Nicholas and recognize that is so natural for Your love of Nicholas to lovingly see him through all that he faces, destroying anything contrary to You in his way." There is no spot where God is not!

FEVER THIS AFTERNOON AND NO FEVER LATE AFTERNOON
This afternoon Nicholas spiked a fever and by late afternoon he was free of fever. We do not know why he spiked a fever, however, we are so grateful that a few hours later Nicholas was without fever.

Amazingly, you would not even know that he spiked a fever because there were no other signs or symptoms other than than the thermometer. Nicholas was actively playing and learning with "Books-A-Live" and so lively that his energy was pouring over to those around him. With Nicholas, with God, we have learned over and over to only trust what we know-God-because nothing else sheds light on love and reflects love. Seemingly, this is what Nicholas does because "you would not even know that the thermometer was saying he had a fever!"

WHAT WE DO KNOW AND HOW WE SEE THINGS
While we do not know why medically things have shown up, we do know that God has always shown up and in Him we are loved, comforted, directed, guided, and we follow. With Him Nicholas, and mom & dad, cannot slide off the "slippery road" or be thrown from the "roller coaster" we have talked about during this journey. We are so glad that these are not just words of hope-they are testaments "of" God's love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the key medical information.)

NOTE: You know that Nicholas likes to write (along with so many other loves) and the interesting thing about his latest writing is that the sheet of paper is blank. However, throughout the days and under certain situations Nicholas pulls out the sheet of paper and "reads," saying, "The contract says..." And the remaining words generally are words that benefit him and are instructions for us. Words like, "The contract says you have to play Uno with me" or "... you have to give me all of your change." What we love about the contract is that "we get to play games with Nicholas, we get to spend time with Nicholas, we get to love Nicholas, we get to..." And we love it all because he deserves it all and "we get to..."

April 5, 2006 Blood Counts:

WBC: 0.8
HGB: 10.4
PLTs: 78
ANC: 224
________________________________________
Tuesday, April 4, 2006 10:52 PM CDT
***PLEASE SEE THE SPECIAL NOTE BELOW***

TODAY WAS A GOOD DAY
Nicholas continues to be without fever and we are so thankful. However, his left jaw has been sore and we are reminded that "there is no spot where God is not."

Nicholas received both transfusions (Platelets and RBC) very early this morning and they finished about 4:45 AM. Generally, he sleeps through transfusions but not last night so this afternoon he had a very relaxing nap. Thankfully, overall, today was a good day!

And tonight is turning out to be a good night: talking, playing, and just being together...helps to make good days and nights.

We continue to turn everything over to God, trusting His words and love. All the beautiful signs of love flowing within and around Nicholas over the months as all of us have directly or indirectly witnessed cannot be temporary, because Love is the same yesterday, today, and all of our (and your) tomorrows. It doesn't change except to be realized more and more each day-in greater ways!

***SPECIAL NOTE***
Early Thursday morning another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Naturally we are praying for complete healing realizing God's omnipotence, omniscience, and omnipresence. We are praying so very hard for the continuance of the miracles we have seen in Nicholas and for all the glory to God; for Nicholas to continue to feel and know that he is loved; and for Nicholas to feel and know that he is comforted because of God, mom & dad, and all of you.

We are praying for the marrow to express the love that is flowing freely throughout & around Nicholas and nothing contrary to love, purity, and perfection has a place within Nicholas because God's word is His word. We ask these things recognizing that it is not our will that will be done, it is Love that reigns over Nicholas and love begets love.

Have you seen the love that we have seen in operation? Have you seen the sparkle in Nicholas' eyes? Have you sensed the caring and loving that Nicholas continues to express, even when he has faced some terribly-awful challenges? Our little sunshine "rains" amazing love in our lives and mom & dad really hope that you see it, you have felt it, and that you stay with us in prayer and truth. We love the way that you are with Nicholas as well as with us. We lovingly call out and pray, "Oh Father...we love the way that You are with Nicholas and recognize that is so natural for Your love of Nicholas to lovingly see him through all that he faces, destroying anything contrary to You in his way." There is no spot where God is not!

Please refer to the March 1, 2006 and January 18, 2006 journals for the key medical information.

April 4, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Monday, April 3, 2006 11:59 PM CDT
UPDATE #2

NO MORE FEVER
This afternoon's fever has gone away. Although there were two more readings of a fever early evening and tonight, at 11:45pm Nicholas was without fever. Yes! Naturally, we pray that Nicholas stays free of having another fever and with our prayers we think and keep the truth (as stated below) as the lens for seeing everything in and around Nicholas.

The Platelets and RBC transfusions will take place just after midnight (Tuesday morning).

NICHOLAS CONTINUES TO AMAZE-THANK YOU LORD
You can imagine Nicholas' feelings when we told him that we were going back to the hospital. Naturally he cried, and he raised his arms up for us to hold him as we prayed. We have said so many times that Nicholas does everything right...loving, caring, praying, sensing, cooperating... It is really hard to, well it is just really hard emotionally and physically for mom & dad. And we feel that it must be so, so, so much harder for Nicholas. And then, we watch Nicholas get through what he has to face with complete trust and love (although some times he says it is hard to trust what we say during some pretty rough times that he faces).

Yes, Nicholas had smiles tonight while playing and he did have more tears as well. As hard as it all is, keeping the truth as the only lens for Nicholas' path is what we continually realize in our prayers and our thanks. Like the smiles tonight, the truth of God's love provides what we need.

Note: With the bone marrow aspirate scheduled for Thursday, it appears that we will be in the hospital until Thursday afternoon.

UPDATE #1 5:28 PM CDT

BACK IN THE HOSPITAL
This afternoon Nicholas had a fever and right afterwards the hospital called regarding this morning's blood draw: Platelets and Hemoglobin are low so a Platelets & Red Blood Cell (RBC) transfusion are needed.

We are on our way to LPCH and will be admitted onto 2N (where Nicholas has always been when at LPCH).

We KNOW THE TRUTH through God: Nicholas is the picture, heart, soul, EVERYTHING of purity and perfection. NOTHING has power over God and His love for Nicholas. We have seen His love manifest wonders-as it always does-throughout Nicholas and pray the continued manifestation of purity does just what God is-everything good, everywhere.

April 3, 2006 Blood Counts:

WBC: 0.7
HGB: 7.0
PLTs: 7
ANC: 168
________________________________________
Sunday, April 2, 2006 11:59 PM CDT
QUIET, NICE DAY
Today was a very relaxing day for all of us; and it was an uneventful medical day (just the way we like it of course).

Loving, trusting, believing, and witnessing God's loving touch in and around Nicholas...

NEXT STEPS
1. Blood drawn at home Monday & Wednesday and delivered to a local lab to process (it will be so nice to not have to make the early morning trips to LPCH)

2. Blood counts to recover from the chemotherapy that ended March 6

3. Bone Marrow Aspirate scheduled for Thursday (April 6) to check the status of the bone marrow. Praying for complete healing realizing God's omnipotence, omniscience, and omnipresence.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative medical information.)

April 2, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA
________________________________________
Saturday, April 1, 2006 10:31 PM CST
CAUTIOUS DAY
This morning was quiet and cozy. However, this afternoon and evening was cautious because Nicholas' temperature reading was borderline "fever." We were comforted through prayer and comforted because by late evening, without any fever medicine administered, there was no fever-"Thank You Jesus!" were Nicholas' words. We did talk with the doctors this afternoon, AND prayed to our Father throughout the day.

BLANKET FROM PROJECT LINUS
Project Linus is a 100percent volunteer non-profit organization and their mission is to provide love, a sense of security, warmth and comfort to children through the gifts of NEW HOMEMADE WASHABLE blankets that are lovingly created by volunteer blanketeers. Although it is a gift from Project Linus, we found out that Project Linus received a request from a friend in Germany to have it made for Nicholas. Do you see the dolphin on the blanket above? It was the first thing we noticed (remember, Nicholas loves dolphins).

WITH THE RAIN CAME SOME NICE SURPRISES FOR NICHOLAS (AND MOM)
For mom & dad, this journey is one of thanks for many blessings that Nicholas (and we) have realized from the beginning. Blessings of love from the miracles we continue to see blossom in and around Nicholas, blessings all of you provide via your prayers and presence on this CaringBridge site, and the love shared by us all. We say this because God and love is what we need for the blessings we have seen and pray to continually see.

So the unexpected nice surprises that warmly rained on us from friends "near and far" over the last few days were:

-Money sent to Nicholas that had been collected from all over the world (remember, Nicholas really, really loves to earn, collect, and share money)

-A Prayer Box bracelet mom received generating from a "thought" from another amazing friend

-The private suite for the Golden State Warriors' game last night

-And as always, all of you continually staying with Nicholas (and mom & dad) in the ways that you do-we know that we are blessed and we thank you so much for your love

April 1, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

Friday, March 31, 2006 11:59 PM CST

FUN WITH FRIENDS AND FAMILY, THANKS TO A FRIEND
Nicholas had a great time tonight at the Golden State Warriors' basketball game; and after the game he really enjoyed the NBA Entertainment League Celebrity Charity basketball game featuring lots of stars (see below). A private suite enabled us to control the environment and allowed everyone to freely enjoy each other and the games.

FOLLOWING ARE SOME OF THE CELEBRITIES WHO PLAYED TONIGHT:
-Frankie Muniz, of the TV show "Malcom In The Middle," and the star of the "Agent Cody Banks" movies...

-Matthew Lillard, who played Shaggy in the "Scooby Doo" movies...

-Ice Cube, the star of the movie "Are We There Yet" and the series of movies: "Friday," "Next Friday," and "Friday After Next"...

-Dean Cain, who played Superman in the TV series "Lois and Clark"...

-Morris Chestnut, one of the stars in the movie "The Best Man," "The Brothers," and "Like Mike"...

-Terry Crews, who was one of the stars in the movie "White Chicks," "Friday After Next"...

-Sugar Shane Mosley, former boxing champion

NICHOLAS HAD A VERY NICE DAY
At the end of the evening (midnight) we prayed and gave thanks for another wonderful day loving God, trusting, and believing because each day Love is providing more love and more reasons to be thankful.

March 31, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 

 


Thursday, March 30, 2006 10:50 PM CST

CLINIC APPOINTMENT WENT JUST FINE
Early morning we were back at LPCH for lab work and examination. Nicholas looks so good and Love is shinning through; the appointment went well. The bone marrow aspirate (BMA) will be performed next Thursday instead of this coming Monday or Tuesday. And Nicholas will not be back at LPCH until then as we will draw labs at home on Monday & Wednesday and deliver to a lab in Lafayette to process (results will be faxed to LPCH and us).

TODAY WENT JUST RIGHT
On the way home from the appointment we stopped at the Lafayette reservoir to simply gaze out, feeling the sprinkles softly falling onto our faces and the wind gently blowing as nature was so very present for our eyes and ears to take in.

Nicholas' late afternoon and evening went just right: talking, playing, laughing, and being together (with two of this three brothers).

NEXT WEEKS BONE MARROW ASPIRATE
Please pray with us, knowing that the miracles we have seen within Nicholas will continue to manifest revealing what we see and sense from Nicholas-Love revealing love, purity, and perfection.

PICTURES
All the pictures from the last two weeks in the hospital have been uploaded onto the third album below, under Links. Please see the nearly two dozen pictures since March 13 depicting Love that is shinning within and around Nicholas. We smile as we see and feel Love; can you sense it?

Also, please click on View Photos as we have changed the three pictures placed there yesterday providing you with another snapshot of the last couple of weeks. (We will place more of the two dozen pictures under View Photos over the weekend; however, seeing them all in order in one sitting really helps to see Love guiding Nicholas through it all.)

March 30, 2006 Blood Counts:

WBC: 0.7
HGB: 9.6
PLTs: 44
ANC: 200 (161)

 


Wednesday, March 29, 2006 11:59 PM CST

NICHOLAS HAD A GOOD DAY
Simply stated, Nicholas had another good day and it is clear to us that Love is purifying his body and shinning through him.

After a visit from friends, who also brought Nicholas (and mom & dad) another favorite-chips and salsa, Nicholas played a little basketball outside and baseball. He really liked playing baseball today and his eye for the ball & swinging of the bat was just perfect!

And last night was absolutely soothing to be able to sleep in our own bed.

PICTURES FROM THE LAST TWO WEEKS WHILE IN THE HOSPITAL
The picture above and the three seen when you click on "View Photos" are just four of many pictures telling a beautiful story of Nicholas following God, the perfect guide, through the last two weeks in the hospital. More pictures will be uploaded tomorrow to this site AND to third album below under "Links."

Do you see Love shinning and operating within and around Nicholas? We see it, feel it, and trust & believe in God's perfect work revealing just that, his perfect work-Nicholas.

NEXT STEPS
1. LPCH Clinic appointment tomorrow (Thursday)

2. Over the next few days for the blood counts to recover from the chemotherapy that ended March 6

3. Anticipating blood count recovery, another Bone Marrow Aspirate is being scheduled for Monday or Tuesday of next week to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

March 29, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, March 28, 2006 6:00 PM CST

NICHOLAS IS OUT OF THE HOSPITAL AND IS NOW AT HOME
Nicholas, well mom & dad too, woke up to good news-we were told that we were going home this afternoon. And we are now home!

NOTE: Pictures from the last couple of weeks will be uploaded tonight or tomorrow.

NEXT STEPS
1. LPCH Clinic appointment Thursday

2. Over the next few days for the blood counts to recover from the chemotherapy that ended March 6

3. Anticipating blood count recovery, another Bone Marrow Aspirate is being scheduled for Monday or Tuesday of next week to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

March 28, 2006 Blood Counts:

WBC: 0.8
HGB: 8.1
PLTs: 75
ANC: 288

 


Monday, March 27, 2006 10:28 PM CST

WITH EVERYTHING IN PERSPECTIVE, ANOTHER NICE DAY
Reflecting back on the heart-wrenching and full-body aching medical news form January 18, 2006, we feel that there is really not much of anything that worries us anymore as we keep "life" in perspective with God as the focal point of our lives. We heard the worst possible news on January 18 and as hard as it may seem to be able to bear, we feel a sense of calm and direction with God within and around Nicholas.

Today marks two weeks that Nicholas has been in the hospital (because of a fever and bacterial infection that quickly went away) and we expect blood counts to rise enabling us to go home in the next day or two. Keeping things in perspective, it really is not about the numbers of days in the hospital, blood counts, leukemia, etc. We love, trust, and believe God to guide Nicholas safely through what Nicholas has been navigating since November 19, 2004. It has been that long and our love, trust, and believe in God has delivered us to this day and will deliver Nicholas through the days ahead. And we pray that it will be months and years ahead as further testaments to Love-omnipotence, omniscience, and omnipresense-forever.

Early afternoon, Nicholas received a Platelets transfusion (PLTs were down to 10). This afternoon and evening Nicholas was playing and having fun with the nurses throughout the halls. He was walking great, walk-running so much better, and did lots of "running around" doing things the kids just like to do.

NEXT STEPS
1. An ANC of at least 200 for with some Monocytes so we can go home (if necessary, please refer to the March 21 journal for more information about the ANC and Monocytes)

2. Over the next few days for the blood counts to recover from the chemotherapy that ended March 6

3. Sometime between the end of this week and next week, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

March 27, 2006 Blood Counts:

WBC: 0.8
HGB: 10.2
PLTs: 10
ANC: 192

 

 


Sunday, March 26, 2006 10:30 PM CST

AND ANOTHER NICE DAY ALTHOUGH NICHOLAS IS STILL IN THE HOSPITAL
Friends blessed our day with surprises for Nicholas, seemingly old-fashion fun with kids at play, and helpful scriptures to fortify our trust, belief, and love for God.

Through all that Nicholas has faced, you have seen him continually shine. So what is keeping us in the hospital is just his blood counts-waiting for them to increase toward targeted ranges.

NEXT STEPS
1. An ANC of at least 200 for two consecutive days with some Monocytes so we can go home (if necessary, please refer to the March 21 journal for more information about the ANC and Monocytes)

2. Over the next 5-7 days for the blood counts to recover from the chemotherapy that ended March 6

3. In about 7 days, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

March 26, 2006 Blood Counts:

WBC: 0.7
HGB: 10.0
PLTs: 13
ANC: 130

 


Saturday, March 25, 2006 10:25 PM CST

RESTFUL DAY, OUTSIDE PLAY
Nicholas is still in the hospital although he looks great and is doing very well. He rested all morning and a little in the afternoon. Early evening we took him outside on the patio for fresh air and gazing at the clouds in the sky with the cool breeze on our faces. Then he went onto a courtyard outside of the hospital for some play with mom & dad.

The outside play: Nicholas received a battery powered foam-disc blaster last night and really liked firing at mom & dad as we tried to sneak up onto him. The courtyard has a waterfall and tropical plants; when Nicholas fired the discs into the air it looked like flying saucers invading a tropical paradise. Although we were outside for a short period of time, Nicholas had a good time-and you know that mom & dad were so thrilled to see him "playing and having fun."

GOD PROTECTING US, NICHOLAS PROTECTING MOM & DAD?
We are so glad that Nicholas has not complained once about being in the hospital during this 13-day stay so far, or talked about going home. However, we just know that it is on his mind and we hope we are able to go home next week. You know, we think Nicholas is aware of so much and that he tries to ease the pain on mom & dad by just navigating through all of "this stuff." At his young age, we know he-too-leans on God and that he can get through all of this stuff with God guiding him. We pray that it can soon be all behind us so Nicholas can just play and have fun without trying to protect us.

NEXT STEPS
1. An ANC of at least 200 with some Monocytes (if necessary, please refer to the March 21 journal for more information about the ANC and Monocytes)

2. Over the next 7 days for the blood counts to recover from the chemotherapy that ended March 6

3. In about 7 days, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

March 25, 2006 Blood Counts:

WBC: 0.6
HGB: 10.0
PLTs: 14
ANC: 168

 


Friday, March 24, 2006 11:59 PM CST

SNAPSHOT OF THE DAY

-The doctors are NOT CONCERNED WITH THE BLOOD COUNTS BEING LOW, relative to the time period since the last chemotherapy. Note: You may remember that when we had the first of the two rounds of a "modest" chemotherapy regimen in January his counts did not recover for 23 days, his ANC was just as low, and Nicholas was not in the hospital during the time the counts were recovering. However, because Nicholas had the fever March 13 and the more chemotherapy administered can slow things down (so to speak), the doctors want to keep a "closer eye" on Nicholas. Today is the 18th day since the last chemotherapy.

-Nicholas will be IN THE HOSPITAL OVER THE WEEKEND and after Monday's blood counts are determined we will have a conversation about going home. (Remember, after the counts recover a bone marrow aspirate will be performed to check the marrow.)

-If going home was based on how well Nicholas looks and how well he is physically doing, we would be home, home, home! NICHOLAS IS DOING JUST FINE AND WE PRAISE GOD for this blessing.

-"Books-A-Live" this afternoon so more INTERACTIVE EDUCATION AND FUN on the computer.

-Walk on the patio with a gentle mist falling. And in the sky NICHOLAS SPOTTED A RAINBOW. Like most of us remember, a pot of gold is at the end of the rainbow and that was the first thing Nicholas asked about. "Lets go to the end for the pot of Gold!"

-Nicholas was treated to one of his favorite dinners, Japenese food. FRIENDS Annette and Marialena knew just what Nicholas wanted: Shrimp tempura, California rolls, and Edamame. And mom & dad were treated as well, not just to the satisying dinner, to really nice conversations that enabled us to seemingly "get away" from the hospital.

-Have you heard about the PS2 game called "Guitar Hero?" It includes a modified guitar and you hold the keys and stroke the guitar like a real one to play a variety of songs. One of the nurses brought it in to the hospital for an older patient, and NICHOLAS WAS FORTUNATE TO GET TO PLAY IT.

PICTURES: Like several pictures over the last 12 days during this hospital stay, a picture of Nicholas playing this guitar will be posted after we get home from the hospital.

March 23, 2006 Blood Counts, at 9:10 PM:

WBC: 0.8
HGB: 12.8
PLTs: 16
ANC: 110

 


Thursday, March 23, 2006 11:39 PM CST

KEEPING NICHOLAS ACTIVE WITH "FRESH" THINGS TO DO AND SURROUNDED BY GOD
All of this leukemia stuff is simply awful to know about and deal with night and day. And it is not easy to put aside all of the medical stuff; however, we just keep on praying, trusting, believing, and living our lives for God. In Him we put Nicholas' life and in Him we know there is His love forever, guiding and shielding Nicholas. We constantly pray for this truth to continually manifest in Nicholas because it is His word!

Nicholas awoke to "Books-A-Live" at his door to start his day out in an exciting way. He just loves doing things on the computer. After lunch Nicholas and dad had several bouts of boxing although Nicholas, leveraging what he has learned about karate and sword fighting, integrated those types of moves with his boxing. His hand and eye coordination really made it hard for dad.

Nicholas and mom visted another patient, playing games and sharing conversations. Nicholas loves time with mom so very, very much (more than one would naturally expect).

This evening we went for a 2-hour stroll out of his room and off of his floor: On the hospital roof top path, in the water-fountain court yard, and just being outside of the hospital is where we spent the time. Looking at humming birds, planes, clouds, people, and ourselves in the moment. We are so grateful that Nicholas' days have meaning (it seems like they do to us and we pray that they do to him), that he is not bored, and that he expresses heartfelt joy. With our focus being on living for God, we trust Him to deliver Nicholas free from anything contrary to Him-it is His word.

STILL IN THE HOSPITAL, DISAPPOINTMENT WITH THE ANC
After yesterday's ANC of 260, we were praying for another 200-plus ANC today so we could prepare to go home. It appears we will be in the hospital through the weekend. However, Nicholas blood counts (including ANC) are where the doctors would expect after coming off the recent chemotherapy.

Today's ANC had dropped to below 190 and Platelets down to 17 (after this evening's blood draw and counts are known there may be a Platelets transfusion tonight or tomorrow morning). So, we are just putting aside the numbers and praying for love to see us through-God's love and His guiding of the doctors and mom & dad's hearts and minds.

NEXT STEPS
1. An ANC of at least 200 with some Monocytes (if necessary, please refer to the March 21 journal for more information about the ANC and Monocytes)

2. Over the next 7-10 days for the blood counts to recover from the chemotherapy that ended March 6

3. In about 10 days, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

March 23, 2006 Blood Counts:

WBC: 0.6
HGB: 10.9
PLTs: 17
ANC: 190 (we were told it is closer to 140)

 


Wednesday, March 22, 2006 11:33 PM CST

GOOD DAY AND EVENING
Nicholas slept the early part of the day and awoke to a surprise game brought in by his nurse. It was a table-top pinball machine that had the lights and sounds of a regular pinball machine. An added treat was it was a Spider-man pinball machine. This was lots of fun for Nicholas.

This evening Nicholas took a walk in the park-well the roof top patio where there are lots of trees, plants/flowers, and views of the surrounding mountains as well as a soothing sunset this evening. And then he went out to eat-well to the Stanford Hospital Market Square where he selected and ordered his dinner to eat in his room. While it may seem nice to have diner brought "to" you, it seemed like a very good treat for Nicholas to stroll out to get his dinner. His sense of being "out" and even selecting a surprise treat for mom and buying something for dad with his own money was so pleasing. It was an absolute joy for mom & dad seeing Nicholas enjoy the evening.

What also helped to make the day good was the blood counts and the related ANC above 200 as referenced in yesterday's journal. And he has a couple of Monocytes. So another surprise is that if tomorrow's blood counts show an ANC above 200 and there are several more Monocytes, Nicholas may go home by Friday evening.

Because Nicholas' Hemoglobin (HGB) was low, a Red Blood Cell transfusion was given tonight.

GOD, WHO WE NEED RIGHT NOW IS YOU
We continually feel and see blessings within and around Nicholas and unquestionably we are so grateful for God's love. And while we express our appreciation for these blessings, including all of you who are directly and indirectly "with" Nicholas on this journey, we know that who we need right now (always and forever) is God. We have said it before and will always and forever need God in our lives. We cannot do any of the things we are doing for Nicholas by ourselves.

We do not see all that is going on as mind over matter; we see it as God's love over matter and anything else contrary to love for He is omnipotent, omniscience, and omnipresent!

NEXT STEPS
1. An ANC of at least 200 with some Monocytes

2. Over the next 7-10 days for the blood counts to recover from the chemotherapy that ended March 6

3. In about 10 days, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

March 22, 2006 Blood Counts:

WBC: 1.0
HGB: 7.6
PLTs: 31
ANC: 260

 


Tuesday, March 21, 2006 11:48 PM CST

STILL IN THE HOSPITAL, A WATCHFUL EYE
The doctors are focusing on "quality of life" for Nicholas so if we felt really strong about being home now they would work it out. However, with Nicholas still being neutropenic (below normal ability to fight infection) and coming off of last weeks bacterial infection they want to keep a watchful eye on him.

GOAL TO GO HOME: An Absolute Neutrophil Count (ANC) of at least 200 and some Monocytes (definition below) which would indicate bone marrow recovery from the recent chemotherapy. So we expect to be in the hospital through the week and possibly the first part of next week.

MONOCYTES: A type of white cell that represents about five to ten percent of the cells in normal human blood. The monocyte, along with the neutrophil, are the two major microbe-eating and killing cells in the blood. When monocytes leave the blood and enter the tissue they are converted to macrophages. The macrophage is the monocyte in action and can combat infection in the tissues, can ingest dead cells (scavenger), and can assist lymphocytes in their immune functions.

We thank God for Him being the greatest watchful eye and guiding hand always at work for Nicholas (as Nicholas, mom & dad work to work for Him).

GOOD DAY
Nicholas woke up and began his smiles and playfullness as Kaeli (BMT buddy) came for a visit. Then Child Life visited Nicholas, as always, and Nicholas played card and board games with Kristen. And this evening Nicholas visited another patient, Camilia, and spent time playing and cheering her up. (Remember, Camilia is the 12-year old that Nicholas made some art work for last week to help cheer her up.)

And for Nicholas' general development, we are so grateful that Language, Math, and Physical activity along with other curriculum is being achieved in a variety of ways leveraging the situation facing Nicholas. LANGUAGE, he has been expanding his language as he engages with patients, nurses, doctors, and others. MATH, well, you have seen money in his hands in many photos and it has been a very good way for us to teach math to Nicholas. PHYSICAL ACTIVITY, day and night mom & dad interact with Nicholas in ways that get him "moving."

Mom & dad are focused on Nicholas. As mom says, "It is all about Nicholas." We know that happiness cannot be taken away by anything because happiness comes from God; and we pray day and night thanking God for allowing mom & dad to help create happiness for Nicholas.

NEXT STEPS
1. An ANC of at least 200 with some Monocytes

2. Over the next 7-10 days for the blood counts to recover from the chemotherapy that ended March 6

3. In about 10 days, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

March 21, 2006 Blood Counts:

WBC: 0.9
HGB: 8.8
PLTs: 42
ANC: 100

 

 


Monday, March 20, 2006 10:58 PM CST

REJOICE, REJOICE, REJOICE, AND REJOICE AGAIN
Results of the second CT Scan performed this evening reveal, well, does not reveal much of anything-rejoice! The report is they are not sure anything, or nodule, was there on last weeks CT Scan as it is clear now-rejoice!

They are saying that it could have been an infection that was clearing and is clear now. Or, it could have been blood vessels clustering and forming that are resolving on their own. They will monitor via future scans. Well, really, "There is no spot where God is not!" We are rejoicing tonight and so thankful for love's manifestation.

HE IS ALWAYS THERE!
So we cannot help but think, what if there was something there now. Would that mean that God is not there taking care of Nicholas? We say no, God is always there taking care of Nicholas and knowing what he needs even before the doctors. In God's speed will things be done and as hard as it is to continually be/show patience for Nicholas as well as ourselves, we trust God and feel His presence.

We do wonder why this journey is taking so long! And we trust God and what His plan is for us. We will continually listen for His voice and follow Him.

NICHOLAS AND GOING HOME
Wow, Nicholas is simply doing GREAT. He is doing just about all the things a child loves to do (and some things many children do not like to do), although we are still in the hospital. Today, it was like a tag team for mom & dad switching off "playing and having fun" with Nicholas.

There are now just two medicines being administered via IV: Cyclosporine and Cefipine (antibiotic). Because of the antibiotic and watching of the liver numbers, coupled with Nicholas' blood counts that have not yet recovered from the recent chemotherapy we are still in the hospital. However, discussions are underway about going home sooner than later because we can administer the IV medicines at home-and Nicholas is doing great. Last time it took about 23 days for the counts to kind of recover (however there were no fevers or infections in the picture) and we are only 14 days post chemotherapy this time (and he has been without fever and the antibiotics are taking care of the bacteria).

Thank God for even the small miracles because THEY ARE MIRACLES and we know that Nicholas is blessed (as hard as it may seem to understand).

March 20, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Sunday, March 19, 2006 11:32 PM CST

ANOTHER CT SCAN TOMORROW (Monday)
The final report of last Tuesday's CT Scan reveal a 3mm spot at the middle of the right lung. It could be fungus or it could be nothing; another CT Scan (lung and sinus) will be performed tomorrow. It the spot is still present a lung biopsy may be scheduled.

We remember something taught our older boys years ago and shared with Nicholas even before all of this leukemia and bone marrow stuff-"There is no spot where God is not!"

Like the doctors said today, Nicholas looks great so there is nothing clinically significant prompting action right now because he is not having any fevers and he bounced through all that was going on when he was admitted last Monday. More importantly, there is no spot where God is not and His word IS true-Nicholas is made in the image and likeness of God so nothing contrary to love and purity has power over Nicholas. We trust and believe His words as witnessed throughout this entire journey.

ALWAYS SOMETHING ELSE
We do, we do trust and believe and we try not to worry about things, however, we do worry at times. We pray for God's help and we pray thanking God for the continued blessings of love manifesting in Nicholas.

LOVE
This afternoon Nicholas was out on the hospital patio enjoying the weather. He saw buds on trees and said, "Look mom, they are going to get leaves soon!" There are lots of squirrels on the patio and Nicholas saw some buds of acorns popping up. Remember a few weeks ago when Nicholas found an acorn planted by a squirrel in one of mom's planters at home? Remember, he replanted it and named it "Squirrely."

Love is simple and love provides everything your heart desires. Our love does its job and we trust God's love as it is His word.

And Nicholas had a nice treat this evening, KJ (another BMT buddy) came to visit Nicholas in the hospital with his dad, Ken. What amazing friendships that have developed along this journey (we are so thankful).

HOME SOON, WE HOPE
Tomorrow (Monday) it will be one week in the hospital and we are hoping to go home sometime this week. Please, please, please continue praying for love's manifestation in Nicholas and that "there is no spot where God is not."

March 19, 2006 Blood Counts:

WBC: 5.0
HGB: 9.0
PLTs: 73
ANC: NA

 


Saturday, March 18, 2006 10:01 PM CST

STILL IN THE HOSPITAL, STILL HAVING NICE DAYS
The last two nights Nicholas has not slept all through the night: Just could not fall asleep Thursday night and last night his rear was bothering him. Knowing this and knowing that he has been having really nice days is amazing.

The pain in his rear has eased up dramatically-yeah! And he no longer is worried about having to go to the bathroom as he was during the week.

If you did not know about all that has been going on over the last 484 days, you would not know! And this gives us so many reasons to be thankful for God's love. One day at time, with one love all the time-God.

While Nicholas rested a good portion of the day, he was so lively and full of spirit. In fact, the nurses and assistants were commenting about seeing all aspects of Nicholas they remembered checking into LPCH 484 days ago, not just the him continually lluminating with rays of sunshine that warms your heart, with strength, energy, enthusiasm, joy, & endless passion for caring about others.

March 18, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, March 17, 2006 11:43 PM CST

DIFFERENT KIND OF VISIT THIS MORNING
This morning Nicholas woke up to a visit, not from a friend, not from a celebrity-type, but from a husband/wife considering donating funds to LPCH. This couple came in with the doctors to see a flavor of the work going on at LPCH from a parent/patient perspective. You know Nicholas, he was okay with the visit as he likes being around people.

ARRAY OF MUSIC AND FUN
This afternoon the Nieuwsma girls came for a visit with their mom and they brought their harp. Yes, their harp which is really big (and beautiful). Each of the four girls performed several songs for Nicholas, well, for mom & dad too. It was absolutelty beautiful and there was a beautiful surprise-Nicholas was sleeping while they were performing (and a couple nurses came in to hear) and suddenly rolled over and said..."Boo!"

The sound from a harp is a wonderful way to sleep and wake up. PICTURES AND A VIDEO: Again, when we return home from LPCH we will upload pictures taken during our stay-there are some fun, exciting, and natural pictures to share. Oh, and Nicholas sat at the harp and performed-for the first time-a soothing piece of music created from his heart and we have it on video. People say that any sound from a harp is beautiful, well we are sure believers of that notion.

And the rest of the day: basketball with mom & dad for fun physical activity in the room, wrestling-with mom (not dad), more drawing, Books-A-Live, and an evening visit from Kaeli (BMT buddy) and her mom, Theresa, provided time for board games. Yes, Monopoly Junior was one of them!

LIVER NUMBERS ARE IMPROVING
The liver numbers that have been dramatically high and out of range the past 1 1/2 weeks, are coming down. Switching to Cyclosporine via IV is helping to get the Cyclosporine level in a theraputic range to combat liver issues. The target range is about 250 and today it was up from 33 to 100.

And Nicholas looks GREAT, thank God-truly thank God-for our sunshine shining!

NEW BACTERIA IDENTIFIED
Another culture was positive so in addition to the Gram Negative Rod Bacteria-Klebsiella Oxytosa identified yesterday, the second bacteria identified is Panotoea Agglomerans. The intervention was another antibiotic, Cefipine, added today. The Ceftaz that has been administered since this hospital stay was stopped so now the two being administered are Amikacin and Cefipine. Note: These bacterias could have come from Nicholas' own body as being severly immune suppressed (because of the recent chemotherapy) things that are normally in our bodies can cause problems for immune suppressed people.

And we will say it again, because we see it again, Nicholas looks GREAT and had a very good day.

With all of the things that are going on medically, we will say it again here too, we are so glad to have God with us guiding the way. It is so hard not to be fearful; however, with God we know that following Him, He will take the fears away.

SOMETHING FROM NICHOLAS
Sorry for this heading, anyway, remember the pain Nicholas was having during bowel movements last weekend? And remember this week a new medicine, Fentanyl, was made available to Nicholas that could QUICKLY provide relief. This evening when Nicholas had to have a bowel movement Fentanyl was infused and his bowel movement was okay in terms of the pain. And Nicholas said, "Mom, they should give this to all the kids because it really works!" And, and, and we have to say here-through everything going on we know that God really works and He is all that we really need. And we are thankful for what He provides...

GOING HOME IS PLANNED FOR NEXT WEEK
Well, we are now planning to go home sometime next week. Hoping that it will be the earlier part of the week. With the blessings of friends, caring and engaging hospital staff, and God providing for mom & dad, Nicholas is doing okay on all fronts so we will be get through it all praying for more wonderful news to further share God's wonderful work in Nicholas.

March 17, 2006 Blood Counts:

WBC: 0.4
HGB: 8.7
PLTs: 119
ANC: NA

 


Thursday, March 16, 2006 10:56 PM CST

WE NOW WE ARE BLESSED, AND THIS SITUATION "STINKS"
Thankfully, Nicholas is still without fever and today the specific type of the Gram Negative Rod Bacteria was identified: Klebsiella Oxytoca. And it is treatable with two, Ceftaz and Amikacin, of the three antibiotics already being administered (so the third one was discontinued today).

It stinks, all of this "leukemia and bone marrow stuff" stinks. We trust and believe in God, his love for Nicholas as well as mom & dad; and with our prayers to God we pray that He is okay with us saying that all of this stuff stinks. It is so hard, every day although we know that we are blessed with Nicholas' smiles and the amazing way that with God he finds ways to navigate it all while loving engaging with others. It is just that 24/7 and all of these days and months, it stinks to have to fight, fight, fight! We wish we could have the battles just by ourselves, freeing Nicholas from it all. However, we know that it is Nicholas fight and we are thankful that God has allowed us to be so present with Nicholas, and for God being MORE THAN present with Nicholas and mom & dad. In fact, it is God's fight so we know that Nicholas will be alright.

So, once again, Nicholas had a really good day interacting with the nurses and doctors at the nurse's station: he was playing, talking, sharing, and creating (he colored Easter eggs). Again he was thrilled to have fun and learning on the computer with a "Books-A-Live" volunteer. And tonight he played Monopoly Junior with one of the nurses. Remember this game involves money and Nicholas is a collector as well as giver of money so he was fully alert, attentive, and active while playing.

And as another day comes to an end, we thank God for the blessings even during times that "stink" to mom & dad. We pray for Nicholas' healing constantly and pray for God's love to continually provide us with all that we need to "be there for Nicholas."

We are hoping to be able to go home this weekend.

March 16, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, March 15, 2006 11:19 PM CST

STILL IN THE HOSPITAL AND "SEEING" REASONS TO SMILE
Being home, outside, and going where you want to go is so wonderful and we, certainly, know and appreciate those seemingly expected things in life. There are always "sayings" like "Smile" or "Have You Hugged Someone Today?" These, too, may be things that are seemingly expected and we wonder if all of us in general really know the love & energy generated by a simple smile or hug.

Well, we are still in the hospital and we are smiling just seeing Nicholas smiling. We are where we are and our hearts allow the love & energy to do anything and everything for Nicholas-our rewards are his smiles which is just about the greatest gift. We are where we are and Nicholas had a very nice day:

-Nicholas and mom & dad had warm, loving conversations with a hospital Reverend we met during Nicholas' BMT. Remember shortly after Nicholas was diagnosed back in November 2004 and he would awake from being sleep, or pretend to be asleep, and say "BOO!" to the staff who were quietly approaching him? Well, even the Reverend received a BOO! wake up call from Nicholas today.

-Visit by KJ and his dad, Ken (you know KJ, the BMT patient Nicholas befriended while at the Ronald McDonald House).

-Games and painting with mom.

-A little physical activity with dad.

-Stroll in the hospital.

-Dinner and a movie on the window-bench seat. Oh, and of course popcorn. The movie was "Catch That Kid" which was "As much fun as Spy Kids and more fun than Agent Cody Banks!" Throughout the movie some of the staff joined Nicholas for a few scenes. Part of the story line was about one of the kid's father who was in a hospital-and the daughter with two other kids created a way to do everything they could to get the father the medical care he needed.

NOTE: As hard as all this stuff is that Nicholas is facing, we pray knowing that "God, who we need right now is You!" And we know that He is here with us to do everything for Nicholas in God speed. So without the seemingly expected things taken for granted, we are so grateful for the simple smiles from Nicholas that light up our hearts and our world.

-Games with some of the nurses.

MEDICAL SNAPSHOT:
-No fevers since yesterday (Tuesday) around 3:00pm.

-Tomorrow we expect to learn the specific type of Gram Negative Rod Bacteria for its linking intervention to take place.

-No update to the findings of last night's chest x-ray, it was clear (good).

-CT Scan findings are that the base of the intestines at the colon is inflamed which appears to be causing the severe pain during a bowel movement. A much stronger medicine, Fentanyl, is now on standby to be administered right before a bowel movement (it is fast acting and does not stay in a person's system long).

-Two liver numbers are dramatically high, out of range and they started to climb last Tuesday. However, other liver numbers are moderatly high, out of range. The doctors believe that it could be liver GVHD, and the Cyclosporine medicine to combat it is not at a theraputic range. For some reason the oral dose is not staying in Nicholas' system so tonight we began administering Cyclosporine via IV. (Remember, this was the case shortly after the BMT.)

Note: Infection could cause the liver issue. Good news, the CT Scan shows that nothing is abnormal with the liver.

-Platelets (PLTs) transfusion will be infused about midnight.

-Low blood counts are expected in general; remember, medically it takes about 2-3 weeks for the counts to recover after chemotherapy and today is just the ninth day since the last chemotherapy regimen.

God, love is all we need-miracles happen and we pray for miracles in Nicholas to continue.

March 15, 2006 Blood Counts:

WBC: 0.3
HGB: 9.1
PLTs: 15
ANC: NA

 


Tuesday, March 14, 2006 11:59 PM CST

SNAPSHOT OF THE DAY
-One of the cultures show a positive reading for Gram Negative Rod Bacteria. So a third antibiotic, Amikacin, was added this morning. We will not know the specific type of this bacteria until probably Thursday as analysis of the culture continues. (October 12, 2005 and November 14, 2005 this bacteria surfaced and we are so grateful the specific types were treatable.)

-When Nicholas woke up today after noon, he was alert, very active, very playful, and so loving. (For those of you who have been around Nicholas you know that the words "so loving" are absolutely the right words to describe Nicholas regardless of the roller coaster ups and downs.)

-Remember "Books-A-Live" that have been a wonderful part of Nicholas stays in the hospital? Well, when one the volunteers walked into his room and Nicholas saw her, he sat "fully" up and clapped his hands. He was so happy to see the PC and interactive & educational games/programs for him. Nicholas and the volunteer, Cheryl, always have lots of fun. PICTURES of their smiling and engaging faces will be posted when we return from the hospital.

-And do you remember Child life engaging with Nicholas during hospital stays? As always, they were right there for Nicholas in ways that he really enjoys.

-"Engaging" is another word that you have read (or seen) in Nicholas with the staff at all levels: assistants, nurses, nurse practitioners, and doctors. And Nicholas was so, so happy to see all three of his nurse practitioners visit him today: Lynn, Karen, and Lizzie. Blessed, blessed, blessed, blessed-we know that we are blessed with all of these great relationships as they not only make Nicholas feel so completely comfortable, they provide an absolutely great environment for mom & dad.

-Pleasantly, a few times it was like a parade today in terms of visits from the staff. AND we are so grateful for their proactive attention and care.

-A CT Scan of Nicholas' stomach was performed this evening to help identify a cause of the very severe pain Nicholas has during bowel movements. The preliminary findings are not conclusive, maybe there is slight inflamation at the base of the intestines. Official results will be known tomorrow.

-Also, a chest x-ray was performed because a nurse detected a little wheezing. The preliminary findings, chest is clear (a good thing).

-Late evening, Nicholas was again very active.

-Nicholas spent time at the nurse's station doing some work, playing, and then he stopped to create a card for a 12-year old patient who has been having a really, really hard time. Nicholas said he was creating the card to make her happier! He gave it to her and she smiled.

-Fevers: Since being admitted with a fever yesterday, Nicholas has had sporadic fevers. However, the last fever today was at 3:20pm and now before midnight he is without fever.

-There are so many things being monitored, assessed, and interventions discussed. AND we just feel God's presence with us and all around Nicholas-even in the conversations with the staff. Naturally, we are so grateful for God's love and we know that to get through all of this stuff we have to go through it following Him. We do!

-WHEN WILL NICHOLAS GO HOME: Now, the earliest may be Friday. And within a couple days after getting home we should be able to post pictures taken duing the last two days in the hospital. You may not believe your eyes when you see Nicholas, a beautiful sunshine. Then again, following Nicholas' journey you have seen the sunshine come through some very, very cloudy moments. And we thank God all day and everyday as we try everyday to live following Him-trusting and believing.

March 14, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, March 13, 2006 10:24 PM CST

IN THE HOSPITAL WITH A FEVER
While the normal process of vital signs were being taken at LPCH before the blood lab draws and examination, Nicholas' temperature reading revealed that he had a fever. The process contracting a fever means Nicholas will be in the hospital for at least 48 hours and he was admitted—we are back in the room where Nicholas received his BMT just about a year ago. The process with a fever is blood and urine cultures to try to identify any virus or bacteria; and the earliest we could go home will be Wednesday night.

Antibiotics Ceftaz and Vancomycin were administered. These two antibiotics provide broad coverage as an intervention to the cause of the fever until the cultures grow out to pinpoint any virus or bacteria, and knowing a cause an appropriate antibiotic will be determined to fight it.

AND BLESSINGS CONTINUE
As hard as it may seem to say or hear, once again, we know that we have been blessed because Nicholas has not had a fever since December 25, 2005 and the doctors have been surprised at how well he has been doing because it is common for patients in Nicholas’ medical situation to contract fevers. A few months may not seem like a long time without having a fever, however, understanding the medical situation it is simply amazing that he has remained without fever and without having to be hospitalized for other issues.

WE HAVE REASON TO BE THANKFUL
We are thankful, thankful that Nicholas has been able to shine through some very, very tough hours (not moments) with pain and the overall medical stuff that have been going on over the last six months as well as this weekend. And we continually give thanks to God for He is the source of Nicholas' “light” and the source of everything good in and about Nicholas. And we pray for God’s help in taking away our fears because in Him, nothing should we fear because He is the source for all that we want and need. And as MUCH as we LOVE Nicholas, we know that God loves Nicholas and mom & dad so, so much more—we are blessed with His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for information about the overall next steps.)

March 13, 2006 Blood Counts:

WBC: 0.5
HGB: 10.5
PLTs: 58
ANC: NA

 


Sunday, March 12, 2006 11:59 PM CST

HAPPY, SAD, TEARS, PRAYERS, AND JOY
We have talked about all of this leukemia stuff being like a roller coaster and a slippery road. Like the last couple of days, today is described as happy, sad, tears, prayers, and joy—yes, thankfully, joy! Our emotions have been up and down and we are so thankful to lean on God over, and over, and over again throughout the days.

We keep saying that we know we are blessed and each day “we know we are blessed” as even on a roller coaster of emotions each day there has been joy. While we pray throughout each day, and fully express our love to Nicholas continually, our prayers when Nicholas is in pain and/or sad is where we lay our hearts, minds, and all that we are to God.

While we have generally been afraid more than ever the last couple of days, more than ever we lean on God, His love, His omnipotence, omniscience, and omnipresence which manifests love in Nicholas and in mom & dad. We are afraid because we “do not know” AND while it is hard because of all that is going on, we know that with God, He will lovingly shield Nicholas and guide us all. And in God we trust and believe.

LOOK, FEEL, AND SEE…
The picture of Nicholas above is purely amazing to us in terms of all that Nicholas has gone through today—and it is a picture reminding us that trusting and believing in God allows miracles to manifest...

NEXT STEPS
1. LPCH Clinic tomorrow (Monday) for blood lab work and examination

2. Next 1 1/2 -2 weeks for the blood counts to recover from the chemotherapy that ended this past Monday

3. In about 2 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

March 12, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, March 11, 2006 11:59 PM CST

LONG FRIDAY NIGHT, LONG SATURDAY MORNING
Referring back to Friday night’s journal, Nicholas had pain sporadically from 10:00pm Friday until 5:20am Saturday. At that time we gave him some Ativan and he was able to rest without being awaken because of pain.

However, two hours later we had to get him up and off to LPCH Day Hospital for Platelets and Red Blood Cells transfusions. Around 1:30pm, during the nurses regular follow ups throughout the transfusions, they walked into the room and were greeted by a pleasant, lively surprise. Nicholas was now awake, joyful, and lively playing card games (Uno and Wig Out) with mom and his cousin, Mikayla. What a blessing to see his spirit beautifully filling the room.

The transfusions were completed and thankfully there were no issues, we left the Day Hospital around 2:30pm.

CONVERSATIONS OF LOVE NEAR AND FAR
While in the Day Hospital, for mom & dad, it was a blessing to have conversations about God and “all of this leukemia and bone marrow stuff” with another parent, Ely, we met along Nicholas’ journey and Ely and Gigi’s son, Matthew’s, journey. And this evening it was so helpful to have a conversation with a friend that was far away. We were reminded that our job is only to love Nicholas, and God’s job is loving Nicholas as well as to see Nicholas through EVERYTHING.

Nicholas has had pain during bowel movements throughout the night, together we have been in prayer constantly throughout the night, and trusting and living the way God has planned is really all that we need to guide everything in front of Nicholas. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we do turn everything over to God and will continue to follow Him through whatever confronts our path. With God there is truth—the spirit and love of God operating within and around Nicholas and the result…harmonious and good. We wish we could take all of what seems to be hard or bad away from Nicholas…and praying together with love at the heart of our thoughts and actions is what we continually do.

NEXT STEPS
1. LPCH Clinic on Monday for blood lab work and examination

2. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended this past Monday

3. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

March 11, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, March 10, 2006 11:14 PM CST

SEAFOOD, FRIENDS, COUSIN, AND FRIENDS
Remember the photos of the seafood meal prepared in our home by Soha on November 11, 2005? Well, Nicholas more than remembered it today because Soha came over and prepared it again—Nicholas had crab, shrimp, and salmon and it was wonderful.

And then Nicholas had a fun-filled afternoon with Soha’s girls, Neda and Hana. Then his cousin, Mikayla, came over for the evening. And then family friends, Greg and Judy, came over with their two girls, Amanda and Cassidy. So Nicholas’ fun-filled afternoon continued through the evening: laughter, running, and silliness filled the air and our hearts. The day was truly beautiful to see, for Nicholas.

Remember, we talked about Nicholas being directed and guided by God, not by numbers or blood counts. This is important to us; and seeing the energy in Nicholas all day is a beautiful testament to his strength coming from God in spite of “numbers.” We say this because seeing him and the energy he displays, most people would not imagine that medically he needs to have a Red Blood Cells transfusion (tomorrow, Saturday).

PAIN, TEARS, AND PRAYERS THIS EVENING
And tonight there was a specific problem for Nicholas, to say it directly, his rear-end was extremely sore probably because of chemotherapy side effects including extremely low Platelets. We are praying and working so hard understanding God’s omnipotence. As much as it hurts mom & dad, we know that our pain was nothing compared to Nicholas’ pain. Hearing his piercing cries and calling out to God pierces our hearts with pain, and we joined him in prayers to God…

Tonight we were reminded of the song, “He’s My Son,” that was included in the January 6, 2006 journal (please refer to that journal for the words and the link to paste into your browser to hear the song). Nicholas hurts, we hurt, and we pray for the miracle of life and reward of living without pain—Nicholas continues to do more than “his part” in all of this and we know God loves him so much that we pray for this realization to be manifested in every conscious thought and feeling for Nicholas. We love Nicholas.

NEXT STEPS
1. LPCH Day Hospital tomorrow morning for PLTs and RBC transfusions

2. LPCH Clinic on Monday for blood lab work and examination

3. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended this past Monday

4. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

5. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path

March 10, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, March 9, 2006 11:09 PM CST

BLOOD LAB WORK
While Nicholas looks great and is vibrantly shinning, his blood lab work today shows his Platelets (PLTs) and Hemoglobin (HGB) trending down significantly and out of range. As a result, very early Saturday morning we will be at LPCH Day Hospital for a PLTs and Red Blood Cells (RBC) transfusions. With the chemotherapy regimen that ended this past Monday, the blood counts going down before they start going back up is generally part of the process.

His Liver numbers are dramatically high, out of range so we are closely watching Nicholas and the doctors watching the numbers for intervention steps—this too can be part of the process, however, they have never been as high as they have been this week. And because God is always present we thankfully pray for His continued shielding of Nicholas, His child, from anything contrary to His perfect work.

NICHOLAS
This evening we went for a short drive and Nicholas wanted to tell stories using stuffed animals. And that is exactly what we did. The stories turned into memory games and at one point Nicholas said, “You know what, we can do math using the animals.” And that is exactly what we did. The animals were dogs, tigers, turtles, snakes, alligators, lizards, and dinosaurs. We used their individual characteristics to make up math questions and Nicholas really had fun—and we had fun seeing him really enjoy using his “noggin!” Mom & dad are blessed that he loves using his “noggin” in his every-moment, every-day way of interacting.

And he had an overall really nice day—love stops everything contrary to it!

QUESTION FROM NICHOLAS
Two nights ago Nicholas asked if the discoloration, light areas, on his skin would go back to normal (skin GVHD from the BMT that surfaced over the last several months). Previous discussions with the doctors enabled us to answer the question, saying that it would clear up over time. And while we think about “time” we constantly pray, knowing God is on our side so time, in a sense, is irrelevant as we think about… “God speed.” And yet we know it is a question that the answer may not provide Nicholas all that he really wants to know.

A friend reminded us of an analogy regarding Nicholas’ question. The analogy is: It is like looking up into the sky on a cloudy day; you know that the sun is there and when the clouds drift away it is shinning—and you are reminded that it has never left. So the discoloration of Nicholas’ skin is like the clouds, the vibrant healthy skin is there and will soon shine through. We shared this thought with Nicholas.

NEXT STEPS
1. LPCH Day Hospital Saturday morning for PLTs and RBC transfusions

2. LPCH Clinic on Monday for blood lab work and examination

3. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended this past Monday

4. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

5. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path

March 9, 2006 Blood Counts:

WBC: 0.4
HGB: 8.3
PLTs: 19
ANC: NA

 


Thursday, March 9, 2006 11:09 PM CST

BLOOD LAB WORK
While Nicholas looks great and is vibrantly shinning, his blood lab work today shows his Platelets (PLTs) and Hemoglobin (HGB) trending down significantly and out of range. As a result, very early Saturday morning we will be at LPCH Day Hospital for a PLTs and Red Blood Cells (RBC) transfusions. With the chemotherapy regimen that ended this past Monday, the blood counts going down before they start going back up is generally part of the process.

His Liver numbers are dramatically high, out of range so we are closely watching Nicholas and the doctors watching the numbers for intervention steps—this too can be part of the process, however, they have never been as high as they have been this week. And because God is always present we thankfully pray for His continued shielding of Nicholas, His child, from anything contrary to His perfect work.

NICHOLAS
This evening we went for a short drive and Nicholas wanted to tell stories using stuffed animals. And that is exactly what we did. The stories turned into memory games and at one point Nicholas said, “You know what, we can do math using the animals.” And that is exactly what we did. The animals were dogs, tigers, turtles, snakes, alligators, lizards, and dinosaurs. We used their individual characteristics to make up math questions and Nicholas really had fun—and we had fun seeing him really enjoy using his “noggin!” Mom & dad are blessed that he loves using his “noggin” in his every-moment, every-day way of interacting.

And he had an overall really nice day—love stops everything contrary to it!

QUESTION FROM NICHOLAS
Two nights ago Nicholas asked if the discoloration, light areas, on his skin would go back to normal (skin GVHD from the BMT that surfaced over the last several months). Previous discussions with the doctors enabled us to answer the question, saying that it would clear up over time. And while we think about “time” we constantly pray, knowing God is on our side so time, in a sense, is irrelevant as we think about… “God speed.” And yet we know it is a question that the answer may not provide Nicholas all that he really wants to know.

A friend reminded us of an analogy regarding Nicholas’ question. The analogy is: It is like looking up into the sky on a cloudy day; you know that the sun is there and when the clouds drift away it is shinning—and you are reminded that it has never left. So the coloration of Nicholas’ skin is like the clouds, the vibrant healthy skin is there and will soon shine through. We shared this thought with Nicholas.

NEXT STEPS
1. LPCH Day Hospital Saturday morning for PLTs and RBC transfusions

2. LPCH Clinic on Monday for blood lab work and examination

3. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended this past Monday

4. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

5. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path

March 9, 2006 Blood Counts:

WBC: 0.4
HGB: 8.3
PLTs: 19
ANC: NA

 


Thursday, March 9, 2006 11:09 PM CST

BLOOD LAB WORK
While Nicholas looks great and is vibrantly shinning, his blood lab work today shows his Platelets (PLTs) and Hemoglobin (HGB) trending down significantly and out of range. As a result, very early Saturday morning we will be at LPCH Day Hospital for a PLTs and Red Blood Cells (RBC) transfusions. With the chemotherapy regimen that ended this past Monday, the blood counts going down before they start going back up is generally part of the process.

His Liver numbers are dramatically high, out of range so we are closely watching Nicholas and the doctors watching the numbers for intervention steps—this too can be part of the process, however, they have never been as high as they have been this week. And because God is always present we thankfully pray for His continued shielding of Nicholas, His child, from anything contrary to His perfect work.

NICHOLAS
This evening we went for a short drive and Nicholas wanted to tell stories using stuffed animals. And that is exactly what we did. The stories turned into memory games and at one point Nicholas said, “You know what, we can do math using the animals.” And that is exactly what we did. The animals were dogs, tigers, turtles, snakes, alligators, lizards, and dinosaurs. We used their individual characteristics to make up math questions and Nicholas really had fun—and we had fun seeing him really enjoy using his “noggin!” Mom & dad are blessed that he loves using his “noggin” in his every-moment, every-day way of interacting.

And he had an overall really nice day—love stops everything contrary to it!

QUESTION FROM NICHOLAS
Two nights ago Nicholas asked if the discoloration, light areas, on his skin would go back to normal (skin GVHD from the BMT that surfaced over the last several months). Previous discussions with the doctors enabled us to answer the question, saying that it would clear up over time. And while we think about “time” we constantly pray, knowing God is on our side so time, in a sense, is irrelevant as we think about… “God speed.” And yet we know it is a question that the answer may not provide Nicholas all that he really wants to know.

A friend reminded us of an analogy regarding Nicholas’ question. The analogy is: It is like looking up into the sky on a cloudy day; you know that the sun is there and when the clouds drift away it is shinning—and you are reminded that it has never left. So the coloration of Nicholas’ skin is like the clouds, the vibrant healthy skin is there and will soon shine through. We shared this thought with Nicholas.

NEXT STEPS
1. LPCH Day Hospital Saturday morning for PLTs and RBC transfusions

2. LPCH Clinic on Monday for blood lab work and examination

3. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended this past Monday

4. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

5. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path

March 9, 2006 Blood Counts:

WBC: 0.4
HGB: 8.3
PLTs: 19
ANC: NA

 


Thursday, March 9, 2006 11:09 PM CST

BLOOD LAB WORK
While Nicholas looks great and is vibrantly shinning, his blood lab work today shows his Platelets (PLTs) and Hemoglobin (HGB) trending down significantly and out of range. As a result, very early Saturday morning we will be at LPCH Day Hospital for a PLTs and Red Blood Cells (RBC) transfusions. With the chemotherapy regimen that ended this past Monday, the blood counts going down before they start going back up is generally part of the process.

His Liver numbers are dramatically high, out of range so we are closely watching Nicholas and the doctors watching the numbers for intervention steps—this too can be part of the process, however, they have never been as high as they have been this week. And because God is always present we thankfully pray for His continued shielding of Nicholas, His child, from anything contrary to His perfect work.

NICHOLAS
This evening we went for a short drive and Nicholas wanted to tell stories using stuffed animals. And that is exactly what we did. The stories turned into memory games and at one point Nicholas said, “You know what, we can do math using the animals.” And that is exactly what we did. The animals were dogs, tigers, turtles, snakes, alligators, lizards, and dinosaurs. We used their individual characteristics to make up math questions and Nicholas really had fun—and we had fun seeing him really enjoy using his “noggin!” Mom & dad are blessed that he loves using his “noggin” in his every-moment, every-day way of interacting.

And he had an overall really nice day—love stops everything contrary to it!

QUESTION FROM NICHOLAS
Two nights ago Nicholas asked if the discoloration, light areas, on his skin would go back to normal (skin GVHD from the BMT that surfaced over the last several months). Previous discussions with the doctors enabled us to answer the question, saying that it would clear up over time. And while we think about “time” we constantly pray, knowing God is on our side so time, in a sense, is irrelevant as we think about… “God speed.” And yet we know it is a question that the answer may not provide Nicholas all that he really wants to know.

A friend reminded us of an analogy regarding Nicholas’ question. The analogy is: It is like looking up into the sky on a cloudy day; you know that the sun is there and when the clouds drift away it is shinning—and you are reminded that it has never left. So the coloration of Nicholas’ skin is like the clouds, the vibrant healthy skin is there and will soon shine through. We shared this thought with Nicholas.

NEXT STEPS
1. LPCH Day Hospital Saturday morning for PLTs and RBC transfusions

2. LPCH Clinic on Monday for blood lab work and examination

3. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended this past Monday

4. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

5. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path

March 9, 2006 Blood Counts:

WBC: 0.4
HGB: 8.3
PLTs: 19
ANC: NA

 


Wednesday, March 8, 2006 10:11 PM CST

ANOTHER VIBRANT AND LOVING DAY
From the beginning to the end of the day, Nicholas was cheerful and love was expressed from him and to him throughout the day. This evening, bundled up toasty warm, he was outside swinging on his swings. As it started to sprinkle the fun and laughter was in full flight as was Nicholas on the swing—like all of us at all ages, he loves the motion and the games played while swinging. On the swing is one of the places his uninhibited smiles simply warm our hearts.

(Have you swung on a swing this week, pushed your child or a child on a swing this week, or pushed your love on a swing this week? You know, we think the next time Nicholas’ grandparents (mom and dad’s) are visiting we will have to have them swing with Nicholas—the smiles and feeling of love all around will be so wonderful. We cannot wait to see Nicholas’ smiles at that time!)

As we are completing this journal thinking about the moment, the night, and tomorrow, we are truly living in the moment but with the thought and prayers of all of our tomorrows knowing that God will keep us strong and on His path. So while we do not know what our “tomorrows” will bring, living in the moment with God is so fulfilling—we pray for more and more moments loving and living with His love. And thankful for the many teachings being learned through Nicholas (Nicholas gives us gifts of love everyday along with the lessons)

NEXT STEPS
1. Blood lab work tomorrow (drawn at home and delivered to a local lab)

2. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended this past Monday

3. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of the miracles we have seen in Nicholas and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

4. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path

March 8, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, March 7, 2006 11:59 PM CST

VIBRANT, LOVING, LOVEABLE are words that describe Nicholas today. And lately, thankfully, they are words that describe him most of the days. During and after this afternoon’s LPCH clinic appointment Nicholas was, engaging! He really enjoyed talking with the staff at LPCH and we are so thankful that they “show up” in a more than caring way. When in the clinic, Nicholas and mom & dad are blessed to have such warm, caring, and loving conversations with the staff—yes, loving, because the level of attention and care is truly loving. And it is always pleasing when staff from 2North (where Nicholas stays when he is hospitalized) regularly come to the clinic to “engage” with Nicholas during our appointments.

CLINIC APPOINTMENT today was okay. Although his blood counts are dramatically low, there were no significant surprises with the blood counts or chemistry. There are a couple of things closely being monitored because of the low counts and/or counts/chemistry that are out of range. The doctors believe these issues are associated with the chemotherapy just administered. A pleasant surprise was the staff seeing and saying how great Nicholas looks. Aside from understanding all that Nicholas has gone through, he really looks great (as described above) and although we see it, it feels so good that others see it too.

NEXT STEPS
1. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended yesterday

2. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of this miracle and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

(Please refer to the March 1, 2006 and January 18, 2006 journals for the relative key information.)

3. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path

March 7, 2006 Blood Counts:

WBC: 0.5
HGB: 9.8
PLTs: 56
ANC: NA

 


Monday, March 6, 2006 10:57 PM CST

A NICE, MELLOW DAY
Today was a mellow day and what really felt good was the harmonious feeling that God continues to provide. We are so thankful that Nicholas has the ability to go from a restful period of time to energetic moments. It is like turning on the charm, however, he is just turning on being Nicholas—we know he is blessed and we are blessed with him.

While medically the second round of “modest” chemotherapy also brings about low blood counts and concerns associated with the lower counts, no doubt you have either seen or read these journals realizing Love that has guided & shielded Nicholas along the way.

TOMORROW (Tuesday)
Tomorrow we will be at LPCH for lab work and an examination.

NEXT STEPS

1. Next 2-3 weeks for the blood counts to recover from the chemotherapy that ended today

2. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of this miracle and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love.

3. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path

March 6, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Sunday, March 5, 2006 11:59 PM CST

ANOTHER NICE DAY
This past week has brought progress and joy: from last Monday (February 27) with the doctors saying “It is unexplained” regarding how well things have been turning around over the last 45 days, to this past Thursday (March 2) with Nicholas running for the first time since September 2005. And today was another nice day although the fight continues—the prayers and conversations with Nicholas about “all of this leukemia and bone marrow stuff” toward helping him and mom & dad overcome it all.

And a visit by the Nieuwsma girls (and their parents) and your thoughts and prayers along with the guestbook entries were certainly nice things today.

LAST DAY OF CHEMOTHERAPY AT HOME TOMORROW (Monday)
Remember, last Wednesday night we started a second round of a 5-day modest chemotherapy regimen. (Please refer to the March 1 journal if you missed that information.) It has been hard for Nicholas to receive medicine just about every waken hour; and mom & dad are really looking forward to tomorrow at 6:00pm when the 5-day regimen will be over. Then, it will be back to the twice a day administration of medicine he is on.

ALL OF THESE KIDS with leukemia and other life-threatening diseases are heroes—courageous and brave in the face of all facets of its awfulness. We pray for Nicholas and all of these kids to realize the strength through God and His love to overcome it all.

NEXT STEPS

1. Tuesday appointment at LPCH for blood lab work and examination

2. Next 2-3 weeks for the blood counts to recover from the chemotherapy that will end tomorrow

3. In about 3 weeks, with blood count recovery, another Bone Marrow Aspirate will be performed to check the status of the bone marrow. Praying for complete healing realizing God’s omnipotence, omniscience, and omnipresence. Praying for the continuance of this miracle and for all the glory to God, for Nicholas to continue to feel and know that he is loved and comforted, and for all to recognize His love

4. Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love for God. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path

March 5, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, March 4, 2006 10:43 PM CST

QUIET, RESTFUL DAY
Early trip to LPCH Day Hospital for a Platelets transfusion made up the morning and part of the afternoon and Nicholas slept most of the time. It was a quiet & restful morning, afternoon, and evening. However, this evening Nicholas spent time on his laptop and time just playing (you know, making up games out of everyday items and toys).

PRAYING AND CALLING OUT "FATHER" IS SO SOOTHING
A couple times, Nicholas wanted to just talk about things and—of course—we did just that. We are thankful that he lets us know when and what is on his mind so we can approach them together. We are thankful because “all of this leukemia and bone marrow stuff” can have so many things troubling any of us and talking about what is troubling continues the conversation about God’s love and that He “is an ever present help in times of trouble.” It is amazing how calling out His name, just saying Father, provides comfort to our hearts.

March 4, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, March 3, 2006 11:46 PM CST

NICE DAY
Quiet day at home, an evening visit by his friend (Cassidy) along with playtime, and time on his laptop with interactive-fun & educational DVDs made up the day. And as always, soothing conversations with mom and soothing conversations with dad reflecting on good things and prayers made the day complete (well, we pray it helps make the days complete for Nicholas too).

Oh, and several times today Nicholas was so happy to show us his ability to run again.

PLATELETS TRANSFUSION TOMORROW MORNING (Saturday)
Bright and early tomorrow morning we will be back on our way to LPCH for a Platelets transfusion. Blood lab work processed locally (not at LPCH) today revealed that the Platelets were down to 22 (target range is 150-400 and a Platelets transfusion has been performed when they drop into the teens).

LOVE HAS SO MANY WONDERFUL MEANINGS
We asked on previous journals things like: can you see it?, can you sense it?, referring to love radiating and illuminating within and around Nicholas. Love has so many wonderful meanings and with love there is no meaning to anything contrary to goodness. Love can be seen through whatever may seem to be contrary to it! Nicholas looks so good and he has been able to talk about & pray to help face/overcome things that have bothered him (sometimes this is a struggle in terms of understanding why, why, why...). We thank God for His love!

And thank you for your GUESTBOOK ENTRIES, truly they are so lovingly helpful to all of us!

March 3, 2006 Blood Counts:

WBC: 0.7
HGB: 9.6
PLTs: 22
ANC: 410

 


Thursday, March 2, 2006 11:59 PM CST

CAN YOU BELIEVE IT, RUNNING AND JUMPING
Since September 2005 Nicholas has had difficulty trying to just walk, along with all of the other challenges on the path that he has been on since November 19, 2004, since September 12, 2005, and since January 18, 2006 (please refer to the above caption for date correlation). However, through God love has filled our hearts and loving God has continually fueled our lives—especially when the path has had us on a roller coaster and sometimes a very, very slippery road.

Amazingly, tonight Nicholas treated us with another gift…“out of the blue” Nicholas surprised us saying, “I could run, watch!” Off he went walking down the hall, walking faster and faster. Then he began to lift up his knees at that fast pace…and he was running. After a couple of “runs” down the hall he said he could jump too. And he jumped, jumped, and jumped. As mom picked him up and embraced him, dad kissed his forehead. And Nicholas put his head on mom’s shoulder, and smiled.

Another blessing; what a difference loves makes!

FACING NEXT STEPS
Whatever the steps are in front of us, we take each one FOLLOWING God. It is hard, however, we do keep our focus also on the beautiful surprises along the way. Like we said in our November 3, 2005 journal, beautiful surprises are plentiful if we watch and listen, truly take moments to “watch and listen.” On November 3, 2005, like now, the song “Beautiful Surprise” by India Arie comes to mind. Following are some of the lyrics from the song:

“…You are a beautiful surprise

What ever it is you came to teach me
I am here to learn it cause
I believe that we are written in the stars
And I don’t know what the future holds,
But I’m living in the moment
And I am thankful for the man (son) that you are
You are everything I asked for in my prayer
So I know my angel brought you in my life
Your energy is healing to my soul

You are a beautiful surprise

You are inspiration to my life
You are my reason why I smile

You are a beautiful surprise”

And we thank God for Nicholas and beautiful surprises that make Nicholas smile.

Note: Blood lab work tomorrow morning.

March 2, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, March 1, 2006 11:59 PM CST

BONE MARROW ASPIRATE
Today’s bone marrow aspirate (BMA) revealed 40percent blasts (cancer cells) compared to 85percent from the January 18, 2006 BMA. Nicholas’ doctor was “Happily surprised of the outcome” based on the modest approach being taken because medically Nicholas would not be able to handle the toxicity of other chemotherapy efforts at this point. Of course we were praying for complete healing to be revealed; however, medically a reduction of more than half IS progress. And it is not just about progress, it is about the complete healing and the cancer to permanently stay away (it has no place in Nicholas).

AND WE REMEMBER, we know, that numbers do not have any power over Nicholas as we have witnessed over and over again with him. And we remember, we know, that God’s omnipotence, omniscience, and omnipresence is not bound by anything! Our faith, trust, and “believing” remains unmovable—and we thank God for His love of Nicholas that continues to be revealed through Nicholas’ smile, spirit, and passion for caring about others seemingly before he thinks about himself.

What was expected to be about a 7-hour day at the hospital turned into being over 12 hours today and Nicholas slept about 11 ½ hours. During the ½ hour he was awake, he kept pleading…“I want to go home now.” Aside from the BMA, Nicholas had several other procedures including a blood transfusion—he was tired of all the various bags of IV fluids/medication/blood after having gone through the BMA procedure and all that comes with being put under general anesthesia and the recovery process afterward.

BLOOD TRANSFUSION
Nicholas’ blood counts dropped again and today the Hemoglobin (HGB) was down to 7.6, requiring a Red Blood Cell (RBC) transfusion tonight.

NEXT STEPS
Tonight we started a second round of the 5-day modest chemotherapy regimen that was administered January 30 through February 4. This time, however, other than one medicine (Methotrexate, IV) all of it is being done at home versus the first three days we spent in the hospital January 30 through February 1. It can be done at home because this time the doctors are not concerned with what is called tumor-lysis (a breakdown of cancer cells that if the breakdown is rapid can cause other problems) because it did not happen before. It is highly unlikely it would happen this time so the doctor was comfortable with us doing this round completely on an outpatient basis.

After this round is complete, the doctors expect Nicholas’ blood counts to recover 14-21 days later. At that time another BMA will be performed.

Trusting and living the way God has planned is really all that we need to guide the next steps. As hard as all of this stuff is, we cannot do anything without God’s love and our love. And as hard as it may seem, we turn everything over to God and will continue to follow Him through whatever confronts our path.

HOW WE ARE FEELING
We arrived home just before midnight and in some respects, not surprisingly, Nicholas’ energy, enthusiasm, joy, etc. was flowing. For mom & dad, after the long day comforting, supporting, and understanding all that was happening and needs to happen, Nicholas gave us a wonderful gift—Nicholas being Nicholas—that has us feeling so much better. Love comes through!

As mom & dad talked about the path ahead, one thing continues to bounce back and forth right in front of us—we want to get off of this emotional and physical roller coaster! We talked about endurance in a recent journal, and endurance of such an emotional and physical roller coaster that we have been experiencing is more than hard to... We know we are blessed in so many ways, and it is all just so hard. And then we look at Nicholas, we see him experiencing so much turmoil over “all of this leukemia and bone marrow stuff” and we see him smiling and caring about others. We are loved, we are blessed, and we will love and not stop doing all that we need to do for Nicholas. After all, it IS all about Nicholas, just ask him!

March 1, 2006 Blood Counts:

WBC: 1.0
HGB: 7.6
PLTs: 33
ANC: 300

Tuesday, February 28, 2006 11:59 PM CST

SCHOOL DATE AT DVMS THIS EVENING
This evening Nicholas had another “school date” at Diablo Valley Montessori School (DVMS) with his teacher—Ms. Shirley—and Cassidy, Amanda, & Teddy. Although Nicholas vomited twice last night (Monday) and he woke up today (Tuesday) nauseous, vomiting once, he was certainly feeling better this evening and very excited about going to his former school tonight. And the excitement continued at school as his teacher and three friends (above) were all engaged in having fun, friendship, learning, and sharing love.

Love is the right word, again, as DVMS, the students (current and those when Nicholas was there 466 days ago), parents, and the entire student body & faculty have been more than anyone’s wildest dreams could imagine. Throughout this entire journey love has been constant everywhere and at all times—even when we have not known what we needed they have “been there” for our family like so many other friends and our families.

PICTURES from the “school date” should be posted tomorrow night on this site and the third album below under Links.

BONE MARROW ASPIRATE AT LPCH TOMORROW (Wednesday)
Early tomorrow morning we will be on our way to LPCH for the BMA. After recovering in the recovery room, Nicholas will be taken to the Day Hospital for two planned procedures that he has been receiving monthly: IVIG (immune booster) and PENTAMIDINE (administered to prevent pneumonia for patients who are immune compromised) will be administered through an IV. We expect to be at LPCH until approximately 5:00pm.

BEAUTIFUL NIGHT
Nicholas was singing and like his Song of Love playing in the background of this CaringBridge site, he was “playing and having fun” all night long.

NOTE: We are so grateful that the sporadic nauseous feelings over the last several weeks have not materialized into “anything!”

February 28, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, February 27, 2006 11:59 PM CST

LPCH APPOINTMENT: GOOD CONDITION IS “UNEXPLAINED”
The WBC has doubled from last Thursday’s blood draw/analysis although it is still low and out of range. However, the bone marrow aspirate (BMA) scheduled for this Wednesday can still take place enabling us to learn the current status of the marrow. During the BMA, marrow will also be secured and sent off for a Chimerism analysis. Remember, the Chimerism analysis will assess the donor cells at work in the marrow (including the percentage). Note: Please refer to the November 4, 2005 journal for the latest journal talking about Chimerism.

Nicholas has been vibrant and looks good—his skin, demeanor, and overall personal outlook. His chemistry levels (from blood lab work) are looking good—example, levels linked to his liver and kidneys. And love is clearly shinning through in everything within and around Nicholas. Today, one of Nicholas’ doctors said, “It is unexplained” regarding how well things have been turning around over the last 45 days. The doctor said this Wednesday’s BMA should provide some answers and he has an overall good feeling about it. Of course, we give thanks to God for guiding Nicholas as He constantly has guided him along the way through what has been and are troubling times, and what has been and are good times.

TWO MEDICINES STOPPED: Based on Nicholas condition and blood lab work, beginning today we are able to stop two medicines: One, Gancyclovir that we have been administering via IV 3 times per week that was part of the treatment for the CMV that reactivated on December 26, 2005. Two, Actigall which was being administered orally to protect the liver—the doctors will monitor and watch the liver enzymes via blood work to ensure the liver function remains okay. Stopping the Actigall means 2 less pills per day for Nicholas, and boy was he excited about that, as were we. Progress! What a lovely word!

While we do not know what the “tomorrows” will bring, we know that God’s love everyday will bring about love in everything that unfolds. And our feeling regarding what is “medically” unexplained is that we know why—thank you Lord. We pray for God’s guiding of the doctors’ minds and we really appreciate all that they do medically. And we pray that God continues to baffle the doctors, providing more proof for them to “Believe” more and more. We just thank God for His love and pray for all to see His omnipotence, omniscience, and omnipresence.

February 27, 2006 Blood Counts:

WBC: 1.5
HGB: 8.0
PLTs: 58
ANC: 300

 


Sunday, February 26, 2006 11:59 PM CST

FRIENDS, FUN, AND ALWAYS…LOVE
The rain did not stop Nicholas from having a warm, loving day. Friends made up the afternoon & evening and Nicholas had fun! We pause throughout the day knowing that love is actually completing our days, completing our days in terms of truly being “complete” days. We talk about love in these journals virtually every day, not just be hopeful, and not to be redundant, we talk about love every day because we know by seeing and feeling that love always begets love.

Reflecting back over the last 45 days—well actually over the last 464 days—love has brought us to today and we trust & believe in God’s love & words to carry us every day. We could not have imagined the love we have been seeing in Nicholas and the love from all of you, without God’s love.

THANK YOU
All of you who are directly and indirectly engaged with Nicholas and our family make such a positive difference in our lives and we praise God for you. And we just love your guestbook entries for the “circle of love” that they demonstrate—thank you.

LPCH CLINIC TOMORROW (Monday)
Tomorrow we will be in the clinic for lab work (blood counts) and examination to prepare for a bone marrow aspirate Wednesday. While the bone marrow aspirate is scheduled for Wednesday, it is based on the blood counts continuing to rise toward the target ranges. Specifically the WBC needs to rise higher than the 0.8 this past Thursday. AND we know because we continue to see and experience that through God everything is not only possible, everything can be…

February 26, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, February 25, 2006 11:20 PM CST

A WALK BRINGS ABOUT LOVE IN MANY WAYS
This evening we took Nicholas on a short walk down the bike trail and up a hill, all within 600 yards of our home (Nicholas walked a little bit once we got back to our court). On top of the hill Nicholas was able to look out from the ridge seeing our house and the surrounding hills making up a valley. There were “whispery” type clouds and it was so nice to see a portion in the western sky that was partially cleared enabling the sun to shine through providing a pretty sunset.

As we walked back onto our court we talked with one couple (neighbors), they walked with us down the court where another couple, and another neighbor came out to talk with Nicholas. We had a very nice walk and the love felt along the way from the scenery, nature, and neighbors was absolutely perfect.

NICHOLAS SAID, after taking a deep breath as we began our walk, “I just love outdoors!” Mom & dad know that Love enables Nicholas to be happy and we thank God because we understand how things could be medically, and how things could be without Him.

NOTE: While the bone marrow aspirate is scheduled for next Wednesday, it is based on the blood counts continuing to rise toward the target ranges; specifically the WBC needs to rise higher than the 0.8 this past Thursday. AND we know because we continue to see and experience that through God everything is not only possible, everything can be…

February 25, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, February 24, 2006 11:59 PM CST

KNOWING WE WALK WITH OUR LOVING GOD—PROVIDER AND PROTECTOR
Below are words we have spoke about often, that have helped us along Nicholas’ journey. And it is not just about the words, it is about knowing, trusting, and seeing God’s perfect work through and in Nicholas—AND praying and believing God’s love for all of these kids is all that all of these kids need and have.

“I walk with God along the way, and oh, it is a joyful-dominion day. No more I suffer cruel fear, I feel God’s presence with me here. The joy that none (and nothing) can take away is mine, I walk with God today.”

“Green pastures are before me, which yet I have not seen. Bright skies will soon be over me, where darkest clouds have been. My hope I cannot measure, my path in life is free. My Father has my treasure, and He will walk with me.”

NICHOLAS: SNAPSHOT OF THE DAY
· Waking up happy and playful in bed

· A walk in the front yard feeling the warmth and beauty of the day

· Planting an acorn starting to sprout that was planted in one of mom’s planters by a squirrel—Nicholas named the acorn plant “Squirrelly” and placed the new planter on the picnic table connected to his play structure

· Playing on his play structure—climbing up the climbing structure just about all by himself. AND we thank God for Nicholas’ courage, determination, and actions to try climbing by himself!

· Short walk on the bike trail (a couple houses away from our house)

· Board games

· Making pendants out of Crayola Model Magic (modeling compound)—I think they were made to be given away, however, I do not know to who. He also made little balls that bounce so I think we will be bouncing these around tomorrow, as they will then be dry

· Talking with friends on the telephone

· Watching a swashbuckler type movie

· Medicines administered at noon and midnight

· Love, prayer, and love throughout the day and night

NOTE: While the bone marrow aspirate is scheduled for next Wednesday, it is based on the blood counts continuing to rise toward the target ranges; specifically the WBC needs to rise higher than the 0.8 yesterday. AND we know because we continue to see and experience that through God everything is not only possible, everything can be…

February 24, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, February 23, 2006 11:59 PM CST

AND ANOTHER GOOD DAY
Nicholas had another good day although it was a rather quiet day in terms of activities. He looks great, he is full of spirit, and he expresses joy! Mom & dad are grateful that he is happy and we are so happy that he understands things in relative terms. (We are using “things” in a general way in place of physical activities while on "this journey.")

What we mean here is that while he cannot run and jump like he is use to doing, he tries to do the those things and at times will say, “you know I can’t run and jump but I will try.” He says these things in a positive way at times; sometimes he wants to talk and pray about these things. While we are happy about his approach, we are also sad that he has to face these things. There is so much more to life than physical things and the fact that he still does these things—the best way he can—generates smiles from us and we are so happy to witness smiles from Nicholas. And we thank God for Nicholas smiles and approach.

And we know that "this journey" is and can be whatever and however God charts the path for it to be.

Note: While the bone marrow aspirate is scheduled for next Wednesday, it is based on the blood counts continuing to rise toward the target ranges; specifically the WBC needs to rise higher than where it is now at 0.8. And we know because we continue to see and experience that through God everything is not only possible, everything can be…

February 23, 2006 Blood Counts:

WBC: 0.8
HGB: 8.6
PLTs: 74
ANC: 130

 


Wednesday, February 22, 2006 11:59 PM CST

ANOTHER GOOD DAY
Nicholas had an uneventful medical day (no pain and no issues, just the way we like it). He has not had much of an appetite over the last month or so, however, today he ate much better. Nicholas really enjoyed mom’s dinner: Caesar salad, steak chasseur, sautéed potatoes, broccoli, French bread, and sparkling apple cider (he calls it “appling cider”).

And tonight he was so happy to have his nanny, Kimmy, come over for a visit.

LABS TOMORROW (Thursday)
Because Nicholas has been doing well, tomorrow morning mom will do a blood draw at home and we will drop them off at a local lab for analysis versus going to LPCH. Results will take longer to be known, maybe by 3:00 pm.

SNAPSHOT OF NEXT WEEK
Monday we will be at LPCH for labs and examination, followed by Wednesday at LPCH for two procedures received monthly and a bone marrow aspirate with LP for intrathecal chemotherapy.

We are very, very grateful for the many blessings upon Nicholas; and we are so happy that blessings enable Nicholas to have smiles, laughter, and prayer through occasional sadness as daily there are some pretty hard times to deal with—times facing or going through activities that many would take for granted.

February 22, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, February 21, 2006 11:59 PM CST

GOOD DAY
Nicholas had a good day; this afternoon he was outside enjoying the freshness and fun of just being a kid at play. After riding his battery-powered Jeep in the front yard, he talked with friends out front and sat on our wooden bench under an Olive tree talking (like a Norman Rockwell moment), playing, and having fun.

From riding his Jeep in the driveway with Sage on her inline skates, to sitting with Gabrielle, Danielle, Andrew, and Blake he was happily enjoying this beautiful part of childhood—kid talk, play, and fun.

Please CLICK ON View Photos: Nicholas relaxing with his Nickelodeon magazine and Nicholas with a Carmel apple made by mom.

February 21, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, February 20, 2006 10:33 PM CST

NICE DAY, BMA SCHEDULED FOR NEXT WEEK
Nicholas’ lab work and check up at LPCH went by quickly today—this was a nice change versus having to stay the better part of the day for other procedures.

The blood counts are still low and out of range although the white blood count (WBC) has risen along with the platelets (PLTs). However, Nicholas is still Neutropenic referring to his absolute neutrophil count (ANC). (Patients that are neutropenic means they are immunosuppressed & at risk for infection and unable to adequately call on their own “immune defense system” because chemotherapy impacts the blood counts causing them to go down. Nicholas’ immune system has been compromised because of the recent chemotherapy; however, we are very, very grateful that he has not contracted a fever or infections.)

Next Wednesday, March 1, another bone marrow aspirate (BMA) has been scheduled to check Nicholas’ bone marrow, assess for leukemia. We pray that not only a decrease in the percentage of leukemia is present since the January 18 BMA, we pray that through God it is found to be free of any leukemia—a miracle through God. We know that Nicholas has been blessed and we pray for continued blessings and all of the glory to God. We, again, thank you for staying with us on this heart-wrenching journey. It continues to be an awful journey medically and physically and it continues to be a journey full of blessings every day. Because of love, Nicholas continues to find ways to face the medical and physical challenges!

Gratefully, his liver enzymes have improved and this is important medically because it means that another round of chemotherapy could include medicines that are a little more intense if necessary. Without liver enzymes in range there would be a great risk of using some of the more intense chemotherapy medicines as they could negatively effect the liver.

NICHOLAS
Nicholas’ playfulness and fun nature were present throughout the afternoon and evening. He was physically active and mentally displaying knowledge that he picks up from everything, literally everything and everyone, he comes into contact with. His alertness and ability to retain information to recall later is amazing. From physical play with dad and using his "noggin" with mom & dad he has mom & dad smiling.

IT IS NOT THE MATERIAL THAT GOVERNS NICHOLAS’ LIFE
We have said it before and live it every day—we walk with God along the way and “oh” it is a joyful, dominion day! So while medically the doctors have said what they have said, we truly see Nicholas shinning through the awfulness of leukemia. We believe, we trust, and we love God for His love.

February 20, 2006 Blood Counts:

WBC: 0.8
HGB: 8.7
PLTs: 78
ANC: 100

 


Sunday, February 19, 2006 11:11 PM CST

ANOTHER NICE DAY
Although Nicholas vomited after waking up, he ended up having a nice day just relaxing at home, playing video games with mom, playing Zathura (a board game our friend Cyndi brought over today), and watching a little TV with brother Chris & dad. Nicholas fell asleep while brother Chris followed his request to be “patted”. It was wonderful to see him snuggle next to his brother and fall asleep. It’s always nice to see him interacting with one of his three older brothers.

As we continue to pray for a miracle from God, we do know that each day we are given is truly a miracle. We thank God for the miracle of today.

Note: Lately we have not mentioned Nicholas’ walking that has been hampered the last four months although after the first two months of the four it has steadily been getting better. His walking continues to get better and we are grateful that he does not express concern like he did during the first three months of the four. This too is a blessing—we do not see it as an improvement toward recovering what Nicholas had, we see it as improvement!

LPCH TOMORROW (Monday)
Tomorrow we will be in the clinic for lab work to find out if the blood counts are rising toward target ranges so we can schedule a bone marrow aspirate (BMA) for later in the week. The BMA is to determine what impact the recent treatment has had on the bone marrow since the January 18, 2006 BMA and its findings. However, we turn everything over to God and trust Him completely. And, we are so grateful that even with the January 18 news there has not been any leukemia in Nicholas’ peripheral blood—this is a blessing and we thank God.

(As we have said before in these journals, we trust and thank God every day not just when the days are the way we like them. It is not just a feeling of being lucky sometimes; it is knowing that with God we are blessed every time.)

February 19, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, February 18, 2006 11:59 PM CST

GREAT DAY, GREAT NEWS, GREAT EVENING
Simply stated, Nicholas had a great day from beginning to end. And in the middle, we received great medical news—February 16’s spinal fluid lab work has been completed and no leukemia was detected, and cultures for bacteria and viruses were negative. (Linking back to the February 16 journal the spinal tap was performed because of recent headaches…) No headaches and no stomach pain at all today!

Before the medical news and after, Nicholas was up and about “playing and having fun.” This evening Kaeli and her mom, Theresa, (our LPCH and Ronald McDonald House neighbors and now friends met during our stay March-July 2005) visited and there was laughter, friendship, and more “playing and having fun” throughout the house.

PLEASE CLICK ON View Photos for a peak at his smile today and playing “Whoonu,” a really fun-filled “what’s your favorite thing?” game. (Thanks Dave and Janie.)

What a difference a day makes. What a difference God makes in our days—or we should say, what a difference in our days because of God! We are grateful for every day and the blessings throughout the days. We are so thankful that there really are blessings, not just a blessing, throughout our days.

February 18, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, February 17, 2006 11:59 PM CST

Nicholas did not feel too well today; his stomach and head bothered him sporadically throughout the day. However, he also had smiles and laughter sporadically throughout the day although it was a quite day in terms of activities for Nicholas. Love is never over used and love is the constant that provides comfort even during quiet days.

Oh, and when he hears the sound of coins or sees money, that sure does make him for better for a moment Have you notice that in a lot of pictures taken of Nicholas, money is near by? Either coins or bills in his hands. He is really good at saving his money and has several places where he keeps it (piggy banks, metal money tray/box, his wallet, etc.) He is also really good about sharing, yes sharing, his money; for example, when we cross the bridge he likes to pay the toll and even when his brother asks for lunch money Nicholas likes to offer to give it to him.

Last night dad gave Nicholas a one dollar bill for something (we do not remember because there are a lot of times Nicholas does something for a penny, dime, quarter, dollar...) and the only dollar dad had around was one of Nicholas'. After giving that dollar to Nicholas, Nicholas said wait this was already my dollar, see this is the tear and mark one of my dollars has on it. Then dad remembered, Nicholas looks at all of his money. (Remember, he places his money in various places and sometimes it is based not only on the denomination, also the condition.)

Today (Friday) there were no other results from yesterday’s spinal tap so maybe tomorrow. We are so glad God is in our lives; we could not do anything within our lives without Him-well, do it feeling the level of love and comfort that is needed. And as always, all of you provide blessings to Nicholas, mom & dad, and our other three boys in the ways that you do (you know, thank you).

February 17, 2006 Blood Counts:

WBC: 0.4
HGB: 10.7
PLTs: 47
ANC: 30

 


Thursday, February 16, 2006 11:59 PM CST

LPCH CLINIC: TWO UNEXPECTED PROCEDURES
Nicholas woke up with a headache again and at that time it was two full days of sporadic headaches. Low Hemoglobin can cause headaches so this morning’s lab work we expected to see just that. However, results of today’s labs did not reveal low Hemoglobin to the point where it should be causing headaches. The doctors went down a list of medical things that could be causing the headaches and for the first step they examined Nicholas neurologically and had him perform some things while laying down on the examining table—good news, everything appeared to be okay.

CT SCAN: The next step was to do a CT Scan of Nicholas’ head. So the first of two unexpected procedures was performed today—good news, the CT Scan was clear.

SPINAL TAP: The second of two unexpected procedures was to perform a Spinal Tap. Because Nicholas had taken his noon medicines and had a little to eat, they could not sedate him to perform the procedure in the operating room under anesthetics. So the Spinal Tap was performed after administering Ativan to relax Nicholas and applying some numbing cream as well as “cold spray.” After a series of questions from Nicholas, he likes to understand everything that happens before it happens, he amazingly laid his head down and the procedure was performed. Sitting up between, and facing, mom & dad, he laid his head on mommy and daddy’s shoulders while dad embraced and held him lovingly close to ensure he would not move during the procedure.

With the Spinal Tap a few things are important to determine: 1) If there is any leukemia in the fluid—good news so far is that the fluid looks clear; 2) If there is any pressure in the fluid—good news, there was none so this is a good indicator that nothing acute and dangerous is present, 3) If there is anything growing from the fluid that could be causing an infection—results should be known within 24-36 hours.

OTHER NEXT STEPS
Tomorrow we will have blood work analyzed at a local lab, so Nicholas will not have to get up early to go to LPCH. This coming Monday we will be back at LPCH for lab work and if his blood counts are showing recovery toward target ranges a bone marrow aspirate will be scheduled for later in the week.

WHAT WE ALWAYS EXPECT
Every day fears surface around all this leukemia stuff that are so very hard to explain, and hard to understand. And we know that every day as all of us go about our lives there could be very, very serious fears that have nothing to do with leukemia. And, we know, we pray, and we truly give thanks for God’s constant presence in our lives! We trust His love that has comforted us along this awful journey and trust His love to always guide, direct, and shield Nicholas. He has not let us down and He cannot because He is God. So when we think about all that is going on, we first think and praise God for his love that WILL lovingly see us through it all. We believe it because He has been doing it.

AND THIS EVENING…OUR SUNSHINE WAS LIFTING OUR HEARTS IN PRAISE
So a clinic visit for just labs and general examination turned into a 6-hour day at LPCH. After the Spinal Tap when one of the nurses was routinely following up with some questions of Nicholas, she asked Nicholas if he still felt dizzy and if he still had a headache. Nicholas said no to both questions and after she left Nicholas said to mom & dad with a grin on his face, “She just asked me those questions for no apparent reason!” He was definitely feeling better.

And tonight at home he was full of smiles and fun—what a difference fully concentrating on God’s love reveals. While it was a terrible day in some respects, we know that it was a blessed day in many more respects—Nicholas is smiling and having some fun.

February 16, 2006 Blood Counts:

WBC: 0.7
HGB: 9.8
PLTs: 44
ANC: 70

 


Wednesday, February 15, 2006 10:39 PM CST

ANOTHER QUIET DAY
While today Nicholas rested almost as much as yesterday, his energy level was a little better and this afternoon his enthusiasm and fun nature was happily present. Then, he rested for another long stretch.

LPCH CLINIC TOMORROW (Thursday)
Tomorrow we will be at LPCH Clinic for lab work, focusing on blood counts to ensure levels are not too low requiring blood transfusions that can be part of the recent chemotherapy administered.

ENDURANCE
Endurance—sustaining patience of overcoming some stressful times—was one of the things we understood would be important to recognize from the onset of this journey. While endurance has taken on additional meaning with the challenges faced over the last couple of months, gratefully we have lifted our hearts, minds, and Nicholas to God and He continues to bless and guide us in a number of ways.

February 15, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, February 14, 2006 11:59 PM CST

QUIET DAY
Nicholas slept just about the entire day and it when we least expected it he got up this evening saying, “That’s it, I’m out of here!” He got up and left the family room. So from sleeping all day, when night fell and he awoke to a movie he said he has seen before that was selected for mom, we guess the relaxing environment was no longer. It really felt good to hear the energetic, fun nature in the way he said, That’s it, I’m out of here. And then seeing him get up and walk to his room with a grin on his face and sparkle in his eyes had us thanking God for his love for Nicholas.

Oh, after going to his room and then going to say hi to two of his brothers he came back to the family room.

Although we are scheduled for lab work on Thursday, because of his low energy level and headaches today we may arrange to go to a local laboratory tomorrow morning to have his blood counts determined to check his Hemoglobin (oxygen/energy indicator). This would be done to ensure a red blood cell transfusion is not needed based on the medical expectation that blood counts would have started to “bottom out” this past weekend before recovering.

LOVE EXPRESSED, EVERYWHERE
Nicholas sure found energy in thinking about having his favorite dinner: shrimp tempura, salmon/chicken teriyaki, and California rolls. And dad was off to the Blue Gingko, Nicholas’ favorite Japanese restaurant. And love really is expressed and felt everywhere as tonight while picking up the dinner dad had a warm, caring conversation with a “stranger in person,” however a “loving friend in spirit” through this CaringBridge site. Dad was recognized from pictures on the site and it was another blessing to be able to share thoughts and love for God through the conversation.

NOTE: Thank you, everyone, for your Valentine's Day messages, thoughts, and/or prayers! Like Christmas and "...I wish it could be Christmas all year long...," it could be Valentine's Day all year long so we can all do the loving things that we dream of doing as we dream them.

February 14, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, February 13, 2006 10:17 PM CST

GOOD LAB AND ULTRASOUND RESULTS
Nicholas’ lab results today were very good: 1) Still no leukemia in the peripheral blood, 2) The chemistry—monitoring of the pancreas, kidneys, liver, etc. reveals the enzymes are in targeted ranges, and 3) The results of last Thursday's lab work regarding some sores in his mouth are negative (good) & the sores have cleared up. Also, another ultrasound was performed and the Pancreas looks better (linking back to the February 6 journal and ultrasound).

The blood counts are still low and out of range as a result of the recent chemotherapy (today’s counts are above with targeted ranges, or below). However, amazingly, Nicholas is doing really well! We praise God for His protection and guidance; and as we think about the last 451 days we praise God for His consistent protection and guidance. As we have said before we do not know what tomorrow will bring; however, our trust and faith in God will be as strong as ever and "we know" God’s love will be as strong as ever.

NEXT day for lab work will be this coming Thursday.

NEXT bone marrow aspirate may be performed late next week if Nicholas blood counts recover close to targeted ranges.

MIRACLE, MIRACLES
We have not given up and continually pray that the leukemia the doctors reported in the bone marrow on January 18 not only continues to stay out of the peripheral blood, we naturally pray—and believe in miracles through God—that the next bone marrow aspirate reveals the bone marrow to be free and pure without any leukemia.

February 13, 2006 Blood Counts:

WBC: 0.4
HGB: 9.8
PLTs: 53
ANC: NA because some information is not available when the WBC is below 0.6

 


Sunday, February 12, 2006 11:59 PM CST

BEAUTIFUL SUNDAY
Nicholas and mom spent the afternoon away from home (and we were not in the hospital or clinic, yeah!), at our family friends, the Nieuwsmas. Along with the Nieuwsma’s four girls, Nicholas baked cookies, played music, and other fun & relaxing things that make time with friends a blessing.

NOTE: If you have not seen the pictures from Friday's celebration at his former Montessori School or Saturday's visit by grandma and grandpa (Sheila's parents), please access the third album below under Links and scroll toward the end of the album.

LPCH CLINIC TOMORROW (Monday)
Tomorrow, Nicholas will be back at LPCH Clinic for lab work and an ultrasound (the ultrasound links back to the February 6, 2006 journal). While our minds are consumed with all of the “leukemia and bone marrow stuff,” our hearts are comforted through God’s love and we are so thankful His love provides all we really need.

So Clinic tomorrow and Thursday, and next week it is medically expected Nicholas blood counts will show signs of recovering from the January 30-February 4 chemotherapy. So late next week a bone marrow aspirate may be performed to check the marrow to see what impact the chemotherapy had on the leukemia to help determine next steps, or another 5-day round of the treatment received the week of January 30 will be administered.

February 12, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, February 11, 2006 11:59 PM CST

MORNING SURPRISE, AFTERNOON FUN
Nicholas woke up to a double surprise—grandma Charlotte and grandpa Floyd came to visit. For mom, having her mother and father sharing the beautiful day with Nicholas was a warm, loving gift.

The afternoon with grandma and grandpa was picture perfect: from a picnic on the picnic table of Nicholas’ play structure, to having grandma climbing up to the clubhouse atop of the structure to be with Nicholas, to just plain old fun with grandpa outside.

THANKFUL, TRUSTING, BELIEVING
While Nicholas continues to brightly shine from the sparkle in his eyes to the joy illuminating from his heart, 24-hours a day for over one year & two months now there are some very difficult moments, hours, and days. Knowing the difficulty that Nicholas has had with navigating some parts of this awful journey, it is simply amazing how he daily feels the love of God uplifting him above troubling times. It is simply amazing to see the sparkle in his eyes and joy from his heart!

As difficult as it is for Nicholas, and mom & dad, we are thankful for the trust and belief in God that does not let us down. The trust and belief are indestructible as we continue to see and feel Love manifesting in Nicholas. Can you see it? Can you feel it? Love, miracles…yes, where there is great love, there are always miracles—absolutely.

February 11, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, February 10, 2006 11:59 PM CST

TODAY, TONIGHT WE CELEBRATE LOVE
A quote was shared by Regina on the Guestbook today and it was so fitting, another expression of God’s love and its manifestation in Nicholas. The quote by Willa Cather, 20th century American novelist: “Where there is great love, there are always miracles.”

And if it was just one thing that Nicholas has and receives, it is love. Love continues to be the one thing that is ever-present in and around Nicholas. Do you see it in his eyes, his smile, and sense it from his heart, his caring about others? We hope you do see it, sense it, and can feel it. It is God at work in Nicholas; and we thank God for you being in our lives and the love you provide.

TODAY’S OBSTACLE-COURSE CELEBRATION
(SEE PICTURES by accessing the third album under Links)
Nicholas’ former classes at Diablo Valley Montessori School put on an absolutely wonderful belated birthday celebration today. The various classes created an obstacle-course celebration where there were several obstacles: 1) Students rode a bicycle around pylons, 2) pushed a stroller around pylons, 3) walked across a balancing beam, 4) crawled through a tunnel, 5) rode a wooden horse, and 6) pulled a tire. At the end of each obstacle was an instrument and each time a student reached the instrument that student would play the instrument and loudly sing (or say), “Happy Birthday Nicholas.”

Toward the end of the celebration, his teacher, Ms Shirley told Nicholas’ birthday story along with mom. Nicholas, carrying a globe, circled around a fixed item once for each of his six years. The item was a couple of feet in front of him so it was almost like turning around "in place." After circling the fixed item, mom shared information about Nicholas for that corresponding year. Then he received an instrument called a Melody Harp with lots of sheet music. Remember, this is the instrument also talked about in the January 26, 2006 journal and pictures from that day on the third album below under Links.

Nicholas received "tons" of love and had a great time! We hope everyone felt Nicholas’ love for them as well.

NICE DAY
Well, you can probably tell that Nicholas had a very nice day. And the evening was nice as well—love really does make everything better and mom & dad are so, so glad and know that we are blessed to be able to be loving Nicholas night and day, all along the way. While we do not know all that tomorrow will bring, we do know that it brings God’s love and His omnipotence, omnipresence, and omniscience. And in His love we will be guided, directed, and shielded.

February 10, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, February 9, 2006 11:59 PM CST

LPCH CLINIC APPOINTMENT AND BACK FOR PLATELETS TRANSFUSION
The clinic appointment went well. We noticed some sores developing on the roof of Nicholas’ mouth and a few on his cheeks, he has never developed mucositis so we weren’t sure what they were. They swabbed them today and have sent them off to the lab to check if there could be a sign of a virus starting or just mucositis from last week’s chemotherapy. He complained only once last night (Wednesday) of slight pain in the mouth during medicine time but then nothing after that.

Because everything is going well there was no reason to wait for results of today’s lab work (the staff would call us with the blood counts and other factors). However, we prefer to wait for the results based on last week’s chemotherapy and it worked out okay because we scheduled our tax appointment for late afternoon at our accountant's office in Los Altos (near LPCH so this was very fortunate). After leaving the clinic, while at our tax appointment, we got a call with the complete lab results. Nicholas’ platelets had dropped considerably (part of the chemotherapy process) and should get a platelets transfusion. So we wrapped up our tax appointment and went back to LPCH for the transfusion. Needless to say, it was a long day and we were back in Lafayette just in time to catch Nicholas’ favorite Japanese restaurant still open by about 10 minutes. Nicholas had his favorite: shrimp tempura and California rolls. We are glad he still has his appetite from the steroid pulse last week.

GOOD NEWS: There is still no leukemia in Nicholas’ peripheral blood and we praise God. The staff is still not sure what to make of it based on the January 18 bone marrow aspirate results, and we quickly praise God, a loving God. We praise Him for shielding Nicholas and Nicholas’ continued joy. Nicholas has been in good spirits all day and full of energy.

ANOTHER BIRTHDAY CELEBRATION?
Tomorrow afternoon (Friday) we will be at Nicholas’ former school because the school and classmates want to celebrate his birthday. They will be outside performing a little obstacle-course celebration for Nicholas and singing happy birthday to him since they could not do it sooner due to the weather and Nicholas' schedule around his actual birthday. Nicholas and mom & dad are looking forward to the additional joy around Nicholas. Ms. Shirley, his teacher, is an angel here on earth—she just loves Nicholas and we are so grateful. In fact, although Nicholas has not been at his Diablo Valley Montessori School in 447 days, they have been amazing with their support, teaching, and love from the administration, parents, and students.

February 9, 2006 Blood Counts:

WBC: 0.5
HGB: 10.4
PLTs: 17
ANC: NA because some information is not available when the WBC is below 0.6

 


Wednesday, February 8, 2006 11:59 PM CST

BE GLAD, REJOICE, GIVE THANKS
What a beautiful day for Nicholas and we are reminded to “…be glad, rejoice, give thanks, for this is the day the Lord has made…” And we do give thanks for the day, the morning, the afternoon, the evening, and the night. Nicholas was outside this afternoon enjoying the sunshine and this evening he was playing and having lots of fun with some of our neighbors. Five of them spent a good portion of the evening at our home playing with Nicholas throughout the house.

What came to mind as they were playing, laughing, and moving throughout the house was that this is “A child’s life” full of all that you would want it to be. And we give the glory to God for lighting up Nicholas’ life!

PLEASE CLICK ON “View Photos” to see Nicholas and the neighbors that came over tonight.

LPCH CLINIC TOMORROW
Tomorrow afternoon Nicholas will be in the LPCH Clinic for lab work. And we pray for continued rejoicing, that Nicholas continues to be a light illuminating God’s great work.

February 8, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, February 7, 2006 11:59 PM CST

WHATEVER YOU ARE DOING, KEEP DOING IT
These were the words from one of Nicholas’ doctors yesterday to mom & dad referring to how well Nicholas is doing, “Whatever you are doing, keep doing it!” And what we are doing is trusting and believing in God’s love, His plan, His guidance, and His direction. And once again, we are thankful for all of YOU trusting, believing, and loving with mom & dad along the way...and the prayers around the world.

WE DO NOT KNOW WHAT THE FUTURE HOLDS, EXCEPTS GOD’S LOVE
We do not know what the future holds, however, we trust, believe, and love God—and through Him we are "living" a blessed life. And part of that blessed life is learning, loving, and living for God. And many times it has been so hard in many different ways, and yet throughout each day we are so thankful for God’s love and the manifestation of Love and Spirit throughout Nicholas—just look and listen to Nicholas and you see what we mean.

NICHOLAS
Today, Nicholas spent time on the back patio painting, in the front yard talking and playing with the neighborhood kids (controlling the environment because of the ANC), and on his computer creating Word documents while playing and practicing the spelling of words (and creating other documents for fun). What blessings!

February 7, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, February 6, 2006 10:50 PM CST

ANOTHER FULL DAY AT LPCH
Although today’s clinic appointment was just for lab work and check up, it was a full day based on results from some of the lab work. The Liver enzymes were dramatically high, out of range. An ultrasound of the stomach was performed and although the Liver appeared to be okay, the Pancreas was swollen revealing a touch of Pancreatitis. Thankfully, the Pancreas enzymes are in range.

A patient with full Pancreatitis would be hospitalized to rest the gut with IV nutrition and have IV fluids administered. However, that is not needed in this case. Another ultrasound will be performed next Monday. Some of the medication from last week’s 5-day treatment can cause Pancreas issues.

NEXT STEP
Thursday we will be back at LPCH for lab work.

WHAT WE KNOW MATTERS MOST
Trusting and believing…continues to help mom & dad get through the days and nights; and because Love and Spirit operates within Nicholas we trust and believe God's continued guiding and shielding of Nicholas! God before us, God behind us, God within us every day and every step of the way. Nicholas IS surrounded by God and it shows. God is the same yesterday, today, and will be tomorrow, and forever-we are thankful for His love.

February 6, 2006 Blood Counts:

WBC: 0.6
HGB: 11.4
PLTs: 60
ANC: 400

 


Sunday, February 5, 2006 11:59 PM CST

NEW-NORMAL DAY (and it was very nice)
Nicholas’ ANC (essentially meaning his ability to fight infection) can not be calculated because his WBC is below 0.6, which means at this time he medically does not have ability to fight off infection. However, it does not mean Nicholas cannot enjoy himself, enjoy others, and have a nice day—as long as we control the environment. Nicholas had a very nice day and one of our family friends (Dave, Janie, and their four girls) were screened enabling Nicholas and mom & dad to spend an absolutely wonderful afternoon/evening with them.

Aside from playing with the girls, our two families went on a short walk. Nicholas thoroughly enjoyed feeding ducks and seagulls. He especially liked throwing bread up into the air and watching the seagulls catch it in mid-flight.

Note: We continually thank all of you for your direct and indirect support and love for Nicholas and our family. Once again, amazing friends (this time Judy and Greg) had a fun afternoon planned for today with Nicholas joining several school friends and others where the boys would be at one house, girls at another, and the parents at their home for a great time for all during the Super Bowl. Based on Nicholas’ ANC we were unable to join this party—and we are so thankful that God always, always provides for us.

CLINIC TOMORROW AND NEXT STEPS
We will be at clinic tomorrow to check blood counts and chemistries. It is expected that the 5-day pulse of chemotherapy medicines administered this past week will drop all of his counts considerably. We will be on close watch for fever or any other signs of infections due to the counts being low. Once the blood counts recover (2-3 weeks) Nicholas' bone marrow may be checked again to see what impact the chemotherapy had on the leukemia to determine what our next steps will be, or another 5-day round of the treatment received last week will be administered.

One day at a time surely has a new meaning for the Gilbert family. And one day at a time our love for God continues to grow; one day at a time we are amazed at everything about Nicholas in terms of his ability to chart his own path with God; and one day at a time we will continue to really work at being better in all aspects for God.

February 5, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA because some information is not available when the WBC is below 0.6

 


Saturday, February 4, 2006 11:59 PM CST

RBC TRANSFUSION TOOK UP ALL OF TODAY’S DAYLIGHT
The RBC transfusion took up, virtually, all of today’s daylight. However, Nicholas was full of sunshine tonight and throughout the evening—vibrantly “playing and having fun” at home.

QUIET, NICE DAY (EVENING)
The entire day is summarized as a quiet, nice day. During preparation (pre-medication to guard against a reaction) and infusion of the RBC it was quiet in terms of activity and Nicholas slept most of the time. While this evening was rather quiet, Nicholas was energetic as he normally has been. Mom & dad are so thankful to see and hear Nicholas look so vibrant and lively. (For having a low HGB count reported yesterday, you would not have been able to tell yesterday or last night based on his energy level.)

Note:
Nicholas seems to now be a fashion consultant. This evening when his big brother, Chris, came home from work (Golden State Warriors), Nicholas critiqued his attire. Nicholas commented about Chris’ suit, shirt, tie, shoes, and even his watch, concluding, “That really looks nice; I like the colors and the watch looks good!”

And the Warriors won tonight—Nicholas shouted, “Yeh, go Warriors!”

February 4, 2006 Blood Counts:

WBC: 0.5
HGB: 7.4
PLTs: 120
ANC: NA (Because some information is not available when the WBC is below 0.6)

 


Friday, February 3, 2006 11:59 PM CST

AND ANOTHER GOOD DAY
Nicholas had another good day; this afternoon he was in the backyard and played on the play structure on the side of the house. He spent most of the time in the upper clubhouse, a little on the swings, a little on the slide, and even tried climbing the wall-climbing unit (see it by clicking on View Photos). With the play structure on the side of the house and its upper clubhouse high enough to see over the fence, Nicholas had a good vantage point to engage with some of the kids coming home from school and other neighbors going/returning home.

And this evening friends, Cyndi and Sarah (Cyndi’s daughter), surprised Nicholas with a couple DVD movies and snack-size popcorn. Nicholas smiled and said, “You guys are so surprising!”

RED BLOOD CELL TRANSFUSION TOMORROW MORNING (Saturday)
Because of the good lab results yesterday, coupled with Nicholas “doing well,” we did not have to go to LPCH Clinic today for labs and check-up. The plan for today was now to draw and drop off labs at a local laboratory (so mom drew the labs and dad dropped them off early this morning). This afternoon LPCH received the results and called mom & dad to report them. Because the Hemoglobin (HGB) dropped to 7.7, very early tomorrow morning we will be in the LPCH Day Hospital for a Red Blood Cell transfusion. Labs will again be drawn.

With the chemotherapy we started this past Monday, it is medically expected that the blood counts will drop (part of the chemotherapy process).

APPRECIATING LOVE AND NATURE
You have seen (through Nicholas’ pictures) and read (through the journals as well as the guestbook entries—and we thank all of you so much for your entries to Nicholas and mom & dad) about God’s love for Nicholas and Nicholas love for so many things including people. And it is so pleasing to hear Nicholas talk about his appreciation for nature. Yesterday morning before leaving for the clinic appointment, Nicholas said, “I like the kind of breeze we are having today!” Another blessing from God, Nicholas recognition and appreciation for nature’s beauty.

February 3, 2006 Blood Counts:

WBC: 0.6
HGB: 7.7
PLTs: 110
ANC: 410

 


Thursday, February 2, 2006 11:12 PM CST

NICHOLAS HAD A GREAT DAY
Walking, “walk-run” (remember the Olympic “20K walk” event with the participants “walk-running” with the heel of one foot on the ground while simultaneously the toes of the other foot are also on the ground), singing, socializing with nurses and doctors in the clinic, and lots of physical play. Mom & dad are so thankful for the consecutive days Nicholas has been without pain, and being lively and spirited. Specifically, so thankful Nicholas is able to be happy!

NICHOLAS IS DOING VERY WELL PHYSICALLY AND MEDICALLY
You know, several journals included the fact that God’s love everyday provides a gift to Nicholas and we have seen the manifestation of Love continuously, even when medically there have been and are awful challenges. We feel and see God’s love enabling Nicholas to get through the challenges when seemingly they were too hard to even confront. Actually, we see the everyday gifts of Nicholas’ life as miracles and we praise God for His love.

We do not know what tomorrow will bring and we are frightened everyday. However, we do know that God’s love will be within and around Nicholas everyday and His love will enable mom & dad to be the loving parents we need to be. And God’s love continues to provide a deeper level of calm everyday, knowing that He is God and therefore His love and direction for us will be just right—even when it is sometimes so hard to understand.

Discussing the good blood counts (although they are low, out of the target ranges) today with the doctors/nurse practitioners, it was hard for them to explain the favorable counts. And one said, “Miracle, Nicholas may be our miracle boy.” Again, we do not know what “tomorrow” will bring; however, through God it will bring miracles of love to us in many ways.

We trust and believe!

Remember, please click on "View Photos" for current/recent pictures and click on the third photo album below for all current pictures (scrolling to the end of that album).

February 2, 2006 Blood Counts:

WBC: 1.0
HGB: 8.9
PLTs: 143
ANC: 800

 


Wednesday, February 1, 2006 11:59 PM CST

CANCER REPORTED IN THE BONE MARROW HAS NOT BEEN DETECTED IN THE PERIPHERAL BLOOD
In spite of the cancer reported in his bone marrow on January 18, the peripheral blood is still free of cancer. “Prognostic ally,” Nicholas’ LPCH oncologist is not sure what it means. And, mom & dad along with the oncologist do know that it means the obvious as stated above—no cancer in the peripheral blood and this is obviously great!

GOOD DAY, AND SOME ANXIETY FOR NICHOLAS
Because Nicholas’ night medicines are administered up to about 2:30 in the mornings, he has been sleeping until about noon when we wake him to administer medicine. (We wake him momentarily at 9:00 in the morning for one medicine part of the 5-day regimen.) When Nicholas awakes he continues to be in good spirits. However, this evening he did have some anxiety and just wanted everyone around him to “ please be quiet and not talk.” Administration of one medicine via a mask that takes about 8-10 minutes was right at the time he wanted quiet so mom & dad worked as a tag team (or like handing off of a baton) with the respiratory therapist present to comfort him and administer the medicine. Although he has received this treatment via a mask a few times before, tonight he was just “not up for it.” Nicholas expressed what he did not like about it today, and then cooperatively (with still a little anxiety) he composed himself and got through it.

DISCHARGED RIGHT BEFORE MIDNIGHT, SCHEDULED FOR A CLINIC APPOINTMENT TOMORROW AND FRIDAY MORNING
Nicholas was discharged just before midnight tonight (Wednesday) and we will return to LPCH tomorrow and Friday mornings for lab work and quick check up to assess Nicholas’ overall condition.

He was full of energy and in great spirits tonight. The drive home was lively, he just wanted to listen to some of his kid songs and sing, and that is what he did all the way home. Mom & dad were so happy to hear him making music that soothed our hearts!

Mom & dad will continue to administer chemotherapy medicines at home over the next three days to conclude the 5-day modest regimen that started Monday night right before midnight.

A FEW PHOTOS WITH LPCH STAFF ARE UNDER “VIEW PHOTOS”

February 1, 2006 Blood Counts:

WBC: 0.7
HGB: 8.2
PLTs: 99
ANC: 700

Tuesday, January 31, 2006 10:45 PM CST

SNAPSHOT OF THE DAY AND MOVING FORWARD
1) Nicholas had another good day: playing with mom & dad, LPCH staff, and on his own. His spirit is simply amazing. We love playing and just talking about anything with Nicholas. And dad had fun playing basketball with Nicholas in the room today and mom had lots of fun playing PS2 games with Nicholas.

2) Remember, the chemotherapy will be administered for 5 days in its targeted effort to destroy leukemia. In doing so, it would suppress Nicholas' blood counts so the blood counts are expected to trend down by next week. After this 5-day period Nicholas will be off of any chemotheray for a couple of weeks before the 5-day modest regimen is repeated (with possibly one change).

3) The LPCH doctors' goal is focused on making Nicholas comfortable, and recognize that medically it could put Nicholas back into remission. We love and trust God!

4) We love, love, love Nicholas! Our prayers are full of thanks for the continuous blessings in and around Nicholas. We do trust God and thank Him for loving us; and we do pray for some level of understanding. A lot of things along the way are so difficult to understand and we find ourselves thinking, "what does it all mean in terms of Nicholas continually having to fight this battle." And, we are thankful that through God Nicholas has been fighting this battle and remains full of love and caring!

5) Nicholas is scheduled to go home tomorrow evening (Wednesday) depending on lab work-specifically his liver function.

January 31, 2006 Blood Counts:

WBC: 0.9
HGB: 8.8
PLTs: 89
ANC: 700

 


Monday, January 30, 2006 11:59 PM CST

ADMITTED INTO LPCH FOR CHEMOTHERAPY-AND AN AMAZING SURPRISE SURFACED
Although Nicholas had a really nice day (snapshot below), there is one thing that provided an amazing surprise (something great to mom & dad). First and always, our trust is in God and not the lab work because we do believe in miracles and the power that God has over everything. So we do not swing back in forth trusting in things like lab work when they seem to show good results, and then leaning on & trusting in God when things like lab results do not appear to be good. We trust God for His omnipotence and omnipresence, period. And we praise Him for the doctors and nurses that work so hard to do everything within their power for all of these beautiful kids navigating through life.

So the amazing surprise to mom & dad is the lab work highlighted by the blood counts below, revealing a healthy rise in the Hemoglobin (HGB), Platelets (PLTs), and Absolute Neutrophil Counts (ANC). What an amazing surprise to us, and we thank God for his constant presence. We just thank Him and glorify His name because He loves Nicholas, and all of us, period. We have to believe, because of His love miracles have happened and can happen again and again.

SNAPSHOT OF THE DAY
Nicholas has been in great spirits, engergetic, playful, and so lively. You can just see and feel the love pouring from him; and we stop and thank God for his beautiful and perfect work revealed through Nicholas.

Nicholas was showing the doctors that he could jump again, and this evening he put on a little dance show for us (while he was sitting up in bed so the dance was more upper body, arms, and head). Remember, KJ (another BMT patient) dances for the Golden State Warriors' Junior Dance Squad so perhaps through some inspiration from KJ, Nicholas is in the groove. Remember our recent outing to see the Harlem Globetrotters? That night before the game the theme song from the movie Space Jam was playing throughout the arena and Nicholas was dancing just like he did tonight. What a wonderful, happy sight for mom & dad and some of the nurses.

Nicholas was so happy to see the nurses and actually he was anticipating seeing them (calling their names out to mom & dad). Nicholas and his money: he set aside a few coins for his three night nurses and was so happy to call them in to his room to give a nickel, a dime, and a quarter respectively. He put a special mark on each coin so they would remember who it came from. Good thing they know that it is thought, not the amount, that matters, period. He had fun giving...what another beautiful moment to see the joy in giving as much as one loves to receive. (Again, you have probably seen or read about Nicholas and his money-he loves to save it and he loves to ask if we need it when we cross the bridge on the way to LPCH and at times when something "big" is needed).

January 30, 2006 Blood Counts:

WBC: 1.4
HGB: 9.2
PLTs: 102
ANC: 530

 


Sunday, January 29, 2006 11:35 PM CST

…AND ANOTHER BEAUTIFUL DAY
Family and friends helped to make today so beautiful. An aunt & uncle, a couple cousins, and family friends were great to be around today for all of us. Nicholas, and mom, especially liked playing the board game—Operation with everyone. Please CLICK ON the third album under “Links” for more of today’s pictures (scrolling to the end for current pictures).

Nicholas has been walking so, so much better! He doesn’t look to mom & dad (or others) to help him get around and he has even asked us to chase him. Oh yes, it has been a beautiful day—we praise God and thank Him for so many continuous blessings. His love is felt all around us.

IN LPCH THE NEXT COUPLE OF DAYS
Tomorrow morning Nicholas will be in the LPCH Clinic for lab work and then will be admitted into LPCH for a couple of days (planning to be home Wednesday evening). Nicholas will receive a modest regimen of chemotherapy medicines that will be administered over five days. While we are thankful God has given doctors the ability to care for patients, we put our complete faith and trust in God to guide, shield, and heal Nicholas.

THANK YOU, ALL OF YOU, FOR YOUR BIRTHDAY WISHES AND PRAYERS
All of your birthday wishes have been like soft strikes onto a piano keyboard, a soothing melody of love and fun! Thank you so much for being with Nicholas in “all” of the ways that you have been. Please stay with us as we continue to see Nicholas, through God, shine like the sun making its way through clouds, showering us with his love.

Tonight, mom & dad each received a written gift of love from Nicholas. He wrote each of us a very, very short note: Mom XO and Dad XO. It was so beautiful to see him proudly walk up to each of us and hand us the notes with sweetness and joy.

NOTE: Nicholas decided that his laptop would not be named; he said he'll just call it his laptop. (And thank you Linda and Michael)

January 29, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, January 28, 2006 11:59 PM CST

GOOD DAY
Nicholas had a good day, waking up to play with KJ and Kaeli and in the evening playing with family friends, Derrick & Darin. And then he got to open his last birthday gift (yes, his birthday still continues a day later), a laptop computer he has been asking for over a year now. Along with money and all the things stated in his Song of Love (playing in the backgroung), Nicholas loves to type and play interactive games on our home computer. You may remember photos while in the hospital where Nicholas would set up his food tray like a desk. Now, he has his own laptop to type and play anywhere.

Please CLICK ON “View Photos” to see and then feel his happiness the laptop generated.

WE KNOW THAT GOD LOVES NICHOLAS
Following are excerpts from our journals toward the end of October 2005, right before Nicholas was going to receive chemotherapy called Clofarabine. We are thinking about those days for a variety of reasons that comes out in these excerpts:

You know or can imagine the love a parent has for their child, and then can imagine how immeasurable God’s love is for all of us. Would God leave the side of the children He cares so deeply for? No. "God is a very present help in trouble." He is ever present, right there, right now. We are not alone and this problem is NOT too big for God. The Bible says, "God is of purer eyes than to behold evil". If God sent his son to heal disease, sin, blindness, every ill, and to raise people from the dead, wouldn't that mean that Jesus was doing God's will? Was there ever a time when Jesus said he couldn't heal someone? That it was too late or too severe? No. Because Jesus knew that God did not send disease, sin or suffering. So Jesus healed by seeing mankind as God created them. As it states in Genesis: "And God created man in His own image, in the image God created He him, male and female created He them." So Nicholas isn't a material person needing physical healing. He is the image and likeness of God. And what is God? The Bible says, "God is Love. God is Spirit." So Nicholas is the image & likeness of Love; and is the image & likeness of Spirit. We don't look to the body for what is true about us, we look to God. So what is God saying about Nicholas? God is saying, "This is my beloved son in who I am well pleased."

It’s comforting to know that God, Divine Love flows throughout Nicholas’ body and it is pure! So while Nicholas will be in LPCH for a couple of days beginning Monday, we know God—Love and Spirit—is GREATER THAN ANYTHING and SUPERSEDES EVERYTHING. There is nothing that can be in, or placed into, Nicholas’ body that can have power over God—nothing.

January 28, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, January 27, 2006 11:59 PM CST

MY BIRTHDAY
Nicholas had a fun day with family & friends, and all because of God. We went to a matinee for a movie, and after arriving home the afternoon, evening, and night was full of surprises and love. There was a parade of visitors and two are "spending the night" (KJ and Kaeli).

MY HAPPINESS
Mom & dad are reminded that happiness, like the spiritual attributes we long for, come from God and there is absolutely nothing that can take Nicholas happiness from him. Nicholas' strength, energy, joy, and the passion (as well as compassion) he continually shows makes our lives...well truly makes our lives amazing.

PLEASE DO TWO THINGS TO GET A BETTER SENSE OF NICHOLAS TODAY

1) CLICK ON "View Photos" to get a sneak peak at his story of the day.

2) CLICK ON the third photo album under "Links" to see the whole story of the day (accessing and scrolling to the end of the album for current pictures).

The story line:
? Look at me
? I am happy as can be
? And I am loved
? Forever more
? Just look at me
? And I am sure that you will see
? I am happy as this "piggy" (well it rhymes and it is part of the picture)
? And I am loved
? I am loved
? It's my birthday; and I know I'm loved everyday

January 27, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, January 26, 2006 11:59 PM CST

NICHOLAS
Tomorrow (Friday), Nicholas will be 6 years old; and today, Nicholas gave himself a birthday gift that actually gave a gift to mom & dad, his teacher, and two of his former classmates. The gift he gave himself was the “Birthday Song” he played on an instrument in his former classroom (please CLICK ON View Photos). And the gifts to us continued as Nicholas’ love continues to radiate from his ways, truly, generating gifts to our hearts and minds as we know we have seen blessings from God along the way, and today!

LIFE AND LOVE
What we—and you—have seen along the way is Love begetting love. The miracle of grace is no miracle to Love. Truth and Love are at work, we believe because we have seen and are so very grateful for God’s words because His words are life to us and medicine to all our flesh. (Proverbs 4:20-22—“Pay attention, my child, to what I say. Listen carefully. Don’t lose sight of my words. Let them penetrate deep within your heart, for they bring life and radiant health….”)

Many of you may remember the following portion from the song, Rock of Ages:

“…Christ, the Truth, foundation sure,
On this rock we are secure;
Peace is there our life to fill,
Cure is there for every ill,
Rock of Ages, Truth divine,
Be thy strength forever mine."

We believe…, we believe…, we believe…!

January 26, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, January 25, 2006 11:59 PM CST

TODAY’S CONSULTATION…AND NICHOLAS IS IN THE ABSOLUTE BEST HANDS—GOD’S
Today’s consultation has us in tears, empty in thought and feelings regarding what is said medically. The calm we spoke about the last few days continues and although the emptiness does not subside, we are full of hope, as we trust God and His word toward Nicholas being healed in Jesus’ name. And, we feel, we just know that Nicholas is in the absolute best hands—Gods—and in His hands He will carry Nicholas through what medically cannot be done. Nicholas has been and is in the absolute best hands!

We have seen evidence of Love guiding, shielding, and healing Nicholas and that Love is ever-present. So, yes, we absolutely believe…because God loves Nicholas!

NICHOLAS
Nicholas looks great, doesn’t he? Nicholas is amazing, isn’t he? And Nicholas is loved, isn’t he? We sense all the love that you directly and indirectly continually provide Nicholas (and mom & dad as well as our other three boys), and imagine…amazing as the love is that we sense through you, we know that it is true that God’s love is absolutely pure and all-powerful. His love does more than amazing things and because of God and His love for Nicholas we do expect amazing things for Nicholas, through God. The hope gives way to our trust in God.

Tonight we read a book, The Legend Of Three Trees, a classic story of following your dreams. Following is the written caption about the book; it provides a good sense of the beautiful, warm story:

“Every child has big dreams for his or her future. But what happens when God doesn’t fulfill our dreams…at least not in the way we expect? In this new telling of the classic legend, your child will meet three young trees that have big dreams for their future. The olive tree wants to be a treasure chest, the oak tree hopes to be a mighty ship, and the pine tree only wants to stay on the mountain and point others to God. But all three trees are in for a surprise—because God has a much different, much better plan in store for them. Join our three trees and see how sometimes the dreams we have for ourselves are much smaller than the dreams God has for us.”

And the ending of the story provides comfort for mom & dad tonight. The ending reads:

“For if we follow God’s path, we will travel far beyond even our greatest dreams.”

And, we believe, we trust, we pray for Nicholas’ complete healing. Please pray and “know” that Nicholas has been blessed and we believe in miracles, that bears witness of God’s omnipotence, omniscience, and omnipresence!

SCHOOL TOMORROW (Sort of)
Tomorrow (Thursday), Nicholas’ teacher, Ms. Shirley, has arranged for Nicholas to be in his former class for a couple hours tomorrow evening and two of his classmates will be there with him. It will be a time for Nicholas to “be in school,” a place he loves very much—and two of his friends (classmates) will certainly help make the time back in school lots of fun.

January 25, 2006 Blood Counts:

WBC: 1.1
HGB: 9.0
PLTs: 74
ANC: 300

 


Tuesday, January 24, 2006 11:59 PM CST

LPCH CLINIC TOMORROW (Wednesday)
Tomorrow morning we will be in the LPCH Clinic for lab work and to conclude consultation on what to do medically. We will make a decision knowing that God, that God is leading the way. Again, the calm feeling that came over us yesterday during the consultation has seemingly wrapped itself around us as the greatest sense of peace—even during a time of suspected trepidation—and is permitting mom & dad to breathe easier along with providing comfort to speak with a sense of God’s loving hand showing us the way. And we know that Nicholas is loved and in His hands, so nothing can cause harm to Nicholas as he is shielded from anything contrary to love. We continually pray and believe…

…”Green pastures are before us, which yet we have not seen,
Bright skies will soon be over us, where darkest clouds have been,
Our hope we cannot measure, our path in life is free,
Our Father has our treasure, and He will walk with thee.”

NICHOLAS’ DAY
Nicholas’ morning started with wrestling mom in bed (yes, wrestling mom). What dad heard was, “It’s pummeling time…” What dad saw was Nicholas bouncing on the bed (on his butt not standing) and distracting mom with his hands as he catapulted onto mom toward earning a 1, 2, 3 count. The sounds of a child having fun embeds love into your heart and brings back memories not only of that child’s play from other times, it also brings back memories of ourselves and our childhood fun.

This afternoon mom was not feeling well (perhaps from being pummeled so many times from this mornings wrestling match). Nicholas, combining his caring nature with his sense of medical care (that he is all too familiar with), went to get some Tylenol, got a bottle of water, a blanket, and said, “You sit there mom, I’ll take care of everything.” He did just that, including putting everything away (“putting everything away”…dad was beaming).

And what we feel…

…”We walk with Love along the way, and ‘O’ it is a holy day,
No more we suffer cruel fear, we feel God’s presence with us here,
The joy that none can take away is ours, we walk with Love today.”

January 24, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, January 23, 2006 11:59 PM CST

ANOTHER BEAUTIFUL DAY
Today started very early as we prepared and made our way to LPCH for lab work and consultation in preparation toward making decisions on the direction we will take for Nicholas. Before we talk about the medical aspects of the day, we are first thinking about the beautiful day we shared holding & talking with Nicholas; enjoying family-friend, Linda, whom mom grew up with and her husband, Todd, who joined us for a late lunch because we did not leave the clinic until late this afternoon. And this evening at home was spent with Kaeli (remember Kaeli from the Ronald McDonald House), her brother Seamus, and mother Theresa.

The beautiful day was filled, or we should say spent, focusing on the fun. Hearing the joy from Nicholas playing and laughing—laughing out loud—was music to our hearts.

CALM
The consultation provided more information to mom & dad, more information to read & digest. And amazingly, there was a beautiful sense of calm as we talked about directions to take. Medically, the first thing is to have Nicholas in remission and two clinical trials were discussed—with one endorsed by a leading expert and this one felt good for many reasons that are truly hard to explain because the feeling just “came to us.”

So tonight we are reading the voluminous amount of information on the two trials, and praying, giving thanks to God for the calm that has come over us. Thanks for guiding our thoughts and illuminating the direction, His direction toward revealing Nicholas to reflect the “truth” about health and healing through Him.

And we are so thankful that today’s lab revealed purity in Nicholas’ peripheral blood, praying and thanking God that the disease the doctors stated last Wednesday has not entered into the peripheral blood. We continually believe, and we continually trust God’s word and His direction for health and healing through Him. We believe that what the doctors reported last Wednesday can be reversed because it has no place in God’s perfect work (without error).

NOW WHAT
Tomorrow our doctors are expected to have another portion of information, from the University of Minnesota regarding a BMT process wherein a patient is not in “complete remission.” Wednesday morning we will be back at LPCH clinic for lab work and a decision by mom & dad on the direction to follow will be delivered then or tomorrow (Tuesday).

During what we, actually, expected to be terrifying as we pray, act, watch, listen, and pray for God’s direction, again we are so thankful for the calm He has placed over us. Only God can provide calm during a time like this.

January 23, 2006 Blood Counts:

WBC: 1.2
HGB: 8.9
PLTs: 100
ANC: 380

 


Sunday, January 22, 2006 10:02 PM CST

BEAUTIFUL DAY (Party with family and friends representing all of you)
Once again, we understand what we have been told medically; and once again, Love flowing through Nicholas is what we believe is omnipotent, omniscience, and omnipresence. We believed yesterday, believe today, and will continually believe that Love’s manifestation will present Nicholas free from anything contrary to purity and perfection—God’s work.

Family and friends showered Nicholas with so much love today as we celebrated his January 27th, 6th birthday. And mom & dad felt so good seeing Nicholas enjoying all the wonderful, exciting, and fun times you expect from a birthday. He was free from anything except enjoying family and friends, laughing, playing and having fun.

PLEASE CLICK ON THE THIRD ALBUM BELOW under Links and scroll to the end of the album to view the smiles, laughter, and fun from today’s party.

LPCH CONSULTATION TOMORROW MORNING (Monday)
Tomorrow’s consultation is scheduled to provide final information on directions worldwide to consider. There are no words to describe what we are feeling, and we lean, we lean completely on God because we know that we cannot do any of the things in front of us by ourselves. Tomorrow will unfold as tomorrow unfolds—God, our Father guiding our path.

Right now, we are looking at Nicholas and thanking God for the beautiful son, beautiful friend he is to all of us. We thank God for guiding and shielding Nicholas throughout this journey and know that he is loved. Thinking & praying and crying & talking with our Father, God feels so good. Right now listening to the song, He’s My Son (“hometown.aol.com/sunnyasalways/SUNNYSHESMYSON.html”), transcends all that we are, closer and closer to God:

He’s My Son

Down on my knees again tonight,
Hopin' this prayer will turn out right
See, there is a boy that needs Your help
I've done all that I can do myself

His mother is tired,
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through,
But God, who he needs right now is You

Let him grow old,
Live life without this fear
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how
See, he's not just anyone,
He's my son

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow.
See, he's not just anyone

Can You hear me?
Can You see him?
Please don't leave him,
He's my son

January 22, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, January 21, 2006 11:59 PM CST

NICE DAY WITH FAMILY AND FRIENDS—MORE TOMORROW
Nicholas, and mom & dad, had a very nice day with visits by relatives and friends. It was so nice to feel the love in the air and hear the joy coming from Nicholas’ heart. You know, the playfulness that is pure, innocent, and lots of fun. It seemed especially nice for others to witness what we see in Nicholas, “love directing life.”

TOMORROW (Sunday), an early birthday party at a local restaurant will continue the showering of love to Nicholas from friends and family. And the showering of love is a show of believing—we continue to celebrate life and love and happily sense a beautiful circle of love generating life!

NURSES BRINGING LOVE, SHARING LOVE, AND LIVING LOVE ON AND OFF THE JOB
When you love what you do, it seems to have the power to give and provide all that the heart needs. We are so grateful that Nicholas’ nurses have given Nicholas love that in it self has been medicine to Nicholas. In fact, their love has been medicine to mom & dad as the nurses continue to provide our family with love through unique friendships blending that friendship with what seems to be a family bond based on the very, very close relationships. And from it all we have been blessed to feel a soothing sensation in our hearts, in and out of the hospital. They have helped to provide a sense of calm through it all, even when we are out of the hospital as the friendships continue.

Truly, they have made our lives in the hospital, lives to positively remember although the purpose of being in the hospital understandably would not have you wanting to be there for more.

January 21, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, January 20, 2006 11:59 PM CST

REMEMBER, "LOVE IS ALL YOU NEED"
Looking at Nicholas in the picture above, the first picture after clicking on View Photos, and the pictures (at the end) of the third album under links that were taken yesterday, "believe, believe, believe" that "Love is all you need." Love and spirit flowing through "your being" that conquers everything in conflict with the pureness and perfection of even what we cannot see. However, more gently, beautifully revealing love externally as a reflection of that Love. With Love expressing Itself, you would see love and we believe, we believe, we believe because we see Love illuminating from Nicholas.

Do you see it in the pictures in the places described above? Although it is not just the pictures, it is the rays of warmth released from Nicholas, it is the softness in the words you hear from Nicholas, it is the embodiment of Love you would expect and I'm sure you have felt in your life. And we are so grateful for God's love because He continues to demonstrate that in the face of what has seemed insurmountable over the last 15 months. Because there have been so many blessings revealed through Nicholas throughout and we believe, because of God and His love, we will continue to witness these blessings because it is His word. We believe!

And the love that surrounds Nicholas through all of you from near and far, we are so thankful. Look at the love from his friends (from school and home) and one of his cousins in today's pictures! You see this is another way we know we are blessed. Nicholas, mom & dad, our family is blessed with a showering of love from all of you near and far. We feel the love from you as it seemingly reaches us instantly from your thoughts and prayers.

Note: And AAA, we are so grateful for their unwavering support of mom & dad, for Nicholas.

THE PICTURES
Although it is not just about the pictures, they do tell a story here. In addition to the picture above, please CLICK on View Photos and the Third Album Below Under Links to see, feel, and enjoy Love. (...­scrolling to the pictures at the end of the album because all the pictures in the album leading up to the BMT and through today are in chronological order.)

In today's pictures you will see:

? Some of Nicholas' friends and one of his cousins. (The friends and cousin I guess are your delegates today because all of you are truly a blessing to us)

? Tim Roye (radio play-by-play announcer) along with a little help from Nicholas interviewing Derek Fisher who was the player of the game. Oh, Nicholas' question to Derek Fisher was, "Who is the hardest team to play?"

With all of the joy and excitement seeing Nicholas sitting up there, brightly shining and smiling we did not hear Derek's answer that was broadcast throughout the arena and on the radio. Friends and some of Chris' (Nicholas' big brother) colleagues at the Warriors who were listening to the radio either from their homes or driving home from the game heard it and telephoned us in wonderment of hearing Nicholas' soft and loving voice. Were you listening to the radio and did you hear Derek's answer?

? The Golden State Warriors' main scoreboard and information system above the court and their acknowledgment of Nicholas' January 27th birthday, arranged by Gina (thank you)

? Some of the players and staff with Nicholas before the game (although so many of the Golden State Warriors' staff in front and behind the scenes were more than what you would wildly expect in their, true, showing of love.) We have said it before and we have also said that we feel we should say what we see & feel—THE WARRIORS ORGANIZATION is so much more than a caring organization on and off the court, even when no one is looking!

And, what a surprise when Bob Fitzgerald (television play-by-play announcer) walked over to Nicholas and mom & dad before the game while we were sitting courtside. Bob said hello to Nicholas, by name. And then I remembered, one of Nicholas' nurses is Bob's sister and through the connections (and love) Bob recognized Nicholas.

? The kids having a "Great Time Out"

? Thunder (the Warriors mascot) touching Nicholas' heart as well as touching the other kids' "excitement button"

FAMILY ON SATURDAY AND FRIENDS ON SUNDAY
Just being around family and friends is our plan for the weekend, with our quiet time with Nicholas at night and early mornings. Nicholas loves the time when we lay down to sleep and loves the morning time together to just "cuddle" and gently get out of bed. Mom loves the gentle and slow process of getting out of bed while dad loves to get up, get started, and doing things for the family that are behind the scenes. Actually, mom deserves the gentle and slow process because she gives so much love that she deserves what she feels (although dad pushes her to get up earlier to enjoy the beauty of the morning).

FROM NICHOLAS
"I just want to say, I love all of you!"

January 20, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, January 19, 2006 11:29 PM CST

NICHOLAS HAD A GOOD DAY
We talk a lot about trust and we absolutely walk with trust. Also, we talk a lot about knowing the truth, knowing that love manifests love and there is no doubt that Nicholas is loved. Loved by mom & dad, loved by his brothers, his relatives, and friends including you our amazing friends through CaringBridge, all of you that are gratefully part of our lives. So we are grateful and joyful because love absolutely manifests love and that is why we are not surprised to see Nicholas having a good day.

Looking and reading above about Nicholas, it reads: “Nicholas—truly—illuminates with rays of sunshine that warms your heart. His strength, energy, enthusiasm, joy, & endless passion for caring about others are amazing.” Through it all Nicholas has demonstrated time and again God’s loving touch upon him, and now we are looking for that love to manifest itself outwardly in every aspect. We believe…we believe…we believe.

HOW THE DAY WAS SPENT
Well, as his Song of Love goes, Nicholas was caring about others today via his concern and actions with dad a couple times, drawing, playing, and having fun. He had a surprise visit by his friend KJ (remember KJ from the Ronald McDonald House…). And Nicholas was doing homework via his Leapster multimedia learning system tonight. Thinking back over the past several months, remember, money has been a big interest for Nicholas. And that is what he was learning on Leapster, adding and subtracting money (pennies, nickels, dimes, and quarters). Nicholas said, “They make it fun while you are learning.”

EARLY BIRTHDAY PRESENT
Nicholas’ sixth birthday is January 27, however, our friend, Gina, is giving him an early gift—her suite for tomorrow night’s (Friday) Golden State Warriors’ basketball game against the Cleveland Cavaliers. So Gina, her daughter and several other friends and one of Nicholas’ cousins will be together for a “Great Time Out” (as one of the Warriors’ tag line reads).

As we stated before in several journals throughout the last 15 months, the Golden State Warriors have truly demonstrated being a caring organization, even when no one is looking or knowing how they help to make a difference in people’s lives. Remember, they have sent their mascot—Thunder—to our home, to interact with Nicholas at a game in a suite provided by the Warriors, and interacted with Nicholas and other kids at Children’s Hospital Oakland on a few different occasions.

This morning we talked with the Warriors and they have arranged for Nicholas to Meet & Greet some of the players tomorrow before the game. And Gina has arranged some special surprises, including a visit by Thunder tomorrow night.

LOVE (updated)
We are blessed by all of you and the various ways you interact directly and indirectly with us; thank you! And thanks for believing…because the TRUTH IS Love is all we really need. Love will beget love revealing Nicholas pure and perfect, revealing the breath of life...

January 19, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, January 18, 2006 7:36 PM CST

TERRIBLE NEWS

TODAY’S BONE MARROW ASPIRATE SHOWS THAT THE CANCER IS BACK
At times it is seems so difficult to do what is right and that is okay, because we are okay with doing what we believe is right even when the road is “slippery and seems difficult to climb.” We try to be strong and lean on God for strength, wisdom, and comfort. We trust Him and we are faithful. And, we make mistakes. We are talking about making mistakes and doing what is right because we simply do not know what is right to do at times, and right now! We keep our focus on God because He does not make mistakes! So we really do know what to do, trust and believe in God.

We are faithful and believe wholeheartedly in God’s word. Our focus includes knowing the truth—Nicholas is made in God’s image and likeness and therefore is pure so nothing can weaken him—and we will continually pray and believe for this truth to manifest itself because we believe… We do hear what is determined medically; however, we focus on God’s love to manifest itself making Nicholas whole and free from anything contrary to purity because of His omnipotence, omniscience, and omnipresence. We pray so diligently to understand and then simply pray to our Father, God asking for His Love to take over everything within and around Nicholas. And we know that we do not have to ask because it would be asking God to be God. He is, and we are so grateful.

We pray for God’s understanding as we try to do what is right, asking for His guidance because as complete and deep as we love Nicholas, He loves Nicholas so much more. We want God to make Nicholas feel all right—and although it seems willful we trust He understands our pain, Nicholas is our son, AND Nicholas gives so much to everyone.

THE TERRIBLE NEWS
At LPCH this afternoon, we were told that this morning’s bone marrow aspirate shows that the cancer is back. We just arrived home with Nicholas! All we can really do at this moment is love Nicholas and PRAY to God, to make Nicholas all right. We know He hears all of our prayers and this, too, makes all of this seem so difficult. (Father, we love and trust you and thank you for being with him as you continually have been. Nicholas needs you so much right now—please Father, touch him and make him all right.)

The doctors are surprised because Nicholas looks so good and his peripheral blood counts/levels are pretty good. We are not surprised because love manifests in Nicholas and love reveals love. So, we PRAY that what is in the marrow is stopped, knowing that miracles (God being God) happen through God!

Nicholas’ doctors are reaching out again to other hospitals and next Monday we will talk with his doctors to make decisions. As Nicholas’ doctors are aware, mom & dad have also been reaching out to other hospitals and talking with doctors about Nicholas to get other perspectives. Nicholas’ doctors understand that the focus is on Nicholas and they have been amazingly supportive of our efforts. Thankfully, we trust the medical leadership of Nicholas' doctors.

More importantly, we maintain our trust in God and thank Him for providing wisdom to the doctors to carry their part of curing Nicholas. We are more than hopeful, we trust even in the face of what we are hearing because nothing has power over Nicholas except for God. Miracles have happened already with Nicholas and we believe…we believe…we believe.

January 18, 2006 Blood Counts:

WBC: 2.6
HGB: 10.2
PLTs: 162
ANC: 1,320

 


Tuesday, January 17, 2006 10:35 PM CST

BONE MARROW ASPIRATE AT LPCH TOMORROW (WEDNESDAY)
Tomorrow we will be at LPCH very early in the morning for lab work and then the operating room for a bone marrow aspirate (BMA) and lumber puncture (LP). The BMA and LP medical procedures will assess Nicholas’ bone marrow and central nervous system for remission status. While Nicholas will be recovering, part of the morning we will be in conference with doctors to really understand the various “medical” options. Mom & dad are frightened, however, we trust God and feel His presence comforting us. It’s not easy to experience all that Nicholas has been going through and it is so hard trying to understand what Nicholas may feel day after day, week after week, month after month, and now over a year. Although we have moments of being frightened, we really trust, and pray that the doctors hear God’s voice and guidance.

OUR TRUST IS IN GOD
WE PRAY that tomorrow’s procedures reveal what is true, God’s loving touch presenting Nicholas free from cancer because it has “no” place in His creation.

Remember Hana’s writing, titled I Wonder Why, from our November 11, 2005 journal? We have absolute faith and trust in God and we, too, have wondered why about all of the kids with any seemingly life-threatening disease. And we pray, act, and live in the way that glorifies Him in these times of pain knowing that through Him Nicholas will be made whole and free from cancer—it’s hard to see this because of all of the things that Nicholas has experienced, and then it’s hard not to see God’s love because of all the good things and protection (shielding) Nicholas has experienced. And everything else gives way to trusting God because He provides our strength and our fortress, because He will help Nicholas, because He is omnipotent, omniscience, and omnipresent!

READING, SHARING, LEARNING, AND FUN WITH MS. SHIRLEY
This evening, Nicholas’ teacher, Ms. Shirley, visited. They were studying Chinese New Year, Martin Luther King, Jr., talking about Nicholas’ Hawaii trip last month, writing, laughing, and on-and-on-and-on. Nicholas was very energetic and so enthusiastic about learning (just like the days when he was going to school). And these beautiful moments are moments of truth, of God’s love operating within Nicholas revealing what has to be true—Nicholas is made whole, pure, and perfect through God.

EVERY THING WILL BE JUST RIGHT
For one of mom & dad’s wedding anniversary, dad gave mom a magnetic poem that was a reflection of our very first walk together. It was raining that night, however, everything was “just right.” The poem reads: “Some people walk in the rain…others just get wet…” Like those simple moments, there is nothing to fear when everything is “just right” so there is nothing for us to fear knowing and trusting that through God every thing will be “just right.”

January 17, 2006 Blood Counts:

WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, January 16, 2006 11:59 PM CST

Playing, homework, cooking, shopping, and relaxing was how Nicholas enjoyed the day.

1) Nicholas was played outside in the fresh air under the blue sky with neighborhood kids (along with dad). We went for a very, very short walk on the trail at the end of our court (well dad went for the walk because Nicholas was riding high, on dad's shoulders by the time our short walk started).

2) Nicholas' school teacher dropped off a book about Martin Luther King, Jr. so this afternoon Nicholas spent time listening to the story and began writing his story about Martin Luther King, Jr.

3) Helping mom cook is another favorite thing to do for Nicholas. Tonight he helped make cornbread to go with our dinner.

4) Shopping, at Toys R Us again, was part of our evening. Nicholas wanted to go back to Toys R Us to find a PS2 game he has been looking for. Mom used to love to shop and it seems like Nicholas has picked up the check so to speak. He even likes to shop online.

5) And relaxing together is how he spent the rest of the evening.

January 16, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Sunday, January 15, 2006 11:59 PM CST

Another quiet, however, good day at home. More and more, Nicholas is walking better and getting up on his own to do the things that he wants to do. And tonight, he even jumped a little.

Remember, this coming Wednesday Nicholas will be at LPCH for a bone marrow aspirate and lumbar puncture to report on the status of the marrow and spinal fluid.

You know, for a moment we wonder would it means if the report shows the leukemia is back. Does it mean that God has abandoned Nicholas? Does it mean are prayers are not being answered...? AND then that moment is "put behind us" because we know that God is the same yesterday, today, and tomorrow. We know that He hears our prayers and like a mother and/or father to their child, all of us would naturally and unconditionally care and provide for our child. THEN we focus on God's omnipotence, omniscience, and omnipresence and just know that He will comfort and deliver Nicholas perfect soundness of mind, wholeness in his nature, in his immortal spirit, and even to the joints & marrow of his bones. In fact, we feel and see God's presence in so many ways every day. He has not left Nicholas' side for He is leading... We are thankful and will forever praise and give all glory to God for His work is perfect and His work with Nicholas is proving to be right for so many reasons. We pray for our son to be free from all of this "leukemia and bone marrow stuff" because His work is perfect, without flaws so the manifestation of His perfect work will reveal the puritiy within Nicholas because His word says so.

January 15, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, January 14, 2006 11:59 PM CST

Nicholas had a quiet, good day at home. This evening we were blessed with dinner and the company and conversations of more friends. The Edwards’ family made dinner for Nicholas (and we benefited with dinner as well) and spent the evening with all of us—helping us relax and smile a little easier.

Staying the course is what mom & dad need and wholeheartedly will do—Nicholas is our son. Staying the course with us—we know we are blessed with all of you.

We know, we just know, that we do not need to ask you for your prayers and love because we see and feel your constant presence. All of us know the demands and pleasures of life and along this journey it seems to be full of demands, although thankfully sometimes we see and feel the pleasures that life through God provides. So we can imagine the demands on your life and that is why we are forever thankful that you choose to be with us on our journey (and thankful for you choosing for it to be your journey too)! Please, stay with Nicholas and our family because every day until he feels all right, and complete healing is manifested it feels so good to know you are there. Although, we know that only God can bring Nicholas happiness, only God can bring him peace—and we feel that He has brought you into our lives to help see us through it all.

Fear thou not; for I am with thee; be not dismayed; for I am thy God; I will strengthen thee; Yea, I will help thee (Isaiah 41:10).

January 14, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, January 13, 2006 11:59 PM CST

ANOTHER GOOD DAY
Nicholas believes, we believe, and you believe. Nicholas is doing all the right things, we are constantly working on doing all the right things, and again-and-again-and again we are so grateful for all of you and the various ways you directly and indirectly help us along the way.

And evidence of Love manifesting is another beautiful day for Nicholas. And Gina, mother of Kas who was in a class at Diablo Valley Montessori School with Nicholas, once again arranged something special for our family. This evening she arranged for Nicholas to go to the Arena in Oakland to watch the Harlem Globetrotters from a suite (to control the environment) with her family and friends. Nicholas had an incredible time. The electricity in the air, the beat of the music in our hearts, and excitement resonating throughout Nicholas came through with his singing, dancing, and playing throughout the evening. PLEASE CLICK ON View Photos for a few pictures (other pictures are at the end of the third album under Links).

Did you know that now cotton candy also comes in a tub? It does; how neat (I mean really neat in terms of not being so messy) is that!

Mom took some videos of Nicholas enjoying the evening and in one of the videos, Nicholas let his Harlem Globetrotters ball slide out of his hands so he could fully get into the rhythm with his hands, arms, shoulders, neck, and head. He was enjoying the moment and enjoyed the entire evening so much! What a beautiful surprise.

January 13, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, January 12, 2006 11:59 PM CST

GOOD DAY, AND THINGS ARE LOOKING GOOD
Nicholas had a beautiful day. We all had a chance to get a little rest this morning and this afternoon and evening Nicholas was, well like some of the words from his Song of Love playing in the background as you are reading the journal, “playing and having fun.” This evening the twin girls from next-door came over and the three of them enjoyed a variety of what you would expect from kids creating fun times. And friends from work stopped by with dinner and we all enjoyed conversations, laughter, and playtime.

His beautiful day began first thing this morning when he woke up. He was “bright eyed and bushy tailed.” Nicholas’ energy, enthusiasm, joy, and his increased strength was on display all day. We know what we hear from a medical perspective, and we know what is possible through God—and through God is the answer. In fact, the continued answer because we, certainly, see blessings of His love upon Nicholas continually unfolding.

We have said it time and time again, we trust God and His word. It is not just hope that we have for Nicholas to be cured, it is simply love and the manifestation of what is true through spirit and love. And yes, we have said these words time and again as well, however, what is true is true yesterday, today, and tomorrow.

January 12, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, January 11, 2006 11:59 PM CST

CYTOMEGALOVIRUS IS NEGATIVE AGAIN—YES
CMV/PCR lab work from this past Saturday’s blood draw was completed today and it was negative for the Cytomegalovirus. Now that there were two consecutive negative readings, it was declared that Nicholas has overcome the virus.

CONSULTATION AT LPCH, AND NICHOLAS
Talking with Nicholas’ oncologist and BMT doctor at LPCH brought a lot of clarity to the medical aspects of “now what.” We are so blessed to have them express and truly be an advocate for Nicholas. Yes, we know that the doctors have their doctor-role. And yes, they truly express and show up as an advocate for Nicholas. Of course, mom & dad are his advocates and it is comforting to see the doctors show up the way that they have with Nicholas. More importantly, we are thankful that God is his advocate, his Father.

Next Wednesday, a bone marrow aspirate and lumbar puncture will be performed to check the status of Nicholas’ bone marrow and spinal fluid. Simply stated, the doctors are checking to reveal that Nicholas is still free of cancer. As stated in yesterday’s journal, we understand “medically” the prognosis. And more importantly we have—and we are sure that you have too—seen Nicholas rise above a lot of challenges and expected pitfalls.

The manifestation of Love has enabled Nicholas to shine even during some expected dark times. Have you seen his shine? Have you seen his smile, his glow, his expressions and actions of love and caring about others…? It is not just about putting forth an effort that mom & dad want him to do to approach all of this stuff being positive in thought. It is about knowing that Nicholas is in God’s hands. He is in the hands of healing. Although it is hard to understand all that Nicholas has gone through, we absolutely know that Nicholas is God’s son and because of His omnipotence, omniscience, and omnipresence we feel God’s presence and love shaping Nicholas to continue his work for Him.

While we remain so thankful that the doctors are here for Nicholas, we pray that they are receptive to God’s guidance of their hands and minds. We feel that it is so important to say what we feel and/or see. We have told the doctors about our faith and full confidence in God’s love for Nicholas. Can we be witnessing a miracle? Are we witnessing something special? We feel that we are witnessing God’s love, and we give all the glory to God for His spirit and love is in operation and nothing, absolutely nothing can suppress Him. We more than believe, we trust Him and His words, including “Look unto me and be ye saved.”

Peace, confidence, and comfort is what God has for us—what He is giving us. We are so thankful for His love.

MORE GOOD STUFF
Today, the dose and frequency of several medicines were reduced. Although the doctors stated that Nicholas has experienced chronic GVHD of the skin, amazingly his skin looks very good. It is soft and supple, a good thing.

SHOPPING NOT JUST TO BUY, ANOTHER WAY OF BEING TOGETHER
For the first time since the November of 2004, Nicholas was in a toy store. Tonight he was in Toys R Us spending time (really, not money). It may sound silly, however, it felt wonderful seeing him spot specific things and telling us about them (how he knew what they were, what he liked about them, and sharing a reflection of his connection). It is so wonderful seeing his eyes light up and his spirit shine.

Shopping, as many of you know, is not just about buying. Shopping can be about being around friends and/or family enjoying another way of just being together. And mom & dad sure did enjoy our time with Nicholas at Toys R Us—our time just being together in another way!

January 11, 2006 Blood Counts:
WBC: 2.7
HGB: 9.5
PLTs: 148
ANC: 1,710

 


Tuesday, January 10, 2006 11:59 PM CST

BACK HOME FROM THE UNIVERSITY OF MINNESOTA CONSULTATION
Safely arrived at the San Francisco International airport around 1:00 PM. Nicholas and mom & dad are more than tired; we are mentally and physically exhausted.

DISCOURAGED, DISAPPOINTED? We understand that because of the Hypodiploid diagnosis on top of the original Acute Lymphoblastic Leukemia, and that the relapse—and so soon—after the BMT, creates the worst possible prognosis. Based on this understanding, we understand the “medical” thinking of the oncology community and the more than painful prognosis. A prognosis that leads to virtually no “medical” hope.

Although we clearly understood the painful-awfully-terrible “medical” prognosis even before going to the University of Minnesota consultation, we were hopeful to hear something “novel” or a protocol or process that would give Nicholas just that, hope for a medical cure. Remember, the BMT was with a donor providing an amazing 6 for 6 match. Remember, Nicholas experienced pretty bad GVHD and with the relapse it appears that Nicholas did not get the desired GVL effect from the GVHD. So something different should be done. We have looked at possibilities ranging from St. Jude, Duke University, and the University of Minnesota. Duke and the University of Minnesota because their expertise is with cord blood transplants—something a little different than a standard BMT.

The consultation was discouraging/disappointing, not because of the people or the hospital, because “medically” the cord blood process is one that also leads to virtually no “medical” hope. Here too, they have significant concern about Nicholas just surviving pre-conditioning treatment. And, here too, along with ours and your prayers and all of our actions, the following songs/poems provide words that are encouraging because of our love and trust in God. The songs/poems are other ways for us to constantly be close to Him. And recognizing His omnipotence, omniscience, and omnipresence we turn everything over to God for His work is the foundation of life.

? Song, “He’s My Son” (January 6, 2006 journal entry)

? Song, “His Eye Is On The Sparrow (December 3, 2005 journal entry)

? Poem, “My Beautiful Son” (October 7, 2005 journal entry and above on the Home Page)

Nicholas’ favorite thing to do since the diagnosis has been to cry & pray—being closer to God and speaking to Him. Nicholas “trusts” God and he is so patient. PLEASE, PLEASE, PRAY with us for the manifestation of love and spirit to reveal all that is true through God: We confess the Word of God abides in Nicholas and delivers to him perfect soundness of mind and wholeness in his nature, in his immortal spirit, even to the joints and marrow of his bones. That God’s Word is medication and life to Nicholas’ flesh, for the law of the Spirit of life operates in Nicholas.

NOTE: Nicholas has been vomiting one to two times a day, and he has not had an appetite for several weeks. So many different things going on can cause the vomiting and lack of an appetite… The ups and downs are so hard to experience. However, we are so thankful that God provides for Nicholas—how else would you explain his ability to, almost like an on button, to be “playing and having fun” with so much energy and enthusiasm under all of the different conditions he is experiencing.

LPCH DAY HOSPITAL APPOINTMENT TOMORROW (Wednesday)
We will be in the Day Hospital Wednesday for lab work, exam, and more consultation. The results from Saturday's CMV/PCR lab work should be complete and hopefully it will be negative (making it two negative readings in a row enabling us to declare that Nicholas has overcome the Cytomegalovirus).

REACHING OUT AND COLLABORATING
Along with LPCH collaborating with other hospitals and doctors, the parent community worldwide is amazing and there are specific doctors from hospitals that are consistently recognized. Before Nicholas' transplant we communicated with one of these specific doctors from Duke—she was amazingly helpful. Today mom & dad are sending her what we will call a "parents' brief" asking for input now based on how things have unfolded (before the BMT her helpful response was amazingly within 24 hours). We are also talking specifically with Children's Hospital Oakland. So by the end of this week we pray for clarity in listening to our Father, God. And we pray for understanding, strength, and wisdom to follow His path—a path that we are confident is right because we trust Him to lead Nicholas and us in the right direction. Because of love...

Monday, January 9, 2006

Our appointment at the University of Minnesota Medical Center was 8:00 AM CST (6:00 AM PST). The overall appointment, consultation, and tour were about 3 hours (please refer to the January 10 journal for the consultation summary).

Mom & dad were very, very discouraged/disappointed with the consultation outcome; however, our emotions and pain were placed aside because Nicholas had a chance to just have some fun in the snow. So we went back to the RMH, changed into snow gear, and off we went into the park between the RMH and the University of Minnesota Medical Center.

PLEASE CLICK ON VIEW PHOTOS AND CLICK ON THE THIRD ALBUM UNDER LINKS on this Home Page for current pictures including the Minnesota trip—lots of photos in and out of the snow. From snowballs, to sledding, to snow angels, to fun in the RMH…

In the snow, Nicholas & dad had a plan to throw snowballs—of love—at mom. And that is what Nicholas did, he threw snowballs at mom. So he was two-for-two, he hit mom & dad with snow. And dad got Nicholas back in a way, while pulling the sled carrying Nicholas, dad ran through some very powdery snow so as the sled was sliding through the snow and making soft, but fast, turns snow was kicking up into Nicholas’ face. And Nicholas loved it. Mom & dad loved seeing Nicholas laughing, playing, and simply loving having fun!

Rather than quotes from Nicholas, this time, as above please click on View Photos, and the third album under Links scrolling toward the end of the album to get a VISUAL FLAVOR OF WHAT NICHOLAS WAS FEELING.

Sunday, January 8, 2006

Safely arrived in St. Paul-Minneapolis (Twin Cities), Minnesota, around 5:00 PM (CST). And Nicholas, for the first time ever, saw, felt, and touched snow. It was lightly falling as we arrived in Minnesota.

Staying in the Ronald McDonald House (RMH) overlooking a park that leads to the University of Minnesota Medical Center. As we were walking up to the RMH, dad knelt down and Nicholas scooped up some snow and “slushed” it onto dad. One down and one to go (please refer to January 9).

With all of its Christmas lights, the RMH looks like a gingerbread house. Our room is on the third floor so we have a beautiful view of the snow falling.

January 10, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, January 10, 2006 11:59 PM CST

BACK HOME FROM THE UNIVERSITY OF MINNESOTA CONSULTATION
Safely arrived at the San Francisco International airport around 1:00 PM. Nicholas and mom & dad are more than tired; we are mentally and physically exhausted.

DISCOURAGED, DISAPPOINTED? We understand that because of the Hypodiploid diagnosis on top of the original Acute Lymphoblastic Leukemia, and that the relapse—and so soon—after the BMT, creates the worst possible prognosis. Based on this understanding, we understand the “medical” thinking of the oncology community and the more than painful prognosis. A prognosis that leads to virtually no “medical” hope.

Although we clearly understood the painful-awfully-terrible “medical” prognosis even before going to the University of Minnesota consultation, we were hopeful to hear something “novel” or a protocol or process that would give Nicholas just that, hope for a medical cure. Remember, the BMT was with a donor providing an amazing 6 for 6 match. Remember, Nicholas experienced pretty bad GVHD and with the relapse it appears that Nicholas did not get the desired GVL effect from the GVHD. So something different should be done. We have looked at possibilities ranging from St. Jude, Duke University, and the University of Minnesota. Duke and the University of Minnesota because their expertise is with cord blood transplants—something a little different than a standard BMT.

The consultation was discouraging/disappointing, not because of the people or the hospital, because “medically” the cord blood process is one that also leads to virtually no “medical” hope. Here too, they have significant concern about Nicholas just surviving pre-conditioning treatment. And, here too, along with ours and your prayers and all of our actions, the following songs/poems provide words that are encouraging because of our love and trust in God. The songs/poems are other ways for us to constantly be close to Him. And recognizing His omnipotence, omniscience, and omnipresence we turn everything over to God for His work is the foundation of life.

v Song, “He’s My Son” (January 6, 2006 journal entry)

v Song, “His Eye Is On The Sparrow (December 3, 2005 journal entry)

v Poem, “My Beautiful Son” (October 7, 2005 journal entry and above on the Home Page)

Nicholas’ favorite thing to do since the diagnosis has been to cry & pray—being closer to God and speaking to Him. Nicholas “trusts” God and he is so patient. PLEASE, PLEASE, PRAY with us for the manifestation of love and spirit to reveal all that is true through God: We confess the Word of God abides in Nicholas and delivers to him perfect soundness of mind and wholeness in his nature in his immortal spirit even to the joints and marrow of his bones. That God’s Word is medication and life to Nicholas’ flesh, for the law of the Spirit of life operates in Nicholas.

NOTE: Nicholas has been vomiting one to two times a day, and he has not had an appetite for several weeks. So many different things going on can cause the vomiting and lack of an appetite… The ups and downs are so hard to experience. However, we are so thankful that God provides for Nicholas—how else would you explain his ability to be “playing and having fun” with so much energy and enthusiasm.

Monday, January 9, 2006

Our appointment at the University of Minnesota Medical Center was 8:00 AM CST (6:00 AM PST). The overall appointment, consultation, and tour were about 3 hours (refer to the January 10 journal for the consultation summary).

Mom & dad were very, very discouraged/disappointed with the consultation outcome; however, our emotions and pain were placed aside because Nicholas had a chance to just have some fun in the snow. So we went back to the RMH, changed into snow gear, and off we went into the park between the RMH and the University of Minnesota Medical Center.

PLEASE CLICK ON VIEW PHOTOS AND CLICK ON THE THIRD ALBUM UNDER LINKS on this Home Page for current pictures including the Minnesota trip—lots of photos in and out of the snow. From snowballs, to sledding, to snow angels, to fun in the RMH…

In the snow, Nicholas & dad had a plan to throw snowballs—of love—at mom. And that is what Nicholas did, he threw snowballs at mom. So he was two-for-two, he hit mom & dad with snow. And dad got Nicholas back in a way, while pulling the sled carrying Nicholas, dad ran through some very powdery snow so as the sled was sliding through the snow and making soft, but fast, turns snow was kicking up into Nicholas’ face. And Nicholas loved it. Mom & dad loved seeing Nicholas laughing, playing, and simply loving having fun!

Rather than quotes from Nicholas, this time, as above please click on View Photos and onto the third album under Links to get a VISUAL FLAVOR OF WHAT NICHOLAS WAS FEELING.

Sunday, January 8, 2006

Safely arrived in St. Paul-Minneapolis (Twin Cities), Minnesota, around 5:00 PM (CST). And Nicholas, for the first time ever, saw, felt, and touched snow. It was lightly falling as we arrived in Minnesota.

Staying in the Ronald McDonald House (RMH) overlooking a park that leads to the University of Minnesota Medical Center. As we were walking up to the RMH, dad knelt down and Nicholas scooped up some snow and “slushed” it onto dad. One down and one to go (please refer to January 9).

With all of its Christmas lights, the RMH looks like a gingerbread house. Our room is on the third floor so we have a beautiful view of the snow falling.

January 10, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, January 7, 2006 11:59 PM CST

SATURDAY DAY HOSPITAL STAY
Nicholas slept the entire 4 ½ hours in the Day Hospital today for labs draws (blood) and the IVIG (immune boost) treatment. He did fine, no medical issues to manage while receiving the treatment.

Referring to the blood counts (above or below), the Platelets are continually rising toward the target range—we are so happy to see this development before our eyes. Now we are looking forward to the CMV/PCR results that should be ready late Monday or Tuesday.

ON OUR WAY TO THE UOM TOMORROW MORNING (SUNDAY)
Very early tomorrow morning, we will be on our way to the UOM. A private flight was not available through several different sources that provide medical flights so we are prepared to provide the protection necessary for Nicholas on a commercial flight. (Below in this journal we will talk about all the love you provide in our lives. And although we are not flying privately, we are so grateful for a friend from dad’s childhood who has been involved with the lives of our broader family since then, and who was willing to secure a private flight for us.)

We will arrive in Minnesota tomorrow around 4:30 PM CST, which is the time the sun should be setting. We understand the high temperature is expected to be around 30 degrees, and the low 16 degrees so at 4:30 it’s going to be chilly. Nicholas and mom & dad will probably rest once we get to the hotel and complete our preparation for the Monday morning consultation.

After the consultation Monday, there should be about 4 hours of daylight so we are planning to take Nicholas somewhere to have a short play-date with some snow. Then we plan to have a warm, cozy evening before another nights sleep in Minnesota.

Tuesday morning we will fly back to California.

FRIENDS
Nicholas had a lot of friends around today including a stop after the Day Hospital in Millbrae and visitors to our home this evening. After resting most of the day, he was full of energy and spirit tonight. His walking…what a pleasure to see him up on his own. Please click on View Photos to see one of the pictures from tonight, and a few others are on the current photo album.

ANGELS EVERYWHERE
While all of mom & dad’s energy and time are naturally focused on comforting and loving Nicholas as well as doing EVERYTHING we can for Nicholas, all of you have provided so much to Nicholas as well as mom & dad. You have loved us in ways that truly have helped to make this journey easier for mom & dad. Of course, not easy in terms of easing the hurt and pain associated with all that Nicholas is experiencing. However, easier in terms of so many daily responsibilities and activities that mom & dad would normally have the ability and means to do over the last 414 days if our lives had not been shattered. Shattered, changing EVERYTHING about our lives including daily responsibilities and activities.

We say angels EVERYWHERE, because friends ranging from those new (Diablo Valley Montessori School) into our lives, those from our employer (AAA), to those that we have known since mom & dad—ourselves—were kids have loved our family in amazing ways. We can refer to every letter of the alphabet and you can think of all the names beginning with those letters, and then you would envision the angels—you—that are blessings in our lives.

We love you—all of you—so very, very much. Thank you for what you do to help make things easier on us, and help to make the daily responsibilities and activities of our lives somewhat consistent with “normal.” We are charting new "normals" and that is okay, we trust God.

We praise God for His love, His love guiding us and providing you into our lives!

Note: We may not be able to update the journal Sunday and Monday nights; however, the guestbook is always open and we always welcome you to share your thoughts on the guestbook—they are very, very helpful to all of us.

January 7, 2006 Blood Counts:
WBC: 4.8
HGB: 9.2
PLTs: 122
ANC: 2,520

 


Friday, January 6, 2006 11:59 PM CST

NICHOLAS
Nicholas had a nice “sunny” day. This afternoon we went into the back yard and to the side play area. He was swinging on swings, sitting/standing on the top floor of the play structure guiding his remote control cars down below, sliding down the slide, and just spending time outside feeling the warmth of the sunshine & the comfortable breeze. Saying hello and talking with neighbors from his “look-out” tower, it felt so nice.

EARLY DAY HOSPITAL APPOINTMENT TOMORROW
We will be at LPCH Day Hospital tomorrow morning at 9:00 for IVIG (immune booster) and lab draw to determine blood counts, check chemistry levels, and the CMV/PCR level—for hopefully a second-consecutive negative reading for CMV. If so, thankfully, the doctors will declare that Nicholas has overcome the Cytomegalovirus and some of the additional medications we had to start will be reduced.

FLIGHT TO THE UNIVERSITY OF MINNESOTA (UOM)
We will fly out Sunday morning to the UOM for Monday’s consultation, and we will return Tuesday morning. After arriving back into California, we will contact LPCH before leaving the airport to obtain the results from this Saturday’s CMV/PCR level. If it is positive, we will have to go directly to LPCH Day Hospital for continued treatment with Cytogam. If negative, Nicholas will have a day off and we will prepare for the debrief that is scheduled to take place Wednesday.

SONG—HE’S MY SON
Following are the words and link to a song, “He’s My Son.” Mom first saw this as a poem months ago and tonight we came across it as a song. Please pray with mom & dad and read “He’s My Son” or place “hometown.aol.com/sunnyasalways/SUNNYSHESMYSON.html” into your browser to hear the song.

He’s My Son

Down on my knees again tonight,
Hopin' this prayer will turn out right
See, there is a boy that needs Your help
I've done all that I can do myself

His mother is tired,
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through,
But God, who he needs right now is You

Let him grow old,
Live life without this fear
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how
See, he's not just anyone,
He's my son

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow.
See, he's not just anyone

Can You hear me?
Can You see him?
Please don't leave him,
He's my son

January 6, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, January 5, 2006 11:59 PM CST

CMV IS NOW NEGATIVE—HAPPY, HAPPY EVENING
Results from yesterday’s CMV/PCR lab draw to check its level reveal that the Cytomegalovirus is now negative. Remember, on December 27 as we were on our way home from the hospital (after being admitted since December 25) we were told to turn around to be admitted back into the hospital because lab results that came in late revealed that the CMV was positive.

Before we celebrate getting through this barrier, the doctors want to have two consecutive negative readings. So the next CMV/PCR lab draw will be this coming Saturday morning; results should be available on Monday. So on Tuesday morning after returning from Monday’s consultation at the University of Minnesota (UOM), we will confer with LPCH about the CMV results to determine if we need to go into the Day Hospital that day for Cytogam if the CMV is not positive. If it is negative again, we will celebrate overcoming this barrier.

And if it is negative (we are so very thankful these blessings), we will continue to administer the Gancyclovir via IV at home for a couple of weeks. Also, the Cytogam will no longer need to be administered and its place Nicholas will receive IVIG (an immune booster) once per month. The IVIG will be administered even though his blood counts have been coming up—the CMV treatment can negatively affect the blood counts.

***Please click on View Photos to see Nicholas receiving the Pentamidine before the Cytogam today***

PLANNING A DEBRIEF AFTER TUESDAY’S UOM CONSULTATION
Tentatively, next Wednesday we will meet with Nicholas’ doctors at LPCH to debrief the information we will have learned from the UOM. The debrief will include the oncologist and bone marrow doctor. We continually pray to God to guide all of the doctors and staff, guide their thinking andtheir “hands.”

In spite of the statistics that are gently communicated to mom & dad, we focus on only one thing and that is our Father, God. For his omnipotence, omniscience, and omnipresence to manifest in Nicholas. To deliver Nicholas, healed according to His word.

WORKING ON THE FLIGHT TO UOM
There are several organizations that provide flights for patients that need to travel for medical reasons (like the UOM consultation). Organizations like Angel Flights, Corporate Angel Network, National Patient Air Travel Helpline, etc. Our focus is on securing a flight through one of these organizations because most are private flights that would provide Nicholas with a better air travel environment relative to not having to fly commercially with many, many travelers and compromise the air quality in the plane. If necessary, of course we will have to book a commercial flight, and hopefully we can secure one through one of the programs that provide discounts for patients in Nicholas’ situation.

NICHOLAS
Do you remember months ago when we talked about how Nicholas was overcoming obstacles and breaking through barriers? How he was opening up like a flower, like the sun emerging from the clouds! Looking good and warming the hearts of those engaging with him. Well, today was amazing. He proactively walked more with even greater ease, his appearance was vibrant and glowing, and he ate tonight. He had steak, green beans, biscuits, and milk. We do not take anything for granted, and we take everything as a blessing!

***Please click on View Photos to see Nicholas—vibrant and glowing, even in the Day Hospital. NOTE: Do you notice the apparent freckles on Nicholas’ skin? They are not freckles, they are dark spots on his skin from the skin GVHD (it may take a while for the skin to clear up).***

January 5, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, January 4, 2006 10:49 PM CST

SNAPSHOT OF THE DAY:

ULTRASOUND AND BILIRUBIN
The Bilirubin (liver marker) was high again today, as it has been for over a month. Remember, the December 27 CT scan was clear (good) and an ultrasound performed today revealed that all organs are normal (great). Along with the two liver enzymes (ALT and AST) being in range, the doctors are now not concerned that the Bilirubin has been high. It would be a concern if Nicholas were to be receiving chemotherapy at this time.

CYTOMEGALOVIRUS
The CMV level and PCR titers (numbers) were drawn today, however, the results were still pending at the end of the day. Tomorrow we will be back in the Day Hospital so we will then learn the level—praying that it comes down and is revealed to be normal. (Remember, the August 18, 2005 journal provides more information about CMV.)

PREDNISONE
The steroid Prednisone that has been tapered all the way down to 2.5mg once per day will not be stopped for a couple of weeks. Because of the skin GVHD, although Nicholas’ skin is looking and feeling really good, the doctors do not want to stop the Prednisone yet. Remember, Nicholas has been on Prednisone virtually since the April 7 BMT so going slow with the taper is the right thing to do according to Nicholas’ doctors.

CONSULTATION AT THE UNIVERSITY OF MINNESOTA
The consultation at the University of Minnesota (UOM) will take place this coming Monday, January 9. We are working on getting a flight for Sunday and returning Monday after the 8:00-11:00 consultation. (Tuesday, January 10 we will be back at the Day Hospital of LPCH for Cytogam.) The December 29 journal lists a few key questions as we gather information on UOM’s perspectives on curing Nicholas.

First, we pray, live for God, and listen for His direction—trusting that He will light Nicholas’ path

DAY HOSPITAL TOMORROW FOR CYTOGAM
Tomorrow we will be at LPCH for Cytogam, and Pentamidine {administered via a mist through a mask for about 5-10 minutes once per month (and will be for a long period of time) to prevent pneumonia}. It will be the third day in a row that we traveled back and forth to LPCH.

NICHOLAS
The last several weeks Nicholas has been tired more than ever. And the last couple of days he has wanted to sleep most of the day; however, he has shown the ability to quickly raise his energy level and spirits when engaging with others or seemingly when he wants to be alert and energetic.

January 4, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, January 3, 2006 11:59 PM CST

TODAY’S DAY HOSPITAL APPOINTMENT
We were at the LPCH Day Hospital from 3:30 PM to 8:55 PM; Nicholas slept virtually the entire time after being pre-medicated. Thankfully, once again the Cytogam infusion was un-eventful (no negative reactions). We continually pray for the treatment to do its job of combating the Cytomegalovirus.

Blood counts seem to be rising into range (see above for target ranges). This is good, and our first thought when his WBC rises is to pray that it is not rising as a result of the leukemia coming back. And we know and constantly pray for love & spirit to be operating in Nicholas, for the purity and perfection of God’s work to manifest itself in Nicholas.

TOMORROW’S EXAMINATION (WEDNESDAY)
Linking back to the December 23, 2005 journal, the Total Bilirubin number is still high, out of range. Remember, the Bilirubin is a liver marker. Although the other two liver markers (AST and ALT) are in range, an ultrasound most likely will be performed to assess the liver function.

Tomorrow’s appointment will be with Nicholas’ LPCH oncologist and bone marrow transplant doctor. Other than assessing the liver function, this will be a general appointment to examine Nicholas and talk about a range of things including the following:

Prednisone (steroid): Now that we have been down to .25mg once per day we will discuss discontinuing the steroid.

Cytomegalovirus (CMV, and the reason last week’s hospital stay was extended and the reason we had to postpone last Thursday’s consultation at the University of Minnesota): The CMV level will be determined to assess progress of the treatment. The Day Hospital schedule for the Cytogam treatment has changed. We will be back in the hospital this coming Thursday and Saturday.

Consultation at the University of Minnesota (UOM): Based on CMV treatment, we will discuss the timing to travel to the UOM. The thinking now is that next Monday might be the window of opportunity.

UNIVERSITY OF MINNESOTA CONSULTATION
We talked with the UOM while traveling to LPCH today for the Day Hospital appointment, and expect a call from them tomorrow morning to coordinate timing for the consultation. In the meantime, the UOM is doing all the behind the scenes work in anticipation of performing a cord blood transplant on Nicholas. This is being done because “time” is a critical factor on any next steps. So if we do decide that the UOM can offer a medical chance for a cure, all the behind the scenes work will just about be completed, including identifying the desired type of match.

NICHOLAS
Although we were away most of the day/night for the Day Hospital appointment, Nicholas had a good day. As always, conversations Nicholas has with mom & dad are truly a learning experience for us. There are so many things Nicholas remembers and or learned that enable him to generally link topics of discussion with something else. Whether it is a hospital term, something learned from school, or something he has picked up by just being a child absorbing his surroundings, we find ourselves learning from him.

Nicholas had another day where he is attempting to and is eating something—this warms our hearts to see him eat. Talking with other parents of children who were on Prednisone, we are told that when tapering down or off their kids did not have an appetite for a long time. And he only vomited once and that was this evening while taking medicine.

He is still working on walking with greater ease and overall his spirits are fairly high and laughter abundant.

January 3, 2006 Blood Counts:
WBC: 6.5
HGB: 9.4
PLTs: 95
ANC: 4,080

 


Monday, January 2, 2006 10:24 PM CST

NICHOLAS HAD A GOOD DAY
Nicholas had a better day in terms of eating, and without feeling nauseous or vomiting. A few days without being in the hospital or day appointments in the clinic or Day Hospital have been nice in terms of being able to be home getting some rest. In the hospital mom & dad are on such a high level of alert that the rest we do get is momentarily and consumed with lots of thoughts about all this “leukemia and bone marrow stuff.” We know God’s presence is with Nicholas, as well as us, and we want to be “present” doing anything and everything that we can.

HOLIDAY SURPRISES AT DINNER
Remember the December 22, 2005 journal, and the transformation of our home into a Winter Wonderland by friends & neighbors? Another surprise was the decoration of our dining room table into a picturesque holiday setting. Tonight before dinner we opened cylinder-shaped decorations tied on both ends (crackers). Inside were colorful paper crowns (you know, like for a prince, princess, king, or queen), small toy surprises, and a few jokes on scrolls. Following are a couple of the jokes:

Q: What do they sing at a snowman’s birthday party?
A: Freeze a jolly good fellow!

Q: What did the mommy broom say to the baby broom at night?
A: Go to sweep my little one!

Nicholas had fun…he was saying/singing: “Happy, happy fun time!”

CLINIC TOMORROW (TUESDAY)
Tomorrow, Nicholas will be in the Day Hospital at LPCH for the continued Cytogam treatment. We expect to be home by 9:30 PM.

January 2, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Sunday, January 1, 2006 11:59 PM CST

Nicholas woke up having a sore stomach and he is still having nausea, he vomited two times today when taking his oral medicine. To begin the New Year, Nicholas rested the entire day. Mom & dad also rested the entire day, a combination of physical and mental exhaustion.

We understand the prognosis and what to expect as discussed with Nicholas’ doctors and based on being aware of other beautiful kids with leukemia. We also know the omnipotence, omnipresence, and omniscience of God! And we truly believe in His Word knowing that God can deliver Nicholas free from leukemia because He says it has no place in His creation, Nicholas.

So while these days frighten us, we constantly lean on God for his comfort and calming of our thoughts as He lights Nicholas’ path.

On Tuesday Nicholas will be back at LPCH Day Hospital for Cytogam, examination, and we should receive details from LPCH and UOM regarding the UOM consultation date. (Remember, the CMVpositive reading that surfaced last Tuesday night prompted postponement of the consultation that was to take place last Thursday. The thinking is it will take place by January 6.)

January 1, 2006 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

Saturday, December 31, 2005 11:59 PM CST And Just After Midnight-Happy New Year

NO APPETITE, SPORADIC VOMITING
Nicholas has not had much of an appetite at all the last couple of weeks. And during the last couple of weeks Nicholas has vomited sporadically; all except one of the times it has been when administering oral medicines.

LESS ENERGY, LOTS OF SMILES
Nicholas’ energy level being rather low has not changed his smiles that freely warm our hearts. Usually, the smiles come from Nicholas joking about something or seeing and/or hearing something funny—he loves caring about others and laughter.

Sometimes it is hard for Nicholas to smile, from just not feeling very well.

This evening brother Chris’ former college housemates, Derek and Minas, came to town and Nicholas joked and played PS2 games with them. Tonight cousins entertained Nicholas during our get together with grandmother Eva (dad’s mom), aunts & uncles (dad’s sisters & their husbands), and cousins. And a telephone call to grandmother Charlotte & grandfather Floyd (mom’s parents) completed our celebration as we rang in the New Year with a pop & a bang—lots of them—as all the kids were “shooting” off New Year confetti.

HAPPY NEW YEAR
And it is a happy New Year: being together, sharing smiles & laughter, growing & learning, praying & listening, hoping & waiting while lovingly wishing and striving for happiness together for ever!

Please click on View Photos and see Nicholas grinning—smiling & beaming with happiness.

December 31, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, December 30, 2005 11:59 PM CST

DAY HOSPITAL
Remember, there are two medicines administered to treat being CMVpositive and the Cytogam is infused in the Day Hospital to manage any negative reactions. Benadryl and Tylenol are given as pre-treatment against reactions. The time in the Day Hospital began at 3:30 PM with the first set of vital signs taken and then the pre-treatment. The infusion was un-eventful (good) and we left the Day Hospital at 8:00 PM.

PACKED LIKE WE’RE READY FOR A NEWBORN
Although today’s Day Hospital appointment was just that, day appointment only, we had suitcases in the drunk of the car for Nicholas and mom & dad as if we were going away for the weekend. In fact, we keep suitcases packed at home as if we were expecting a newborn and wanting to be ready to leave for the hospital on a moments notice. Why? Because we do not want to be in a position where Nicholas has to be admitted without some of his favorite things (games, toys, books, and things for the room to make it “his room”) and a change of clothes for mom & dad.

NICHOLAS
We have to be strong and wise for Nicholas. We have to pray and listen for Nicholas. We have to do all things possible and just know that EVERYTHING IS POSSIBLE THROUGH GOD. There are several immediate decisions to be made and our trust and belief in God are what is constant in our hearts. He will lead us and deliver Nicholas as He created Nicholas—pure and without imperfection.

Nicholas awoke a lot earlier than normal and happily had a nice start to his day with KJ (sleep-over last night) and had an overall quiet morning and night. He looks great and is always quick thinking and caring about others—he has an amazing memory, keen awareness and interpretation of what he sees and hears, and engaging ways of expressing his thoughts. His energy level is still low and his walking is still far from normal.

It is so hard to hear and see what we do every day. However, we trust, believe, and know Nicholas’ joy will be restored through God. God's voice and omnipotence is our resting place for everything we need—and He has given Nicholas to us (to all of us). Learning from Nicholas is easy and hard at the same time. Easy because Nicholas' love seems to come from a natural "spring" of caring. Hard because we all wish and pray that we could "see" Nicholas' healing NOW. And you know what? Every moment of every day we are blessed with Nicholas' love (and your love to Nicholas) and that is really what matters too. Many of you may have heard the notion something like, "It is not just getting to where you want to be (or the achievement of something), it is how you get there that matters." Well, mom & dad are so proud of Nicholas and how he is gets through it all everyday, and how he lovingly works to achieve everything! And that "spring" where the caring and love originates from is given to Nicholas from God so it has to be everlasting, because He is.

December 30, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, December 29, 2005 11:36 PM CST

SO MUCH GOING ON
So nice to wake up in our own beds…and to get some rest. However, while Nicholas was still soundly sleeping the morning began early, it was fast paced, and filled with very busy conversations through the afternoon with both LPCH & the UOM as well as with our current insurance company and new one effective January 1. The objective with the insurance companies is “continuity of care” with the transition. The objective with the two hospitals is ensuring collaboration and its focus on uncovering what is best for Nicholas and navigating the transition of insurance companies.

Remember, the consultation with the UOM is based on learning their perspectives on curing Nicholas via a cord blood transplant. Some of our questions are:
1) What is it that UOM has to offer making them think they can cure Nicholas?
2) What will be different to trigger graft-versus leukemia effect (GVL) recognizing that Nicholas had bad graft-versus-host-disease (GVHD) with the April 7 BMT and it apparently did not get the GVL effect to destroy any remaining leukemia?
3) What is the UOM’s proposed conditioning treatment, recognizing the toxicity Nicholas has already been exposed to?

SCARE THIS AFTERNOON
This afternoon, Nicholas had a temperature reading 38.2 Celsius (equates to 101.2 Fahrenheit)—low-grade fever. An hour later using three different thermometers the readings were 37.8, 38.0, and 37.9. Then two and a half hours later his temperature was 37.2—so thankful for the below 38 readings because we certainly were not looking forward to going back into the hospital today. However, we will do whatever is needed to keep Nicholas safe (even if it means back to the hospital).

SLEEP-OVER
Tonight, Nicholas was so glad to have KJ at our home for a sleep-over. Play, talking, fun, dinner, movie, popcorn, hot cocoa… Yet another blessing—new, caring, loving friends. PLEASE CLICK ON View Photos.

DAY HOSPITAL TOMORROW (FRIDAY)
Tomorrow, Nicholas will be in the Day Hospital at LPCH for the continued Cytogam treatment. We expect to be home by 9:30 PM.

December 29, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, December 28, 2005 11:27 PM CST

…AND NOW WE ARE BACK HOME
Today Nicholas began treatment for the CMV: Gancyclovir and Cytogam. The Gancyclovir is administered via IV twice a day over one hour. The Cytogam is also administered via IV; however, it is infused over about 3 hours and all vital signs are checked the first 15 minutes and then every 30 minutes to manage any negative reactions.

Nicholas looked great all day and has been without fever. It was a rather quiet day in terms of energy and during the infusions of these two medicines it was uneventful medically. SO THE GOOD NEWS AGAIN, Nicholas was discharged from the hospital at 6:20 this evening—we are home again. It was kind of like another homecoming for Christmas, not because of presents, because of the warm, loving, and grateful sense of Love.

NOW WHAT
CMV TREATMENT: The Gancyclovir will be administered via IV by mom. The Cytogam will be administered again, this time in the LPCH Day Hospital this coming Friday; next Tuesday, Wednesday, Friday; and the following Monday, Wednesday, Friday and so on as necessary. The Day Hospital stays can last from 4-6 hours in the hospital.

UNIVERSITY OF MINNESOTA CONSULTATION: The LPCH doctors talked to the UOM today and they will continue to collaborate to determine timing for the consultation based on CMV treatment and other action (like possibly another round of Clofarabine) that is also time sensitive. This is all so heavy on our hearts and minds, and we are reminded of something once again. We are reminded that “…I walk with God along the way and oh it is a joyful, dominion day.” Trying to manage all of what has happened, what is going on, and what needs to be going on cannot be done alone by mom & dad (at least not us). Our prayers and listening sets our course!

Right now the thinking is that we will be going to the UOM sometime late next week. Because of the Cytogam treatment, it will probably be a quick 24-hour trip similar to the plan we had for tonight: leaving San Francisco at 11:00 PM and then leaving Minnesota at 8:00 PM the next day. It’s a good thing we’re used to being sleep deprived. We’ll make it work though.

December 28, 2005 Blood Counts:
WBC: 3.8
HGB: 9.2
PLTs: 66
ANC: 2,050

 


Tuesday, December 27, 2005

***Late Update***

THE ROLLER COASTER HAD A TWIST AND U-TURN TONIGHT
The CT Scan was completed by 6:30 tonight and the initial results were interpreted by 7:30. A good thing. Other than some mild thickening around the sinus (not a concern) the CT Scan was clear. Another good thing is that we were cleared to go home-tonight!

We left LPCH at 8:20 tonight and at 9:10 (when we were 15 minutes from home) we received a telephone call on our cell phone. It was the doctor on call and she had news that meant we had to turn around and go back to LPCH. Hard to believe that this journey has taken these types of twists and it is hard for mom & dad to keep rolling with the tides-although we will!

The news, it was that results from microbiology on blood drawn this morning revealed CMVpositive . This is Cytomegalovirus and can be very serious; the treatment is administering Gancyclovir and Cytogam. (For more information about CMVpositive, please refer to the August 18, 2005 journal when CMVpositive registered back then.)

So the twist is that before we made it home we had to go back, make a U-turn. However, the doctor did agree that we could go home, let Nicholas open up his Christmas gifts, and then return tonight so the intervention can begin.

At 1:00 AM Wednesday morning we arrived back at LPCH, and back into our same room we had left just over 4 hours ago.

UOM CONSULTATION POSTPONED
Because CMV can be serious and requires immediate intervention, the consultation at the UOM has to be postponed. Tomorrow (Wednesday) we will have LPCH and UOM collaborate on timing, recognizing that there are several implications by postponing. However, first things first.

NICHOLAS
Nicholas, naturally, was very upset about having to go back after just getting home. We did not tell him until moments before we were to begin opening Christmas gifts together as a family (with all of our boys except one). We explained the circumstances and although he understood, again, naturally he did not want to go back. He is just 5 years old, and regardless of the age would you want to go back? Thankfully, Nicholas was joyful after letting the painful news soak in and having some time to talk about it.

Nicholas wants to be free from all the clinic visits, the hospital stays, connected to an IV pole, the medicines twice a day, and all the limitations linked with cancer. And yet, as we write this journal, we can do so because we know that the only way to get out from "all this leukemia and bone marrow stuff" is to go through it. Go through it knowing that God is our sheperd and He will lead us! Go through it knowing that purity has no room for error.

OUR OTHER BOYS
We say it is about Nicholas right now, and right now has turned into right now 403 days. We pray that our love and demonstrating love will fill our boys with what they need. And, we just know that as hard as it is on them as well, they are being filled with love that provides understanding and comfort. And it is God that gives them joy and happiness through any situation.

Note: And we thank you, all of you again, for being with us for 403 days. You help us in so many ways, thank you.

PLEASE CLICK ON VIEW PHOTOS FOR NEW PICTURES
New pictures under View Photos are of Nicholas Christmas morning at LPCH, and two pictures from tonight during our brief time home before going right back to LPCH.

***Early Update, 4:00 PM CST ***

NOT GOING HOME TODAY (AWAITING CT SCAN)
The good news is that the cultures have been coming back negative. Although Nicholas has been without fever since late Christmas morning, this morning he had a few fevers. Thankfully, he is now without fever; however, the doctors are having a CT Scan performed to rule out any fungus growing.

Because the CT Scan will not be performed until 6:00 this evening and results will take a couple of hours, we are expected to be in the hospital tonight. As long as the CT Scan does not reveal any fungus or other concerns, we should be discharged tomorrow morning (Wednesday).

STILL PLAN ON GOING TO THE UNIVERSITY OF MINNESOTA (UOM) TOMORROW
We are still cleared to travel to the UOM tomorrow. We have found a "red eye" flight that leaves San Francisco tomorrow night at 11:00 PM. This will get us into Minnesota very early Thursday morning, so we will have time to freshen up before our 9:00 AM consultation Thursday morning.

We are planning to fly back home the same day, leaving Minnesota at 8:00 PM. (Maybe Nicholas will be able to play in the snow for a little bit.)

NICHOLAS
Nicholas, we say what we see & know and that is, Nicholas is making the best of his time in the hospital. Does he want to be here, no. Does he like the people here, yes. Does he want to be home, yes (to be with his brothers). So how is he getting by, truly he is finding ways to just be "playing and having fun." And, understandably it is very hard for Nicholas for many reasons (we are sure you can imagine). And, through God, love gets him and us by!

Right now he is playing interactive/educational computer games with two volunteers from Books-A-Live. And someone recently said on Nicholas' guest book: It can be Christmas all year long. Yes it can and literally it can be-we can all make that a fact through our love and caring. And for Nicholas this year, it will be Christmas in another way as well, remember, he hasn't seen what Santa left for him because we had to leave to the ER Christmas morning. So when we do go home, what a beautiful surprise(s) will be there to greet him.

He looks good!

*Oh, in the first picture under View Photos, dad wasn't scared-dad was looking at the slimey stuff on the bottom of the lagoon near the edges and thankful my "water shoes" were on (you know me)*

December 27, 2005 Blood Counts:
WBC: 3.2
HGB: 8.9
PLTs: 69
ANC: 1,700

 

 

 


Monday, December 26, 2005 11:59 PM CST

GOOD DAY
Nicholas' good spirits and playfulness carried into today and throughout the day. To family and friends he talked to on the telephone, he was very expressive about how his Christmas was very good-combination of gifts in his stocking we brought from home and gifts that were in his hospital room when he arrived yesterday at 11:00am made a lasting-postive impression on Nicholas. Nicholas has reminded us that it really is the simple things that come from love that are lasting and important.

MEDICAL STUFF
The blood, urine, and other cultures have been negative (good) so far. So the plan is for remaining cultures to be assessed and if they too are negative, Nicholas should be leaving the hospital sometime tomorrow afternoon.

Further assessment of the chest x-rays are not bearing out anything to be alarmed about--GREAT!

We were wondering about the University of Minnesota consultation we have on Thursday, leaving Wednesday, and what impact this fever ordeal will have on it. The doctors have told us that as long as the cultures do not reveal any bacteria or virus, along with Nicholas no longer requiring oxygen now that is lungs are providig what is needed, we can still travel for the consultation. Okay, now we have to finalize the airline/flight that we have been working on since last week-there are several programs and airlines that provide assistance for these types of medical flights. (Talk about collaboration, the LPCH social worker was in our room today and on the telephone helping to ensure the flight to the University of Minnesota is secured.)

Note: Looking at the blood counts below, you will notice that they have dropped. We are not sure yet, however, the lower counts could be because of a viral infection. (Typically, with a bacterial infection the WBC rises.)

FUN STUFF
Nicholas learned another magic trick from nurse Leslie. He had lots of fun demonstrating the trick tonight. Included here under fun stuff, is Nicholas. His Song of Love is just right..."playing and having fun!" We are thankful for the fun moments and days; it brings so much comfort to see him happy and feeling okay. And we still want it all, for Nicholas to be healed so he can continue to bring so much fun-and love-to others and others to him.

*Oh, and the dolphins felt soft and smooth to Nicholas*

December 26, 2005 Blood Counts:
WBC: 3.1
HGB: 8.8
PLTs: 66
ANC: 1,947

 


Sunday, December 25, 2005 9:15 PM CST

*UPDATE #3 9:15 PM CST*

Nicholas slept just about all day. He is awake now and going through his stocking and opening a couple of gifts we were able to quickly grab and bring with us very early this morning. The nurses had gifts and a stocking with Nicholas' name on them when we arrived into his room at 11:00 this morning. He is happily opening the gifts-however, understandably he wants to be home and has been crying and praying to be home with his brothers. Thankfully, some energy has surfaced and he is playful and expressively interacting with several of the nurses as well as mom and dad right now-thank you Lord!

We pray for the manifestation of Love and Spirit throughout Nicholas' body so that nothing can become of anything except purity and goodness realized.

We hope that we will be able to leave the hospital Tuesday afternoon-thank you for being with us and for your prayers. Your voices can be heard and we are trying to feel the power of your love. And our Father, God we know he loves Nicholas!

Mom was able to get her first sleep from last night around 12:30 this afternoon and slept for about 4 hours. Dad will try to get some rest sometime this evening. And we know that our Father, God will provide for us.

*UPDATE #2 11:30 AM CST*

Nicholas is being admitted into LPCH. His oxygen level was low and there is a subtle haziness on the lungs, right lower lobe from the chest x-ray. It could be pneumonia-viral or bacteria, or it could be a cold developing.

Antibiotics Ceftaz and Vancomycin will be administered shortly here in the ER. These two antibiotics provide broad coverage as an intervention to the cause of the fever until the cultures grow out to pinpoint any virus or bacteria to determine the appropriate antibiotic to fight any sepecific virus or bacteria. At this moment he does not have a fever-appears we caught it quickly.

We will be leaving the ER and going to 2North where he has always stayed here at LPCH.

Again, please PRAY with us for Nicholas' healing, please! We trust and have complete faith in God for His loving hand to comfort and guide Nicholas, as well as mom & dad and the medical staff.

We brought Nicholas' Christmas stocking with us so at least he will be able to go through it this morning. We will have his older brothers bring his Christmas gifts to the hospital this afternoon. We will do everything we can to help make this Christmas okay for Nicholas-it's going to be hard to do this because naturally he wants to be home. We want to be home so bad, just loving and being "home" with Nicholas. This roller coaster, slippery road is so very, very hard to experience. From one day to the next, and even moments within the days, hurt so much seeing Nicholas exerience all of "this."

And, again, we are thankful for the many blessings Nicholas and our family have received-it's still so very hard and it hurts so much.

*UPDATE #1 6:40 AM CST*

NICHOLAS HAS A FEVER, ON OUR WAY TO THE EMERGENCY ROOM AT LPCH
Nicholas now has a fever. We are on our way to LPCH for blood work, blood cultures to assess for any viruses or bacteria, and antibiotics.

If his blood counts are still good and he looks okay to the ER department, we may be able to come home after receiving the antibiotics.

PLEASE, PLEASE PRAY AND BELIEVE THAT NICHOLAS IS OKAY--he is God's perfect child!

 


Sunday, December 25, 2005 5:06 AM CST

***Saturday, December 24, 2005 Journal***

Day 400 (1 year and 35 days) since Nicholas’ original leukemia diagnosis

Day plus260 since the BMT

Day 104 of the relapse and Day 27 since the partial remission

CONCERNED
While Nicholas was taking his morning medicines just after noon, he vomited. Throughout the day he was not feeling very well. However, this afternoon when one of his brothers’ friend (Erin) came to visit and tonight while playing with his cousins (Mikayla, Alex, Dominique, and Stephanie) he showed spurts of energy and we were so happy to see, his joyful playfulness and laughter.

Tonight Nicholas said his lower stomach was sore and very, very late tonight he vomited again. Nicholas’ temperature hovered just below 38 Celsius (which is 101 degrees Fahrenheit) tonight. He said he just doesn’t feel well. Nicholas then asked mom if she would write the note to Santa, and he listed several things to be included, including what he was leaving for Santa and what he was leaving for the reindeer.

We PRAY that Nicholas does not come down with a fever, that his stomach pain goes away, and that he feels better so he can enjoy Christmas—giving thanks to Jesus Christ and God. And feel better so he can just enjoy “playing and having fun.”

In the Name of Jesus, we confess God’s Word concerning healing. As we do this, we believe and say that God’s Word will not return to God void, but will accomplish what it says it will. Therefore, we believe, in the Name of Jesus, that Nicholas Colby Gilbert is healed according to 1 Peter 2:24. We confess the Word of God abides in Nicholas and delivers to him perfect soundness of mind and wholeness in his nature, in his immortal spirit, even to the joints and marrow of his bones. God’s Word is medication and life to Nicholas’ flesh, for the law of the Spirit of life operates in him.

GIVING THANKS AND EXPRESSING LOVE
We asked Nicholas what he wanted to include tonight on this journal. He just asked us to say, “Mele Kalikimaka!” Which as you may remember is Hawaii’s way of saying Merry Christmas.

And mom & dad say: enjoy your families, enjoy what each has to offer, and let love guide your thoughts and actions—happy holiday!

December 24, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, December 23, 2005 11:59 PM CST

LAB WORK AND CHECK UP AT CLINIC TODAY
Referring to the December 15 journal, now that we are back from Hawaii and able to better follow up on any issues, we began tapering down on the Prednisone (steroid). Now just 2.5mg once per day and next week we may stop the Prednisone.

The lab work (blood counts and chemistry) look really good with the WBC, PLTs, and ANC rising into and/or toward the target ranges (see above targets, and counts below or also above). However, the Bilirubin (liver marker) was at 2.5 and has been climbing high out of range (below 1.4) since December 7. Tonight we re-started administering Actigall as an intervention. The other liver markers were okay and next Tuesday more lab work will be performed; if the Bilirubin is still high an ultrasound will be performed to assess the liver function.

Nicholas was very, very playful with the staff at LPCH today—he was “playing and having fun!”

OVERALL ABOUT NICHOLAS
Nicholas is in good spirits—with praise to God—and his walking continues to improve although he has about 50 percent mobility at this time. His energy level is probably about 30 percent. You may remember from recent journals that Nicholas was having a hard time finding his "happiness" and joy; the trip has certainly been very, very helpful toward Nicholas "feeling" happy and joyful. And we know, we really know, that only God can bring him happiness, joy, and complete healing. And, we know that God has brought you in our lives and you have been so amazing with your care and love for Nicholas as well as our whole family—thank you.

What remains amazingly high is Nicholas' caring, loving, and enthusiastic thoughts. We are so thankful for Nicholas' love and his "teaching" every, every day—thankful that through God Nicholas brings all these things closer for understanding and recognition!

GETTING READY FOR NEXT WEEK’S CONSULTATION
On December 28 we are scheduled to fly to the University of Minnesota for a December 29 consultation on a different type of BMT. So we are preparing questions and preparing ourselves for just about everything. And first of all, we are praying for God’s guidance, because His direction will set the right course for Nicholas—we trust and believe.

HAWAII PHOTOS
Photos of the Hawaii trip are now on the third album below, under Links. Because the third album has all of the pictures since the BMT, once you access the album, if you scroll to the end you will see Nicholas “playing and having fun” in Hawaii. You will also see mom & dad, his brothers, and his nanny (Kimmy) joining in the fun—loving Nicholas. Aside from the home page photo above, you can click on View Photos to see a few photos before going to the album.

December 23, 2005 Blood Counts:
WBC: 5.5
HGB: 10.8
PLTs: 88
ANC: 1,540

 


Thursday, December 22, 2005 5:59 PM CST

BACK HOME WITH LOTS OF LOVE AND BLESSINGS TO SHARE
Below is a quick recap of Nicholas’ time in Hawaii: December 15-21. LOTS OF PICTURES will be uploaded tomorrow onto the third album under Links below. They will be at the end of the album so once you click onto the album and access it, you can scroll to the end for many Hawaii pictures enabling you to see and feel Nicholas’ happiness. And PICTURES WITH THE DOLPHIN, HOKU, will be on the home page tomorrow.

Arriving home this morning, it was a beautiful sight—a combination of Disneyland and Disney World culminating into a Winter Wonderland. While we were in Hawaii, neighbors transformed our home into a Winter Wonderland for Nicholas. As we pulled up to the house, the lights that we had put up for Nicholas were complimented by lights, lights, and more lights everywhere. As we walked into the house the Christmas decorations we had put up for Nicholas were complimented by more lights everywhere, more decorations everywhere (including the backyard). The feeling of Christmas was brightly and lovingly felt and still felt because the transformation has truly embedded love deeper into our hearts. WHAT FRIENDS AND NEIGHBORS! We know we are blessed to have you and words alone cannot express the loving impact you have on our lives—as great as the feeling you have embedded into our hearts, the feeling of our love and embracing thanks must be felt in your hearts.

A FEW THINGS WE MISTAKENLY SAID
While in the hotel, a few times we would say things like, “what time should we leave the hospital?” Even Nicholas said, are we taking the "wheelchair,” when he meant to say travel stroller or stroller.

Wednesday, December 21, 2005

So, today, Nicholas’ trip ends and his memories just begin. Before leaving the resort, Nicholas took Gatorades to the Dolphin Quest staff. And he said the “red” one is for the trainer, Julie, because red is her favorite color.

Tuesday, December 20, 2005

Wait until you see Nicholas on a Jet Ski for the first time. What do you think he loved to do on the Jet Ski? Did you guess, accelerate? Yes, with Dad on the back, Nicholas loved pressing the accelerator, the waves flying by, and almost throwing dad off (well, not really almost throwing me off, however, he did startle me a few times). Nicholas said, “I always wanted to go Jet Skiing!

At the beach today, we made a big heart-shape outline with Nicholas in the middle. Tomorrow look for these PICTURES and some silhouettes.

Tonight, with the stars sparkling, soft trade winds, the ocean was warm and so pleasing to be just splashing around, “playing and having fun.”

Monday, December 19, 2005

More with Hoku and others. Today, Nicholas participated in a “Kids Quest For Knowledge” at Dolphin Quest. Nicholas was happy to be up close with Hoku again, and he had fun learning, asking questions, and giving some answers during a 2-hour “hands on experience for kids featuring close encounters with colorful Hawaiian reef fish (and a sting ray), green sea turtles and delightful dolphins through multi-sensory activities, games, and role-playing.” This adventure took Nicholas into the lagoon and onto the beach.

The entire Dolphin Quest staff was truly amazing with their attention and love they showed Nicholas—while maintaining a good experience for all the other kids participating.

Sunday, December 18, 2005

Back on the Ocean, today we took Nicholas snorkeling at Hanauma Bay. Nicholas briefly got into the water; however, he spent lots of time just enjoying the beach, cuddled up with mom. The last time we were in Hawaii, Nicholas was the first one going into the water to snorkel, twice. This time, just being on the beach was a good thing for Nicholas.

Saturday, December 17, 2005

Nicholas has not been shopping since his November 2004 diagnosis, and Waikiki was a fun place for Nicholas to shop and have fun looking at the street performers, cultural events, and of course a buying a few toys like his Hawaiian Ukulele (instrument). And of course, restaurants were all part of Nicholas trip and he really enjoyed eating out (its all coming back to him now). Tonight we ate in a softly-lit cabana on the beachfront at the Cabanas Seaside Grill at our hotel, the Kahala Mandarin Oriental Hawaii. We were under the stars and a gentle evening trade wind.

Nicholas said, “I love this wish because I get to go down and swim with the dolphins, swim with them and feed them.”

Friday, December 16, 2005

DOLPHINS: Nicholas woke up to a very big surprise that he could hear and see from one sliding window facing south to the ocean, and one sliding window facing east. From both views, looking down was a sizeable lagoon leading into other bodies of water. And in the lagoon, there was the big surprise. There they were…dolphins “playing and having fun” in what is called Dolphin Quest. “Dolphin Quest transports you to an extraordinary place where people an dolphins make lifelong connections, an dreams of swimming and playing with these magnificent animals come true.”

Nicholas, and the whole family, had an amazing time with one of the dolphins named Hoku. Imagine this, Hoku means “star.” Nicholas was not only face to face, he was mouth to mouth in a loving kiss. The entire staff at Dolphin Quest was incredible; they treated the entire family to lifelong memories of fun, happiness, and love. PICTURES of the experience will be posted tomorrow on the home page and the third album under Links.

LPCH: This morning, Nicholas had a little nausea, however, he did not vomit. We called and talked with the medical team at LPCH, letting them know about the vomiting and that we did not continue with the tapering of the Prednisone (please see December 15 if necessary). They agreed with our decision to not continue with the tapering. Unless there are any other medical changes experienced, Nicholas will go to LPCH next Friday for a follow up and lab work.

UNIVERSITY OF MINNESOTA: Today, we had more conversation with the University of Minnesota regarding the December 29 consultation (please see December 14 if necessary).

MORE LOVE AND WE ARE SO GRATEFUL: Another beautiful surprise as we returned to our room. There was something from mom & dad’s employer, AAA. There it was, a series of round-blue balloons floating above a package, and above these balloons was a big multi-blue covered dolphin balloon. And in the package was a Hawaiian Collectible bear named Hoku Li’ili’i (HOE-koo LEE –ee LEE-ee). Remember, Hoku means star in the Hawaiian language, and Li’ili”i means little. And we have all seen, that through God, Nicholas is our and your “little star.” Thank you AAA, and all of you who work at AAA for being with us in so many ways throughout this whole journey.

AND ANOTHER BEAUTIFUL SURPRISE, ON THE BEACH
After “playing and having fun” on the beach, Nicholas and dad were relaxing on lounge chairs facing the ocean. And guess what flew and landed right at Nicholas feet on the lounge chair? Remember the song, His Eye Is On The Sparrow, we talked about on December 3? Well, we do not put our faith on symbolism, however, the sparrow landing right at Nicholas’ feet was a beautiful surprise. It came to us that God was saying, remember, I am with you!

Thursday, December 15, 2005

Today, Nicholas was on his way back to Hawaii. In route to the airport this afternoon, Nicholas felt a little nausea and then vomited. He has traveled many, many times so we certainly do not think it was caused by anything related to trip he was taking. He has not vomited in quit a while so it is a little alarming. The only medicine change is that Tuesday the Prednisone was tapered down to 2.5mg once per day versus twice per day. However, yesterday we went back to 2.5mg twice per day because yesterday morning his stomach was a little sore. Nicholas slept about 4 hours of the 5 ½ hour flight to Oahu, Hawaii. There was a little turbulence before safely landing. Tonight, Nicholas again vomited.

December 22, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, December 14, 2005 11:59 PM CST

Day 390 since Nicholas’ original leukemia diagnosis

Day plus250 since the BMT

Day 94 of the relapse and Day 17 since the partial remission

LOVE FLOWING FROM EVERYWHERE
Friends: from Nicholas’ previous school, mom & dad’s work, and neighbors filled the afternoon and night. We talk a lot about love, and love truly continues to flow from everywhere. We are so thankful and amazed at how all of YOU have stayed with Nicholas and mom & dad on this journey—Nicholas feels it everyday, mom & dad and our other three boys live it everyday, and YOU have been right there with all of us even though the normal daily demands of life could pull you away. Thank you so much!

UNIVERSITY OF MINNESOTA CONSULTATION SCHEDULED
Referring to yesterday’s journal about reaching out to other hospitals for input and perspectives, a consultation has been scheduled for December 29, 2005 with the University of Minnesota’s cord blood transplant center. In advance of our arrival, they will review Nicholas’ records including HLA information and then conduct an initial search for cord blood. No decision has been made to have a stem cell transplant (from cord blood), however, the consultation should provide us with options to consider.

We are thankful for the collaboration of the hospitals and their collective focus on Nicholas and not on their respective offerings. And we turn to God every step of the way to ensure our focus!

MELE KALIKIMAKA
Tomorrow afternoon (Thursday), we will be on our way to Hawaii—thanks to the staff at LPCH and of course the Children’s Wish Foundation. Amazingly again, friends have taken action to further ensure Nicholas has a wonderful time in Hawaii.

This afternoon, Nicholas’ teacher and her class called Nicholas at home and sang to him, wishing him a warm and beautiful time in Hawaii. Nicholas listened fondly and when they finished singing, Nicholas said, “Mele Kalikimaka!” Which is Hawaii’s way of saying Merry Christmas. (Not only can Nicholas speak Spanish, he knows some Hawaiian words and their pronunciations.) Do you know the name of Hawaii’s State fish? Nicholas would say it for you and we think you would love hearing him accurately say “Humu-humu-nuku-nuka-apua’a.”

Mele Kalikimaka, and we will try to update the journal while we are away—loving, playing, and being with Nicholas as he relives playing in his dream playground, Hawaii. (New photos will probably have to be posted when we return.)

…I wish it could be Christmas all year long…and we will continually pray, loving and trusting God forever!

December 14, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, December 13, 2005 11:59 PM CST

TODAY’S CLINIC APPOINTMENT
While mom & dad do not match for a Kier-mismatch or Haplo bone marrow transplant, understanding that the desired match is one that will trigger a “fight” so to speak to attack any leukemia that may exist, the pain of not matching eases up knowing that our blood is so harmonious with Nicholas’ blood.

If there is no desired match with one of Nicholas’ brothers, we will discuss other options. If you are wondering why we are not talking about performing another traditional BMT with the same donor (remember, it was a match) that enabled the April 7 BMT for Nicholas, a repeat of that type of match is very rare to achieve the benefit Nicholas now needs so it is not a top choice. We are having the doctors explore the possibility of a matched unrelated donor (MUD) meeting the desired criteria that would enable a search through the various national registries. The focus is on a Natural Killer (NK) Cell transplant—these cells look for and destroy non-normal cells like those characterized by virus or tumor such as cancer. Also, a consult with the University of Minnesota is being scheduled to help uncover options. We will consult with St. Jude as necessary to ensure all sides for a solution are evaluated.

The immediate plan is still to have another 5-day course of Clofarabine shortly after returning from Hawaii. And more importantly, our focus remains on God’s direction as we continually, pray, listen, and trust Him. Our prayers continue to be for us to have the ability to make the right decisions, for the doctors’ minds and hands to be guided, and for Nicholas... …for Nicholas to be revealed as God made him, pure and perfect, because God’s creation is pure and perfect always and forever.

We were reminded today, “When God closes a door He opens a window.”

CHRISTMAS PARTY AT CHILDREN’S HOSPITAL OAKLAND
How is this for a homecoming? This evening we took Nicholas to CHO for a Pediatric Holiday Party and we say homecoming because of the connections with the MEDICAL STAFF, patients and their parents. After arriving in the Atrium, Nicholas saw his oncologist—Dr. Feusner—and the first thing Nicholas did was lean over and hugged him and affectionately put his head onto his shoulders. He then saw Dr. Beach and had a warm smile and hug for her, then Dr. Hankin and more hugs.

PATIENTS, he talked with Chris who was an older patient (about 12) when Nicholas was treated at CHO. They spent a lot of time talking then, and now too. And PARENTS of the patients, this was truly a homecoming for mom & dad as we embraced Dillon’s mom—Diane, Lauren’s mom—Emma, and talked with others met along the journey at CHO.

While events like this Holiday Party are for the kids, they are so helpful to mom & dad on multiple fronts. Most of us follow/try to support each other child’s website, share via email, and have some telephone conversations as well as live visits at home. However, the live conversations with other parents as we see our kids collectively enjoying each other and the excitement, coupled with free-flowing conversations with the staff, strangely provides some layers of comfort as we collectively fight for all of these beautiful kids.

BEAUTIFUL CLOSE TO THE EVENING AT THE NIEUWSMA’S HOME (Please click on View Photos)
This evening we spent time with long-term friends, Dave & Janie and their four girls: Victoria, Alexandra, Sophia, and Anastasia. Nicholas (well all of us) was treated to live music played by the girls. The music, they played the harp and the piano. On the harp, the girls played The First Noel, Oh Holy Night, Angels We Have Heard On High and other songs that complimented the spirit of love. Nicholas was so in-tune with the spirit of the night as he was wonderfully walking so much more, very vibrant, and lively loving us all.

AND TO EVERYONE, EVERYWHERE: We are so blessed by all of you via the way that you help, support, and love us. Thank you!

December 13, 2005 Blood Counts:
WBC: 2.2
HGB: 11.7
PLTs: 48
ANC: 946

 


Monday, December 12, 2005 8:22 PM CST

FRIGHTENED AND PRAYING FOR EVERYTHING
This evening mom & dad received news that the HLA typing (included in the November 29 journal) has been completed and neither one of us match to the degree necessary for a Kier-mismatch bone marrow transplant or Haplo bone marrow transplant. Although it is not likely, Nicholas’ brothers will be tested tomorrow to determine if they match to the degree necessary (it will take a little over a week for the results).

We are frightened and know that we need to keep loving and trusting God’s love. We really do know this, and, it is just so hard not being able to just fix all of this for Nicholas.

Tomorrow, Nicholas will have blood drawn to check blood counts and other factors. An examination will be completed to help determine what we need to do while Nicholas is in Hawaii from this Thursday to the following Wednesday. Also tomorrow, we should learn more information about the HLA typing, testing of Nicholas’ brothers, and medical options. Tonight we will continue researching all of this from home.

And we will know that it is not about what we can do—it is about loving, trusting, and leaning on God.

Nicholas, he is having good days and relative to the rash and walking, they are improving daily. We are so happy to see his full ability to light up lives with his fun, joyful, and “teaching” nature (it is amazing to see him teach through his actions of caring and loving). Note: His hair has started to grow back on his head.

December 12, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Sunday, December 11, 2005 11:59 PM CST

WE WISH IT WAS CHRISTMAS ALL YEAR LONG
This evening Nicholas was able to visit all of our neighbors during the annual Brookdale Court holiday bash with neighbors celebrating neighbors (children and parents of all ages). While we only stayed about 15 minutes for Nicholas to say hello and interact briefly with his mask on, it felt so good to once again see our neighbors celebrating the spirit of Christmas.

Then an early Christmas dinner and a surprise early visit by Santa Claus at our family friend's home during dinner provided so much love and holiday spirit completely filling our hearts. Friends Reda & Soha and their two girls, Hana and Neda, provided an incredible gift to Nicholas as well as to mom & dad and two of our other three boys. They provided the spirit of Christmas—love. And what an amazing touch, Santa Claus came early with gifts for Neda, Hana, and Nicholas.

Do you know the Christmas song, Grown-up Christmas List? Following are the words and we PRAY our love and your love will continually help to comfort hurting hearts—and PRAY for God’s love to heal Nicholas who continues to be a loving soul helping many of us better understand love.

GROWN-UP CHRISTMAS LIST

Do you remember me?
I sat upon your knee
I wrote to you with childhood fantasies

Well I'm all grown-up now
And still need help somehow
I'm not a child
But my heart still can dream

So here's my lifelong wish
My grown-up Christmas list
Not for myself
But for a world in need

No more lives torn apart
That wars would never start
And time would heal all hearts
Everyone would have a friend
And right would always win
And love would never end
This is my grown-up Christmas list

As children we believed
The grandest sight to see
Was something lovely
Wrapped beneath our tree

Well heaven surely knows
That packages and bows
Can never heal
A hurting human soul

December 11, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, December 10, 2005 11:59 PM CST

THIS IS THE SEASON, AND THE REASON FOR LOVE
Teacher Ms. Shirley, friends Theresa and Kaeli (from LPCH and RMH), friend Gina, friend Cyndi, and relatives made the day one of love, reading, learning, fun, gratitude, and sharing.

Nicholas was “taking it all in” and was giving all of us a piece of him that we remember. For a moment, will you think about the “piece of me” (Nicholas) that touches your mind, heart, or soul? Whether it is his caring, giving, loving, or joyful nature Nicholas is showing it all daily more and more—what a blessing and what beautiful lessons of trusting in God and loving people. We know what Nicholas is facing medically, however, we really do believe…

…Will you also look at the poem above and its words, every moment we hurt and are so afraid fighting this fight. We are thankful for our trust in God and it still hurts so bad to be fighting this fight. Trusting is easy and it is still so hard. Yet we do believe…

December 10, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, December 9, 2005 11:59 PM CST

Day 385 since Nicholas’ original leukemia diagnosis

Day plus245 since the BMT

Day 89 of the relapse and Day 12 since the partial remission

CHILDREN’S WISH FOUNDATION
Nicholas’ first wish, to visit Hawaii again, has been approved by the Children’s Wish Foundation. The planning has begun with the initial itinerary provided. Next Thursday Nicholas will depart to Hawaii with mom & dad and his three brothers. A couple key segments of the itinerary include Nicholas to be up close and personal with Dolphin, and snorkeling. As his Songs of Love song goes, he likes galloping on the beach so we will look into Nicholas being on a horse and galloping on the beach.

“A GREAT TIME OUT” (As one of the Warriors’ tag line state)
Wow, the Golden State Warriors are an amazing organization—they truly care about people. Not only did the Warriors place Nicholas in a suite for the game tonight against the Detroit Pistons, they arranged for Thunder (mascot) to visit Nicholas in the suite before the game. Nicholas face lit up as bright as Rudolph’s’ nose. He was so happy to see Thunder again and was full of smiles. It wasn’t just about seats keeping Nicholas from the crowd or the visit by Thunder, it was the overall follow up by the Warriors to make tonight’s experience memorable!

And it was a great game (although the Warriors lost by 3 points). Nicholas had a hot dog, nachos, and lots of fun & laughter that filled his night. And KJ, his friend and former Ronald McDonald House neighbor, joined us in the suite for the second half of the game. KJ dances for the Warriors’ Junior Jam Squad and he lit up the floor during their performance tonight. And Nicholas’ brother Chris, who now works for the Warriors after graduating from college, bought Nicholas some cotton candy to help complete Nicholas’ great time out!

*Please Click On View Photos To See Pictures Of The Fun Night*

NEXT MEDICAL CHECK
Tuesday, December 13 will be the next check up for Nicholas at LPCH. Hopefully the HLA typing will be completed by then so we can review the findings toward making decisions on next steps and where. Lab work will be performed Tuesday to check Nicholas’ blood counts and other key levels. Also, based on the examination we may further taper down on the Prednisone (steroid), getting ready to stop it all together. Progress and good times are happening and although we understand the recent prognosis, we believe in God so we believe in miracles.

BELIEVE
Faith, Pray, Trust, Believe, Believe, Believe. Believe because miracles happen and we believe that with you, we are witnessing a miracle and PRAY that God’s love manifests itself to reveal Nicholas’ healing—and all the glory to God.

December 9, 2005 Blood Counts: (Next blood draw will be December 13)
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, December 8, 2005 11:59 PM CST

VERY, VERY NICE DAY
Nicholas looks and feels good. And he had a few surprises—he got up and walked on his own a few times today. His spirit has fully awakened as he engages everyone around him with enthusiasm and joy. Like the sun peeking out from the clouds, a flower opening up revealing its vibrant beauty, or a body of water slowly and majestically providing whatever it is one needs from tranquility to playfulness, Nicholas' spirit and body is embodying them all.

And mom & dad are so thankful that God is in control of Nicholas’ life, our lives, and our joy. With so much pain we understand medically what is in front of Nicholas—and that understanding gives way to the true understanding of God’s omnipotence, omniscience, and omnipresence. And God’s love for Nicholas!

SOME GOOD MEDICAL NEWS
With yesterday’s blood draw, a sample was provided for an Immunoglobulins test (IGG) to measure the level of Immunoglobulins (antibodies) in Nicholas’ blood. Antibodies are substances produced by the body’s immune system in response to bacteria, viruses, or other foreign substances such as fungus or cancer cells. The goal was to have a level greater than 500, otherwise Nicholas would have to go back into the Day Hospital to receive another dose of IVIG (immune booster). He has been receiving these about once per month since the BMT pre-conditioning began on March 31. The good news, Nicholas’ level is 749 so he does not have to go back into the hospital or receive this treatment anymore. Another blessing!

TOMORROW, ANOTHER BEAUTIFUL SURPRISE FOR NICHOLAS
Before the November 19, 2004 diagnosis, Nicholas enjoyed going to Golden State Warriors basketball games. He especially enjoys the mascot, Thunder. Nicholas has been blessed to have Thunder visit him at our home and twice during treatment at Children’s Hospital-Oakland. Since the diagnosis Nicholas has not been able to go to any of the Warriors’ games, and through some special arrangements Nicholas will once again enjoy watching the Warriors and Thunder in person. Tomorrow night the Golden State Warriors are putting Nicholas in a suite (to provide the medical protection needed) so he can enjoy one of his passions—basketball. Hopefully, Thunder will be able to come to the suite to visit Nicholas.

December 8, 2005 Blood Counts: (Next blood draw will be early next week)
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, December 7, 2005 11:59 PM CST

A GOOD DAY AT LPCH—YES IT WAS
There was laughter coming from a LPCH clinic room today—Nicholas’ smile was beaming and laughter chiming. Nicholas was having fun, in the hospital! And he was saying and having others say tongue twisters; we were all stumped on “Unique New York” while trying to say it three times, fast. We, certainly, recognize the seriousness of Nicholas situation and recognize that some people may not understand the smiles and laughter. However, our smiles and laughter are blessings to have and to share. As serious as the awful situation is, we are thankful for moments of laughter. Thankful that Nicholas’ spirit is shinning and ringing through all that is around him—for God is providing light and direction through these very troubled times.

TODAY’S MEDICAL POINTS
The rash is giving way to Nicholas’ true self and the doctors now consider it non-active GVHD. Remember, we were tapering off of the Prednisone (steroid) and went back up on the dose when the GVHD rash was flaring up over Nicholas’ entire body. We have begun to taper back down and will taper even further down tomorrow. Thank you, Lord.

Nicholas continues to improve so much on his ability to walk without pain and much more smoothly. He is vibrant and looks vibrant—what a beautiful overall change from what Nicholas has experienced over the last 1-2 months. And we give glory to God and thanks for guiding the minds and “hands” of the doctors. And praise Him for “providing” for mom & dad.

AND NEXT STEPS: While we are awaiting the HLA typing on mom & dad to help determine what type of transplant is an option for Nicholas as well as Nicholas’ blood counts to move up to their target ranges, the bone marrow aspirate to determine full remission may not be performed. The thinking is the assumption that Nicholas is going into full remission and that a bone marrow aspirate will be done shortly before another BMT (Haplo with mom or dad as the donor or a Kier-mismatch). A second round of Clofarabine, that he received November 1-5, is being planned prior to the transplant that will be an attempt to knock out any remaining leukemia. Note: Two weeks ago we did not know if we had time, now we do with at least the partial remission. And another round of Clofarabine before the transplant would be a course to take.

We expect the HLA typing results on mom & dad in the next few days followed by a conference with both Nicholas’ oncologist and BMT doctor by Wednesday of next week. So the overall plan is to:

1) Take Nicholas back to Hawaii at the end of next week

2) Come home to Lafayette

3) Go back to Stanford-LPCH for the second round of Clofarabine

4) Go back home to Lafayette for Nicholas to recover from the Clofarabine treatment

5) Prepare and perform either a Haplo or Kier-mismatch BMT. (And we may not have to go to St. Jude or the University of Minnesota for either one of these transplants because the protocols are available through Stanford-LPCH.)

The collected focus is on maximizing Nicholas’ health every day so that he can be at his strongest during another round of Clofarabine and a second BMT.

ANOTHER BEAUTIFUL SURPRISE: Nicholas has a horse named Fancy, well, it’s not actually his horse although it is a horse named Fancy and it has been available to him via the Tilden Park stables. (Available to all kids.) Today, we received clearance from Nicholas’ medical team to ride Fancy again. Especially because the damp weather will keep the dust down and keep potential-harmful things from Nicholas like mold, fungus, and other things the could be kicked up. Depending on the weather we will take Nicholas to ride Fancy sometime during the next few days.

BEAUTIFUL NIGHT AT MORAGA VALLEY PRESBYTERIAN CHURCH
Tonight, a prayer group led by one of the pastors at Moraga Valley Presbyterian Church got together with Nicholas and mom & dad for readings, prayer, anointment, and exalting God’s name and extending God’s love. What a blessing, this group included parents of Diablo Valley Montessori School (Lafayette) students where Nicholas was going before the diagnosis, and a couple that has followed Nicholas’ journey through a connection at Children’s Hospital Oakland (CHO). The connection at CHO is Dillon, who we met and is the child that Nicholas gave a stuffed bear to a few months ago—remember? We are so thankful for God’s love. He continues to provide for us even when we do not know it is happening.

Since November 19, 2004, our lives have been violently shaken and we have been brought to our knees. And through it we have remained on our knees—in prayer and love for our Father, God. There has been a constant love lighting the paths we have followed and truly constant love providing light warming and comforting our hearts. We place Nicholas in God’s hands and care, and there is no other love to warm, comfort, and deliver Nicholas free from anything that can harm him.

December 7, 2005 Blood Counts:
WBC: 2.2
HGB: 11.7
PLTs: 25
ANC: 1,150

 


Tuesday, December 6, 2005 11:30 PM CST

RELAXING DAY (THIS "IS" A BLESSING)
Remember, several months ago when mom & dad were happy to say on several journals that it was “an uneventful medical day” because there were no medical issues or surprises. Well, that is how it was today—a day we were able to just be with each other however we wanted to and able to relax doing so. It was the first day in a very long time that we could sit down for a few moments and truly relax in thought and prayer.

LPCH TOMORROW AND SPECIAL PRAYER GROUP TOMORROW
Tomorrow we will be back at LPCH for lab work, focusing on Nicholas blood counts being in range (so another bone marrow aspirate can be performed). You know, like the poem above, “…it’s hard to believe the cancer is there…” What we do believe wholeheartedly is that God loves Nicholas so much and we believe His word so cancer or anything contrary to Love, and contrary to Spirit, has no place in Nicholas.

December 6, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, December 5, 2005 11:22 PM CST

GOOD DAY AT LPCH
Today’s lab work at LPCH revealed that 3 of 4 blood counts referenced daily on these journals have risen toward targeted ranges (listed above), and 2 of the 4 blood counts are in range. Nicholas has an absolute neutrophil count (ANC) of 1,280—this is wonderful. However, the platelets have dropped to 21 and we will be watchful and manage Nicholas’ activities to avoid falling or bumping with the platelets at this level. (Remember, it is expected that the platelets may take longer to recover.)

Nicholas continues to walk better and better; and medically, the doctors expect Nicholas to fully recover his normal walking ability.

NEXT APPOINTMENT WILL BE WEDNESDAY
This coming Wednesday lab work will be performed and we are praying that his blood counts are in range so another bone marrow aspirate can be performed to assess the remission status.

Note: We are still awaiting the HLA typing results on mom & dad, and then we will have a detailed conference with the doctors about decisions and next steps.

TRUST NOT HOPE
While it is natural for us to hope and pray that Nicholas overcomes all of the odds in front of him, we solidly TRUST in God and His love for Nicholas. As much as we LOVE Nicholas, and it is so hard to imagine any greater love, we know that God loves him even more. Because of His love for Nicholas, there is nothing that cannot be done for him. Our faith and prayers remain as strong as our love for Nicholas—the greatest love one can have for another.

December 5, 2005 Blood Counts:
WBC: 2.0
HGB: 11.6
PLTs: 21
ANC: 1,280

 


Sunday, December 4, 2005 11:59 PM CST

Day 380 since Nicholas’ original leukemia diagnosis

Day plus240 since the BMT

Day 84 of the relapse and Day 7 since the partial remission

SPECIAL MOVIE DATE
Nicholas’ special movie date was with his BMT doctor and one of the Nurse Practitioners along with the doctor’s daughter, Jenna. It was Nicholas’ first time going to a movie theater since March 31, 2005 when he began conditioning treatment for his BMT. Nicholas was full of smiles and laughter—he said it was “nice meeting Jenna and sharing popcorn and other snacks with her.” Nicholas said, “I feel happy that my doctor and Karen came to see me, I didn’t have to go see them at the hospital.”

And the movie, it was “Chicken Little.” Nicholas loved when Chicken Little said, “Oh snap!” when Chicken Little was freaked out. Hearing Oh Snap! reminded Nicholas of the Disney TV show “That’s So Raven” because it is a common statement by Raven when surprised or excited.

What a beautiful, warm, and fun time for Nicholas, as well as mom & dad seeing and feeling Nicholas’ joy. And what a wonderful time Nicholas’ doctor and nurse practitioner provided through their heartfelt kindness—we are blessed!

Oh, and one movie note that made it seem so meaningful to mom & dad: There are a couple scenes in a movie theater and one of the lines stated toward the end of the movie was, “There are times when it seems the sky is falling, never give up because every day is a new day!”

On the way home from the theater we saw “the first star” of the night appear and Nicholas was about to make his wish and asked if he could have two instead of one, which of course the answer was “YES”. His wishes were that once he got all better that he’d not have to ever be sick again and to never have to take yucky medicine, never have to be back in the hospital, and finally that he wouldn’t even need to have any more check-ups! Seems like the two were stretched a bit, however, he’s entitled—for sure!

COUSINS AND FRIENDS
This evening Nicholas’ cousins Mikayla and Alex spent time talking and playing with Nicholas. And they provided another fun atmosphere for mom & dad to be comforted by seeing Nicholas’ natural smile and laughter.

And our entire family is so blessed with the love and actions from friends who have been providing dinner, conversation, and their time to be with us in whatever ways needed.

FOLLOW UP APPOINTMENT TOMORROW (MONDAY)
Tomorrow morning we will be back at Stanford-LPCH for a check up, lab work, and appointment with child psychologist (that we requested toward helping us better talk with Nicholas as he is so tired of this “leukemia and bone marrow stuff”). Remember, once his blood counts are in the target ranges (or other wise determined), another bone marrow aspirate will be performed to determine full remission. Although, the words “full remission” doesn’t change what medically is in front of Nicholas. Here too, we lean completely on God and trust His word…

December 4, 2005 Blood Counts: (Next blood draw will be Monday, December 5)
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, December 3, 2005 11:59 PM CST

A GOOD DAY (FOCUSING ON GOD, LOVE, AND FUN)
There is nothing medical mom & dad want to talk about right now as we are focusing on God, love, and fun. We are praying and listening for His voice to direct the awful decisions before us. We have placed this terrible situation in God's hands—He will see Nicholas, mom & dad, and our family through it as we KNOW there is nothing too terrible for Him. PLEASE REFER TO THE END OF THIS JOURNAL AND TO THE WORDS OF THE SONG, His Eye Is On The Sparrow, for this is what comes to mind as we think about Nicholas and all the kids in need...

Nicholas’ friend Joey spent the afternoon with us and they played PS2 games, played on the play structure spotting the evenings’ first star and watching ducks flying by, played “tickle” games, and overall just spent time together. (Remember, Joey is Nicholas’ life-long friend. Together they have shopped with their moms, played with their dads, spent vacations in Vancouver, Hawaii, Montreal, taken gym sessions…)

Tonight, mom made a fire in the outdoors fireplace and Nicholas & Joey roasted marshmallows. Then we all sat around the fireplace gazing at the fire, listening to its sounds, looking up at the moon & the stars, while listening to Christmas music lighting up our hearts. PLEASE CLICK ON VIEW PHOTOS (Remember, other pictures that have been posted here are attached to the third album below under Links.)

Tomorrow afternoon (Sunday), Nicholas has a special movie date to watch Chicken Little—without mom & dad. For tomorrow’s journal, we’ll get his view on the movie and his thoughts about his special movie date.

As always, thank you so much for being with us.

His Eye Is On The Sparrow

Why should I feel discouraged, why should the shadows come,
Why should my heart be lonely, and long for heaven and home,
When Jesus is my portion? My constant friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I’m happy,
I sing because I’m free,
For His eye is on the sparrow,
And I know He watches me.

“Let not your heart be troubled,” His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I’m happy,
I sing because I’m free,
For His eye is on the sparrow,
And I know He watches me.

Whenever I am tempted, whenever clouds arise,
When songs give place to sighing, when hope within me dies,
I draw the closer to Him, from care He sets me free;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I’m happy,
I sing because I’m free,
For His eye is on the sparrow,
And I know He watches me.

December 3, 2005 Blood Counts: (Next blood draw will be Monday, December 5)
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, December 2, 2005 11:59 PM CST

HAPPY TO BE HOME, QUESTIONS REMAIN THE SAME, SMILES & LAUGHTER
Nicholas awoke very happy to be home; however, before getting out of bed most of the same questions still circulate in his head and through tears and crying out to mom & dad. God is always the constant presence whether we are talking, praying, or crying together.

And while Nicholas was sad this morning, expressing, “I don’t have my smile back,” we talked and prayed together. We talked with Nicholas about examples of some of the good things that are happening: being home, walking better, able to have restrictions lifted on food and places to go (however, still having to be wise in terms of his exposure to a lot of kids in enclosed places)… And we recognize that these things do not minimize Nicholas being so tired of all the medicine, his Broviac (central line) still in his chest, and not feeling at all like “himself.”

However, this afternoon we walked to our side yard to play and have lunch on his new play structure (deciding to eat on the attached picnic table or in the upper clubhouse). Before Nicholas knew, he had his “smile” back. In fact, he had his smile, his laughter, and his always constant—love—that warmed our hearts so gently and strong. We decided to eat lunch in the upper clubhouse. Nicholas loved the upper clubhouse and enjoyed the attached telescope: he could see the bike trail, better advantage for looking at planes, birds, and today lots of “shapely” clouds. And it was his place to be away from so many things on his mind (on our minds).

SPECIAL SURPRISE DRIVE TONIGHT
Constant in our journals and on the guestbook are the wonderful people we have met over the last few years at Diablo Valley Montessori School in Lafayette. Tonight, Nicholas visited the annual Posada holiday event held by his former class, at one of the parent’s home. The piñata portion was in the garage so Nicholas was able to be on the outside (dressed toasty warm) and was able to take a couple swings at the piñata. It was nice for him to see some of his friends, their siblings that he knew, and parents that he knew.

And for the eating and movie portion, we stayed just long enough for Nicholas to have two slices of pizza and some love-filled hellos. After his first bite into the pizza, Nicholas turned to mom & dad and said, “This is good!” It was the first time since prior to March 31, 2005 that he had pizza from a pizza parlor.

NOTE: The complete update on yesterday’s conference with Nicholas’ oncologist and BMT doctors that we were going to provide today will be provided after our HLA typing conference. The most difficult decisions of our lives will be stated at that upcoming conference, and it should take place by December 12.

PICTURES: While we have some pictures on the View Photos portion of this site, please click on the third album under Links and scroll to the pictures toward the end for recent and current pictures.

December 2, 2005 Blood Counts: (Next blood draw will be Monday, December 5)
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, December 1, 2005 11:59 PM CST

HOME, SWEET HOME
Nicholas is home! We left LPCH at 4:00 this evening and Nicholas’ request before arriving home was to go to the Blue Gingko restaurant. We did, and he had salmon teriyaki, shrimp tempura, California rolls, and Edamame (boiled soy beans).

VERY TIRED-COMPLETE UPDATE TOMORROW (FRIDAY)
Tomorrow we will provide a complete update on today’s conference with Nicholas’ oncologist and BMT doctors. Not surprisingly, there was a lot of discussion on the medical expectations for Nicholas if he undergoes conditioning chemotherapy before any type of BMT can be performed, medical expectations with any other type of BMT, and medical expectations if no other treatment at all was performed. And there is a lot of discussion we will have in about 10 days when the HLA typing is complete on mom & dad.

While we are overjoyed Nicholas is at least in partial remission and we pray that he gains full remission to be determined when his blood counts rise into target ranges, what medically lies in front of Nicholas is a very, very, very difficult path. And, we know that there is no path that is difficult or too difficult with God—we just know it!

The next few days we will be on our knees, lifting our arms up, raising our heads, and praying our Father, God, comforts our hearts and feeds our minds with direction…

NICHOLAS FIRST ACTIONS AT HOME
We arrived home and what a huge surprise was awaiting Nicholas. We went out into the back, side yard to see a big, beautiful new Rainbow play system that replaced an older one that Nicholas had. The new play system is a gift spearheaded by Judy M Diablo Valley Montessori School (DVMS) mom. And it was installed by friends from Nicholas’ DVMS and our Brookdale Court neighbors while Nicholas was in the hospital: Greg M, JR R, Sean C, Jesse O, Ed B, Mike K, and Harry K.

Words cannot adequately communicate the heartfelt love we feel that continues to be expressed to Nicholas. We are so deeply thankful for everyone's actions through amazing actions like this play system, and the actions of all of you who directly or indirectly touch our lives. As we have said so many times, we know that we are blessed. Thank you all!

And then, Nicholas was off to his room where he sat down and made a Christmas gift for mom. Then he wrapped it himself, topping it off with a bow.

SO MANY PICTURES TO SHARE
Tomorrow evening we are planning to update you with pictures from the last couple of weeks we were in the hospital (including Nicholas making mom’s gift).

HAWAII (NOT THE PLACE IN THE HOSPITAL WE CALL HAWAII)
Details later, however, we are planning to take Nicholas to Hawaii in about two weeks. He has been given the okay to swim with the dolphins in the ocean...and tonight he was reflecting on our Hawaii trip 1 1/2 years ago (please refer to the first album below titled A Few Months Before Diagnosis).

December 1, 2005 Blood Counts:
WBC: 0.6
HGB: 10.2
PLTs: 50
ANC: 400

Wednesday, November 30, 2005 11:30 PM CST

UPDATE #2, 9:30 PM PST

GOING HOME TOMORROW IS THE PLAN (WE’RE PACKING NOW)
We have had many “homecomings” over the last year and each one of them are like a vacation, in terms of the excitement to get there and the things planned to do. And like some vacations, we just want to experience the place—being home. The ups and downs: blood counts, emotionally, and physically, have been terribly hard to get through during this 17-day hospital stay. It has been hard because of the culmination of the last 376 days. Mom & dad realize that as hard as it has been for us, it must just be a fraction of the overall impact to Nicholas—because he has to also deal with the physical pain of the process.

And we received broad instructions to do what we would normally want to do while we’ll be home for a week. Of course, we were told to assess the places we plan to go to so we do not have Nicholas in an environment with a lot of people. Primarily we need to assess if there are a lot of kids where we want to go because of exposure to potential infections.

BEFORE GOING HOME TOMORROW
Tomorrow afternoon we will meet with Nicholas’ oncology doctor and his BMT doctor in a conference about the process moving forward and next steps. The conference should include:

· Approximate day next week for another bone marrow aspirate (after Nicholas blood counts reach target ranges) to assess if he is (medically) in full remission.

· Discussion on a potential Haplo BMT with mom or dad being the donor. Because there is a possibility that even though mom & dad are exact half-matches, neither one of us will match to the degree necessary for this type of transplant so we will also discuss a Kier-mismatch BMT. Note: The HLA typing on mom & dad will not be complete until sometime late next week so decisions will not me made tomorrow (Thursday).

· Whether or not either one of these types of BMTs for Nicholas will be performed here at LPCH, St. Jude in Tennessee (Haplo), or University of Minnesota (Kier-mismatch).

· The thinking on what BMT conditioning treatment Nicholas can (medically and physically) tolerate and makes the most sense. Including what chemotherapy or other method will be used to clean out the marrow to make room for the donor marrow for a Haplo or Kier-mismatch BMT.

· When the conditioning and BMT will be performed.

TONIGHT
· Nicholas, mom & dad went outside the hospital tonight (well, just to the circular entrance) to watch the “Light The Night” Christmas celebration and listen to live Christmas music from a school band and some Christmas Carolers (dressed like you would expect traditional Carolers to dress). And guess what, for the second day in a row a magician was performing here at LPCH, at the celebration. (Pictures should be posted over the next several days once we get home.)

· Nicholas, while crying about all the things he is going through said, “I wish I had a time machine so I can go back to make it so my wrist never hurt, so I didn’t have to have all this stuff and not have to be sick. Or go forward so I can be better already.” Well, we can only think of what is real, that we have God and “In God’s speed” Nicholas is serving Him and the pureness of his body as well as bone marrow is being revealed.

UPDATE #1, 8:50 PM PST

GOING HOME TOMORROW (THURSDAY)
Hooray, we are going home tomorrow afternoon and expect to be home for about one week. Complete update of the day will be posted later tonight.

November 29, 2005 Blood Counts:
WBC: 0.6
HGB: 7.5 (RBC transfusion this morning based on the HGB count)
PLTs: 67
ANC: 288

 


Tuesday, November 29, 2005 11:59 PM CST

Day 375 since Nicholas’ original leukemia diagnosis

Day plus235 since the BMT

Day 79 of the relapse

CELEBRATORY BONE MARROW RESULTS
Yesterday’s celebratory bone marrow results mean that Nicholas does not have to undergo another round of chemotherapy to get him into remission.

NEXT GOAL TOWARD FULL REMISSION
The doctors expect Nicholas’ blood counts to begin rising tomorrow (Wednesday) toward the target ranges. And they expect he will record an ANC (ability to fight infections) for the first time since November 5, 2005. Along with normal bone marrow (free of leukemia), full remission will be when Nicholas has an ANC of 1,000, normal WBCs, and PLTs of at least 100.

AND THEN ANOTHER BMT-DONOR BEING MOM OR DAD
Previous journals talked about a Haplo BMT, with mom or dad being the donor, which essentially means a half-match. (Having a match like April 7 did not produce enough GVL to ensure a fight against any leukemia that could have been “hiding” as we experienced causing the relapse.) The half-match by nature of it not being a “match” will produce a fight and the hope of effective GVL. More on a second BMT, Haplo transplant after further discussions with Nicholas’ doctors.

Today, blood was drawn from mom & dad so High-resolution Human Leukocyte Antigens (HLA) typing can be performed. These proteins give an individual his or her unique tissue type. The results will determine which one of us will be the donor for Nicholas’ second BMT. (Mom & dad are exact half-matches to Nicholas; however, the High-resolution typing provides critical factors toward determining which one of us should be the donor for the desired activity to take place in Nicholas’ body.)

AN ARRAY OF SURPRISES FOR NICHOLAS TODAY
Snapshot: Nicholas received a bamboo back-scratcher from one of the nurse Trang; nurse Juliette demonstrated the making of two origami figures—Somersaulting Frog and a Flapping Bird that were given to Nicholas; and this evening a magician performed for patients in the oncology unit—Nicholas participated in making an egg disappear and reappear. After the performance, mom went to Nicholas’ room retrieving Nicholas’ box of magic tricks. Nicholas performed with the magician there as well as after the magician had to leave to visit other units in the hospital.

WHEN WILL WE BE GOING HOME?
For a relative short stay compared to the 45 days we were here (LPCH) for the first BMT, the past 16 days have been very, very, very hard. However, it’s true, Love conquers all and “love” does wonders enabling us to “more than just keep going.” Love fulfills, sustains, and guides us! Thank you, Lord.

We expect to be able to go home after two consecutive days of an ANC of at least 500, and free from fever, bacteria, or viruses. We are hoping to be home by the weekend—any day will be great to go home.

Photos Note: We have lots of pictures from the past 16 days and will post many of them when we get home (access to our home PC and the camera program).

November 29, 2005 Blood Counts:
WBC: 0.5
HGB: 8.1
PLTs: 91
ANC: NA

 


Monday, November 28, 2005 6:20 PM CST

UPDATE #2, 4:20 PM PST

CELEBRATION!

We just received a telephone call from our doctor who was in the laboratory looking at the marrow drawn today. The first word he said to us was, “Celebration.” And then he said the marrow looks good: there are lots or RBCs and PLTs, “ALL KINDS OF GOOD STUFF READY TO COME OUT.” While the analysis is still underway, at the very least Nicholas is in “PARTIAL REMISSION.”

RASH
Because the doctors do not expect Nicholas is getting any GVL effect with the GVHD, today we will go back onto Cyclosporine to better manage the GVHD. And to work toward getting rid of the rash.

WORK STILL UNDERWAY
We are so thankful for the doctors, nurses, the entire staff working on Nicholas; and we know that there is still more work to be done. However, along the way we feel it is the right thing to do—and say—when appreciation is felt.

More importantly, along the way our love for God and trust remains solid. Even though we do not know what we do not know. And although this is one step of several more and the steps ahead could be slippery, our love for God and trust is what we said and choose to always say—it is solid.

And thank all of you so much for “being with us” in the ways that you are!

*EARLY MONDAY UPDATE—OPERATING ROOM PROCEDURE TODAY* 10:45 AM PST

The scheduled Tuesday bone marrow aspirate (BMA) in the operating room has been moved up to today at 11:30 AM PST. IT Methotrexate (chemotherapy) will also be administered into Nicholas spinal fluid "as a precaution" to fight any Leukemia that may be there. And a Platelets transfusion will be performed in the pre-operating room as well.

Also, while we (of course) were praying for the WBC to rise toward the target range, once again they have come down. The target range is 5.5-15.5 and since the last Clofarabine dose on November 5 it has gone up and down from 0.1 to 0.3, 0.4 to 0.5, back down to 0.3, to 0.4, 0.5, and back down today to 0.3. While this is very agonizing we are not dismayed. We continue to trust and believe in God!

Please PRAY with us that Nicholas’ marrow from the BMA will reveal the truth—that Nicholas marrow (his whole body) is pure and perfect because God’s Love and Spirit operates within Nicholas.

November 28, 2005 Blood Counts:
WBC: 0.3
HGB: 8.5
PLTs: 17
ANC: NA

 


Sunday, November 27, 2005 11:59 PM CST

GOOD DAY
“Every” day is good day for mom & dad to just be with Nicholas. Today as always there was “complete” love & devotion to Nicholas as every mother and father would provide! We thank God for the blessings enabling us to be what we need to be for Nicholas.

EVERYTHING THAT MADE UP THE DAY
And there was happiness. Also, there were sad moments with Nicholas crying on our shoulders wanting to be healed (no more rash, no more medicines, free from the IV pole and pumps, etc.). There was a lot of worry over the rash and there was—and is—a lot of worry over every thing that goes on around Nicholas and all this “bone marrow and leukemia stuff.”

WBC AND PRAYING FOR KIDS
Although ever so slightly, Nicholas’ WBC came up this morning (Sunday) and we pray that his patience & our patience with complete love for God will see his WBC continue to rise to the target range. Including all of his blood counts—Nicholas deserves it! We say deserve it and our hearts ache wanting all of these kids faced with life threatening diseases to be healed—they deserve it too. We praise God for the many blessings (small and big) in our lives and we pray for Love to be manifested in all of these kids’ bodies because they are God’s perfect children.

NEXT STEPS
Having two consecutive days with an ANC of at least 500 so Nicholas can go home. And Tuesday, when a bone marrow aspirate will be performed to analyze the marrow with a goal of seeing no blasts (no leukemia cells).

November 27, 2005 Blood Counts:
WBC: 0.5
HGB: 9.4
PLTs: 29
ANC: NA

 


Saturday, November 26, 2005 11:59 PM CST

GOOD DAY
Nicholas is so lucky to have always had amazing nurses that care for him in all aspects of the word. Day and night, he enjoyed playing with them and this time receiving a massage from them today and tonight. And this evening he spent time in the place we call Hawaii (remember, this is the outside quad with a large fountain, flowers, bushes, and an open view to the sky).

And remember the first star we saw one evening last week, Nicholas saw that star again this evening and after gazing at it, we looked at each other and smiled. In the midst of everything that is so serious and scary, we are so thankful for little things that add a sparkle to Nicholas’ moments.

RASH
The rash on Nicholas’ entire body is worrisome—Nicholas’ BMT doctor will examine it tomorrow. 1) There is an option of administering high-dose Prednisone (steroid) for a couple of days in an attempt to “knock it out.” 2) Another option is going back onto Cyclosporine because if the rash is GVHD, Cyclosporine will suppress the immune system responding to the donor cells that would be causing the rash. 3) And an option of continue watching and examining the rash if it is felt the benefit of GVHD and any GVL effect is at work destroying any potential leukemia.

Naturally, our priority is whatever is best for Nicholas including his comfort—and this too is so hard to determine. We trust in God and listen so hard for guidance. The rash and itching has been going on for a couple of weeks so it is actually normal to see Nicholas wanting to scratch although multiple intervention has been taken. So, focusing on no negative implications and praying for the GVL effect, we will further discuss all of this with his BMT doctor. During the day and before bed mom & dad combine a massage with applying cream for his face/head, and low-dose steroid cream on the rest of his entire body trying to provide some comfort.

DAY BY DAY BY DAY BY DAY
We understand that we do not have a choice in Nicholas’ cure AND we so, so long for the day that our baby is healed in all aspects of the word. We will never take what was our “normal” life for granted, never, as we pray for Nicholas’ healing and ability to do the “normal” things. We will forge new-normal things, however, our prayers include to continue living together without constant fear of all this leukemia stuff! Well, we do have a choice in how we respond and that choice is continuing to trust God, and to love, love, love.

TONIGHT’S READING
“The First Christmas” was the book mom read to Nicholas tonight and after reading it she asked Nicholas a series of questions about the first Christmas. Mom & dad looked at each other and smiled—Nicholas had all the answers.

November 26, 2005 Blood Counts:
WBC: 0.4
HGB: 8.7
PLTs: 31
ANC: NA

 


Friday, November 25, 2005 11:59 PM CST

STATUS MEDICALLY AND WHAT’S NEXT
We stated that it is expected that blood counts could be low until 14-20 days after the last Clofarabine dose and today is the 20th day. So, we were very sad that this morning’s WBC came down from 0.5 to 0.3. Although it is low and came down, we recognize that it is not “trending” down. And we are not discouraged because, again, we are reminded of God’s words including, “Be still and know that I am God.”

The doctors said THE RECOVERY CAN BE LONGER than 20 days and are encouraged that Nicholas is not otherwise sick—no fevers, no side effects causing intervention, in good spirits… Also, Nicholas’ doctor said Platelets could even have a longer recovery period.

With the RASH still present over Nicholas’ entire body, the medical intervention taken is the increase in the Prednisone dose from 10mg twice per day to 15mg twice per day. The rash seems to improve one day and then seem to have no improvement the next day. This is puzzling to the doctors (and so familiar, like the rash & steroids after the BMT although the rash then was not over his entire body). Although the dermatologist and pathologist determined it to be GVHD, we have asked the doctors to look into it being a drug (like Clofarabine) related rash although the intervention would be the same as being taken. AND with GVHD it could be a graft-versus-leukemia (GVL) effect happening, fighting to destroy any leukemia that may be around.

This coming TUESDAY’S BONE MARROW ASPIRATE: If there is no leukemia we will wait for Nicholas’ blood counts to rise toward the target ranges before next steps can be taken. If there is leukemia an option would be to do another 5-day course of Clofarabine.

HOW WE FEEL
Our faith keeps us strong; AND we hurt, hurt, hurt seeing what Nicholas is experiencing along with his reactions to what he experiences. AND during all that he is experiencing, Nicholas’ communication with everyone continues to amaze in terms of him being so aware, caring, and thinking how to please others. AND with our hurt and wondering why…, we struggle terribly to understand.

We are so thankful that Nicholas is alive and blessing us all with his love—AND we just want the discomfort, emotional feelings, pain, and the leukemia to be gone, declaring that it has no place in Nicholas. We ask for this over and over seeing that Nicholas is doing everything right—he has so much more love to share.

Notes:
Nicholas had a very good day: spending time with his friend Joey, games with hospital staff members, getting a massage from his nurse, and time playing and relaxing with mom & dad.

Yesterday’s Thanksgiving dinner for Nicholas included turkey, dressing, mash potatoes & gravy, green beans, cranberry sauce, pumpkin pie, and more.

Friday, November 25, 2005 6:03 AM CST

November 25, 2005 Blood Counts
WBC: 0.3
HGB: 8.9
PLTs: 41
ANC: NA

Thursday, November 24, 2005 11:59 PM CST

Next labs will be drawn at 2:45am (Friday) so results will not be available until around 4:00am.

 


Thursday, November 24, 2005 11:59 PM CST

Day 370 since Nicholas’ original leukemia diagnosis

Day plus230 since the BMT

Day 74 of the relapse

THANKFUL FOR A GOOD DAY
From morning through night, Nicholas had a good day. He played and spent time on artwork in and out of his room. We spent time on the hospital patio—warmly bundled up. Outside, an older patient was sitting on a bench by herself, bundled up as well (with colorful leaves falling from a nearby tree). Nicholas asked if he could go over and meet her so we did. Her name was Jolene, a 24 year old, who was in the hospital by herself. Nicholas loves meeting people and enjoyed talking with Jolene; he wanted to keep her company.

Nicholas had a good Thanksgiving dinner in the hospital shortly after noon. And for our dinner, dad’s sister and brother-in-law provided us with everything, everything to enjoy a full Thanksgiving meal. And Nicholas had a second Thanksgiving dinner tonight as he ate with mom & dad and one of his three brothers. He REALLY enjoyed his meals all day.

NICHOLAS’ COMMON WORDS TODAY, UNDERSTANDABLY, ABOUT THANKSGIVING
Mom & dad are thankful that Nicholas was in great spirits all day. And following is what he said to everyone he talked to on the phone and who visited him in his room, along with personal thoughts, “…Happy Thanksgiving, happy turkey day, and enjoy your feast!” And when he only talked to his friends (kids), he said, “Say that to them, okay?” asking his friends to say the same Thanksgiving wishes to their parents for him.

MEDICAL NOTES
Rash on his whole body “looks” to be getting better in most areas and his skin is starting to peel in some areas—we do not know if this is a start of it getting better. We pray that his WBC and ANC are now starting to rise toward the targeted range. He continues to walk with greater ease each day. We are THANKFUL for faith, faith that Nicholas is being healed in Jesus’ name and for God’s word of Love.

November 24, 2005 Blood Counts:
WBC: 0.5
HGB: 10.4
PLTs: 70
ANC: NA

 


Thursday, November 24, 2005 4:43 AM CST

*A Thanksgiving Blessing—the WBC jumped to 0.5*

It’s very early Thursday morning and as we were posting Wednesday’s journal, the lab report for blood drawn at 12:30am Thursday was delivered.

November 24, 2005 Blood Counts:
WBC: 0.5
HGB: 10.4
PLTs: 70
ANC: NA

Wednesday, November 23, 2005

Nicholas had a good day: a lot of activities, visitors from within the hospital (staff from departments like recreational therapy, child life, and nurses/nurse practitioners) as well as friends outside the hospital.

Following up on our request, a child psychologist talked with mom & dad today. She will begin to spend time with Nicholas just visiting and being present for him in partnership with mom & dad. The focus is to provide another avenue for conversation.

Next Tuesday, November 29, a bone marrow aspirate will be performed to check Nicholas’ marrow. We continually pray that it will be free of cancer so we can move toward another bone marrow transplant (remember, a half-match with mom or dad being the donor this time). We pray for Nicholas’ blood counts to begin rising into range and for healing, complete healing now, so he can enjoy life with his family and continually do things to please God.

It’s moments away from Thanksgiving and although we are in the hospital, we know that we have been blessed and give thanks to God and all of you—our family, friends new and old, and acquaintances in the hospital and through this CaringBridge site.

· We give thanks to AAA for being an employer that doesn’t just say they care, they consistently demonstrate it at all levels of the organization and look for ways to “be there” for Nicholas as well as mom & dad.

· To employees at AAA. You consistently and continually anticipate and show up in ways that are always exactly what we need even when we don’t always know what we need.

· To Diablo Valley Montessori School (DVMS) for their continued love and beautiful actions that parents could only pleasantly dream for their school to be in an awful time like we are experiencing.

· To parents of DVMS students that know Nicholas and those that do not know Nicholas now that he has been out of DVMS for over a year. You have been more than amazing in giving of your love, time, energy, cooking, AND incredible actions that a person “wouldn’t” dream because they would be too incredible.

· To all of our neighbors—parents and kids—on Brookdale Court. You have been like sisters and brothers in giving of yourselves, making our homecomings so warm and special, delivering Halloween a day early enabling Nicholas to fully enjoy Halloween although he was going back to the hospital on Halloween…

· To the staff at Children’s Hospital Oakland and Lucile Packard Children’s Hospital for the level of care that one would expect AND much, much more.

· AND to you for taking the time to be with us in the unique ways that you do—we KNOW that we are blessed to have you in our lives.

Please, have a loving Thanksgiving!

And please pray for the kids with life threatening deceases, their parents, and their families—pray for Love to consume their thoughts and for love to manifest itself to reveal Love throughout their bodies.

November 23, 2005 Blood Counts:
WBC: 0.3
HGB: 10.5
PLTs: 6 (Platelets transfusion this morning, Wednesday, based on this count)
ANC: NA

 


Tuesday, November 22, 2005 11:59 PM CST

ACTIVE DAY
To see Nicholas the last day and a half, you would see a little boy working very hard in face of things that are very hard to face. He had an active day playing, walking, drawing, painting, and exercising. He is working so hard to get out of the hospital, to walk so he can run, to get his “happiness back,” and to get his “life back” without a Broviac (the central line in his chest). We had a happy day in spite of many things that were hard to face today.

Note: Today, when Nicholas heard that Kaeli (you know Kaeli, the other BMT patient he met at the RMH) was in the LPCH Clinic because she wasn’t feeling well, he asked to go to the gift shop to buy something to cheer her up. He bought her a coin purse and met in the hospital to give her the gift.

NICHOLAS’ THREE WISHES TO CHILDREN’S WISH FOUNDATION
Following are the wishes Nicholas chose in order of his preference:
1) Trip to Maui, Hawaii with his family so he can swim with the dolphins and snorkel. In May 2004, six months before Nicholas was diagnosed, we took a trip to Maui and Nicholas always talked about going back. In fact, when you listen to Nicholas’ Song of Love, you will hear the line “…He likes snorkeling, dolphins, and swimming…”

2) Trip to Disneyland with his family. Nicholas, mom & dad have already been to Disneyland; and before Nicholas was born, mom & dad and Nicholas’ three brothers were at Disneyland.

3) Nicholas wants to meet, with his three brothers, Michael Jordan and get some basketball training from him “because he is a really good basketball player and I have never met him.”

BEAUTIFUL SURPRISE
Remember the November 3 journal and the song, Beautiful Surprise? Truly, every moment, day, week, month, and every year of Nicholas’ life—not just this past year dealing with all “this leukemia and bone marrow stuff”—Nicholas illuminates rays of sunshine that warms hearts. The beautiful surprise is “love” and the love touches and without boundaries penetrates so many lives and hearts. God’s work is so pleasing! Please God, let Your work (Nicholas) continue to do Your work. Nicholas gladly loves and serves You, Lord; and we gladly love and serve You, Lord.

TODAY’S SLIGHT WBC INCREASE IS A BLESSING
While the WBC increased from only 0.3 to 0.4, it is a blessing to see it moving in the desired direction. We believe, we really believe Nicholas’ blood counts will rise into their desired targets. With healing, we need his blood counts to rise so he has at least a 500 ANC, and we need his blood counts to rise so we can test his bone marrow—loving and praying Nicholas goes into remission, “perfect and pure.”

November 22, 2005 Blood Counts:
WBC: 0.4
HGB: 11.1
PLTs: 15
ANC: NA

 


Monday, November 21, 2005 4:18 PM CST

*UPDATE #2* (11:59PM)

LOTS OF ACTIVITES AND INTERACTION
Thankfully, Nicholas had a full day and night of activities with Books-A-Live, interacting with the nurses outside and inside his room, shooting baskets in his room, trip to the gift shop, walking up a flight of stairs (with mom & dad’s help)… In spite of today’s news and disappointment not to be going home, Nicholas had a good day.

CHILDREN’S WISH FOUNDATION
Nicholas spent time writing out three favorite wishes, and mom & dad completed paperwork for the Children’s Wish Foundation International, Inc. At Children’s Wish Foundation International, their goal is to fulfill a child’s wish in a way that will make it the greatest experience possible. Their planning includes many personal touches and a focus on making it as unique as the child.

Although we have submitted this paperwork for one of Nicholas’ wishes to be granted, we are continually praying for Nicholas to be healed, in Jesus’ name we know it can be done through God.

Note: The Prednisone dose was increased from 10mg twice a day to 15mg twice a day because of skin GVHD.

*UPDATE #1*

NICHOLAS IS NOT GOING HOME TOMORROW (Tuesday). Nicholas' immune system is still too compromised. His WBC is too low and as a result there is no reportable ANC. His ANC needs to be at least at 500 to have some ability to fight off any sort of infection that he may be exposed to.

WE ARE THANKFUL FOR MANY, MANY THINGS (including your continued connections with Nicholas) and we still hurt for many, many reasons (like those listed on last night's journal).

THE BODY & FACE RASH HAS BEEN DETERMINED TO BE GVHD. We are not sure what the intervention will be other than increasing the Prednisone (steroid). Remember the Cylclosporine and Prednisone "roller coaster" Nicholas experienced since his BMT? Well, we pray for effective treatment and overall results to eliminate the rash and that he is shielded from side effects.

AND WE KNOW THAT WE DO NOT HAVE TO FACE ANYTHING CONTRARY TO NICHOLAS BEING GOD'S PERFECT, PURE CHILD. We firmly believe this to be true, we don't just wish it to be true. Please, please, please PRAY this truth with us. Nicholas' prayers are such a heartfelt conversation with God and we patiently look to God's loving answers and delivery of Nicholas "to be normal."

November 21, 2005 Blood Counts:
WBC: 0.3
HGB: 10.7
PLTs: 20
ANC: NA

 


Sunday, November 20, 2005 11:59 PM CST

NICHOLAS’ PRAYER
“I want my life back; I want my happiness!” These have been the common words in Nicholas’ recent prayers and his very deep conversations with mom & dad. It hurts so much to hear his cry, and his SHAKING voice saying to mom & dad, “I want you to understand what I am saying…” We cry, pray, talk, talk some more, pray some more, and focus on love and togetherness. Love we receive and share. Love within and around Nicholas’ body that is at work through God. Dear God, we pray for an answer to the prayers of our little angel, show him you do listen and answer prayers….we need some steps forward to help him keep stepping…we pray this in Your name!

RASH ON ENTIRE BODY AND FACE COULD BE GVHD
The rash on Nicholas entire body could be GVHD so tomorrow the dermatologist team will examine Nicholas. A skin biopsy will be discussed to help identify the rash (remember, the one performed on October 26 was negative for GVHD).

AND CREATING TIME FOR PLAY & FUN
Nicholas and nurse Jill did lots of art today, and a little PS2 fun with interactive games. Oh, and last night (Saturday) during Nicholas’ bath, mom was teaching spelling and some sentence structure as they used bathtub-crayons for fun while learning.

HOME SOON?
Tomorrow the doctors will discuss, with us, Nicholas’ discharge. The plan was for this Tuesday and all of the latest blood and stool cultures have been negative (a good thing). It appears Nicholas’ blood counts/immune system will be important points to consider before a discharge. More importantly, through God’s omnipotence, omniscience, and omnipresence, all things are possible and healing is His word, in Jesus’ name we fervently pray.

November 20, 2005 Blood Counts:
WBC: 0.3
HGB: 10.5
PLTs: 28
ANC: NA

 


Saturday, November 19, 2005 11:59 PM CST

RED BLOOD CELL (RBC) TRANSFUSION: This morning at 3:45 Nicholas’ hemoglobin (HGB) had dropped to 7.0, which was a bigger drop than the doctors expected. There was concern about possible internal bleeding so an early morning “fire drill” was underway. Thankfully, there were no signs of bleeding. A RBC transfusion was given and later at 9:45 this morning Nicholas’ HGB was at 10.5.

MOM & DAD’S CONCERNED WITH BLOOD COUNTS REMAINING LOW; however, remember, in a journal a few days ago we talked about the expectation that blood counts could remain low for 14-20 days after the Clofarabine treatment that ended on November 5. Also, the doctors shared that the Clofarabine effect is like a mini transplant so the marrow is not expected to produce as normal at this time.

CRYING: “Father, why doesn’t God give me what I need…it’s no use, I keep doing what you ask and praying…” Nicholas does do what is asked of him by mom & dad, the medical staff, and he prays diligently—loving God. It is very hard to answer some of Nicholas’ questions and we tell him so. We talk about trusting God and at the same time letting Nicholas know that we do not know exactly what is planned for us—except that His love for us is always the foundation for directing everything around us.

Hearing Nicholas crying and praying in his room, one of the nurses shared the moment with other nurses. Another nurse, who said she was “moved” by Nicholas’ deep conversation and prayer, came in to share a story with Nicholas. She talked about a little girl who had a disease the caused her bones to be very fragile. The little girl was unable to do a lot of physical things that others did, including playing outside. She would see other kids playing and wanted so very, very bad to be outside playing. This little girl developed a love for painting and became an accomplished artist. The little girl who grew into the artist came to understand that she might never have realized her love for painting if she was able to be more physically active… While this is just an example, we realize that there are other examples that may not be as positive, however, we believe God’s words and trust His love will lead Nicholas to joy and happiness. And along the way there is already joy and happiness!

Mom & dad have a feeling of helplessness. Unable to just kiss “it” and make it go away. Today, mom felt so depressed and we feel so useless because we can’t make the itching go away, can’t fix the things that he cries out to God, asking Him to fix them. Today marks one year since the diagnosis; we look at Nicholas going through all of this and like Hana wrote in her project (included in one of these recent journals), we “wonder why.” And there are so many other kids…we wonder why.

MOVIE NIGHT watching Madagascar brought back happy moments and generated new-happy moments as we sat on the window-bench seat with popcorn and juice. We had a “crackalacking” time as Marty (the zebra) would say.

November 19, 2005 Blood Counts:
WBC: 0.2
HGB: 7.0 (RBC transfusion today based on this count); 10.5 a few hours after the transfusion
PLTs: 39
ANC: NA

 


Friday, November 18, 2005 11:18 PM CST

AS HARD AS “THIS” IS EVERY MOMENT OF EVERY DAY, THERE IS A GALLERY OF LOVE AND LIFE LEADING OUR WAY

“CAN I CRY ON YOU RIGHT NOW AND PRAY?” These were some of Nicholas’ words today, as they have been everyday for the past several weeks. A few times a day Nicholas wants mom and/or dad to just hold him while he cries and we pray. For us, we tell Nicholas that crying is such a genuine, close way of talking with God and it feels so good to cry on His shoulder. It feels so good to really “communicate” with our Father!

THE THREE ANTIBIOTICS discussed a few days ago are still being administered each day, around the clock every 8 hours, which is part of the 10-day process because of the Gram Negative Rod bacteria identified Monday. We pray that the antibiotics continue to do their job of keeping Nicholas free from harmful bacteria in his body. We first and always pray for the Love and Spirit within Nicholas to do their job, knowing that their job reveals the truth and has the power over everything! Then again, it’s almost like asking God to be God so our prayers are really acknowledging Him and recognizing Him as our Father.

ANOTHER TRICK learned and performed today. Nicholas takes two 3-inch tall rabbits and turns the two into… Well someday you may, personally, find out the outcome of this trick that “really” tricked mom & dad.

STAR BRIGHT, STAR LIGHT, THE FIRST STAR I SEE TONIGHT, I WISH I MAY, I WISH I MIGHT, HAVE THE WISH I WISH TONIGHT…And this evening while Nicholas walked onto the patio down the hall from his hospital room, we spotted the first star tonight. It was in the western sky while it was still twilight. It was a picture perfect sky with feather-like clouds seemingly suspended in air and a warm, gentle breeze providing comfort as the evening began to turn dark. And you know the “wishes” he has tonight and everyday since the leukemia diagnosis.

SHARING LOVE AND LIFE. Last night, mom & dad met a couple whose 15-month son was just diagnosed with leukemia. As hard as this journey is for mom & dad, we have been so happy to share love and life with this couple and their child. God knows what we all are thinking and praying about for all these beautiful children of His and we cry out for His love to deliver them all—to be whole, perfect, and pure!

TOMORROW (SATURDAY) MARKS 365 DAYS, one year since Nicholas’ leukemia diagnosis. And we must remember that there is nothing that has power over Nicholas aside from God. It is His omnipotence, omniscience, and omnipresence in operation that rules Nicholas’ life. So we pray, pray, pray for this truth and all the glory to God as He delivers Nicholas perfect and pure. This miracle is the light of God and we trust Him completely! And we must say again, EVERYTHING is so HARD to manage and manage through EVERYDAY...

November 18, 2005 Blood Counts:
WBC: 0.3
HGB: 9.4
PLTs: 57
ANC: NA

 


Thursday, November 17, 2005 11:59 PM CST

THURSDAY:

1) The SPECIFIC TYPE OF GRAM NEGATIVE ROD BACTERIA IS E. Coli. It is sensitive to the antibiotics being administered—praise God—so our fear that it would be a type that is not easily treatable has been allayed. Note: We normally refer to this overall journey as a roller coaster because things and situations have gone up and down (good path, bad path or like good results, bad results). And we sometimes mention that it is a slippery road because seemingly the situation is on the right path, and then suddenly slip off the path. Whatever we—you—call it, it is a “hard” road to travel and we are thankful that we are able to travel it with God providing us with blessings from many different directions. Note: E. Coli is something we all have in our bodies; however, Nicholas' blood counts being so low and ability to fight infection compromised enabled the bacteria to become "positive."

2) Remember there was a little blood in Nicholas’ stool yesterday morning, and remember his Platelets were very low so a Platelets transfusion was performed. CULTURES FROM THAT STOOL AND SINCE HAVE, THANKFULLY, COME BACK NEGATIVE.

3) The ENTIRE-BODY ITCHINESS HAS BEEN EASED SIGNIFICANTLY. The doctors, including dermatologist, have been following up regularly to determine if there is any other intervention necessary. However, the RASH ON NICHOLAS’ LEGS IS MORE PRONOUNCED and we will follow up with the doctors tomorrow. Note: Although results from the skin biopsy a few weeks ago came back indicating that rash, then, was not GVHD, his doctors today stated that what is now present could be GVHD. So, we pray that it is not GVHD and we pray that if it is it provides the GVL effect discussed in the journals when Nicholas relapsed. AND we continually pray, knowing that Nicholas is God’s creation so nothing can alter His perfect work.

4) Blood counts and chemical panel levels will be determined daily to help keep the doctors ahead of any issues to be managed (including the function of Nicholas’ organs).

5) The earliest Nicholas is planned to go home will be this coming Tuesday. They are waiting for more of the daily blood cultures to come back negative, and to ensure that Nicholas is more stable. If we do go home next Tuesday, we will need to administer some of the antibiotics at home. This is okay with us!

6) MINI CELEBRATION: Nicholas HAS NOW LEARNED TO TAKE ALL OF HIS ORAL MEDICINES VIA PILLS instead of the liquids. This is a big accomplishment and we are so, so proud of Nicholas. This makes administering ten medicines each day so, so much easier for Nicholas because of the taste when taking liquids, for mom to prepare the medicines, and for mom & dad to administer. Well, actually, we are proud of Nicholas either way—he has endured so, so much since November 19, 2004!

7) LOTS OF FUN AND LOVE TODAY:

Nicholas learned a couple MAGIC TRICKS from one of the nurses yesterday, and today he performed one of the tricks (making a ball disappear) throughout the day to the nurses and other staff coming in to see him. And before he makes it re-appear, I wish you could see his hands slowly waving over the container and hear his voice softly say “just the right words” for the ball to re-appear. NICHOLAS ACTUALLY BROUGHT WARM SMILES TO THEIR FACES. They were entertained, however, more importantly they were so happy to see Nicholas having fun.

And two representatives from “BOOKS-A-LIVE,” with its PC interactive stories and games visited Nicholas and he really had fun. When they came into his room, he SAT UP and said, “Yeah!” and started to clap. THIS BROUGHT A SMILETO NICHOLAS’ FACE.

This evening Nicholas was free from being hooked up to an IV pole for about one hour. We packed some snacks and went up onto the roof (remember, it is like a garden with trees, bushes, flowers, and nice views from up high of the surrounding area). We walked, sat, talked, prayed, and WATCHED THE SUNSET. Then, Nicholas got quiet and said, “I just want some time to think by myself because I am not happy right now. Seeing the sunset makes me think about the sunsets we watched before the leukemia—I really miss being able to do whatever we want to, whenever we want to.”

After our trip to the roof, we went to the hospital gift shop and Nicholas shopped for a couple gifts—for himself and he deserved to do just that. Before going back to his room, he spent some time at the nurses’ station playing, coloring, talking, and getting a ride on a chair by mom. SIMPLE THINGS AND MADE-UP THINGS BRING GENUINE SMILES TO EVERYONE!

VERY NICE EVENING cuddled up with mom, eating popcorn and watching a movie. And playing, playing, playing with different people from the medical team and with mom & dad helped make the evening okay.

When one doctor came into the room this evening to examine Nicholas, she was touching and pressing on his stomach. Nicholas said, “This is one of my favorite times with doctors, this feels like a massage.”

Right now, we have classic music (Mozart, Beethoven, Bach, etc.) playing in the background like we always have done, Nicholas seems to be sleeping well, and we know that our Father, God, has Nicholas in His hands as He always does.

And all of this stuff is still so very, very hard. It is so very, very scary and we know that God loves us and that fuels us to love and trust in Him.

November 17, 2005 Blood Counts:
WBC: 0.3
HGB: 8.1
PLTs: 63
ANC: NA

 


Wednesday, November 16, 2005 11:59 PM CST

SNAPSHOT UPDATES:

1) Still waiting for the specific Gram Negative Rod bacteria to be identified. Remember, Monday morning Nicholas spiked a fever that caused him to be hospitalized; and early that evening the fever went away. Today (Wednesday), early afternoon he spiked a fever and one hour later—thankfully—the fever had gone away.

2) Nicholas’ Platelets dropped to 11, so this afternoon he had a Platelets transfusion. The Gram Negative Rod bacteria can negatively impact blood counts. And with the 5-day Clofarabine treatment that ended on November 5, normal blood counts may not be present until November 25 because it takes 14-20 days to do so after Clofarabine.

3) This morning there was some blood in Nicholas’ stool (remember, very low Platelets this morning) and his heart rate was elevated throughout the day. Around 2:00 this afternoon his heart rate was around 175 prompting a “mini scare” to mom & dad as several doctors rushed into the room to examine Nicholas. He did not have any complaints of pain, his stomach felt fine, AND he looked good. In fact, aside from seeing the high heart rate on the monitor, you would not expect anything negative going on within Nicholas’ body—again, we thank God for shielding Nicholas. With the blood in his stool earlier and the high heart rates, the doctors wanted to assess for any internal bleeding. Thankfully, Nicholas was doing fine and no internal bleeding determined.

4) Nicholas' upper lip is healing great—there is no sign of infection and tonight it looks just about normal. Yeah!

5) Nicholas’ entire body has been severely itchy although he has been receiving Benadryl and Vistaril around the clock every six hours, which means one of the medicines was being administered every 3 hours. This evening in place of Benadryl we applied Triamcinolone topical cream. On stand by to administer is Nubain if there is continued itching. Tonight the itching was less bothersome and we are so glad because for about 18 hours he was constantly itching, everywhere.

6) Well, WE WILL BE IN THE HOSPITAL FOR A WHILE. Going home is targeted for next Tuesday—we hope to be out of the hospital for Thanksgiving. Last year, with the diagnosis being on November 19, we were in the hospital for Thanksgiving. It was okay (made special because of the love of family and friends that were there for us in some amazing ways). We are sure you can imagine the “Thanks”-giving we will have “just being home.” Nicholas understands that the minimum stay in the hospital for a fever is 48 hours so he was counting on going home today. Understandably, he was not happy hearing from us that we will be here through the upcoming weekend. We talked, prayed, and simply expressed our love and determination to do whatever he would like done to make the stay away from home better and better.

SPECIAL THANKS
Everyone, thank you! Thank you for being with us in your way…thoughts, prayers, guestbook entries, and a variety of personal actions that have been amazing and helpful to Nicholas, mom & dad, and our other boys. As we approach November 19 marking one year since Nicholas’ diagnosis, you can imagine that our lives have more than changed. Our lives have transformed into a mode of love x love x love…that has taken us away from so many things that we love and as a result unable to focus on or pay attention to as we try to focus and attend to Nicholas, our beautiful little boy. Again, many of you have stepped in and helped us manage our lives AND we are forever grateful. Thank you for your continued love that you express and deliver—we need it!

And tonight Nicholas seems to be having a peaceful sleep—thank You Lord!

November 16, 2005 Blood Counts:
WBC: 0.3
HGB: 8.3
PLTs: 11 (Platelets transfusion today based on this count)
ANC: NA

 


Tuesday, November 15, 2005 10:13 PM CST

NO FEVER, LOTS OF SMILES, LOTS OF THANKS, AND LOTS OF WORRIES “NAVIGATING” THROUGH THE PROCESS
Thankfully, Nicholas has been without fever since yesterday afternoon and throughout the day he had smiles, some laughter, and was in pretty good spirits most of the day. Thankfully, only once did Nicholas cry out about wanting to be home. He works so hard to have a positive demeanor—and if he does not have a positive demeanor we believe it is understandable.

NO FEVER: Although Nicholas was positive for the Gram Negative Rod bacteria and we are waiting for the cultures to further grow out to determine the type, it appears the antibiotics administered are doing their job because Nicholas is remaining free from having a fever. And he is in good spirits, lively engaging with the medical staff—smiling and having fun with them. One nurse came in this afternoon with a box of magic tricks. Nicholas quickly learned a couple of them and was performing for people who came in over the following hour. Making a ball disappear from a lantern-like holder and then re-appearing was his favorite trick to perform.

The doctors and nurses are so pleased that it appears that the right antibiotic was administered to combat the bacteria. Through God, the bacteria cannot have any power over Nicholas.

LOTS OF THANKS: A dermatologist examined Nicholas’ LIP today. The area in question was soft, not hard which is a good thing. He determined that is not linked to any fungus—that was an initial concern—and that it was probably some type of trauma that caused the swelling and the bruise/scab like appearance right in the middle of the upper lip. The swelling continues to come down and it is no longer sore when it is touched. (Nicholas or mom & dad do not know recall any trauma to his lip.)

Nicholas ATE really well throughout the day and night. He enjoyed a Calvin and Hobbes Collection of comics (BOOK) mom read to him this evening, and watching Cinderella. His leg muscles are recovering and he is walking more with greater ease.

AND LOTS OF WORRIES
While we are waiting for the specific type of Gram Negative Rod bacteria to be determined (may be determined by tomorrow night), we are afraid because some types are not easily treatable—we PRAY that it will be treatable. And our fears are calmed knowing that God loves Nicholas and Nicholas loves God. And through God we trust Him to heal Nicholas, His perfect creation!

We are thankful Nicholas is winning the fever battle. And while we are concerned about any bacteria or virus, there are other concerns like A) Having his blood counts continue to climb toward the target ranges, B) An upcoming bone marrow aspirate once his counts recover to—we PRAY for God’s touch—reveal that Nicholas is cancer free (in remission), C) Remaining in remission, and D) A successful second BMT (perhaps mom or dad will be the donor so there is more of a graft versus leukemia effect toward ensuring any remaining leukemia is destroyed, as previously stated). We believe and trust that God will heal His perfect creation, Nicholas, and that His omnipotence, omniscience, and omnipresence will deliver Nicholas free from any disease or side effects.

AT THIS POINT WE ARE NOT SURE WHEN WE WILL BE GOING HOME…as blood cultures are still being checked because of yesterday’s fever, and Nicholas’ blood counts need to recover. It may be by the beginning of next week. We PRAY that we are able to get Nicholas home in just a couple days—he deserves to be home.

November 15, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, November 14, 2005 8:58 AM CST

*UPDATE#3—ONE RESULT OF CULTURES JUST IN (11:10 PM)*

Results of one of the cultures were just delivered. It reveals positive for a Gram Negative Rod bacteria. This is the second time he was positive for this bacteria; the first time was October 12, 2005. It will take a few days for the specific type of Gram Negative Rod bacteria to be determined enabling assessment of the specific type of antibiotic to be administered. In addition to the antibiotics stated below, Amikacin is being added tonight.

So we will not be going home in 48 hours; we learn more over the next couple of days.

Please, please continue PRAYING with us for the manifestation of Love and Spirit to reveal what is true through God—that Nicholas is God’s perfect child and no disease or anything contrary to God can operate in Nicholas or impact Nicholas.

*UPDATE #2—ADMITTED INTO THE HOSPITAL THIS AFTERNOON (11:00 PM)*

The process when a BMT patient contracts a fever includes a minimum 48-hour hospital stay, two specific antibiotics that have a broad range of infection coverage, and blood cultures drawn to help identify the cause of the fever for specific action to be taken. Because mom & dad are aware of this process, we were pretty much already prepared/packed this morning after discovering that Nicholas had a fever. (After Nicholas went to the bathroom this morning around 6:00, when putting him into bed he felt warm so we checked his temperature.)

ANTIBIOTICS: The Ceftaz and Vancomycin antibiotics were administered at 10:30 and 11:30, respectively. They will be administered every 8 hours. Initial results of the blood cultures should be available tomorrow around noon. Thankfully, this afternoon the fever broke.

LIP: Also, late last night we noticed that Nicholas’ upper lip had a red mark and it was painful to him. This morning it was swollen and appeared to have a bruise right in the middle. This afternoon the swelling had significantly gone down; the doctors are not sure what to make of the lip at this time.

We are so comforted by the way Nicholas’ doctors engage with him and us. His BMT doctor is the attending doctor on the floor this week and she is looking into all the things going on. Tomorrow morning she will share her assessment with us including what she feels would be best for Nicholas. We PRAY for God’s guidance of her mind.

Nicholas had a great appetite so he and mom created a list of items dad picked up from the store this evening (in addition and sometimes in place of his meals in the hospital). And he no longer has to have his lunchmeat cooked/microwaved—so he was happy to eat a few slices of salami from the package.

ITCHY: Nicholas has been itchy all over his body the last 7-10 days for some unknown reason although no rash is visible. The doctors are “keeping an eye on it.”

REMISSION STATUS: After the blood counts recover (start to come up toward the target ranges) another bone marrow aspirate will be performed to assess the affect of the Clofarabine toward getting Nicholas into remission. We PRAY the Clofarabine has done its job, asking our Lord to shield and heal our baby!

WHAT NICHOLAS SAID TODAY
After Nicholas was told that he could have salami without it being cooked/microwaved anymore, following is what he said to mom. “I am so lucky; I still have my Broviac (catheter, central line in his chest) in and I already get to go to restaurants, and I do not need to have salami cooked before I can eat it. Other kids with bone marrow transplants have to have their Broviac out first.” While this “bone marrow and leukemia stuff” is simply devastating and awful to navigate, there are blessings along the way and we are thankful. We praise God for his loving touch.

November 14, 2005 Blood Counts:
WBC: 0.3
HGB: 12.1
PLTs: 30
ANC: NA, because some information is not available when the WBC is below 0.6

*QUICK EARLY MORNING UPDATE*

NICHOLAS HAS A FEVER
We are on our way to Stanford-LPCH. PLEASE PRAY, AND PRAY VERY HARD for Nicholas.

 


Sunday, November 13, 2005 11:58 PM CST

PRAYING
It is so very hard hearing Nicholas crying, praying, and asking why, why, why…he cannot do many things that he used to do. AND we continue to talk and pray with Nicholas—AND we certainly know and give thanks for the many blessing that we have talked about throughout the journals. So while Nicholas cries out, he and mom & dad cry out thanks as well. It's still just very hard!

Did you see Friday’s journal and the “I Wonder Why” portion? Are you a child, parent, sister, brother, grandparent, aunt/uncle, cousin, friend…of someone who is battling “anything?” Whether you are or not, “I Wonder Why” probably flows easily into your thoughts and expressions. From listening, researching, and reading, we understand the process (including the number of years) toward declaring a person is cured of leukemia. We understand the pitfalls toward first reaching remission. We understand, we understand, we understand, AND we too still “wonder why”…

AND through faith the “I Wonder Why” becomes a side note as we focus and concentrate on God’s Love. Through prayer we ask for the work He wants us to do and, yes, we ask for understanding. While Nicholas asks mom & dad why…, we talk with Nicholas letting him know that we are praying to understand many of his questions about why… AND we lean completely on our Father, God, for his Love and Spirit. We lean on Him for His direction, His work, His healing. And we give thanks because we know that Nicholas and mom & dad are blessed.

AND OTHER KIDS…we get on our hands and knees and PRAY. These are God’s perfect children as well AND we pray for their perfect healing, now. Children like Ben, Dillon, Jacob, Matthew, Kaeli, KJ, Sriya…

PLAYING AND GIVING THANKS FOR A MILESTONE KJ REACHED
Today was the 180th day since KJ’s non-cancer BMT that is a very significant milestone. KJ came over to our home for the day. Before dinner, Nicholas prayed over our meal. Nicholas’ prayer was thanking God for KJ’s 180th day, thanking God KJ’s Broviac has been removed, and thanking God for making KJ better.

Please click on VIEW PHOTOS to see KJ and Nicholas playing the board game, Candy Land.

NOTE: If you have not seen Saturday’s journal and the portion about the medical aspect of things right now, please click on JOURNAL HISTORY for a snapshot of what is upcoming.

November 13, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, November 12, 2005 11:59 PM CST

“LIVING,” LOVING, LEARNING, AND PRAYING
Through out the day and night, we prayed together. And through out the day and night we lived, had fun, shared laughter, and helped Nicholas during times of tears and sorrow—while praying for help ourselves and to help Nicholas better during his times of tears and sorrow.

DINNER OUT IS GREAT, AND IT IS NERVE RACKING
Nicholas’ grandma spent the evening and with us and is staying overnight. Tonight, dinner out for Japanese food—everything cooked, no sushi, for us (with Nicholas’ mask only as a back up if needed). Nicholas had chicken teriyaki, shrimp tempura, shrimp rolls, steamed rice, and a Japanese soft drink. He was so very happy to be sitting in a restaurant having dinner selections he loves to eat. While mom & dad are also happy to be dining out with Nicholas, it is also nerve racking ensuring that the restaurant is not too crowded, determining what he can have, ensuring his food is cooked just right and fresh, and that all precautions will be followed.

Tonight we were dining out right when the restaurant was opening to avoid a crowd. The Blue Gingko is a small restaurant and this evening right at opening it was too crowded so we did not feel comfortable eating there tonight. So, we went down the street to another one of our favorite Japanese restaurants, Kane Sushi, which is larger and was just opening for the evening. We know the owners of both so communicating about our situation is not difficult and they are very accommodating (Kane Sushi had already heard about the situation).

Trying to go at non-peak times or when the weather allows us to eat outside is best thing for Nicholas to guard against infection. AND, doing so is nerve racking—tonight when we heard a cough that came from across the restaurant, dad looked at mom so we could assess Nicholas’ safety together. With this being our first time since the BMT dining in at a restaurant, no question we were overly cautious. AND tonight although we were following guidelines for eating out, right when Nicholas was kind of full, dad scooped him up and waited in the car for mom and grandma.

Mom & dad, well Nicholas too, could be considered “old hand” diners, however, tonight it seemed like we were novice in some ways. Well, in terms of all that has been going on since the BMT, it was kind of our first time so you can imagine our questions and precautions. And in addition to the precautions provided to us, we learned some things toward ensuring the right environment.

WHY WE ARE NOT TALKING ABOUT THE MEDICAL ASPECT OF THINGS RIGHT NOW
The next medical step is a conversation with our doctors this coming Wednesday to discuss and map out the next stages of Nicholas’ journey. We will be identifying when the next bone marrow aspirate should take place (when Nicholas blood counts are up closer to normal) to determine status of the marrow. The discussion will include determining another one or two courses of the 5-day Clofarabine treatment Nicholas came off of last Saturday. And the discussion will be on another BMT, including what hospital and when.

So, Nicholas is recovering from the recent 5-day Clofarabine treatment and being in remission is the goal before another BMT can take place. AND we know, we really know, that Nicholas can already be healed/cured because of God’s omnipotence, omniscience, and omnipresence. Healed/cured because of His Word (as we have been talking about more in the journals recently).

LIVING, LOVING, LEARNING, AND PRAYING
The heading above is our focus, in spite of Nicholas’ situation. Through God there is nothing that can stop our living, loving, and learning! And we PRAY to grow in all the right ways including growing together, “forever.”

November 12, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, November 11, 2005 11:59 PM CST

SEAFOOD FEAST
Knowing that Nicholas likes shrimp and crab, family friend—Soha, and her two girls—Neda and Hana, came over and Soha prepared and cooked a great seafood dish. Nicholas really enjoyed eating fresh shrimp and crab and the tasty sauce. (Please click on View Photos)

EXERCISE AND PLAYING
Nicholas spent time exercising his legs, walking on his own, painting, and playing today. Tomorrow, if it is not raining and not too cold, we plan to take Nicholas to a park (his request).

A SCHOOL PROJECT BY HANA TO SHARE
Hana is a third grader and her sister, Neda, was in the same pre-school class with Nicholas. Recently, Hana shared a project with us that she developed about Nicholas. She submitted it to a school-wide program and following is the written content of the project titled, I Wonder Why.

“This is our friend Nicholas Colby Gilbert. Nicholas is a 5 year old. He went to school with my sister, Neda. He is so nice. Nicholas has three older brothers, Chris, Tim, and Matt.

“Nikko has Leukemia. Leukemia is a bad kind of cancer also known as cancer of the blood. Sometimes, I wonder why he has to suffer so much. A lot of kids have life-threatening diseases and others do not. Why do some kids have diseases and other don’t...I don’t know.

“Last week, we walked in the Light the Night walk. This was a fundraiser organized by the Leukemia society. They need to get money to help doctors find a cure for these kinds of terrible diseases. More than a thousand people showed up for that walk. We walked two miles and raised a lot of money. It was neat. But, at the same time, I wonder why they have not found a cure yet…a lot of people, kids and adults get Leukemia and other cancers, why can’t anyone find a cure yet…I wonder why…

“We go to visit Nikko as much as we can, and as much as he can. We like visiting him. When he is in the hospital, he is in a room that is “clean.” There are filters everywhere to clean all the germs. We have to go through double doors to get to his room. And, of course, we have to wash our hands very well. Whenever we go to see him we always see a lot of kids who are really sick…that’s sad…and that makes me wonder…why…

“A lot of times I wonder about Nicholas and other sick people, I think about life, who gets sick and who doesn’t…why do people get sick…why they have to suffer so much…why do their family and friends have to go through all of this…it’s sad…I really wonder…why…”

THE SCHOOL PROJECT AND WHAT THIS JOURNEY MEANS TO OTHERS
Hana’s project earned first place in her entire school. She called Nicholas and told him, “Congratulations, we won first price!” And following is the content of a note one judge gave Hana: “This is a tremendous essay, very well written. Nicholas has a very precious friend named Hana. I hope you become a doctor and find cures for these diseases. Very wonderful.”

As you probably read in the last several journals, Nicholas is having a hard time dealing with “all this leukemia and bone marrow stuff” in terms of wanting to do the things he would normally being doing if this leukemia journey never happened. As we talk and pray with Nicholas, we start by acknowledging that we hear him and are continually trying to understand what we do not. We pray for God to help us understand and to let Him know that we are glad to be continually serving Him AND asking for His guidance. We always stop and give thanks for what Nicholas is able to do AND what he does have in his life. What he has is our family, friends, churches of many denominations, and new acquaintances from EVERYWHERE caring, supporting, loving, and praying for the truth…

The truth…confessing that the Word of God abides in Nicholas and delivers to him perfect soundness of mind and wholeness in his nature in his immortal spirit even to the joints and marrow of his bones. That God’s Word is medication and life to his flesh, for the law of the Spirit of life operates in Nicholas. That we have on the whole armor of God and our shield of faith protects Nicholas from all the fiery darts of anything wicked. The truth that Jesus is the High Priest of our confession; and we hold fast to our confession of faith in God’s Word. We stand immovable and fixed in full assurance that Nicholas has health and healing both spiritually and physically right now, in the Name of Jesus.

So this journey is one that, seemingly, is bringing us all together caring, supporting, loving, and praying for the truth…that Nicholas’ has been created in God’s likeness and image so Nicholas has Love and Spirit on board directing his life.

November 11, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, November 10, 2005 11:59 PM CST

RESTAURANTS, MOVIE THEATERS, AND STORES
Nicholas reached a HUGE MILESTONE today, he can now go to restaurants, movie theaters, and even stores—during non-busy times and we need to ensure the food is cooked fresh (not prepared and sitting out) and at theaters and stores we need to ensure what Nicholas touches is disinfected.

Tonight, Nicholas chose The Blue Ginko (Japanese restaurant) and McDonalds. He wanted to go to both, however, we took him to McDonalds tonight and we will go to The Blue Ginko tomorrow.

AND his first movie theater visit since the diagnosis may be just Nicholas and a very special date without mom & dad (while mom & dad will be near by enjoying a date of their own).

THE REST OF THE JOURNEY
This morning Nicholas received an IVIG treatment (immune booster) and this afternoon he received a Platelets transfusion—his Platelets were down to 9. The medical staff is very, very pleased at how well Nicholas has tolerated last week’s chemotherapy (that was very, very scary to mom & dad). And as we wrote in a journal last week, we know and understand more and more each day the realization that God—Love and Spirit—is GREATER THAN ANYTHING and SUPERSEDES EVERYTHING. There is nothing that can be placed into Nicholas’ body that can have power over God—nothing.

Next Wednesday conversations with two of Nicholas’ doctors will take place to map out the next stages of Nicholas’ journey. We are so grateful to know that God is our Sheppard and He will lead us!

SONG IN YESTERDAY’S JOURNAL
Following is the link, well the address, if you would like to hear the music to the song (Hold On) that was stated in yesterday’s journal. For me to get it to play, I copied and pasted the address onto a Word document and then hit the return key so the “http://www.inspiringthots.net/movie/hold-on.php” becomes a link that you can click onto. Then it should play for you.

November 10, 2005 Blood Counts:
WBC: 0.1
HGB: 11.
PLTs: 9
ANC: NA

 


Wednesday, November 9, 2005 10:52 PM CST

Day 355 since Nicholas’ original leukemia diagnosis

Day plus215 since the BMT

Day 59 of the relapse

NICHOLAS’ HEART AND SOUL FUELED A PERSONAL CHALLENGE TODAY
Running is something that kids and many of us like to do at times. Running is something that many of us take for granted. While Nicholas has been doing some leg exercises and walking more and more to build up his leg muscles since being immobile for about two weeks (a couple of weeks ago), walking un-aided is still a challenge.

And through prayer, Nicholas continues to ask God to be able to run. And Nicholas said he wanted to try running. While we were at his side, Nicholas said he was going to do it; he tried to run and fell. He practiced walking some more through out the day, and this evening with our arms underneath his, Nicholas asked to practice running. He practiced and tried running again—his trust in God and his heart and soul fueled his desire and his actions. Nicholas did not run un-aided today, however, he tried, practiced, tried, and has the desire and actions to “keep on.” He “ran” better tonight than he did this morning!

AND Nicholas’ heart and soul works, prays, and wants so badly for God’s love to reveal that he is pure and God’s perfect creation free from any disease.

NICHOLAS’ JOURNEY, OUR JOURNEY
Hold on, Hope, Trust, Love, Family, Friends, Yourself, Dreams, Room for Others, Contribute. These things are at the core of Nicholas, mom, and dad’s life. And God is the source for it all.

Following is a song by an unknown author that was recently shared with us. We are sharing it with you as it gives you more insight to Nicholas, mom, and dad.

Hold On

Hold on
Hold on tightly to what is truly important in life.
Hold on to faith, it is the source of believing that all things are possible.
It is the fiber and strength of a confident soul.

Hope
Hold on to hope,
It banishes doubt and enables attitudes to be positive and cheerful.

Trust
Hold on to trust;
It is at the core of fruitful relationships that are secure and content.

Love
Hold on to love;
It is life’s greatest gift of all, for it shares, cares, and gives meaning to life.

Family
Hold on to family;
They are your roots and the beginnings that you grew from;
They are the vine that has grown through time to nourish you, help you on your way, and always remain close by

Friends
Hold on to friends;
They are the most important people in your life, and they make the world a better place.

Yourself
Hold on to all that you are and all that you have learned,
For these things are what makes you unique.
Don’t ignore what you feel and what you believe is right and important;
Your heart has a way of speaking louder than your mind.

Dreams
Hold on to your dreams;
Achieve them diligently and honestly.
Never take the easy way or surrender to deceit.

Room for Others
Remember others on your way and take time to care for their needs.
Enjoy the beauty around you.
Have the courage to see things differently and clearly.

Contribute
Make the world a better place one day at a time.
And don’t let go of the important things that give meaning to your life.

Hold on to these things!”

Thanks for “holding on” with Nicholas, mom & dad, and our other three boys. Please hold on to God and PRAY with us as we hold on to God first, and through God hold on to hope, trust, love, family, friends, ourselves, dreams, room for others, and as we hold on to contributing.

Note: Follow up appointment tomorrow at LPCH.

November 9, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, November 8, 2005 11:59 PM CST

PRETTY LIGHTS
This evening we drove up Fish Ranch Road by the Caldecott Tunnel and the view was so pretty, as always. We could see lights glittering from the Golden Gate Bridge, Bay Bridge, San Mateo-Hayward Bridge, and from all the lights that make up the surrounding cities. And what a special treat to learn from the guest book about the Berkeley Hills web cam (thank you Char)!

TOUGH JOURNEY, TOUGHER FAITH
Reflecting on the last couple of journals, we are sure that you can feel that this journey has been getting tougher emotionally as well as physically. And our faith, our passion for trusting God’s words, and our love for our Father—God—is absolutely tougher although very, very hard. Questions and doubts have flirted with our thoughts. We have wondered why Nicholas has not been healed, made whole, and why the realization of anything contrary to purity, perfection have not been cast aside. And, our faith becomes stronger; continually we remain faithful, loving, and praying to adhere to His word; and our love for God is not weakened but strengthen because we believe in His word!

If God’s plan is for us to demonstrate love through this journey, as tough as it gets we will demonstrate love. Although for Nicholas we ache so much hearing his prayers and seeing him work so hard loving and remaining loving, we know that Nicholas is completely loved by God so His love will deliver Nicholas un-harmed and free from disease because it cannot exist in what God created. And, we do wonder why… And then we pray to further understand, and pray for His help to continually help us to understand. We will obey His word, trusting in His word, and yes, we do believe that He has an absolutely beautiful plan for us—as tough as this road is it will be a faint memory and any work we are doing for God is the right work to be doing.

THURSDAY APPOINTMENT AT LPCH
This Thursday Nicholas will be at LPCH—clinic appointment for an immune booster and discussion on next steps. And Nicholas said today, “Father, I know I am healed…”

November 8, 2005 Blood Counts:
WBC: 0.1
HGB: 12.4
PLTs: 37
ANC: NA (Neutropenia: Decrease below normal in the concentration of Neutrophils, a type of white blood cell that is the main cell that combats infection. Just coming off of last week’s chemotherapy treatment has this effect)

 


Monday, November 7, 2005 11:59 PM CST

NICHOLAS' WORDS TO MOM & DAD, AND HIS PRAYER
“Daddy, I know God loves me and he is taking care of me. But daddy, I want the healing to be real, right now, please. Will He do it?” This was one of many conversations Nicholas shared with mom & dad through out the day. Literally, through out the day Nicholas would stop and say, “Will you read some more of the Bible to me?” We read from The Children’s Bible and the Bible.

And we had several prayers that we prayed aloud. Early evening we prayed while Nicholas was in dad’s arms, looking out into the sky, through the clouds sensing the moon and stars that were there even though we could not see them tonight because of the clouds. As we prayed, walked, looking up through a large picture window, swaying softly to the words of the prayer, Nicholas fell asleep. He fell asleep praying to our Father.

Nicholas asked to walk without anyone holding his hands, run without any fear of falling, for his skin to stop itching, for his finger to feel “normal,” for his eyes to not hurt, for his Broviac (central line in his chest for blood draws and to administer medicine without having to be poked every time these things are performed) to be removed, for no more blood draws, for no more hospital visits, to go to school, to go to restaurants, to go to the movie theater when ever we want, to eat what others eat, to be with his friends whenever he wants, and many more things. While it is quite a list, Nicholas’ love for God, his family, friends, and those he meets continues to be amazing. Amazing even when he is not feeling too well.

It is quite a list, however, no list is too long for God and these things he so deserves as God's perfect child that He created. Nicholas continues to love and do what he has to do. He prays asking God for these things, while first and always loving God, his family, his friends, and people that he meets. We PRAY, PRAY, PRAY for the manifestation of God’s love throughout Nicholas’ body making “real” the purity of His word revealing Nicholas’ bone marrow/blood to be pure—free from disease.

AND while praying, Nicholas asked for others to feel better, he was praying for others in the same breath praying to be healed.

While we are PRAYING, asking for these things, we are doing so from the purity of Nicholas' words to our God whom he loves and "trusts" so much. To his Father who said for these things I will do for those who love and serve me. Nicholas does these things and has done them not asking for anything in return, until now. We are asking for these things in return for Nicholas, for Nicholas IS pure and serves God so amazingly well. We PRAY that God will do it because His words are pure and He said will not return to Him void.

NO DRIVE TO SEE LIGHTS GLITTERING TONIGHT
Praying throughout the day was okay with us. We are continually in a learning and discovery mode and it fulfills us—so other than a couple of friends that came to visit, fun and laughter doing various things, praying was the make up of the day. And it was good. With the clouds filling the sky, we postponed our drive this evening to the top of Fish Ranch Road to view lights glittering across the Bay Area.

Through mom & dad's eyes, we get plenty of glittering lights as we watch and see Nicholas just be Nicholas. And for Nicholas, we will find ways for him to enjoy the glitter of lights and life.

November 7, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, November 7, 2005 11:59 PM CST

NICHOLAS WORDS TO MOM & DAD, AND HIS PRAYER
“Daddy, I know God loves me and he is taking care of me. But daddy, I want the healing to be real, right now. Will He do it?” This was one of many conversations Nicholas shared with mom & dad through out the day. Literally, through out the day Nicholas would stop and say, “Will you read some more of the bible to me?” We read from The Children’s Bible and the Bible.

And we had several prayers that we prayed aloud. Early evening we prayed while Nicholas was in dad’s arms, looking out into the sky, through the clouds sensing the moon and stars that were there, even though we could not see them tonight because of the clouds. As we prayed, walked, looking up through a large picture window, swaying softly to the words of the prayer, Nicholas fell asleep. He fell asleep praying to our Father.

Nicholas asked to walk without anyone holding his hands, run without any fear of falling, for his skin to stop itching, for his finger to feel “normal,” for his eyes to not hurt, for his Broviac (central line in his chest for blood draws and to administer medicine without having to be poked every time these things are performed), for no more blood draws, for no more hospital visits, to go to restaurants, to eat what others eat, to go to school, to be with his friends whenever he wants, and so many more things. While it is quite a list, Nicholas’ love for God, his family, friends, and those he meets continues to be amazing. Amazing even when he is not feeling to well. It is quite a list, however, no list is too long for God and these things he so deserves. He continues to love and do what he has to do. We PRAY, PRAY, PRAY for the manifestation of God’s love throughout Nicholas’ body making “real” the purity of His word revealing Nicholas’ blood to be pure—free from disease.

NO DRIVE TO SEE LIGHTS GLITTERING TONIGHT
Praying throughout the day was okay with us. We were in a learning and discovery mode and it fulfilled us—so other than a couple of friends that came to visit, praying was the make up of the day. And with the clouds filling the sky, we postponed our drive this evening to the top of Fish Ranch Road to view lights glittering across the Bay Area.

November 7, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Sunday, November 6, 2005 11:54 PM CST

CHILDREN’S BIBLE
A “Children’s Bible” is what Nicholas couldn’t put down today. This particular bible has been with us on every hospital stay; however, throughout the morning and night Nicholas had mom & dad read it to him. Other times he was thumbing through it trying to read some of the words and interpreting from the pictures. He tells us, “I know God is always with me and He will always comfort me, but sometimes I just don’t understand all of this stuff.”

Nicholas continues to be so patient, so loving, so trusting, and so needing mom & dad, his family, and God. We use these moments to also pray with Nicholas, asking for help to understand all that he is going through, asking for help to be better parents to better help him go through this, and thanking God for loving us all. We belief and trust in Him and His words, “Be still and know that I am God”, and focus on that truth and His words to know the truth about Nicholas. So in the name of Jesus, Nicholas is healed and we will all be able to rejoice in the Lord seeing his marvelous work through Nicholas.

QUIET RELAXING DAY
Nicholas, and mom & dad, had a rather quiet and relaxing day. Soaking up being home feels so good. Several of Nicholas’ friends stopped by to visit although he was tired most of the day. This evening his nanny (Kimmy) arrived for a visit and by this time he was rested and had fun playing, reading, and just laughing.

TOMORROW
We will let Nicholas create the day he wants to have tomorrow (Monday). One of the things he wants to do in the evening is drive up Fish Ranch Road to the crest if it is a clear evening—he wants to see all the lights and stars from up high. The area provides a stunning, glittery view. During the day, well, like you, mom & dad will find out tomorrow.

NOTE: Please click on View Photos to see Nicholas giving mom a "facial" and his concentration while doing mom's make-up.

November 6, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, November 5, 2005 10:30 PM CST

HOME!
Nicholas is home; we arrived back in Lafayette around 3:00 this afternoon. Our morning in the hospital was, well, okay. It was nice for dad to see Nicholas and mom sleeping well and so peacefully. (Nicholas did not sleep with dad last night so we didn’t try to trick the nurses when mom would have been in the hospital bed by herself). I guess the anticipation of going home today provided soothing thoughts versus anxious thoughts—and God’s presence set the tone.

Although this stay was just 5 nights, it was a very nice homecoming—it almost seems like the seasons changed in just 6 days. The changing colors of leaves were drastically noticeable, the scent in the air, and just being outdoors in the crisp air was so refreshing. Nicholas’ older brothers did a good job managing daily responsibilities around the house; and the house was noticeably different (in just 6 days): the aroma of apple scented candles and their glow, along with the overall presence of fall created a warm and cozy homecoming.

NICHOLAS
Very early this morning Nicholas received a Platelets transfusion and then a Red Blood Cells (Hemoglobin) transfusion. Over the last several days Nicholas has progressively displayed his strength, energy, and joy. And Nicholas, mom, & dad’s prayers along with understanding God’s omnipotence, fuel our prayers to be closer and closer to Him. For in Him we find the only source of comfort and we trust in Him for the truth—Nicholas being created in His image and likeness and the truth that God’s work is perfect, free from disease and/or error.

Nicholas has also had several moments of (as he said it) “obsessing over things.” He gets very emotional over a few things like being very concerned about a finger that was sore months ago and wanting it to feel as perfect as the other one. (It looks fine although there is a tiny, tiny area under the tip of the nail that he leaves a sensation of some sort after we trim his nails). And wanting mom & dad to know that mom & dad will always be able to hold, comfort, and love him as we do now. These moments have actually allowed us to have very deep conversations and prayer. We remind him “there is no spot where God is not.” While having one of these conversations on the way home today, Nicholas stopped talking and said he just wanted to pray—he did!

We are so glad to say again, that we are so thankful for God’s omnipotence, omniscience, and omnipotence at work and are His promise in loving us.

PLEASE CLICK ON VIEW PHOTOS, AND THEN THE THIRD ALBUM UNDER LINKS
Under View Photos you will see some more pictures from Halloween and UCSC friends. Attached at the end of the third album under Links you will also see pictures with other friends/hospital staff, Nicholas giving mom a facial, Nicholas applying make-up on mom, and some clowns “that you know.”

November 5, 2005 Blood Counts:
WBC: 0.8
HGB: 7.1
PLTs: 16
ANC: 768

 


Friday, November 4, 2005 6:46 PM CST

THERE MAY BE ANOTHER HOMECOMING, TOMORROW
Yes, we should be leaving LPCH late tomorrow (Saturday). This is a blessing and mom & dad fervently praise and worship God as Love & Spirit manifests through Nicholas—where Love & Spirit reside!

BEAUTIFUL RESPONSE TO IT ALL
All week we have been talking about beautiful moments and YES we are naturally thankful. And, we are not just thankful for the moments when good results are provided, we are thankful for the comfort and sense of calmness upon us even during dark, scary moments. It is not easy, however, we realize that trusting God really frees us to better love and care for Nicholas (lights a path). As big as this problem seems to us, it is not a problem for God and we love Him so for loving us.

Yesterday afternoon and today the doctors talked with mom & dad about Nicholas’ amazing progress. Nicholas has navigated extremely well through all of “this stuff” this week and we know the “footsteps” caring him so it is more like personally seeing the realization of God’s omnipotent work in Nicholas. Nicholas looks good and is doing really well.

And remember the CHIMERISM DNA test performed along the BMT journey that reveal the percentage of bone marrow transplant donor cells working? Remember the goal was 100percent over time and it was first 95percent, then 98, 99 (with one factor dropping from 96 to 90), 98, and then it dropped to 5percent in September. The October 26 Chimerism test reveal that 95percent of the donor cells are working. As desired, “through it all,” the donor cells are coming back and this is good because Nicholas’ health is being revealed. And we are not surprised because we are seeing the fact that Light truly removes darkness—what a comforting sense!

NOT AN EASY JOURNEY AND THERE IS MORE LOVE UNFOLDING
Next Thursday the doctors will discuss with mom & dad the next step for a bone marrow aspirate, and sometime very soon another BMT. We were told that we have to act quickly—and here too we are finding comfort knowing that it is in God’s speed delivering Nicholas to health and healing. It is all STILL SO VERY SCARY, however, we are holding God’s Love and Spirit flowing through Nicholas so close to our hearts and minds that He is comforting us along the way.

EMOTIONAL MOMENTS
Throughout the day, Nicholas had moments where he would just cry and sob about a variety of things. Not things that were hurting him, just things on his mind keeping him from feeling normal in terms of being off of the IV pole, not taking medicine, and random things like being home (understandably). Mom & dad’s response: we hold him, love him, and pray with him. And in one case, mom let Nicholas perform a makeover on her with Nicholas in control of the makeup and where to apply it—maybe a picture or two will be uploaded to this CaringBridge site or a photo album over the weekend.

November 4, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, November 3, 2005 11:11 PM CST

BEAUTIFUL DAY
Nicholas is doing wonderful. He had a beautiful morning waking up from sleeping with dad on the window-bench seat (his choice) while mom slept in the hospital bed. Nicholas and dad were talking about placing an IV pole next to mom so the nurse, in the middle of the night, would think Nicholas was still in the bed and go tend to mom—what a surprise that would be for mom and the nurse!

Waking up from a very good night’s sleep, Nicholas rested a little more, and then it was time for talking and lunch (tuna on wheat bread, 3 small pickles, some Lays potato chips, and sparkling apple juice). And then he was ready to play: he was energetic, animated, and full of laughter…and then it was time to rest some more.

SOME GOOD NEWS about the October 26 Chimerism DNA test and leukemia cells were communicated to us today. However, clarity on a couple points will be secured tomorrow so we can share complete information with you.

BEAUTIFUL SURPRISE
Recently we have used the words “beautiful surprise” and we know that the beauty about Nicholas is not a surprised, it is God created and there is no surprise in His perfection. And, there is a song by India Arie titled, Beautiful Surprise, that came to mind tonight as we are talking about the beautiful day today and the beautiful response today referring to the Chimerism DNA test and leukemia cells. Following are some of the lyrics from the song:

“…

You are a beautiful surprise

What ever it is you came to teach me
I am here to learn it cause
I believe that we are written in the stars
And I don’t know what the future holds,
But I’m living in the moment
And I am thankful for the man (son) that you are
You are ever thing I asked for in my prayer
So I know my angel brought you in my life
Your energy is healing to my soul

You are a beautiful surprise

You are inspiration to my life
You are my reason why I smile

You are a beautiful surprise”

November 3, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, November 2, 2005 11:24 PM CST

NICHOLAS IS REVEALING THE LOVE WITHIN (INSIDE) AND ENJOYING THE LOVE FROM OUTSIDE

INSIDE: Love flowing from within is so prevalent as Nicholas is sailing through this hospital stay. And from within, God’s love is coming through—through Nicholas’ glow, sparkle, and twinkle that clearly speaks to our hearts and minds shouting that Nicholas is loved. It is so amazing to see and realize Love flowing through Nicholas—it is not about the 2 of 5 consecutive days of the treatment, it is about Love that is infinite and all that truly matters. And the sailing, it is like the proverbial footsteps, however, it is the wind underneath Nicholas’ wings uplifting him pass all that is NOT aligned with God.

AND THERE ARE STRUGGLES as Nicholas had several moments throughout the day where we needed to talk and pray with him re-affirming the fact that God—Love and Spirit—is in operation…helping us to “Be still and know that I am God.” He cried out saying:

1) Why do I have to have this Broviac (central line into his chest) when no one else in our family has to have one. I want it out today!

2) I want to be able to get up and run without having to exercise first like I use to do.

3) I want to stop obsessing over things. (When we asked, what did you just say, Nicholas just said it again, “I want to stop obsessing over things.”

OUTSIDE: Mom & dad are “provided for” in many ways. We, too, know that we are loved and God has been providing love in so many countless ways. Mom & dad sometimes have wondered what we have done to be cared for, supported, and loved by so many. So many in terms of people from all walks-of-life, churches/temples, countries, and AAA. Including our neighbors and even those we have never met except through this CaringBridge site and met through Love.

While there can be so many understandable reasons why you would not have time to care, support, and demonstrate love to Nicholas, all of you are simply incredible in the difference you are making in Nicholas’ life as well as our entire family. We know we are loved and please, please, please know that you are loved by Nicholas and our entire family for being “you” and doing what you do up close and personal or from afar!

And early evening Nicholas, mom & dad really enjoyed a walk onto the first floor outdoor quad with large water fountain, plants, and trees. It has the sounds and look of Hawaii that we love (Nicholas loves dolphins, snorkeling, and lounging in the sun—as you know from his Songs of Love playing in the background.)

And MORE SMILES, LAUGHTER, AND THAT GIGGLE AGAIN as Nicholas had another visitor from UCSC, interaction with Jacob from Recreation Therapy, and while Nicholas was taking a bath and decided to give mom a facial. (Again, photos will be uploaded in the next couple of days when we have access to our home computer with the software or have software delivered to the LPCH…) And smiles for mom & dad as we had dinner, conversation, and love brought in by amazingly loving and sweet friends Annette, Marialena, and their mother Antionette. Here too, what ever it was we have done for all of you to care for us so much, we pray and will forever work for love your way 10-fold.

WHAT NICHOLAS SAID TODAY:

1) You are the best mom I have had my whole life; you make my life wonderful.

2) I want to go home so I can make my brothers happy.

3) When I get older I’m going to make medicine that tastes good so other little kids that have to take medicine it will be yummy instead of yucky—and mom can be the taster.

November 2, 2005 Blood Counts:
WBC: 1.4
HGB: 9.2
PLTs: 29
ANC: 644

 


Tuesday, November 1, 2005 11:59 PM CST

MORE SMILES, LAUGHTER, AND THAT GIGGLE
Today was another beautiful day and it’s sure easier having beautiful days when you KNOW Love and Spirit make up your days/nights. Nicholas had a quiet morning, engaging afternoon with Books-A-Live (interactive computer programs with Child Life Staff), fun evening drawing/coloring, and an energetic night with four of his brothers’ friends from college who drove from campus to visit Nicholas. (Although he just graduated last June, the relationships that have extended to mom & dad as well as Nicholas are as strong as ever, and what a blessing that his college friends are so in tuned with what matters and makes the time “to make a difference!”)

The UCSC college group brought The Little Mermaid movie and watched it with Nicholas as well as played with toys, and PS2 games. Along with Nicholas they did some artwork, and then Nicholas displayed some artistic qualities. Nicholas played out various scenes from That’s So Raven and The Grinch. The smiles, laughter, and that giggle shined brightly from Nicholas.

We know we are blessed to have all of you in our hearts, us in your thoughts and prayers, and most of all God as our light—lighting up the night and illuminating the days brighter and brighter.

NO MORE CYCLOSPORINE
Today administering Cyclosporine stopped so the extra hair on his face, eyebrows, neck, and back will soon fall off.

NOTE: Pictures from the last two days should be posted under View Photos and/or the last album under Links within the next few days.

November 1, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

Monday, October 31, 2005 11:59 PM CST

BEAUTIFUL DAY, AND WE ARE NOT SURPRISED
Today, Nicholas is back at LPCH and it was a beautiful day. His smile, laughter, and giggles were beautiful to see and hear—and we are not surprised because we know God is the source of Nicholas’s joy and happiness.

LPCH had “trick or treat” events throughout the hospital and the staff and their departments were dressed, decorated, and provided a fun atmosphere for all of the kids. It was fun for mom & dad as well to experience the joy illuminating from the kids. And the staff on 2-North (where Nicholas’ room is located) looked great: Cowgirl, Thelma from Scooby Doo, Daphne from Scooby Doo, Harry Potter character, a Martian, Princess Leia from Star Wars, a clown, and more.

It’s comforting to know that God, Divine affection flows throughout Nicholas’ body and it is pure! So while Nicholas will be in LPCH for 6 days, we know and understand more and more each day the realization that God—Love and Spirit—is GREATER THAN ANYTHING and SUPERSEDES EVERYTHING. There is nothing that can be placed into Nicholas’ body that can have power over God—nothing.

October 31, 2005 Blood Counts:
WBC: 1.3
HGB: 11.7
PLTs: 41
ANC: 210

 


Sunday, October 30, 2005 11:25 PM CST

LOVING FUN WITH FAMILY AND FRIENDS
Today was another full day of fun for Nicholas with his grandparents, brothers, and friends. This evening’s one-day early Halloween trick or treating planned by neighbors on the entire court was fun-tastic. The kids on the court were all dressed in their Halloween outfits, and most of the parents at their homes were dressed as well. There was fun in the air and fun in everyone’s heart. A couple family friends also came to share the moments with us. PLEASE CLICK ON VIEW PHOTOS TO SEE A FEW PICTURES FROM THIS EVENING and click on the third album under Links for other current pictures (at the end of the album).

GOD IS GREATER THAN ANYTHING AND EVERYTHING
God “is” love, and there is no disease in pure absolute love. We know this to be true and we know that God is encamped within Nicholas. Mom & dad release this problem to God—He is love and He is within Nicholas and disease has no place in love so it has no place within Nicholas. God’s love circulates throughout Nicholas and we are so grateful that His love is pure. So tomorrow at Stanford-LPCH, there is nothing for us to fear.

October 30, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: NA

 


Saturday, October 29, 2005 11:59 PM CST

NICHOLAS HAD A GREAT, PERFECT DAY
Nicholas had a great, perfect day. And playing with KJ this afternoon was a special treat.

AND tomorrow evening our Brookdale Court neighbors are having an outdoor Halloween trick or treat party because Nicholas will not be home on Halloween—thank you friends/neighbors!

Our loving God has Nicholas fully and firmly in his hands and nothing can even partially loosen God’s love and protection because His omnipotence, omniscience, and omnipresence ARE in operation. It is not just about words of encouragement and hope, it is about knowing that these words are true—and this knowledge and the rest of the journal below I ask that you know to be true for Nicholas!

TODAY’S GREAT, PERFECT DAY AND DAYS, MONTHS, AND YEARS TO COME ARE NOT MIRACLES, THEY ARE MANIFESTATIONS OF LOVE—GOD IS LOVE
Several times in these journals mom & dad have talked about needing a miracle. God has been the constant foundation in these journals, is the constant foundation, and will always be the constant foundation in these journals and our lives. I was reminded of the following today and it provides greater understanding of God’s love for Nicholas. And His love is true, not a miracle.

God loves Nicholas more than we could ever know. As we think about how much we love Nicholas...that's how much God loves Nicholas and us…even MORE. Would He leave the side of the children He cares so deeply for? No. "God is a very present help in trouble." He is ever present, right there, right now. We are not alone and this problem is NOT too big for God. The Bible says, "God is of purer eyes than to behold evil". If God sent his son to heal disease, sin, blindness, every ill and to raise people from the dead, wouldn't that mean that Jesus was doing God's will? Was there ever a time when Jesus said he couldn't heal someone? That it was too late or too severe? No. Because Jesus knew that God did not send disease, sin or suffering. So Jesus healed by seeing mankind as God created them. As it states in Genesis: "And God created man in His own image, in the image God created He him, male and female created He them." So Nicholas isn't a material person needing physical healing. He is the image and likeness of God. And what is God? The Bible says, "God is Love. God is Spirit." So Nicholas is the image and likeness of Love. The image and likeness of Spirit. We don't look to the body for what is true about us, we look to God. So what is God saying about Nicholas? God is saying, "This is my beloved son in who I am well pleased."

October 29, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: NA

 


Friday, October 28, 2005 11:59 PM CDT

MORE FAMILY, FRIENDS, FUN, AND SOMETHING EXTRA--ENERGIZING
Visits by family and friends helped to generate fun for Nicholas all day and night, and provided something extra, family and friends (and you through connecting with us as you do) created an atmosphere around Nicholas that was energizing. Amazingly, the energy created, provided “sparks” that literally energized him.

FOLLOWING IS A CAPTION OF TODAY’S VISITS, PROVIDING A FLAVOR OF “DAILY” SUPPORT FROM ALL OF YOU—THANK YOU
A visit from uncle David (dad’s brother) was very comforting for mom & dad. And this morning when friend KJ arrived the moment provided a spark that you could actually see in Nicholas demeanor and actions. A visit from Emma whom we met through her daughter (Lauren) who is fighting leukemia also provided comfort for mom & dad. Then a visit from Nicholas’ former Montessori school teacher, Ms Shirley, and Sara was so fun—they carved pumpkins with Nicholas and KJ and read lots of cards and messages from school. And friend Phyllis and her daughter, Allie (brother Matt’s friend), showered us with love through their brief visit that was followed by a visit from friend Cyndi that helped mom via comforting conversations. Rounding out the evening, friends Bri, Jenessa, and Kelsey (brother Chris’ former college mates) helped to create and sustain bursts of energy for several hours.

We are so thankful for God’s love providing what Nicholas needs, and what mom & dad and the family needs. And we are thankful for the love prompting Nicholas to continually open up like a flower showering us with his love and freshness—doing more and more toward complete health, healing and a cure. AND, it is hard to believe that we are faced with the dilemma in front of us this Monday.

The freshness of the day was more walking (the college girls sparked this) and an energy level that resulted in Nicholas actually “leaping” from one of them to Chris in a fun, playful way that carried on for several hours. God is good and we know He is with Nicholas and shall see Nicholas through all that confronts him.

***Please click on View Photos for pictures of today's visits***

October 28, 2005 Blood Counts:
WBC: 0.7
HGB: 11.5
PLTs: 93
ANC: 10

BLASTS: NA

 


Thursday, October 27, 2005 11:59 PM CDT

FAMILY, FRIENDS, AND FUN
Today was a good, full day beginning and ending with family. In between there were friends, friends, friends, and fun throughout. There was quiet time and quiet moments for Nicholas talking with friends live and on the phone (of course Nicholas called KJ and KJ called Nicholas), there were loud moments and laughter with family & friends (Nicholas played with Neda, Hana, Joey, and his cousins Mikayla, Alex, & Domi), there was fun throughout the day for everyone, and there was quiet time and moments just for Nicholas, mom & dad, and two of Nicholas’ three brothers.

And the silver lining of the day was you, your guestbook entries, conversations with us, and feeling your thoughts and prayers—thank you.

The pumpkin patch with family and friends was great. There were many Halloween themes, fun themes and scary themes. And because it was at Orchard nursery, there were beautiful flowers, plants, and lots of water fountains & waterfalls providing picturesque snapshots for us all.

THINGS OF THE DAY: The sun, the cool breeze, pumpkins, flowers, and wild turkeys up close and personal (gobble, gobble, gobble—those are the words and sounds Nicholas made as we came across the wild turkeys at the Lafayette reservoir after the pumpkin patch).

AND: Nicholas was walking throughout the house by himself today (strength in his legs is coming back). Tonight when he was walking while his life-long friend Joey was holding his hand, Nicholas said, “I’m showing Joey how to help people walk.”

MORE FAMILY, FRIENDS, AND FUN TOMORROW
More of today is planned for tomorrow and the beauty of the engagement is that we are so blessed to know we are loved by God and provided your love in the ways that you share.

AND THE BEAUTY OF ALL OUR TOMORROWS: Is that we are living today and living for tomorrow, the next day, the next week, the next month, and the many years to come loving God, and loving & thankful for Nicholas, Chris, Tim, Matt, and you—our family and friends.

***PICTURES: A few from today are under View Photos and several from today are on the third photo album under Links***

October 27, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: NA

 


Wednesday, October 26, 2005 11:59 PM CDT

UPDATE #2

THE NEWS WE FEARED
This evening our doctors delivered devastating news to Sheila and me, Lamont (worst than the devastating news when Nicholas was diagnosed with leukemia). The un-official findings from the Pathology department on today’s bone marrow aspirate reveals that there is 41percent blasts in Nicholas’ marrow. Meaning the relapse re-induction treatment has failed. This leaves us with few options: Clofarabine (a new drug that some have touted as a miracle drug) or Palliative care (taking Nicholas home, caring, and supporting him to make him as comfortable as possible to live as long as is God’s plan).

AND HOLDING ON TO HOPE…HOLDING ON TO PRAYER AND GOD
We trust and believe in God and feel that His plan for Nicholas is for Nicholas to live strong and long. SO WHILE WE HAVE COME HOME TONIGHT WE WILL BE GOING BACK TO STANFORD ON MONDAY to begin treatment with Clofarabine. Although this drug has very awful side effects, we believe Nicholas can be "shielded" from danger and healed in Jesus' name. Please listen again to the words of Nicholas' song playing in the background, read the poem above, and PRAY with us for Nicholas' healing and cure. Please, please, please keep all of the kids afflicted with these awful diseases in your prayers.

WHAT NICHOLAS SAID TONIGHT
When told we were leaving the hospital today, it wasn’t what he said it was what he did: SMILED big and bright. Getting into bed he said, “Ahh, my pillow and my bed are nice and cozy.” And for tomorrow, he said, “I want to go to the pumpkin patch and get a big, oval pumpkin.” So that is what we will do, we will take him to get his pumpkin, we will keep him nice and cozy, and we will work, work, work to keep him smiling big and bright!

FAMILY PRAYER ON APRIL 7 BEFORE THE BONE MARROW TRANSPLANT
God is the same yesterday, today, and tomorrow! Our faith is in God and He is the director over Nicholas, providing direction for mom & dad, and guiding the minds and hands of Nicholas’ doctors. The prayer below meant the same then and means the same now…Oh, Father, we love You, want You, and need You:

Father, in the Name of Jesus, we confess Your Word concerning healing. As we do this, we believe and say that Your Word will not return to You void, but will accomplish what it says it will. Therefore, we believe, in the Name of Jesus, that Nicholas Colby Gilbert is healed according to 1 Peter 2:24.

It is written in Your Word that Jesus Himself took our infirmities and bore our sicknesses. So with great boldness and confidence we say—on the authority of the written Word—that Nicholas is redeemed from sickness.

Satan, we declare to you, in the Name of Jesus, that you have no authority over Nicholas Colby Gilbert, and you are rendered powerless because we bind you from operating against Nicholas in any way. He is loosed from your assignment. He is the property of Almighty God and we give you no place in Nicholas. He dwells in the secret place of the Most High God. He abides and remain stable and fixed under the shadow of the Almighty, Whose power no foe can withstand.

Now Father, because we reverence and worship You as God, we have the assurance of Your Word that the angel of the Lord encamps around about Nicholas.

We confess the Word of God abides in Nicholas Colby Gilbert and delivers to him perfect soundness of mind and wholeness in his nature in his immortal spirit even to the joints and marrow of his bones. Your Word is medication and life to his flesh, for the law of the Spirit of life operates in him.

We have on the whole armor of God and our shield of faith protects Nicholas Colby Gilbert from all the fiery darts of the wicked. Jesus is the High Priest of our confession, and we hold fast to our confession of faith in Your Word. We stand immovable and fixed in full assurance that Nicholas Colby Gilbert have health and healing both spiritually and physically right now, in the Name of Jesus, Amen

UPDATE #1 (3:00 PM CDT)

SADLY, NICHOLAS IS NOT IN REMISSION
Our doctors just informed us that preliminary it looks like there is some residual leukemia—WE ARE SO VERY, VERY SAD THAT NICHOLAS IS NOT IN REMISSION.

The re-induction chemotherapy regimen did not free Nicholas from leukemia. Our doctors are conferring to determine what chemotherapy medicines to administer. We will confer with them later today; and tomorrow we will have the final results & details on the bone marrow aspirate.

WE ARE NOT GOING HOME, YET!
Nicholas is amazingly handling and getting through all of this “leukemia and bone marrow stuff,” at least he is doing everything and more that he is asked to. He is doing everything right! He is our inspiration; he is love! Nicholas’ body has recovered pretty well from the chemotherapy and the doctors feel that it is safe to get started on chemotherapy again. However, the chemotherapy determined will be based on their toxicity because Nicholas has already absorbed so much during the past 36 days of relapse treatment, 201 days since the bone marrow transplant, and 341 days since he was diagnosed.

Note: Early this morning Nicholas had a Red Blood Cell and Platelets transfusions.

AND THROUGH OUR MOTHER FATHER GOD WE STILL HAVE WHAT WE NEED
Miracles happen and in Jesus’ name Nicholas can be healed right now, tomorrow, in God’s speed. We know that it is not our will, but His, that will be done. And we know that Nicholas has been doing God’s work in the way that he is caring, loving, and sharing of himself to us and to you. And we PRAY for Nicholas to continue that work with us and you—thank you and please, please, please continue to PRAY for Nicholas’ complete healing! We are dreaming and want to realize complete healing for Nicholas. As we write this update Nicholas is waking up, looking out at mom & dad, looking outside as raindrops fall—and it feels like a dream as he awakes and illuminates mom & dad with warmth and love. We are glad that it is not a dream; it’s reality and we feel the love—we PRAY that Nicholas “feels” the love every moment!

October 26, 2005 Blood Counts:
WBC: 0.5
HGB: 6.8-7.3
PLTs: 28
ANC: NA, because some information is not available when the WBC is below 0.6

BLASTS: Preliminary results of today’s bone marrow aspirate, SADLY, indicate that there is residual leukemia. (Please see above if you have not already)

 


Tuesday, October 25, 2005 11:01 PM CDT

Day 340 since Nicholas’ original leukemia diagnosis

Day plus200 since the BMT

Day 44 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 35 of relapse treatment

PROCEDURES TOMORROW (WEDNESDAY)
Tomorrow Nicholas will go to the operating room for a bone marrow aspirate (BMA, removal of a small sample of bone marrow—from the hip—through a needle), bone marrow biopsy (removal of tissue), and a skin biopsy (removal of very small area, about 4mm, of skin to assess the rash for GVHD or not). Results of the aspirate should be known on Thursday—please see information below under Blasts. Preliminary results of the skin biopsy will be known Thursday and final results should be known on Friday.

Because the skin biopsy will be performed while Nicholas is under anesthesia he will not feel the procedure—and we are so glad that he will not because he has experienced so much during this “leukemia and bone marrow stuff” (as you know).

Referring to yesterday’s journal, the cardiologist is not overly concerned with Nicholas’ heart and his ability to undergo tomorrow’s procedure. And the assessment includes that the current blood pressure medicine Nicholas is taking (side effect of other medicines taken along this cure journey) is appropriate—no changes needed. Thank you, Lord!

BLOOD COUNTS HAVE DROPPED
Today’s blood counts have dropped (please see caption below) when we were hoping they would continue to go up into range. This is concerning because it could mean that there is some residual leukemia; the BMA tomorrow will provide some answers. Or it could be that there is a virus requiring the blood cells to work toward fighting an infection or disease. We PRAY that it is just a little infection requiring his white blood cells attention and that the chemotherapy has put the leukemia to rest once and for all.

WHEN WILL NICHOLAS GO HOME?
If leukemia still exists in Nicholas, we will have to remain in the hospital for more chemotherapy. Otherwise, we may be able to go home with very mild chemotherapy for a period of time via outpatient.

ACTIVE DAY
Physical therapist—leg exercises and a short basketball game, Books-A-Live—computer interaction, short walks in the room, card game with Pokemon cards, talking with friends on the phone, reading, laughter, and some fun interaction with nurses.

Understandably, Nicholas was not thrilled with more doctors examining him (dermatologists assessing his skin before tomorrow’s procedure).

While the days can be active and we are active with Nicholas toward him being happy, we want Nicholas to be home, out of the hospital, and with our family and you.

WE HAVE WHAT WE NEED IN GOD
Miracles happen and we are claiming one for tomorrow’s test results. Believe with us that the marrow is free from any of those nasty leukemia blast cells and we get the results we PRAY for so hard.

October 25, 2005 Blood Counts:
WBC: 0.5
HGB: 9.1
PLTs: 29
ANC: NA, because some information is not available when the WBC is below 0.6

BLASTS: Tomorrow’s (Wednesday) bone marrow aspirate results will let us know if Nicholas is free of leukemia (no Blasts). Results should be known on Thursday. To be declared that Nicholas is “in remission” he needs to be free of Blasts, normal bone marrow producing healthy cells including WBC of 5.5-15.5, Platelets of at least 100, and an ANC of at least 1,000.

 


Monday, October 24, 2005 11:59 PM CDT

NO PAIN TODAY
This morning the PCA machine was disconnected and Nicholas had a good day, free of any pain. Early evening Nicholas said, “Hey, my stomach and bladder are feeling much better. My stomach doesn’t feel like anything.” What a blessing, being free of any pain!

He ate very well all day. And for the first time in 3 weeks he was free from being hooked to an IV pole. No IV lines or machines pumping medicine into Nicholas from early afternoon until midnight. So, we picked him up, put him in our arms, and twirled around without constraints of any lines. Early evening we went for a walk around the hospital and to a spot we call Hawaii because it is outdoors, has a large water fountain, tropical plants, and is in the center of the hospital so walls protect the area from the weather. We were in “Hawaii” as it was getting dark so looking up into the sky was a beautiful sight.

LOOKS LIKE THE RASH IS GVHD
Other doctors assessed the rash on Nicholas’ back and feet and they all concurred that it appears to be caused by GVHD. It could be that the donor cells (from the bone marrow transplant) are producing and they are prompting the GVHD. With procedures scheduled for Wednesday, sample marrow will also be drawn for the Chimerism test (that will tell us the percentage of donor cells working). If the donor cells are producing it could be a good thing AND the GVHD could be a bad thing. We are constantly PRAYING for God’s navigation and His direction as His omnipotence, omniscience, and omnipresence are in operation.

GETTING READY FOR NEXT STEPS: ANOTHER ROUND OF CHEMOTHERAPY AND THEN A DECISION OF BMT OR NO BMT
As Nicholas, mom & dad, and the medical team are preparing for next steps, we had an Echocardiogram and EKG to check the condition of Nicholas’ heart because he has been going through many procedures and under general anesthesia many times. There is mildly decreased left ventricular function—tomorrow our doctors will confer with the cardiologist and we will clarify and discuss implications. It appears this situation was caused by one of the chemotherapy medicines. Remember, we talked awhile back about the overall cure process medically: administering medicine to do one thing and side effects of that medicine can cause other things. Here too, we are so glad our loving God’s omnipotence, omnipresence, and omniscience are in operation.

FUN EVENING
Nicholas was very playful with mom & dad and the nurses. He enjoyed drawing and coloring pictures—one of his nurses’ birthday is at midnight and he colored a beautiful picture for her and wrapped it up. Nicholas asked if he could be awake at midnight so he could walk out onto the nurses’ floor to give her the gift. And he will do just that tonight!

October 24, 2005 Blood Counts:
WBC: 1.0
HGB: 8.8
PLTs: 52
ANC: 760

BLASTS: Next bone marrow aspirate is scheduled for October 26 and with his blood counts expected to be rising toward the targeted ranges, we expect to be able to learn Nicholas’ remission status on October 27.

 


Sunday, October 23, 2005 11:30 PM CDT

GOING HOME IS DELAYED
It has been a while since we used the phrase “roller coaster” to describe Nicholas’ leukemia journey. And roller coaster, physically and emotionally, and “slippery road” still describe the journey. There are good and sad moments as well as days. However, there are blessings that we realize, everyday as well, that help make some moments and/or days a little easier to navigate.

The rash on Nicholas’ back has spread a little more on his back and onto the tops of his feet. And liver enzymes are really high out of range. Starting today, Actigal will be administered to protect the liver (he received Actigal during the BMT treatment). The doctors are suspicious of GVHD coming into play so they are going back up on the steroids today. Also today, we started a new pain medicine, Pyridium, to combat the lower stomach pain, specifically bladder—it seems to be working because Nicholas has been in less pain and having a “lively” night.

Going home is delayed; we are hoping to go home by Friday.

A “WALK” ON THIS JOURNEY
Tomorrow (Monday) marks week number 3 of this hospital stay and it has been very hard for mom & dad for several reasons, including Nicholas being in pain, keeping him from walking and Nicholas having very low energy keeping him from talking & playing. As we were getting ready to take Nicholas outside onto the hospital patio, by himself he got off the bed and said, “I will walk out of the room today.” And although we had to support him by holding his arms, he “gingerly” shuffled his feet and then began to slowly walk. He walked out of the room to the cheers from nurses, and onto the patio.

And later tonight he was close to his usual self in terms of talking, joking, playing, and even scaring the nurses by…pretending to be sleep at different times of the evening and saying BOO when they got close. Seeing his vibrant facial expressions and his lively interaction is so beautiful—and we PRAISE God. And we are so thankful for your continued prayers.

So tonight we are disappointed that we are not going home in the next couple of days; and tonight we are very pleased that Nicholas (like the sun brightly shining with rays warmly reaching out) is looking happy and expressing happiness through his playful nature! We are thankful our loving God navigates the roller coaster and slippery road.

October 23, 2005 Blood Counts:
WBC: 1.4
HGB: 10.4
PLTs: 96
ANC: 1,106

BLASTS: Next bone marrow aspirate is scheduled for October 26 and with his blood counts expected to be rising toward the targeted ranges, we expect to be able to learn Nicholas’ remission status on October 27.

 


Saturday, October 22, 2005 6:57 PM CDT

UPDATE #2 (11:59 PM)

A NEW RASH
Early evening Nicholas was scratching his back and after mom saw a rash, the doctors examined it. Benadryl was administered and the itching stopped. Nicholas’ back, and the rest of his body, will be continuously examined. There were no new medicines administered or food consumed so it is unclear what may have triggered the rash; examinations will also assess for GVHD because GVHD would not be a good thing. If it is GVHD we will have to go back up on the steroids that we have been tapering down (to get him off steroids). We PRAY that it is not GVHD and we PRAY for complete healing in Jesus’ name!

WHAT NICHOLAS SAID
Late afternoon, one of our other sons called dad at the hospital asking if dad could meet him at a basketball game. Nicholas, overhearing dad on the phone say that he should stay with Nicholas and mom, said the following to dad in a sincere, sensitive voice. “Dad, it’s okay, you need to spend time with your other sons too.” Kids are amazing; it’s amazing to just listen and receive life lessons from them, even when they need attention.

NIKE MARATHON AND LEUKEMIA & LYMPHOMA SOCIETY
Tomorrow (Sunday), there are several friends running in the Nike Marathon in San Francisco for the Leukemia & Lymphoma Society in honor of Nicholas. Thank you, this is another blessing. Thank you runners, supporters, contributors, sponsors, and everyone for caring and loving in your way whether you are a part of this marathon or not. You, you are making a positive difference in peoples’ lives!

UPDATE #1

PAIN AND VIRUS
Remember the BK Virus stated in the October 10 journal, current lab results reveal that it is still positive. This could be a factor in some of the pain Nicholas continues to experience, consistently experiencing around the clock. As stated October 10, Nicholas’ immune system has been suppressed with the chemotherapy and immunosuppressive kids are at risk for the BK Virus to surface. Like the CMV virus discussed in the August 18 journal, the BK Virus can lie dormant in anyone’s body. There is no action to take to cure it, it just takes time and the bone marrow producing “T-cells” to push the virus back to being dormant.

In addition to the PCA administering Dilaudid (pain medicine) every hour via IV, oral Dilaudid is on standby to administer if needed. We know that we are asking and PRAYING for so much. And you know, Nicholas has been doing everything right and we will love our Father always and always work and PRAY for our “needs.” Nicholas is truly a blessing: he cares for others when he should just be cared for, he is loving when he should just be loved, and he is experiencing pain when he should be without pain.

Note: Thankfully, other blood cultures and urine & stool analyses have come back negative.

GOING HOME MAY BE DELAYED
The pain Nicholas continues to experience may delay when we can go home. One of the reasons the PCA dosage has been reduced, tapering down, is to time the dose to be at zero or disconnect the PCA with Nicholas’ discharge. However, Nicholas being without pain is our first objective. We need to get Nicholas to be without pain—we do not want to see him “patting” his lower stomach when resting and trying to sleep. Or “patting” his lower stomach to just be comfortable.

October 22, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: Unable to be determined because there were no white blood cells to analyze in the marrow on October 20. Next bone marrow aspirate is scheduled for October 26 and with his blood counts expected to be rising toward the targeted ranges, we expect to be able to learn Nicholas’ remission status on October 27.

 


Friday, October 21, 2005 11:59 PM CDT

NAVIGATING THIS SLIPPERY LEUKEMIA JOURNEY
Final BMA results from yesterday reveal that the marrow was cleaned out; there were no white blood cells to analyze. This means the chemotherapy is doing its job destroying white blood cells including white blood cells that may have leukemia. Nicholas’ blood counts are coming back up and we PRAY that the blood counts continue to rise into range so that with results of another BMA planned for next Wednesday, the doctors will be able to declare Nicholas is in remission.

As Nicholas is passing the remission phase of the journey, his doctors are working on the map to pass the next two phases: 1) another round of chemotherapy similar to a “consolidation” phase, perhaps with chemotherapy medicines that Nicholas’ body has not seen before, 2) and bone marrow transplant OR no transplant; next week we should be scheduling a bone-marrow-transplant conference to take place within the next couple of weeks to determine what should be done for this phase. We continually PRAY for wisdom to doctors and directions for mom & dad.

Nicholas’ Platelets count was 11, from labs drawn at 1:00am Friday, before a Platelets transfusion that took place around 2:00am. Again, with hopes his overall blood counts rise into range and with Nicholas’ progress the doctors are still planning for him to be discharged—going home—the early part of next week. The dose for the PCA machine was reduced twice today. While Nicholas is still experiencing sporadic lower stomach pain, he has the pain button connected to the PCA to provide immediate relief.

He is making progress, and that is good! Nicholas has come along way, and we have a long way to go. God speed!

Remember, “Do you want a piece of me?” Well, those words and Nicholas’ expressiveness surfaced yesterday and today. And tonight, he was craving Gold Fish (crackers). When his nurse came into his room, he was joking and having fun with her asking if she would go and find some for him. Nicholas also told his nurse that she could take one of his quarters and pick up some Gold Fish from a machine. Oh, and then dad picked up some Gold Fish from the store—and we all had some tonight.

October 21, 2005 Blood Counts:
WBC: 0.6
HGB: 10.3
PLTs: 11
ANC: 420

BLASTS: Unable to be determined because there were no white blood cells to analyze in the marrow.

ALT (LIVER ENZYME): 235. Target range: Below 40.

AST (LIVER ENZYME): 102. Target range: Below 60.

 


Thursday, October 20, 2005 11:59 PM CDT

Day 335 since Nicholas’ original leukemia diagnosis

Day plus195since the BMT

Day 39 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 30 of relapse treatment

TODAY’S BMA PROCEDURE
The bone marrow aspirate procedure went well—After all of these procedures I guess it was time for Nicholas to be “stingy” with giving up bone marrow. The doctors had to go deep to retract the marrow. However, they got plenty of marrow for various tests including Cytogenetics{DNA indexing to confirm that there are still no hypodiploid cells (reason for the BMT)}.

And from the initial review of the marrow, the doctors are reporting that it looks clear of any leukemia—thank God! Final results from this BMA should be delivered tomorrow; and it will just provide us with a “remission status” as another BMA will be performed in about two weeks that will be a significant medical indicator for remission.

GETTING CLOSER TO GOING HOME
The dosage of pain medicine continuously delivered into Nicholas’ body from the PCA machine was reduced again today (see the October 11 journal for more information). Nicholas is progressively shining brighter and brighter—bringing smiles to mom & dads hearts and our spirits. And we thank God for keeping him in His hands throughout this journey.

SOMETHING ELSE NICHOLAS SAID—WELL, SANG
The days and nights for Nicholas, mom & dad have been very long and with very little rest. Last night, mom was not sleeping well and when Nicholas noticed her difficulty sleeping he sang to her. He sang a song that many of you will remember, remember singing to your children or other loved ones. And very late at night he had the presence of mind to change the song for a better fit. He sang, “Hush little momma don’t you cry, Nikko’s going to buy you a mocking bird, If that mocking bird don’t...” Then he stopped, well mom thinks he stopped. She doesn’t recall anymore because she fell asleep.

October 20, 2005 Blood Counts:
WBC: 0.4
HGB: 9.8
PLTs: 24
ANC: NA, because some information is not available when the WBC is below 0.6

BLASTS: NA. Tomorrow we should have results from today’s BMA—we PRAY that there will be no blast (4percent on October 3).

 


Wednesday, October 19, 2005 11:59 PM CDT

STATUS SNAPSHOT:

VINCRISTINE: Last chemotherapy of the relapse induction phase was completed today. We are PRAYING that Nicholas is shielded from side effects.

BONE MARROW ASPIRATE TOMORROW (THURSDAY): Late tomorrow morning Nicholas will go to the operating room for a bone marrow aspirate (BMA, removal of a small sample of bone marrow—from the hip—through a needle). On Friday we should have results on Nicholas’ remission status—we PRAY that there will be no blasts.

TAPERING OFF STEROID: Tomorrow is also the start of tapering off of the steroid, Prednisone, and on October 25 Nicholas is scheduled to be off of it. We are PRAYING that through God, Nicholas is shielded from any negative impact—in fact, we are thankful knowing that God’s omnipotence, omnipresence, and omniscience is in operation. Through Him we are comforted knowing that He is in control and that Nicholas is His perfect child.

WHEN NICHOLAS WILL BE GOING HOME: Early next week.

DOCTORS NOW TALKING ABOUT NEXT STEPS: As Nicholas continues to improve, and we PRAY that he will formally be in remission in the next couple of weeks, his doctors (oncologist and transplant) are analyzing the next steps to take. Our doctors were so pleased to say that it “looks like we are getting what we wished for” referring to remission. They are analyzing the best approach toward a cure: A) Another bone marrow transplant (including a Haplotype transplant that is like a "half match" with mom or dad being the donor versus a "match" as originally performed because the half match may generate an additional fight against any leukemia that could remain in Nicholas whereas the match may not provide this benefit based on the relapse) or B) No transplant if it is determined there is a good chance the original donor cells will begin to fully produce healthy blood cells. Here too, we are thankful knowing that God’s omnipotence, omnipresence, and omniscience is in operation…

WHAT NICHOLAS SAID OR DID:
A) While on his back in bed, Nicholas had both legs up in the air like he was riding a bicycle. We asked what he was doing and he said, “Exercising!”

B) While going to the bathroom this afternoon, he said, “…this is my idea of the worst vacation ever!” He said when we are away from home we should be on a vacation. (Tonight, Nicholas was reflecting on his vacations in Hawaii, Vancouver, Montreal, San Diego, “Disneyland,” Las Vegas, Colorado...

October 19, 2005 Blood Counts:
WBC: 0.7
HGB: 10.0
PLTs: 30
ANC: 500

BLASTS: NA. On Friday we should have results from tomorrow’s BMA—we PRAY that there will be no blast (4n October 3).

ALT (LIVER ENZYME): 247. Target range: Below 40.

AST (LIVER ENZYME): 132. Target range: Below 60.

 


Tuesday, October 18, 2005 11:59 PM CDT

STATUS after 16 days in the hospital, 6 fevers, 5 platelets transfusions, 2 red blood cells transfusions, 2 viruses/bacteria, and perhaps 1,000,000s of words of support, love, and healing as Nicholas’ rays of sunshine are getting brighter:

ANC
Nicholas has an ANC! Remember, ANC reveals the ability to fight infection (absolute neutrophil count) and at this point the immediate goal is to have an ANC of 500. After 15 straight days of “not having an ANC,” Nicholas has an ANC of 480. A good start and another blessing—we thank God for his loving guidance and for your prayers.

VINCRISTINE MAY BE ADMINISTERED TOMORROW (WEDNESDAY)
Tonight’s labs will aid determination of administering the last dose of Vincristine tomorrow. The doctors will be checking Nicholas’ liver function (specifically the Bilirubin level) to determine if the Vincristine dose should be adjusted.

BONE MARROW ASPIRATE
The doctors are considering performing a bone marrow aspirate Thursday. We are hoping conditions will be okay to do the aspirate and the result will reveal remission status.

REDUCTION IN PAIN CONTROL MEDICINE AND DOCTORS TALKING ABOUT US LEAVING THE HOSPITAL SOON
Today Nicholas’ PCA was reduced, so hourly there is less pain medicine being administered via IV. The dose will be tapered, and along with PRAYING that Nicholas’ blood counts come back into range and he continues to feel better, the doctors are talking about Nicholas leaving the hospital. It is possible we can go home the end of this week or early next week.

TAPERING STEROIDS DOWN AND WATCHING THE RASH
The relapse treatment has called for daily doses of steroids and then stopping the steroids. You may remember the awful-long GVHD that impacted Nicholas’ skin and the continued-long time Nicholas has been on steroids to combat the GVHD. Because Nicholas has been on these steroids for very long time, it will not just be stopped. It will be tapered down beginning this coming Thursday.

The rash on his ankles and inner thighs, as well as assessing his overall body, will be closely watched.

NICHOLAS IS SHINNING BRIGHTER EVERY DAY
This evening, Nicholas really enjoyed his “tasty” baked chicken legs, rice, and broccoli. Although he has been eating a little bit the last couple of days, tonight he looked so happy during his dinner—eating, talking, and laughing.

And he walked around the bed tonight!

AND A FUNNY SPIN ON THE AWFUL PAIN HE HAS BEEN GOING THROUGH
As you know, Nicholas has experienced continued pain in his stomach area. To take his mind of the pain and sometimes just to make him feel better, Nicholas either pats his stomach (pat, pat, pat…) or has mom or dad pat his stomach throughout the day and night. While mom was patting him today, Nicholas said, “I told you my stomach is the victim here.” He was referring to mom not patting him in the “just” the right spot.

October 18, 2005 Blood Counts:
WBC: 0.7
HGB: 9.0
PLTs: 56
ANC: 480

BLASTS: NA. Next analysis and reporting may be around October 21 if a bone marrow aspirate is performed October 20—we PRAY that there will be no blast (4n October 3)

ALT (LIVER ENZYME): NA. Target range: Below 40.

AST (LIVER ENZYME): NA. Target range: Below 60.

 


Monday, October 17, 2005 9:08 PM CDT

STATUS:
1) Early this morning Nicholas received another Platelets’ transfusion because his Platelets had dropped back down to 4.

2) Today’s procedure was chemotherapy into his spinal fluid only. He was in the recovery room for a short period of time.

3) Because other chemotherapy was delayed last week, the plan is to administer it (last dose of Vincristine) sometime in the next couple of days. Nicholas is continually being examined to determine an appropriate time based on the his overall condition, including stomach pain and periodic constipation due to Ileus (Vincristine side effect impacting the bowels).

4) After the Vincristine, a bone marrow aspirate is planned to be performed sometime next week to assess Nicholas’ remission status.

5) Rash on his ankles and inner thighs is suspicious. At this time the doctors do not think it is GVHD (it is not presenting itself like GVHD he experienced after the BMT), it’s possibly a reaction to one of the medicines. We PRAY that it is not GVHD.

5) Though not “feeling” his radiant self, Nicholas still “shines” with love and appreciation. Whether he is halfway asleep, moaning in pain or discomfort, coming out of the recovery room with his mask (respirator) on, you will still hear, “Thank you!” from Nicholas to those that are helping to take care of him or friends who stop by to say hello.

6) And this evening after resting from today’s procedure, Nicholas asked for and had a tuna sandwich with lettuce, and chips & salsa.

October 17, 2005 Blood Counts:
WBC: 0.5
HGB: 10.9
PLTs: 4
ANC: NA, because some information is not available when the WBC is below 0.6

BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work. Next reporting should be around October 20—and we PRAY that there will be no blast (4n October 3)

ALT (LIVER ENZYME): 85. Target range: Below 40.

AST (LIVER ENZYME): 44. Target range: Below 60.

 


Sunday, October 16, 2005 11:54 PM CDT

A DAY OF REST
Nicholas spent most of the day resting. He did not sleep peacefully last night; however, throughout the day he did rest/sleep peacefully.

PROCEDURES TOMORROW
Tomorrow (Monday) Nicholas will go to the operating room at noon for a lumbar puncture and chemotherapy into his spinal fluid. Tonight lab work will be performed and we will be checking to ensure his Platelets are at a safe level before the procedure (otherwise Platelets will be transfused before the procedure).

October 16, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA, because some information is not available when the WBC is below 0.6

BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work. Next reporting should be around October 20—and we PRAY that there will be no blast (4% on October 3)

 


Saturday, October 15, 2005 11:19 PM CDT

Day 330 since Nicholas’ original leukemia diagnosis

Day plus190since the BMT

Day 34 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 25 of relapse treatment

TRANSFUSIONS, FEVER, AND WE STILL KNOW THAT WE ARE BLESSED

AND ANOTHER TRANSFUSION—Red Blood Cells—this afternoon as Nicholas’ Hemoglobin had dropped to 7.8. Early evening he was up in bed and very alert and active. It has now been 13 days in the hospital for this stay, and the last few days Nicholas has cried specifically about wanting to go home…, be in his room, and be in his bed.

AND ANOTHER FEVER—this morning Nicholas spiked another fever around 4:00 AM. Thankfully, the rest of the day he was without fever.

AND WITH IT ALL WE KNOW WE ARE BLESSED—knowing God, knowing He loves Nicholas, and knowing God has us in His hands as we are going through all this “leukemia and bone marrow stuff” keeps us spiritually comforted.

Nicholas had a good evening; he was his playful self with the nurses, friends, and mom & dad. Remember, Nicholas months ago scaring the medical staff? Do you remember what he would do? It’s associated with the upcoming holiday. It’s….”boo!” A couple of times tonight he did things and then said, boo, to scare dad and some of the nurses. What a blessing to see and hear Nicholas interact with energy and spirit. He was vibrant tonight—thanks and glory to God!

TYPE OF GRAM NEGATIVE ROD VIRUS/BACTERIA IDENTIFIED

The type of Gram Negative Rod virus/bacteria that surfaced on October 12 has been identified as Citrobacter. Thankfully, it is treatable with antibiotics.

NOTE

To answer the question on a guestbook entry, Nicholas found five $1 bills on his treasure hunt last night.

October 15, 2005 Blood Counts:
WBC: 0.1
HGB: 7.8
PLTs: 32
ANC: NA, because some information is not available when the WBC is below 0.6

BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work. Next reporting should be around October 20—and we PRAY that there will be no blast (4n October 3)

ALT (LIVER ENZYME): 81. Target range: Below 40.

AST (LIVER ENZYME): 62. Target range: Below 60.

 


Friday, October 14, 2005 11:37 PM CDT

Day 329 since Nicholas’ original leukemia diagnosis

Day plus189since the BMT

Day 33 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 24 of relapse treatment

ANOTHER PLATELET TRANSFUSION
Nicholas’ Platelets were down to an all time low of “4”, so he very much needed another transfusion which he got this morning. We are thankful that he had no adverse reaction to the transfusion.

PAIN MANAGEMENT BUMPED UP
The pain Nicholas is experiencing doesn’t seem to be easing at all, even after ending the constipation this evening with two bowel movements. We really thought he’d start to feel better as his bowels started working a bit, however, that wasn’t the case. His PCA was increased to 39ml, from 26, per hour. Hopefully he will start to feel some relief and perk up some. It is so hard to see and hear him in pain.

FEVER
Nicholas had been fever free for about 36 hours. He spiked another fever this evening around 8:30PM. Tylenol was administered and he doesn’t seem bothered by the fever at all. We sure are, though. It’s so difficult to not know what is going on inside his little body.

GETTING HIM UP MOVING HIS LEGS & ARMS, AND TREAURE HUNT
Creating games with balls and other things for him to use his legs/feet and arms/hands reminded us of the BMT days. And we went on a late night treasure hunt looking for $1 bills—it’s mom & dad’s secret on how they were placed around the hospital (and we’re sure you know too so it’s now your secret as well). It was a short hunt because Nicholas’ stomach was a little uncomfortable sitting in the wheelchair. However, we think that brief time up and about and moments with a changing-scenery provide therapy to Nicholas.

October 14, 2005 Blood Counts:
WBC: 0.1
HGB: 8.6
PLTs: 4
ANC: NA, because some information is not available when the WBC is below 0.6

BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work. Next reporting should be around October 20—and we PRAY that there will be no blast (4n October 3)

ALT (LIVER ENZYME): NA. Target range: Below 40.

AST (LIVER ENZYME): NA. Target range: Below 60.

 


Thursday, October 13, 2005 11:59 PM CDT

Day 328 since Nicholas’ original leukemia diagnosis

Day plus188 since the BMT

Day 32 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 23 of relapse treatment

ANOTHER FEVER EARLY THIS MORNING, AND THEN AN UNEVENTFUL MEDICAL DAY
Again, after midnight this morning (Thursday) Nicholas came down with a fever and it too went away later in the morning. Although the rest of the day was uneventful medically, Nicholas’ legs are too sore right now to hold him up for more than a minute—his muscles have been sore for over a week because of chemotherapy and he has been laying down for over a week.

And again, a physical therapist spent time working and playing with Nicholas, followed by a Books-A-Live representative sharing interactive computer games with Nicholas.

THIS HOSPITAL STAY IS VERY SCARY, VERY HARD!
We are still waiting for the blood cultures from the last two days to determine what type of bacteria Nicholas is facing in addition to the Gram Negative Rod virus. Specific information on the Gram Negative Rod virus should be known early next week.

Although Nicholas was no longer constipated a couple of days ago, the last couple days he has been constipated again. We know that the chemotherapy medicine, Vincristine, has side effects linked to the stomach issues Nicholas is facing and we are very concerned about what may be going on within Nicholas' stomach and entire body. And, we know that God is encamped around Nicholas and PRAY very, very hard for Nicholas’ cure—in Jesus’ name. We are thankful that there has not been a fever in the last 24 hours. And we PRAY thanking God for you, our friends for being with us in so many ways near and far.

TRYING TO GET HIM UP AND WALKING
Nicholas still has the PCA machine connected allowing pain medicine to be administered whenever he needs it. And, tomorrow we want to continue working to get Nicholas on his feet and walking more. Step-by-step we will get him moving; and prayer-by-prayer we look to our loving God for Nicholas to be healed!

READING TO HIMSELF, AND BEING READ TO BY ONE OF THE NURSES
Tonight, Nicholas read the book “Zach’s Alligator” by Shirley Mozelle out loud (with a little help from reflecting on mom previously reading the book to him so he was able to interpret the story via the pictures on each page). And very late tonight, when one of the nurses came into the room to say hi to Nicholas, he asked her to read “Zach’s Alligator” to him. She did and Nicholas was enjoying eating shrimp tempura mom prepared as the nurse read (pictures in a couple of days).

October 13, 2005 Blood Counts:
WBC: 0.1
HGB: 9.1
PLTs: 18
ANC: NA, because some information is not available when the WBC is below 0.6

BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work. Next reporting should be around October 20—and we PRAY that there will be no blast (4n October 3)

ALT (LIVER ENZYME): 94. Target range: Below 40.

AST (LIVER ENZYME): 42. Target range: Below 60.

 


Wednesday, October 12, 2005 9:30 PM CDT

Day 327 since Nicholas’ original leukemia diagnosis

Day plus187 since the BMT

Day 31 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 22 of relapse treatment

FEVER, FEVER AND SCARE
After midnight this morning Nicholas came down with a fever and that fever went away later in the morning. Then, this afternoon Nicholas started getting “chilly,” with alarming high heart rate, and shallow breathing. The nurse practitioner was in the room and quickly examined Nicholas and his doctor was called into the room. Several doctors and nurse practitioners in his room were seamlessly in motion assessing Nicholas and actions to take.

Coincidently, blood cultures drawn because of the fever after midnight had just come back as the staff was in motion. One of the cultures showed that Nicholas had a virus: Gram Negative Rod. Nicholas is now receiving a third antibiotic (already two from last Monday’s fever) and will be watched very closely because this virus can negatively impact his blood counts and blood pressure.

UP AND “VERY” ALERT FOR PORTIONS OF THE DAY—SPECIAL VISIT FROM A “FORMULA ONE” RACE CAR DRIVER
While Nicholas battles these fevers and is resting a lot to help regain his strength and energy, there were several brief moments today when he was very alert, having fun, and entertaining. In one breath here is a snapshot of today’s visits: friends, physical therapy staff member who worked with him during the BMT, Formula One race car driver Ryan Justice, Books-A-Live staff member, Barry Bonds autographed painting from radiology staff member who just met Nicholas, and more friends.

Early evening Nicholas was sitting up in bed singing songs from Veggie
Tales, and a little later singing a few of the musical scenes from the Disney movie, The Haunted Mansion.

NOTE ABOUT NEW PICTURES: Remember, because being hospitalized last Monday was not planned we did not bring our camera/PC connections to upload pictures from this hospital stay onto this site as well as the photo albums. We will try to add new pictures in the next few days.

TOMORROW’S PROCEDURES WILL BE POSTPONED
Tomorrow’s procedures in the operating room and other chemotherapy will be postponed because Nicholas’ doctors do not want his blood counts further impacted, along with the Gram Negative Rod virus that impacts the counts.

October 12, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA, because some information is not available when the WBC is below 0.6

BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work. Next reporting should be around October 20—and we PRAY that there will be no blast (4n October 3)

ALT (LIVER ENZYME): NA. Target range: Below 40.

AST (LIVER ENZYME): NA. Target range: Below 60.

 


Tuesday, October 11, 2005 10:50 PM CDT

Day 326 since Nicholas’ original leukemia diagnosis

Day plus186 since the BMT

Day 30 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 21 of relapse treatment

EATING, PAIN MANAGEMENT MACHINE, BURSTS OF ENERGY
Nicholas can now eat almost anything he wants except fatty or spicy foods. Up first was chips and salsa—mild, and this evening he had diced chicken and mashed potatoes over gravy, & green beans.

He did not sleep well last night because he was uncomfortable and had consistent pain in his mid-section. (Remember, the BK Virus in his Bladder takes time, as it has to just run its course). This afternoon a Patient Control Analgesic (PCA) machine was hooked up to Nicholas. The PCA delivers a continuous flow of pain medicine and enables mom, dad, or Nicholas to release a boost of the pain medicine by a push of a button, once every 8 minutes (up to a programmed dosage hourly). NOTE: And with Nicholas not sleeping well at all last night, mom did not get any rest. So dad took over early this morning so mom could get about 5 hours of rest (with a couple of interruptions). This is okay as parents working through all this “leukemia and bone marrow stuff” finds ways to keep going—like others, we have to and we do!

CT Scan performed late today to help identify any other areas that could be the source of the pain Nicholas is experiencing. Awaiting results.

Although he slept or was working through being uncomfortable most of the day, less than one hour after the PCA was hooked up amazingly Nicholas was energized, alert, and expressively feeling better. What a difference being “comfortable” makes. Great timing, Books-A-Live came again today, shortly after the PCA was hooked up, and Nicholas was excited about that interaction. So far this evening he has been more alert in one evening than he has the entire last eight evenings. He enjoyed painting pictures tonight.

ANOTHER PLATELETS TRANSFUSION
The Platelets count today came down to 9; so another Platelets transfusion was administered early afternoon. Frequent blood transfusions can be expected until Nicholas’ bone marrow has recovered. NOTE: These are new phases of the process for us—we were so fortunate to not have experienced frequent transfusions (that is to be expected) during the BMT process.

October 11, 2005 Blood Counts:
WBC: 0.1
HGB: 10.0
PLTs: 9
ANC: NA, because some information is not available when the WBC is below 0.6

BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work

Note: Below we are revealing the Liver enzymes instead of the Pancreas enzymes that are now in range.

ALT (LIVER ENZYME): 131(down from yesterday). Target range: Below 40.

AST (LIVER ENZYME): 50 (up from yesterday). Target range: Below 60.

 


Monday, October 10, 2005 10:36 PM CDT

Day 325 since Nicholas’ original leukemia diagnosis

Day plus185 since the BMT

Day 29 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 20 of relapse treatment

NICHOLAS KNOWS HIS BODY AND THE DOCTORS WERE “ASTOUNDED”
Remember last week when Nicholas said, “my bladder hurts” as the doctors were working to identify the pain and causes of any infection. All of the blood and urine cultures have come back negative; however, today one of the urine tests came back positive for a BK Virus. So, Nicholas was right because he has been saying it was his bladder that is hurting. The doctor was “astounded” that he knew the location of his bladder to have stated where the pain was coming from.

Nicholas’ immune system has been suppressed with the chemotherapy and immunosuppressive kids are at risk for the BK Virus to surface. Like the CMV virus discussed in the August 18 journal, the BK Virus can lie dormant in anyone’s body. There is no action to take to cure it, it just takes time and the bone marrow producing “T-cells” to push the virus back to being dormant.

Today he looked a lot better than the last several days. Also his skin is actually looking really good (although we are watchful for any GVHD to surface as the Cyclosporine dosage has been reduced).

THESE ARE BLESSINGS FROM ABOVE

A LITTLE BIT OF SALSA, WITH HIS CHIPS
The Pancreas numbers are still in range; and Nicholas is no longer constipated. Although he is still experiencing bladder pain he was able to have a dab of salsa with his baked or fat free chips. Looking at him eat his “salsa chips” was a beautiful sight. We think Nicholas actually felt beautiful inside and out as he sat up looking very alert and vibrant, and started eating/enjoying his 4 chips with salsa.

LIVER ENZYMES ARE COMING DOWN—GREAT
Please see the information below.

PS2 VIDEO GAMES RECENTLY PLAYED
Robots, Sly 3-Honor Among Thieves, Crash Bandicoot-The Wrath Of Cortex, Hulk-Ultimate Destruction

BOOKS RECENTLY READ
Tom-by Tomie dePaola, No Matter What-by Debi Gliori

October 10, 2005 Blood Counts:
WBC: 0.2
HGB: 9.3
PLTs: 44
ANC: NA, because some information is not available when the WBC is below 0.6

BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work

Note: Below we are revealing the Liver enzymes instead of the Pancreas enzymes that are now in range.

ALT (LIVER ENZYME): 153. Target range: Below 40.

AST (LIVER ENZYME): 48. Target range: Below 60.

 


Sunday, October 9, 2005 11:15 PM CDT

Day 324 since Nicholas’ original leukemia diagnosis

Day plus184 since the BMT

Day 28 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 19 of relapse treatment

PANCREAS NUMBERS IN RANGE, NICHOLAS’ DIET HAS BEEN EXPANDED
Your love is felt and your voices/prayers are being heard—Nicholas’ Pancreas numbers are now in range. We recognize and give thanks to God for his love. Nicholas was able to add chips to his diet today: baked and/or fat free chips. In fact, his diet has been expanded to a Mechanical Soft diet meaning easy to chew foods.

There is power and more so, comfort, in having a choice! Although Nicholas was able to have chips and an expanded diet, he did not want to eat the chips early on in the day, eat lunch (pasta with meat sauce, green beans, pears…), or eat dinner (baked chicken, mashed potatoes with gravy, carrots, peaches…). Nicholas just didn’t feel well enough or have the energy to eat. Later in the evening he had a few chips. Remember, he was getting the nutrients and vitamins needed through TPN via an IV. We PRAY for continued/sustained healing and energy.

STOMACH AREA PAIN CONTINUES, CONCERN WITH LIVER NUMBERS, WATCHING FOR GVHD
Another x-ray of the stomach was taken this afternoon and we are awaiting the assessment. While the Pancreas numbers came into range, the Liver numbers are high out of range (ALT: 236; target range: Below 40. AST: 93; target range:
Below 60.)

Last night Toradol was administered for pain instead of Morphine (for reasons stated in last night’s journal). This morning the doctors stopped this medicine because of an effect it has on Platelets. Nicholas was very uncomfortable again last night and today he was uncomfortable as well. He said, “I just can’t get comfortable.” We are sitting with him different ways, holding him different ways, patting his stomach, applying warm packs, and other medicines are being administered to help get rid of the pain. He was comfortable only in brief pockets of the day, and just tried to sleep most of the time.

With the continued tapering down of Cyclosporine, being watchful for GVHD is certainly an equal priority. Nicholas’ doctors are being proactive and watchful over him—we really see and feel that they “care” and are “working” to cure Nicholas. We PRAY that God guides their minds and continues to direct us.

ANOTHER PLATELETS TRANSFUSION
This morning, Nicholas’ Platelets dropped to 8, the lowest ever! He received a Platelet transfusion before noon. (Platelets count was not determined yesterday.)

PRAYING FOR REMISSION AND SUSTAINED REMISSION
Getting into remission is the first step and as we stated late last week it appears Nicholas is on this track. While sustaining remission is the step after remission, all things can be done through God so we can never really get a head of ourselves through Him. So the following is provided as we ask that you PRAY with us for remission as well as the following: If donor cells come back, will we need another BMT? Through God and His will Nicholas would not need anything to be “healed.” And it is possible that Nicholas would not need any type of BMT if the donor cells come back (re-start production of white blood cells, red blood cells, and platelets) as the leukemia cells are destroyed. WHY ARE WE SAYING THIS WITH OTHER STEPS STILL TO TAKE: Because it is never too early to PRAY, focus PRAYER, and see God’s touch revealing a miracle.

SUPPORTED BY THE MEDICAL STAFF AT ALL LEVELS
Briefly: It is amazing how all levels of the staff engage with us from their hearts as well as their minds—we feel their care and support. And with one of our doctors coming to us today “for us” even more than usual, let us know that she cares and goes beyond just doing a job to help take care of Nicholas.

October 9, 2005 Blood Counts:
WBC: 0.2
HGB: 11.0
PLTs: 8
ANC: NA, because some information is not available when the WBC is below 0.6

BLASTS: NA, when the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work

LIPASE (PANCREAS ENZYME): 35. Target range: Below 50.

AMYLASE (PANCREAS): 80. Target range: Below 140.

 


Saturday, October 8, 2005 11:59 PM CDT

Day 323 since Nicholas’ original leukemia diagnosis

Day plus183 since the BMT

Day 27 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 18 of relapse treatment

PANCREAS ENZYMES’ NUMBERS CONTINUE TO COME DOWN TOWARD THE TARGETED RANGE—WE ARE SO, SO GRATEFUL
Again, we know Nicholas is blessed and we are so grateful. His Pancreas enzymes’ numbers are coming down quickly.

PAIN: Tonight after midnight Nicholas will receive Toradol (because his Kidney levels are in range this medicine can be administered) for the pain instead of Morphine that has been used several times. Aside from other issues with Morphine, Morphine relaxes the bowels further complicating any constipation and Nicholas is constipated. The chemotherapy medicine, Vincristine, that has been administered has a side effect of constipation. We are still awaiting additional urine analyses to help identify the pain in his stomach area.

AFTERNOON NEGOTIATIONS—BY NICHOLAS
“Mom, where is the remote?” Mom was happy to hear this because Nicholas has not been feeling well enough to even watch his favorite shows or play video games. So mom gave the remote to him, and next thing mom knew, a staff member walked into the room asking how she could help. Mom said, oh, Nicholas must have called for you after I gave him the remote. Nicholas then asked the staff member if she could get a nurse. She said, “I am a nurse!” Nicholas said, “I have an idea. Instead of having the salsa chips, how about if I just have the yellow salty chips (referring to Lays)?” Understandably, the nurse told Nicholas that it was not part of his diet.

ABLE TO EAT-WELL SIP-SOMETHING TODAY: Nicholas had chicken broth and a bite of Jell-O this morning, and this evening he had some more chicken broth. Late this afternoon, Nicholas asked his nurse if she would get his doctor. Dad asked why and Nicholas said, “I have a plan.” HIS DIET MIGHT BE EXPANDED TOMORROW—ALTHOUGH WE HIGHLY DOUBT IT WILL BE CHIPS & SALSA: Because the Pancreas enzymes’ numbers are coming down and because he did not have any pain while sipping the broth or afterwards, tomorrow his diet may be expanded.

LEUKEMIA & LYMPHOMA SOCIETY’S LIGHT THE NIGHT WALK
And again Nicholas—and all the kids afflicted with leukemia or lymphoma—are blessed to have so many people demonstrating their love and making a difference by “participating” in an evening walk Sunday (October 9) to celebrate and commemorate the lives of people touched by cancer. Walkers hold illuminated balloons: white for survivors, red for supporters, and light the night with hope. The walkers and those who provide financial contributions are making a difference! They are taking action to help find cures.

The many individuals and groups who are walking in honor of Nicholas warm our hearts. Thank you friends from AAA, Diablo Valley Montessori School in Lafayette, friends we have met on this journey, and friends from Lafayette. Thank you, everyone, who are making a difference directly or indirectly.

SPECIAL NOTE
Mom & dad are trying hard to do everything we can, with God as our director, for Nicholas and it is hard to take care of ourselves and other boys (thankfully they are older). What beautiful surprises for mom on her birthday today. While our hearts are so worn, mom’s heart was warmed by the many well wishes, friends who were able to surprise mom with warm-hearted things, and her boys including Nicholas who showed their love and appreciation. The love, appreciation, and warm-hearted things provided some soothing of the heart—even if just for a few moments.

October 8, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: When the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work

LIPASE (PANCREAS ENZYME): NA. Target range: Below 50.

AMYLASE (PANCREAS): 87. Target range: Below 140.

 


Friday, October 7, 2005 11:46 PM CDT

Day 322 since Nicholas’ original leukemia diagnosis

Day plus182 since the BMT

Day 26 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 17 of relapse treatment

BLOOD AND URINE ANALYSES REFERENCE ANY INFECTION LINKED TO THE OCTOBER 3 FEVER
Blood and urine analyses so far have come back negative (good) showing no infection that may have caused the October 3 fever. Nicholas is still having pain in his stomach area, and we know that he has Pancreatitis from the E. Coli Asparaginase as “journaled,” so two other urinary tests are being performed.

PAIN AND NICHOLAS APPARENTLY HAS JUST BEEN WORKING THROUGH IT
Nicholas has continually shown all of us—including you—his strength since the November 19, 2004 diagnosis. We just learned about the pain felt from having Pancreatitis and not surprisingly, Nicholas has been working through it with rather mild pain medicine. Understanding the pain, Nicholas will be given Morphine when needed to make him comfortable. He certainly does not need to deal with any more pain or impact on his life!

I WANT TO GO HOME, EAT AT MY HOUSE, SLEEP IN MY BED, AND YELL IF I WANT TO
As you know, because of the Pancreatitis Nicholas has now not been able to eat for 2 ½ days. The pain mom & dad feel, hearing his cries for food, to eat something, cuts through our hearts—truly cuts through our hearts. With Nicholas reaching up out of his bed, looking into our eyes, placing his head on our shoulders, wrapping his arms around our necks, and crying out to eat, hurts! We understand why (as “journaled”)!

Nicholas is hurting to be home so he can just be a kid, just do the things that kids do in the yard, around the house, and in his room. He wants to be home so he can just eat when he wants to. HE HAS NOT LOST HIS SPIRIT OR HIS PEOPLE SKILLS: Late afternoon when a nurse came into his room, Nicholas in a crying voice asked her if he could eat. The nurse understands all that Nicholas has been going through regarding the Pancreatitis and understands the management of it. However, after talking with his doctor, the nurse told Nicholas that the doctor said he could have one medicine cup of ice chips to see if his stomach can tolerate it (one medicine cup is 1 ounce). Nicholas said, “I have a plan! How about I have a couple ice chips, then some salsa chips, then ice chips, then salsa chips. Then ice chips, ice chips, ice chips; salsa chips, salsa chips, salsa chips?” (Salsa chips, referring to chips with salsa.)

We are so THANKFUL that the Pancreas enzyme numbers are coming down, getting closer to the targeted range.

Thinking about Nicholas’ gut, liver, and skin associated with GVHD as the Cyclosporine continues to be tapered down, we are being very, very watchful for any GVHD. And we are so THANKFUL Nicholas has not been vomiting or having diarrhea with all that is going on inside of him. THANKFUL for God shielding Nicholas on this journey!

PLATELETS
So you know Nicholas’ Platelets had been dropping and way out of range. You know that when they dropped to 11, he received a Platelet transfusion (October 3), and then on they climbed up to 101 (October 5), although still low out of range. So in case you are wondering now that you see the Platelets today dropped to 42, please know that it is not uncommon to happen this way. Not uncommon because the life of the Platelets transfused may not have been a lot (I guess you could think of it like “shelf life”). And remember, Nicholas’ marrow has not revved up yet to produce blood cells, including Platelets.

A POEM: MY BEAUTIFUL SON
(From unknown author and shared on other CaringBridge sites)

My Beautiful Son

I watch you playing,
Without a care.
It's hard to believe,
The cancer is there.

You look so bright,
So happy and well.
If someone new met you,
They couldn't tell.

Your strength is amazing,
Your courage so strong.
You've fought this disease,
So well for so long.

It's from your strength,
that I draw mine.
I know you will come through this,
It'll just take time.
Carry on smiling,
I will too.
Through the hard times,
I'll carry you.

You are my world,
The air that I breathe.
I know in my heart,
You'll never leave.

Keep strong my love,
The battle has begun,
But with your strength,
It will be won.

October 7, 2005 Blood Counts:
WBC: 0.3
HGB: 10.4
PLTs: 42
ANC: NA, because some information is not available when the WBC is below 0.6

BLASTS: When the WBC is below 0.6 some levels/information is not available through the “daily” analysis of lab work

LIPASE (PANCREAS ENZYME): 136. Target range: Below 50.

AMYLASE (PANCREAS): NA. Target range: Below 140.

 


Thursday, October 6, 2005 11:31 PM CDT

Day 321 since Nicholas’ original leukemia diagnosis

Day plus181 since the BMT

Day 25 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 16 of relapse treatment

GOOD NEWS
The bone marrow is coming back and no leukemic cells were detected in the preliminary review from today’s bone marrow aspirate. And words that prompted mom to say, “I will sleep better tonight!” were, “It looks like he is going into remission—we are not there yet; however, this is the first step and a good sign.” In fact, our doctor then said he would sleep better tonight as well. And again we are blessed, blessed to have caring doctors, nurse practitioners, nurses, and other medical staff. And we have been so fortunate to have experienced these blessings at both, CHO and LPCH.

Remission will be when:

A) Nicholas has a normal bone marrow

B) ANC above 1,000

C) Normal WBC

D) Platelets above 100

PANCREATITIS, NEUTROPENIC, HOSPITALIZATION
More somewhat good news; the Amylase (Pancreas enzyme) has come down dramatically although it is still high out of range (please see below). However, Nicholas still cannot eat because we have to ensure his Pancreas is healing and we do not want to irritate it as it continues to heal. So again, today Nicholas is so upset that he can’t eat. All of the feelings Nicholas and mom & dad talked about in yesterday’s journal were magnified and more intense today—as it has now been over 36 hours since he last ate.

And because Nicholas is still neutropenic (discussed yesterday), he is expected to be in the hospital for at least 10-plus days. The doctors need to see Monocytes, “a type of white blood cell that assists in fighting infection. The Monocyte, along with the Neutrophil, are the two major microbe-eating and killing cells in the blood.” They need to see the bone marrow revving up to make new cells, including Platelets.

CHEMOTHERAPY TONIGHT
Tonight, sometime after 11:00 pm (PST), Nicholas will receive Vincristine and Daunorubicin via his Broviac (central line). Please PRAY with us that Nicholas is shielded from the Vincristine side effects that can cause bone pain, impact leg muscles… Remember the body pain and arms/legs pain over the last 10 days that Nicholas experienced?—we PRAY that he is shielded.

THE IMMEDIATE PLANS
STEP 1: Nicholas is expected to be in remission in 2-3 weeks. There are 12 more days of this current treatment regimen.

STEP 2: Planning for no complications. Note: Medically, Nicholas is more at risk for treatment related complications because of all that his body has been through with the treatment after the original diagnosis, the pre-bone marrow regimen, the BMT, and the relapse treatment.

STEP 3: It will be 3-8 weeks before any type of bone marrow transplant—we’ll discuss later, however, something novel needs to be determined.

FRIENDS AND FUN TODAY
Although the procedures today took up about half of the day, the rest of the day was filled with friends and fun. First, many nurses/nurse practitioners visited with Nicholas on the way to the procedure and after the procedure. When Nicholas was leaving the recovery room to go to his room, family friends and KJ met him. You know the yellow “LIVESTRONG” wristbands, well KJ and his family had wristbands made for Nicholas that are blue with a “NICHOLAS!” imprint. Once again, we know that we are blessed. So know, we are wearing the yellow one and Nicholas’ blue one on one wrist. I know you can see the truth and the power of these words together, “LIVESTRONG,” “NICHOLAS!” on one wrist that symbolizes Nicholas—thank God.

And a representative from Books-A-Live came to Nicholas and he was kept busy and challenged for a while having fun with computer programs/games.

Actually, mom had two specific visits from a long-time friend and friend we met since we have been at LPCH. These visits are so good for mom; and they are good for dad—seeing mom able to relatively relax for a few moments with conversation and friendship during these awful, awful moments and this horrible journey.

October 6, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: Awaiting today’s bone marrow aspirate results

LIPASE (PANCREAS ENZYME): NA. Target range: Below 50.

AMYLASE (PANCREAS ENZYME: 283 down from 585 yesterday. Target range:140

 


Wednesday, October 5, 2005 11:27 PM CDT

Day 320 since Nicholas’ original leukemia diagnosis

Day plus180 since the BMT

Day 24 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 15 of relapse treatment

UNABLE TO EAT—NOT BECAUSE HE DOESN’T WANT TO
“Mommy & daddy, I really want to eat…” As a parent, these moments throughout the day were very, very hard. Hearing Nicholas crying out for food and seeing the tears run down his face as he was just looking to us to let him eat. This morning’s lab results revealed that two Pancreas enzyme levels were extremely high out of range:

Lipase was above 200. Target range: below 50.

Amylase was 585. Target range: Below 140.

As a result, the Pancreas needs some rest so as of this morning and for the next couple of days he will not be able to eat. Nicholas can only have sips of water. Tonight he started receiving TPN (remember this during the BMT phase, it is like “liquid food/nutrients in a bag”). However, it certainly did not satisfy his craving to “eat.” Usually, there are no long-term implications because of this Pancreas issue. CAUSE: Most likely the cause is from the E. Coli Asparaginase shots as impact to the Pancreas is one of its side effects. At this point in time, we will not continue administering these shots; there have been 3 times that Nicholas has received this medicine since the relapse and he was scheduled to receive it 3 more times.

RED BLOOD TRANSFUSION
Nicholas’ Hemoglobin (HGB) level dropped to 7.3 shortly after midnight (at 12:30 am October 5) so later this morning (around 10:00 am) he received a Red
Blood transfusion. Note: Remember two days ago he received a Platelet transfusion and that level has climbed to 101. This evening Nicholas was more alert and energetic—not surprising since the Red Blood cells carry Hemoglobin, which binds oxygen and carries it throughout the body. However, about every 20 minutes he was upset because he couldn’t eat. Nicholas said, “I’m not feeling so good right now because I can’t eat.”

PROCEDURES TOMORROW (THURSDAY)
Our doctors are expecting that the bone marrow aspirate results reveal no blasts in the spinal fluid. Also, Nicholas will receive chemotherapy (same as last week) in his spinal fluid. No other chemotherapy will be administered tomorrow, as the doctors want to assess Nicholas’ overall numbers/chemistry from tomorrow’s lab work.

WE WILL BE IN THE HOSPITAL FOR AWHILE
With Nicholas’ blood count numbers so low and the fact that he is neutropenic (decrease below normal in the concentration of neutrophils, a type of white blood cell—no ability to fight infection), he will be in LPCH until they rise to targeted levels.

LEUKEMIA & LYMPHOMA SOCIETY VISIT
Eight representatives from the leukemia & lymphoma society visited Nicholas in his hospital room. Although Nicholas doesn’t need any more toys, understandably they brought gifts including something for Halloween. What do you think the Halloween gift was? It was a, a, a, okay, it was a “scary” looking mask.

NOTE: Pictures during this hospital stay will be posted when we return home.

October 5, 2005 Blood Counts:
WBC: 0.2
HGB: 7.3
PLTs: 101
ANC: NA, because some information is not available when the WBC is below 0.6

BLASTS: Current percentage will be determined from tomorrow’s bone marrow aspirate (when the WBC is below 0.6 some levels/information is not available through the daily analysis of lab work)

LIPASE (PANCREAS ENZYME): Above 200. Target range: Below 50.

AMYLASE (PANCREAS ENZYME): 585. Target range: Below 140.

 


Tuesday, October 4, 2005 11:59 PM CDT

Day 319 since Nicholas’ original leukemia diagnosis

Day plus179 since the BMT

Day 23 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 14 of relapse treatment

WE ARE ALL VERY TIRED—SNAPSHOT OF THE DAY:
Nicholas took several naps throughout the day and was certainly more comfortable today (most comfortable he has been in a week).

His lower stomach is still hurting him, and Oxybutynin has been administered to manage any bladder spasms.

Ativan was administered periodically and it helped to ease the stomach pain and overall made him more comfortable.

Part of the urine culture has been analyzed and it came back negative, awaiting remaining cultures. Urine culture and analysis is being performed to help assess the stomach pain.

The blood cultures that have been analyzed have come back negative (good), awaiting remaining cultures. Because of yesterday’s fever, the cultures will help assess any infection.

Nicholas is on standby (added to the schedule) to have multiple procedures early tomorrow evening, including in the operating room for a bone marrow aspirate, and chemotherapy into his spinal fluid. If these procedures cannot be performed tomorrow, the target will be Thursday. It is possible that Nicholas will have to remain in the hospital through the weekend until his blood counts recover.

This evening Nicholas’ former Montessori School teacher (Ms. Shirley) came by delivering cards from students, and spent time reading to him. Nicholas was playing host to Ms. Shirley and asked to have one of his favorite snacks to be shared—it was chips & salsa.

October 4, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: Current percentage will be determined with tomorrow’s labs

LACTIC DEHYDROGENASE (LDH): Current level will be determined with tomorrow’s labs

 


Monday, October 3, 2005 11:59 PM CDT

Day 318 since Nicholas’ original leukemia diagnosis

Day plus178 since the BMT

Day 22 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 13 of relapse treatment

NICHOLAS WAS ADMITTED INTO LPCH
While in the Day Hospital at LPCH receiving outpatient treatment, a few issues developed. And a couple of the issues were reasons for the staff to take immediate action before admitting Nicholas into the hospital as an inpatient.

A) First, Nicholas was admitted into the hospital because at 5:15 PM during a routine check of vital signs that were being conducted throughout the day, he had

Friday, September 30, 2005 11:59 PM CDT

Day 315 since Nicholas’ original leukemia diagnosis

Day plus175 since the BMT

Day 19 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 10 of relapse treatment

STILL PAIN IN HIS BODY (LEGS AND ARMS)
Nicholas’ body is still experiencing pain when touching his legs and arms or when he is moved. However, his mind is still strong. So after Nicholas and KJ discussed seeing each other today, Nicholas generated a little more strength to move about. Actually, their plans were for us to pick KJ up on our way home from the RMH so KJ could visit at our home. Mom & dad love the interaction between these two guys who have amazing spirit and compassion. By the way, Nicholas actually walked to the car from the RMH—this was the longest distance he has walked in the last three days!

TWO NEW PHOTOS UNDER “VIEW PHOTOS”
1) Listening and singing to music on the way home today
2) Relaxing in the family room with KJ

SO NICE TO BE HOME
Simply stated, and we’re sure known by most, being home is comforting. It brings a smile on our face and warmth to our hearts. We are hoping to be home for the weekend and two days next week.

September 30, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: NA

LACTIC DEHYDROGENASE (LDH): NA

CYCLOSPORINE: NA

 


Thursday, September 29, 2005 9:38 PM CDT

Day 314 since Nicholas’ original leukemia diagnosis

Day plus174 since the BMT

Day 18 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 9 of relapse treatment

TODAY’S PROCEDURES WENT WELL in the Operating Room (lumbar puncture and chemotherapy into Nicholas’ spinal fluid: IT Methotrexate, ARA-C, and Hydra cortisone) and Day Hospital (Vincristine and Daunrobucin).

And the E. Coli Asparaginase shots in the thighs were able to be administered while he was in the operating room and under anesthesia so he did not feel them at all. Again, because of the previous reactions to Asparaginase, Nicholas was pre-medicated and an emergency reaction kit was at his side all day. We will administer Benadryl every 4 hours for 24 hours to guard against reaction. So it will be another long night for mom & dad—and that’s okay.

Nicholas’ Platelets came down to 21 and although close to being at 20 (which is when a Platelet transfusion would take place), a decision was made not to do a transfusion today or tomorrow. We will have to closely monitor Nicholas over the weekend for any signs of bleeding.

BLASTS STILL GOING DOWN and it is so comforting to know at this point that the cancer is being destroyed by the chemotherapy. Today, Blasts were down to 4 percent.

NICHOLAS’ BODY IS STILL SORE TODAY; he was able to move just a little on his own without much discomfort. And just the slightest movement causes Nicholas a lot of pain. With Vincristine contributing to the body pain and with Vincristine administered today, we will be watchful for any related pain. We will administer pain medicine (Tylenol) if necessary.

NEXT WEEK’S procedures will be similar to this week. On Monday Nicholas will be in the Day Hospital for lab work, Cytogam, and E. Coli Asparaginase shots in his thighs. He will not be under anesthesia so we will continue to PRAY for an uneventful procedure. However, lab work will determine if we can administer these shots on Monday. And lab work will determine if a Platelet transfusion is needed on Monday.

Next Thursday there will be lab work. Next Friday Nicholas will be in the Operating Room for a bone marrow aspirate as well as a lumbar puncture with chemotherapy into his spinal fluid, and more E. Coli Asparaginase shots (because he will be in the operating room they will be administer while he is under anesthesia).

GOING HOME FRIDAY MORNING and we will be home for the weekend.

September 29, 2005 Blood Counts:
WBC: 2.7
HGB: 10.7
PLTs: 21
ANC: 1,080

BLASTS: 4 percent.

LACTIC DEHYDROGENASE (LDH): Level not analyzed today. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

CYCLOSPORINE: Level not analyzed today.

 


Wednesday, September 28, 2005 11:59 PM CDT

Day 313 since Nicholas’ original leukemia diagnosis

Day plus173 since the BMT

Day 17 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 8 of relapse treatment

LAB WORK LOOKS GOOD
Overall lab work looks good. There are dozens of levels closely followed and acted upon; however, following is an update on key levels moving in the right direction:

BLASTS are down from 27 percent to 5 percent—And we praise God!

LDH is down from 1,057 to 734.

PLATELETS, although very low out of range, they went up from 23 to 25 so a Platelet transfusion was not needed today.

We know the critical steps of getting Nicholas into remission, then keeping him in remission, and then the steps for a different type of bone marrow transplant. (Other than what we have said on previous journals since the relapse, we’ll explain more about the transplant later.) Although we are only approaching success on the first step, we are still getting ready to celebrate. Celebrate because Nicholas continues to simply be amazingly spirited, full of joy, and continually loving with everyone around him. In fact, we celebrate everyday because Nicholas deserves celebration daily! The warmth of the sunshine, the glow of the moon, and the sparkle of the stars are more precious to us because of Nicholas and so many kids like him. And we celebrate because of the amazing things about Nicholas that continue to surprise so many people every day.

NICHOLAS IS STILL EXTREMELY SORE
Nicholas’ legs and arms are very, very sore. He had to be carried throughout the day to do even common things like going to the bathroom. When he did try to walk, he had to “shuffle” his feet to lessen the pain in his legs. Again, the Vincristine and steroids can cause this effect—however, here too we PRAY for God’s shielding of Nicholas and for His glorious hands to heal him!

Today was one of the most uncomfortable full days for Nicholas as even getting into or turning over in bed was extremely challenging for him. He understands the importance of letting us know how he is feeling. At one point tonight he wanted to let us know how he was feeling and wanted to make sure we didn’t take him to the hospital based on how he was feeling. WHAT NICHOLAS SAID handling this situation: “I don’t feel ‘hospitally,’ I just don’t feel good.”

PRAYING FOR COMFORT AND UNEVENTFUL PROCEDURES TOMORROW
Tomorrow (Thursday) will be a long, full day of procedures. From the operating room for a lumbar puncture and chemotherapy into his spinal fluid, to chemotherapy afterwards into his blood stream via his Broviac (central line). And possibly the two E. Coli Asparaginase shots into his thighs. The doctors are assessing the possibility of administering the shots while he is under anesthetics in the operating room.

And PRAYING for a miracle for all to further witness and give glory to God—the complete healing and cure can be now, in Jesus’ name!

I KNOW WE KEEP SAYING IT, HOWEVER, WE KEEP FEELING IT: Thank you, thank you, thank you for being with Nicholas, mom & dad, and our other boys!

September 28, 2005 Blood Counts:
WBC: 4.2
HGB: 11.3
PLTs: 25
ANC: 2,100

BLASTS: 5 percent.

LACTIC DEHYDROGENASE (LDH): 734. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

CYCLOSPORINE: 218.

 


Tuesday, September 27, 2005 11:49 PM CDT

Day 312 since Nicholas’ original leukemia diagnosis

Day plus172 since the BMT

Day 16 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 7 of relapse treatment

IMPACT OF THIS AWFUL DISEASE ON OTHERS IS NOTHING COMPARED TO THE IMPACT ON NICHOLAS (and other kids in Nicholas’ situation)
There is no other way of thinking about the impact this awful disease is having on anyone, without first knowing that the impact on Nicholas is life-threatening and overrides any impact on mom & dad or his brothers. Putting it in perspective, the impact on mom & dad is insignificant, although real and hard hitting. From this perspective, we recognize the importance of taking care of ourselves to take care of Nicholas. However, the impact this awful disease has on us physically and mentally is challenging. And no matter how challenging, we will be up and out front on this fight with the strength our Father provides.

Last night (Monday) we administered Benadryl every 4 hours to guard against a reaction to the E. Coli Asparaginase shots, so dad got very little sleep administering the medicine trying to let mom get some rest for more than a few hours. Mom continues to prepare medicines, administer medicines, read & search to better advocate for Nicholas. The typical time for rest becomes the typical time to read & search information to be better prepared to get through “all this leukemia and bone marrow stuff.”

NO CHEMOTHERAPY TREATMENT TODAY; HOWEVER, NICHOLAS WAS IN PAIN
There was no chemotherapy treatment today; however morning and night we still had many medicines to prepare and administer. And throughout the day Nicholas experienced consistent pain primarily in his arms and legs (most likely from the Vincristine as stated yesterday).

HOME FOR THE DAY (TUESDAY) BEFORE TOMORROW’S LAB WORK
We left the RMH this afternoon and we are spending the night at home, returning to LPCH tomorrow (Wednesday) for lab work. Cylcosporine and Platelets are specific results the doctors will assess; all results will help to determine the continued chemotherapy plan. With Platelets, Nicholas may have to receive a Platelet transfusion tomorrow, as stated in yesterday’s journal.

AWAY FROM HOME THE NEXT FEW DAYS
After lab work tomorrow and possibly a Platelet transfusion, we will stay at the RMH. Then on Thursday Nicholas will be back at LPCH for procedures/chemotherapy all day, as stated in yesterday’s journal. We expect to be home Friday afternoon and the weekend.

September 27, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: Current percentage will be determined with tomorrow’s labs

LACTIC DEHYDROGENASE (LDH): Current level will be determined with tomorrow’s labs. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

CYCLOSPORINE: Current level will be determined with tomorrow’s labs.

 


Monday, September 26, 2005 11:45 PM CDT

Day 311 since Nicholas’ original leukemia diagnosis

Day plus171 since the BMT

Day 15 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 6 of relapse treatment

BELOW IS A SNAPSHOT OF THE DAY (As always, we are so fortunate to have you with us on this awful journey. Fortunate because you provide comfort through your loving thoughts, prayers, and/or guest book entries. And as always, we truly hope these journals are a help to you, help to focus on the things that Nicholas is experiencing enabling your thoughts, prayers, and/or guest book entries to help Nicholas.)

E.COLI ASPARAGINASE SHOTS: Blood samples sent to Los Angeles for an asparaginase analysis reveals that Nicholas has antibodies against this medicine. This means Nicholas’ body fights off 90 percent of this medicine when it is administered. Even considering the reactions experienced, our doctors determined that because this is an important medicine toward remission, Nicholas would receive two shots—one in both thighs simultaneously like he did in November 2004.

The day at LPCH for a check up and these shots began at 11:30 this morning. Nicholas was told about having to have two shots and he was more than brave while the nurses prepared him (pre-medicated to guard against a reaction, and a numbing cream on his thighs).

NICHOLAS ASKED to count to three, once again, to cue the shots. He asked the nurses to 1) apply the band-aids immediately after the shots, 2) “may I scream after the shots?” and 3) “I want my dad to carry me afterwards.” The nurses were very accommodating and patient as Nicholas prepared himself for the shots, while mom was lovingly holding him. Moments before 5:00 this evening the shots were administered and as of 11:45 tonight he is doing just fine. We are administering Benadryl every 4 hours, for 24 hours, to further guard against a reaction (yes, Benadryl is an effective guard against the seriousness of the potential reaction).

Later this week our doctors will have more information to determine if we should continue with these shots that originally were going to be administered twice a week for 3 weeks (one shot versus two shots).

WHAT’S NEXT: On Wednesday more lab work will be performed to check various levels toward helping to confirm the treatment to get Nicholas into remission, as well as help manage the following:

Cyclosporine: Remember, ever since the BMT we have not been able to keep the Cyclosporine in range for more than two days in a row. It fluctuated back and forth from being too high, to too low. This is why we had three medicines (Cyclosporine, Prednisone, and Cellcept) to guard against the GVHD. Once again, high and low out of range is what we are experiencing now.

Platelets: Remember, over the last two months Nicholas’ Platelets have been dropping and are now approaching a very low level (20) that will require a Platelet transfusion. With Nicholas overall leukemia treatment since the November 19, 2004 diagnosis, he has “only” received three Platelet transfusions and six Red Blood Cell transfusions.

On Thursday Nicholas will go back to the operating room for another Lumbar Puncture with chemotherapy (IT Methotrexate, ARA-C, and a steroid) injected into the spinal fluid, and two other chemotherapy medicines into his blood stream.

NICHOLAS’ NOTE TODAY: Before the E. Coli Asparaginase shots today, Nicholas wrote out his dinner request. He wrote, “Chicken, shrimp tempura, and egg-rice.” We use every opportunity to keep Nicholas focused on learning and mom & dad are so happy two see him always learning, not just wanting to learn. He thoroughly loves to write, and keep track of money.

FEELING THE EFFECTS OF CHEMOTHERAPY: Nicholas' body is very sore, mainly his arms and legs. This is believed to be a side effect of the chemotherapy medicine, Vincristine, that he received last Wednesday night. He is scheduled to receive Vincristine again this coming Thursday.

TOUCHING, LOVING VISIT: Recently, a BMT patient at LPCH relapsed and went to New York for a cord blood transplant. At LPCH before going to New York, Nicholas enjoyed playing with him and they had special moments playing with Pokemon cards. Parents dealing with this awful disease become close with other parents very quickly and really need the conversations and sharing of experiences. The parents of this 7-year old are amazing and were so loving to Nicholas, and giving of information in our conversations.

The beautiful 7-year old boy drew his last breath on August 20, 2005. While we did not know him deeply, we experienced the following at the LPCH that was written for his memorial service. He "gave infinite joy to his parents, tenderness to his little brother, playfulness to his friends, and unending love to all who knew him." Today, his mother visited Nicholas and mom & dad at the RMH. The mother of the 7-year old had been thinking about the recent journal regarding Nicholas giving one of his stuffed bears to a little boy who was crying at CHO. Today she delivered a huge stuffed-angelic-looking bear to Nicholas along with a large gift bag containing various books and toys. We PRAY for loving comfort to this family and the joy that this beautiful 7-year old will forever provide to all who knew him or touched by his story.

BLASTS AND LACTIC DEHYDROGENASE ARE CONTINUALLY COMING DOWN—please see below and refer to previous journals for the trending down.

September 26, 2005 Blood Counts:
WBC: 5.8
HGB: 9.8
PLTs: 23
ANC: 1,914

BLASTS: 27

Lactic Dehydrogenase (LDH): 1,057. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

Cyclosporine level: 186.

 


Sunday, September 25, 2005 11:59 PM CDT

Day 310 since Nicholas’ original leukemia diagnosis

Day plus170 since the BMT

Day 14 of the relapse—(As stated September 22,2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

VERY NICE DAY AT HOME
Friends, friends, friends, and Nicholas’ brothers made up the day, feeding our hearts with fun and laughter. And very nice conversations with friends momentarily eased the excruciating pain in mom & dad’s hearts and throughout our bodies. We know that our pain is nothing compared to what Nicholas is going through, and know that we must do EVERYTHING that we can do see Nicholas through it all. Everything beginning with God!

Also, a comforting prayer with friends today helped us in knowing our Father’s love is guiding Nicholas’ journey (and our journey).

BACK AT THE RMH TONIGHT
Tomorrow Nicholas will receive his second E. Coli Asparaginase shot in his thigh. This medicine scares us because of the reactions Nicholas has experienced and we are praying, knowing that God’s love is guiding ALL aspects of Nicholas’ journey so there should not be anything to fear—feeling God’s presence with us everywhere.

And back at the RMH tonight means being away from our other boys. Here too, we pray for guidance as we listen to His voice enabling us to parent from afar. We pray our other boys continually hear and feel our love—although delivered and expressed in somewhat unfamiliar ways to them (because mom & dad are away and at other times very focused on Nicholas’ cure).

NOTES

HAIR CUT: Most likely you have noticed a lot of hair on Nicholas. Tonight, we trimmed it and he sure did like the feeling, and the look. Because we do not have our home PC with us at the RMH, pictures with his haircut will be uploaded to this site and his photo album sometime during the week. However, along with the new home page photo above, clicking on View Photos you will see three other new pictures.

FOOTBALL AND BASEBALL: Oh, Nicholas did not watch any football today and when one of his brothers turned on a football game today in the family room, Nicholas responded that he could go into the living room to watch the game—Nicholas was watching a Disney show called, That’s So Raven. And Nicholas, as well as his brothers likes the SF Giants so it will be fun for them if the Giants can sweep the upcoming 4 games against the San Diego Padres.

September 25, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: Current percentage will be determined with tomorrow’s labs

Lactic Dehydrogenase (LDH): Current level will be determined with tomorrow’s labs. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

Cyclosporine level: Current level will be determined with tomorrow’s labs.

 


Saturday, September 24, 2005 11:59 PM CDT

Day 309 since Nicholas’ original leukemia diagnosis

Day plus169 since the BMT

Day 13 of the relapse—(As stated September 22,2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

DISCHARGED AT 6:00 PM: Nicholas had a fun, full day from morning, noon, and night with family and friends at LPCH and then at the RMH. And visits by other nurses Nicholas met at LPCH during his BMT stay were definitely a good thing today. And medically, it was an un-eventful day—another good thing. Leaving the hospital, Nicholas was jogging (carefully because his Platelets are so low) oust of the hospital doors and screaming the screaming sounds you hear from “kids at play” that is truly music for your heart. Tonight before bed he was watching a favorite Disney show and during the opening of the show, you know when the theme song is playing, Nicholas was singing the song and dancing to the beat. And mom & dad smiled as Nicholas was warming our hearts.

HOME TOMORROW FOR SEVERAL HOURS: We will take Nicholas home tomorrow for the afternoon to just be “home,” spend time with his brothers, and planned time to spend with a couple former Diablo Valley Montessori School classmates.

WHAT NICHOLAS SAID DURING HIS PRAYER OVER DINNER: “…thank you for a wonderful day, and God thank you for letting me go home—sort of. Amen.” Nicholas was referring to being at the RMH this evening and at least out of the hospital.

WHAT NICHOLAS WROTE TO MOM: In addition to mom & dad teaching Nicholas math using money, mom has been doing a great job teaching Nicholas to read, spell, and write. As mom was preparing Nicholas’ night medicines, Nicholas wrote a note and gave it to her. Referring to his feelings on having to take the medicines tonight, the note read: “No, mom.” Nicholas was just using what he has been learning and being funny; he took his medicines.

UPCOMING PROCEDURES: On Monday Nicholas will be back at LPCH for a second E. Coli Asparaginase shot. Then we expect to be home Tuesday night & Wednesday day before returning back to the RMH Wednesday night for Thursday Lumbar Puncture with chemotherapy in his spinal fluid, and chemotherapy in Nicholas’ blood.

ALTHOUGH WE HAVE SAID THIS MANY TIMES, WE ARE BLESSED: We are blessed and we feel it. We are blessed to have Nicholas be so amazing the way he is handling this “leukemia and bone marrow stuff.” We are blessed to have a family that shows/provides so much love and support for Nicholas, mom & dad, and our other boys. We are blessed to have friends (and many that we have never met in person) to more than express love for Nicholas and our family—friends that provide proactive and unconditional love. Note: Nurses and doctors at CHO and LPCH, we include you as friends as you continually collaborate and work to be active, caring hospitals. Not just say, “We are a caring hospital.”

September 24, 2005 Blood Counts:
WBC: 8.8
HGB: 9.9
PLTs: 29 (Transfusions may happen if they drop further, down to 20 or below)
ANC: 3,168

BLASTS: 51 percent

Lactic Dehydrogenase (LDH): 1,816. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

Cyclosporine level: 338, from high out of range at 338 to low out of range at 162 and back up to 338.

 


Friday, September 23, 2005 3:22 PM CDT

Day 308 since Nicholas’ original leukemia diagnosis

Day plus168 since the BMT

Day 12 of the relapse—(As stated September 22,2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

***UPDATE #3, September 24, 12:45 AM

Shortly after midnight Nicholas complained of being cold and was chilly. His heart rate was elevated and this began to remind us of the November 2004 reaction although that time the reaction was within 20 minutes of the PEG Asparaginase shots, not 6 hours... Benedryl and Hydra-cortisone was administered and the nurses/doctors further examined Nicholas. His lungs were clear, and after the Benadryl his breathing was okay and he was not chilly. He will be closely watched over the night.

***UPDATE #2, 11:00PM***

A) E. Coli Asparaginase was administered at 6:00 PM without any reaction—we are thankful for God’s shielding. Remember, Nicholas was heavily pre-medicated and he was hoping to be asleep when it would be administered. So, part of his negotiating when the shot would happen, naturally included questions by him about “why can’t you let me go back to sleep first?” and “why do I have to take this medicine?”

The nurses were very patient as Nicholas prepared himself for the shot and when he was counting to three, which at that point he would be ready for the shot, whenever dad or one of the nurses would move to get ready, Nicholas would notice the movement and start counting over. After one, two, and being ready to say three, he would say “thr” “thr” and then said to everyone “I’ll say it.” After the shot mom closely held him and hummed a tune she would hum when we had to give him G-CSF shots in his arm, sometimes 5 nights in a row before the BMT. He then slept un-eventful for about two hours—this was a blessing.

These shots will probably be administered two times per week, for three weeks. Well, at least he will get plenty of negotiating practice.

B) After mom gives Nicholas a shower, the routine is for mom to change his Broviac dressing (dressing covering the central line going into his chest), dad to change the bedding, and for dad to clean & dry the shower/bath tub. Well, tonight there was an inadvertent change. While dad was cleaning the shower, several nurses came rushing into the room—dad inadvertently pulled the shower/bath tub emergency cord so the nurses quickly responded. They were surprised and dad was surprised as dad turned thinking they were all just coming to visit Nicholas.

***UPDATE #1***

EARLY UPDATE—ADDITIONAL CHEMOTHERAPY STARTING TODAY VERSUS NEXT WEEK

NOTE: Because this is an early update for today, please refer to yesterday’s journal for those details.

TODAY: The Daunorubicin and E. Coli Asparaginase are now planned for today. The staff is fully aware of the reaction Nicholas had in November 2004 to the PEG Asparaginase so in addition to being pre-medicated, equipment and staff will be on hand and closely monitoring Nicholas’ vitals and overall condition with administration of the E. Coli Asparaginase.

PRAYING: We need God’s continued “shielding” of Nicholas and PRAY that he does not have a reaction to the E. Coli Asparaginase. ALSO, this medicine is administered by an intra-muscular shot into Nicholas' thigh muscle (last time it was shot into both thighs, this time one thigh). It is so painful to prepare for and see happening. We will hold, love, and comfort Nicholas.

NICHOLAS: Nicholas looks great, really. Great Spirit, great interaction with the staff and great is the staff’s interaction with Nicholas. He is active and having fun—we want to feed joy into Nicholas every moment!

September 23, 2005 Blood Counts:
WBC: 6.7
HGB: 12.6
PLTs: 29 (Transfusions may happen if they drop further, down to 20 or below)
ANC: 1,541

BLASTS: 56 percent

Lactic Dehydrogenase (LDH): 2,043. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

Cyclosporine level: 162 early this morning, so low and out of range after just one missed dose (last night). Dropped from yesterday being high and out of range at 338.

 


Thursday, September 22, 2005 10:53 PM CDT

Day 307 since Nicholas’ original leukemia diagnosis

Day plus167 since the BMT

Day 11 of the relapse—and gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!

ANOTHER DAY OF SAD NEWS
Results of yesterday’s lumbar puncture shows that there is leukemia in Nicholas’ central nervous system (CNS, spinal fluid), as well as in his bone marrow. This means that medically Nicholas will need to undergo cranial and spinal radiation after the current chemotherapy regimen being administered/developed. We have been blessed, yes blessed, that Nicholas’ joy has not been taken away. In previous journal entries we talked about God’s “shielding” of Nicholas from harm during the earlier chemotherapy, fractionated-total-body radiation the week before the BMT, during the BMT, etc. And we ask for our loving God’s continued “shielding” of Nicholas. We are reminded…”The joy that none can take away is mine, I walk with God today.”

IMMEDIATE ACTION: Starting next Wednesday (September 28, 2005) Nicholas will go back to the operating room for a lumbar puncture with three medicines injected into his spinal fluid: IT Methotrexate, ARA-C, and a steroid. This will take place once per week over the next 4 to 5 weeks. It is projected that it will take two lumbar punctures (two weeks) to eliminate the leukemia in the CNS.

THEN WHAT: In two weeks Nicholas will have another bone marrow aspirate and spinal tap to check progress.

CONTINUED CHEMOTHERAPY
Remember the Asparaginase and Daunorubicin we talked about yesterday, this coming Monday Nicholas will receive the Asparaginase and next Wednesday he will receive the Daunorubicin. Through the collaboration of doctors within LPCH, CHO, and others the best medical option for Nicholas is being developed.

NICHOLAS
Believe it, he had a fun day all in his room. And he had a beautiful nap, at least to mom & dad it was beautiful as we watched him sleep while he was cuddling a teddy bear and holding a dollar in his hand. (Over the last couple of months he has gained an affinity for money). He looks to find ways to earn more, and we have used his affinity to help teach him lessons such as math as well as the value of things.

Nicholas had another special visit from a clown that he met while at the RMH, and mom & dad along with Nicholas had a special visit from dad’s top executive/friend from work.

September 22, 2005 Blood Counts:
WBC: 15.7
HGB: 12.0
PLTs: 58
ANC: 2,198

BLASTS: 76 percent

LACTIC DEHYDROGENASE (LDH): 2,213. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

CYCLOSPORINE LEVEL: 338, high and out of range (Tonight’s and tomorrow morning's doses will not be administered)

 


Wednesday, September 21, 2005 11:36 PM CDT

Day plus166 since the BMT

Day 306 since Nicholas’ original leukemia diagnosis

And sadly now it is day 10 of the relapse--and glad to know through God that we are on the path of healing and cure!

FIRST DAY OF CHEMOTHERAPY WITH THE RELAPSE
But first, here is what Nicholas was doing in the Exam room before any of today's procedures: He was "humming," humming a song that he had just created while drawing pots of gold under a rainbow. Nicholas' humming was music to mom & dad's hearts and seemingly the humming generated words of love and joy that coated our hearts with joy.

In the operating room, Nicholas received his first chemotherapy with the relapse, in the form of IT Methotrexate in the spinal fluid during another bone marrow aspirate. Normally, Nicholas wakes up very quickly in the recovery room; however, today mom & dad had to wake him up about 55 minutes later.

Speaking of music (so to speak, because the following was soothing to our hearts), Nicholas was greeted in his hospital room by several staff members from the hospital all night long, including physical therapist and a clown who frequents the RMH as well as LPCH. It was amazing to witness the parade of doctors, nurse practitioners, nurses, nurse assistants, and so on who came in to see Nicholas again. And it was a wonderful feeling hearing that many of them have been staying in touch with Nicholas' journey through this CaringBridge website.

Tonight at 9:00 he received a second chemotherapy medicine, Vincristine. And after we have been tapering Nicholas down on the Prednisone (remember, it helping to manage the GVHD over the last several months), tonight as part of the medicines to get Nicholas back into remission, it was administered at a high dose that will continue for about a month.

A fourth medicine, PEG Asparaginase (the one that he had a bad respiratory reaction to in November 2004) is being considered because it is expected to be a significant help toward remission. After the first of three planned doses when Nicholas began treatment in November, we stopped giving this to Nicholas. Our LPCH and CHO doctors have discussed this and with other research feel that with pre-medication Nicholas will be fine receiving this medicine. This is still being considered along with conversations with St. Jude who may have a similar medicine called Erwinia that was made in England and stopped being produced because of the availability of the PEG Asparaginase. The Erwinia, with like benefits was helpful to those patients who had a reaction to the PEG.

A fifth medicine, Daunorubicin, is another one considered. However, because of its high cardio-toxicity we are holding off on it right now.

FIRST STEP IS GETTING NICHOLAS INTO REMISSION
While getting Nicholas into remission is probably obvious to all, based on Nicholas' situation (like recently receiving the BMT) this by itself is a very, very, very serious challenge. Although we are working on next steps such as keeping him in remission, and some type of bone marrow transplant, the reality of the challenge hurts so much in understanding that "it" is truly a very, very, very difficult task for Nicholas to overcome.

The success of whatever type of transplant is not projected to be high-it will be a very high risk if we can get to the step of a transplant. AND WE KNOW THAT GOD IS THE ORCHESTRATOR OF NICHOLAS'LIFE and through God this relapse situation is in His hands. God has the world, in many respects, watching and we believe that He has just placed Nicholas' situation on an even higher platform for His work to be witnessed. And the glory to be His. Because we believe in Jesus' name that Nicholas is cured. Oh Father, it hurts so bad to see and hear Nicholas going through this journey. And Father, we are grateful that you are a loving God holding Nicholas in your hands and helping mom & dad to understand as we witness your love.

SNAP-SHOT OF SOME LAB WORK
WBC: It is now high at 19.2. It was 88 at original diagnosis on November 19, 2004. However, it has been going up since the relapse.

LDH: Remember, this is what raised a concern that led to revealing that Nicholas was relapsing. It is now at 2,364 and the target range is below 300 or below 500. This is a liver marker revealing cell turnover and tumor activity.

Cyclosporine: In range at 299

Blasts: Increased to 83 percent. Now that we began chemotherapy we are PRAYING to get Nicholas into remission and the Blasts to go down to 0.

NICHOLAS
Nicholas is truly our sunshine and using a word a nurse used tonight to describe how so many staff and non-staff members are attracted to him, Nicholas is a "magnet" within our family. He has always brought our family closer together and is our guiding light. He continues to shine so brightly even during the darkest moments of our lives as we reach out, read, and work hard to do the right things for Nicholas on this awful, painful to us, journey that has taken a terrible turn-relapse.

September 21, 2005 Blood Counts:
WBC: 19.2
HGB: 11.0
PLTs: 54
ANC: 1,920

BLASTS: 83 percent

Cyclosporine level: 299

 


Tuesday, September 20, 2005 11:59 PM CDT

Day plus165 since the BMT

Day 305 since Nicholas’ original leukemia diagnosis

And sadly now it is day 9 of the relapse

It is so hard to realize what Nicholas is experiencing, what mom and dad are experiencing, what our other boys are experiencing, as Nicholas continues this journey and what we’re about to experience beginning tomorrow. Nicholas has gone through so much drama, trauma, and experiences for a lifetime. We pray that we are directed to make the right decisions tomorrow as we begin chemotherapy. We truly feel that Nicholas is healed through God and with everything within us want to see and hear that he is healed and cured.

Nicholas was thankful to have a full day with KJ, who came to visit again: video games, mock Power Ranger fighting, talking and various other activities. We are blessed that Nicholas’ joy, enthusiasm and fun nature is so vibrant.

Nicholas, mom and dad settled into the RMH late tonight preparing for early morning labs at LPCH and admission.

September 20, 2005 Blood Counts:
WBC: N/A
HGB: N/A
PLTs: N/A
ANC: N/A

BLASTS: Will update with Wednesday’s labs

 


Monday, September 19, 2005 11:28 PM CDT

Day plus164 since the BMT

Day 304 since Nicholas’ original leukemia diagnosis

And sadly now it is day 8 of the relapse

RESULTS OF CONSULTATION AT STANFORD-LPCH
Discussing the “worst” prognosis, this is the “worst” situation a parent may have to confront. It’s an awful, critically serious situation that devastates your heart and mind. Loving Nicholas, leaning on our loving God, we are fighting every moment and anything in the way of Nicholas’ cure.

Our doctors at Children’s Hospital Oakland and Stanford-Lucile Packard Children’s Hospital have showed their collaborative support. They are making the challenge of originally being treated at one hospital (CHO) and transplanted at another (LPCH), seem so transparent while we are determining next steps to get Nicholas into remission. However, GVHD associated with the BMT will be a factor to manage, as chemotherapy treatment will begin to get Nicholas into remission. So, we are having LPCH’s oncologist lead this phase of chemotherapy treatment and partner with our LPCH BMT doctor—in a side-by-side like approach. Nicholas and mom & dad know this doctor as we engaged with him during post-BMT "rounds" by the hospital staff. While this perhaps could be managed with two hospitals, every nuance experience with Nicholas since the BMT and every moment moving forward will be critical with the element of “time” being a significant factor.

TWO STEPS: 1) Make the leukemia go away—achieving remission, and 2) A second BMT of some sort—there are a few opinions out there and this will have to be narrowed to the one that the team of doctors leveraging other sources assess as the best option to cure Nicholas.

QUICK UPDATES
BLASTS: Today’s lab work revealed that Blasts are now 76 percent, up from 31 percent yesterday.

CHIMERISM: Remember the DNA chimerism test that monitors the success of the BMT by determining the relative percentage of Nicholas’ and the donor’s T-cells and Neutrophils in the marrow. The goal over time is 100 percent of the donor cells.
1) The first one on May 11 revealed that overall 95 percent were donor cells—great start.
2) In June overall it was 98 percent.
3) In July the T-cells dropped to 90 percent.
4) Mid-July the test was performed again revealing that the T-cells came back up, to 96 percent, and overall 98-99 percent.
5) BAD NEWS: Now the overall percentage has plummeted to 5 percent donor cells.

WHAT’S NEXT: RONALD MCDONALD HOUSE AND ADMISSION INTO LPCH (CRITICAL TOXICITY ISSUES BECAUSE OF THE BMT)
Remember, we have reduced the Prednisone to trigger GVL. One of the critical issues to manage will be the toxicity levels of chemotherapy because the BMT effect on Nicholas. And beginning Wednesday, Nicholas will start the chemotherapy phase of getting him into remission. Tomorrow night Nicholas, mom & dad will be at the RMH. Wednesday morning we will be at LPCH for lab work and some ongoing treatment before being admitted into LPCH for chemotherapy treatment. We are expecting to be in the hospital through Friday. And we recognize this could change based on the response Nicholas’ body has to the treatment.

We PRAY & PRAY for God’s guiding of the doctors minds and hands and clarity of mind for mom & dad to make the right decisions. We continually express our love for God, and recognize that His will is needed for the miracle of Nicholas’ continued life.

PREPARING FOR THE STEP AFTER NEXT
We PRAY that Nicholas quickly (or just gets) into remission. Then the second bone marrow transplant will be needed. Based on the relapse and the apparent aggressiveness of the leukemia a different approach to the transplant will be taken. Our LPCH BMT doctor is connecting with St. Jude Hospital in Tennessee and the University of Minnesota who both specialize in the different approach that will be needed in an attempt to cure Nicholas. There is so much risk with the approaches that may be taken, AND the risk apparently is the best medical approach to take to cure Nicholas.

Nicholas has an awful challenge in front of him, and the risks of the chemotherapy treatment as well as the different approach for a second bone marrow transplant has us so afraid and constantly praying and crying for our loving God’s guidance, shielding, protection, and cure!

Connecting with St. Jude and the University of Minnesota paves the way for Nicholas to go to one of these hospitals after we get him into remission and he is medically able to withstand a second transplant.

We ask that we all keep demanding and fighting to find a cure for these life threatening diseases, for all the kids who are afflicted with them.

September 19, 2005 Blood Counts:
WBC: 15.7
HGB: 12.0
PLTs: 58
ANC: 2,198

BLASTS: 76 percent

 


Sunday, September 18, 2005 11:38 PM CDT

Day plus163 since the BMT

Day 303 since Nicholas’ original leukemia diagnosis

And sadly now it is day 7 of the relapse

ANOTHER NICE DAY; HOWEVER, TONIGHT NICHOLAS' STOMACH WAS HURTING
Nice relaxing day with family and friends who made long drives to visit, nice phone calls, and nice guestbook entries—thank you, everyone for your hearts and prayers.

Late tonight, Nicholas’ stomach began to hurt him. We recognize that the planned reduction of the Prednisone can be triggering some GVHD and PRAY for God’s continued shielding of Nicholas and directing of this journey for healing. (Please refer to the September 16 journal.)

IT’S SUNDAY AND NICHOLAS WAS DOING SCHOOLWORK
Remember, just yesterday Nicholas’ home-school teacher was setting up at our home to begin kindergarten instruction for him. And today, mom got Nicholas started on schoolwork—he worked on rhymes. Nicholas was enjoying it and got to the point where mom left him alone with his work and he just kept on going and going.

TOMORROW (MONDAY)
We will be at Stanford-LPCH for consultations about the current reduction of immunosuppressive medicines and GVHD and praying the balance becomes just right for GVL. Also, the discussion—and we pray—to determine a plan to begin administering the new medicine, Clofarabine, to get Nicholas into remission. (Please refer to the September 16 journal.)

Mom & dad are anxious for the discussions, and we are nervous about the discussions. We PRAY for God’s imparting of wisdom to the doctors and for our clear minds to make the right decisions.

September 18, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: Current results will be available tomorrow (Monday)

 


Sunday, September 17, 2005 11:59 PM CDT

Day plus162 since the BMT

Day 302 since Nicholas’ original leukemia diagnosis

And sadly now it is day 6 of the relapse

SNAP-SHOT OF A NICE DAY IN THE MIDST OF THIS AWFUL TIME WITH THE RELAPSE

1) KJ visited and spent several hours with Nicholas. They played video games, indoor basketball, outdoor basketball—really, and football with three of Nicholas’ cousins (Stefan, Natalia, and Rene). What a beautiful sight to see KJ and Nicholas (recent transplant patients) so active. Of course, these activities were very tame because of their Broviacs as well as Nicholas’ Platelets being so low. However, these guys were “playing and having fun.”

2) Cousin Charles drove up from the San Diego area and joined in on the fun with his sister Rene and his two kids Stefan and Natalia. Seeing Nicholas so vibrant and active, Stefan said to his dad, “Dad, I thought Nicholas was sick?” What a blessing to have Nicholas be able to be “playing and having fun.” And what a lesson through God for others to see Nicholas be able to be “playing and having fun.”

3) Theresa, Kaeli’s mom, drove up to visit Nicholas and mom. We are blessed again to have such a warm, loving friendship that is truly from the heart—thank you Theresa. (You do remember Kaeli, right? Kaeli is another BMT patient we met a LPCH and had lots of fun with at the RMH.)

4) Nicholas’ home-school teacher came by today getting set up. We are focused on Nicholas’ cure and focused on him continuing to thrive.

5) The blessings are pouring in from the guestbook entries and those powerful thoughts and prayers from all of you, as well as through another wonderful meal cooked for us in our home—Soha, we appreciate you and your family so much. And Reda, you and your company (thank you Louie) demonstrated such love for Nicholas through creating the code for Nicholas’ Song of Love to be playing in the background of this website.

6) NO PAIN NOTICED TODAY: Mom & dad did not notice Nicholas going through any pain today—amazing!

7) STOPPING TO REST PERIODICALLY: Nicholas was tired periodically throughout the day and he was quick to stop and rest. Sometimes, curling up on his bean-bag in his room for a quick nap; sitting on a bench outside; or taking turns curling up with mom, dad, one of his brothers, and Theresa this evening while watching a movie.

8) A DRIVE TO THE BAY IS PLANNED FOR TOMORROW: Nicholas has asked to go by a favorite spot on the Bay to watch the waves roll in and have a picnic—all in the back of the Expedition with the third seat out. These times have really become one of his favorites. Nicholas especially likes it when we do it in the evening so it gets dark and like a campout. At these times, he likes reading books under a flashlight.

NOTE: Click on View Photos to see pictures from today, and the third album under Links below for pictures while in the hospital the last few days and other updated pictures (at the end of the album).

September 17, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: Blood draw tomorrow morning (Sunday)

 


Friday, September 16, 2005 11:59 PM CDT

Day plus161 since the BMT

Day 301 since Nicholas' original leukemia diagnosis

And sadly now it is Day 5 of the relapse

DISCHARGED FROM CHO
Nicholas was discharged this afternoon from CHO and the good news is that we enjoyed another homecoming—what a warm, comforting feeling.

HERE IS THE DEVELOPING PLAN
1) WHAT: Following the withholding of last night’s Prednisone, beginning today we are only administering 3mg of Prednisone one time per day versus the 6mg twice per day that was being administered. PURPOSE: Again, we are now TRYING to generate GVHD and the GVL effect to fight the cancer in Nicholas’ bone marrow.

2) WHAT: Monday morning we are meeting with Nicholas’ BMT doctor and the other LPCH doctor who has used the new Clofarabine medicine stated in yesterday’s journal. PURPOSE: Further discuss the reducing of the immunosuppressive medicines (like the Prednisone stated), the Clofarabine medicine’s use on Nicholas to get him into remission, and along with our CHO doctor discuss steps 3 and 4 below.

3) WHAT: Explore and determine the best option around to keep Nicholas in remission. PURPOSE: To put Nicholas into a position to be cured.

4) WHAT: Explore and determine the best option around toward curing Nicholas. PURPOSE: To cure Nicholas.

OTHER EFFORTS TO FIND A CURE
Once again, we are so fortunate for the care and love received from friends (as well as our families). In this case, mom met a patient’s mother while at LPCH who with her son has been through some very, very trying times. They have been pushing and driving for a cure of their own, and this morning mom received a telephone call from Tennessee and it was the boy’s mother. She had a lot of extremely helpful information for us. Her son has successfully received the Clofarabine medicine and had other positive information about its use.

She also shared transportation information that would be extremely helpful if there was a need for us to quickly get Nicholas to another place for treatment based on the nature of this cancer. NOTE: We are very thankful for the way our CHO and LPCH doctors have been collaborating with each other and other doctors/hospitals!

CARING AND WATCHING OVER NICHOLAS
Along with administering and tracking medicines, we are pushing Nicholas to drink significantly more than normal to push out any breakdown of cancer cells as the GVHD/GVL effects come into play. Tracking his liquid intake is important because if he is not drinking along with urinating enough, he will have to go on IV fluids.

And we are being so watchful for GVHD indicators.

NICHOLAS HAD A GOOD DAY
Being home, of course, made today a good day. Nicholas enjoyed ice cream from an ice cream truck, talking with our neighbors, talking on the phone with K.J. (he is planning to come see Nicholas tomorrow—Saturday), playing with Joey who came to visit, playing with his brothers, receiving a homemade dinner that was cooked by our family friend Cyndi—at our home, and cuddling up through out the night.

September 16, 2005 Blood Counts:
WBC: 8.7
HGB: 10.9
PLTs: 46
ANC: 1,305

BLAST INFORMATION
September 16, 2005 BLASTS: 43percent

September 14, 2005 BLASTS: 29percent

Blast: An immature cell. In leukemia, blasts refer to malignant white blood cells, which are characteristic of the type of leukemia.

1) Nicholas relapsed on September 12, 2005 wherein the peripheral blood sample drawn revealed a lot of blasts (on September 14 and 16 bone marrow aspirates were performed and the resulting percentages of blasts determined)

2) Reference: When Nicholas was diagnosed with leukemia on November 19, 2004, he had 69 percent blasts followed by the following percentages to November 29, 2004: 71, 77, 76, 36, 12, 5, 0. The first day of initial Induction Treatment began on November 22, 2004 and he was in remission on the eighth day of treatment.

 


Thursday, September 15, 2005 11:46 PM CDT

Day plus160

Day 300 since Nicholas' original leukemia diagnosis

And sadly now it is Day 4 of the relapse

NICHOLAS
Last night Nicholas' right hip was sore and today both of his legs have been bothering him. It appears to be the effect of the new leukemia. You probably have some idea how Nicholas responded to us asking about his legs, after we noticed that he was walking "gingerly" on both of them. Nicholas said, "I can still walk. See, they don't hurt me that much." He is so amazing, day-after-day and after all the old and new things associated with this awful disease he still wants us to not worry about him. Yes, he is amazing and we truly believe he is on this earth sharing love as only a loving child could show and do.

Today in the playroom at CHO, a patient undergoing chemotherapy was vomitting. Nicholas turned to the boy and used words and gestures to try to comfort & assure the boy that he would be okay.

And this evening when walking by another patient's room, Nicholas heard the little boy crying and pulled mom aside. Nicholas whispered, "Mom, can I let Dillon use one of my Teddy-Bears to help him not cry. Because he is crying in there." Nicholas then got a Teddy-Bear and knowing that he shouldn't go into Dillon's room stood by the door. The doctor then approached Nicholas and Nicholas said, "Here Dillon, you can have this" and the doctor delivered it to Dillon. And Dillon stopped crying.

NOW WHAT
Our CHO doctor (original treatment) has conferred with Stanford-LPCH doctor (BMT) and other doctors/hospitals and the common theme is:

1) Intense chemotherapy is not a viable option due to the immaturity of Nicholas' marrow (the BMT was just 160 days ago)

2) It is way too early to do another BMT based on the toxicity of the pre-BMT regimen and everything that Nicholas' body has been going through as a result of the BMT being just 160 days ago

3) Withhold some of the immunosuppressive medicines (Cyclosporine, Prednisone, and Cellcept) to trigger GVHD that also has a GVL effect, which means graft versus leukemia effect, meaning the new marrow would see any leukemia in the body as foreign and fight it. The down part of this approach is that Nicholas will have some GVHD (remember the gut, skin, and liver issues), and we PRAY that the GVHD would be just the "right' amount to get the job done. However, the GVL alone will not be enough to get rid of the leukemia so some form of chemotherapy will have to be implemented. Also, remember the "shielding" through God that we have talked about. Here too, we PRAY that Nicholas will be shielded during this process. There have been a lot of side effects expected, and a lot of them Nicholas did not experience or not to the degree expected-shielding does happen!

The third theme is the first intervention we are expecting to take, followed by some form of chemotherapy. Tomorrow we will be going to LPCH to consult with the doctors in preparation for overall treatment decisions with our CHO doctors.

WHAT IS HAPPENING TONIGHT
Based on the third theme above, tonight we withheld the Prednisone dose. As a result, the doctors want to ensure an optimum intake of fluid level as well as output of fluid. This is important to manage any breakdown of leukemia cells-although it is not expected to start happening this fast.

WHAT CHEMOTHERAPY
Remember, yesterday we talked about a new leukemia chemotherapy medicine that, coincidently, a doctor from St. Jude Hospital gave a talk about early this week in the Bay Area. Following up on this we learned that one of the doctors at LPCH previously practiced at St. Jude and in fact he has recently used the new medicine called Clofarabine.

Our CHO doctor and the LPCH doctor who has used Clofarabine will collaborate on this possibility; and we will meet with this LPCH doctor either tomorrow (Friday) or on Monday.

WHAT WE NEED
We need a miracle! We need our loving God to heal Nicholas, to heal Nicholas and cure him from this awful disease. We need Nicholas to not have to experience any more side effects or pain associated with the side effects. We do not want to see Nicholas go through any more trauma. All we need is God and your prayers.

September 15, 2005 Blood Counts
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

September 14, 2005 Blood Counts
WBC: 13.3
HGB: 11.8
PLTs: 66
ANC: 2,527*

September 14, 2005 BLASTS: 29percent

Blast: An immature cell. In leukemia, blasts refer to malignant white blood cells, which are characteristic of the type of leukemia.

1) Nicholas relapsed on September 12, 2005 wherein the peripheral blood sample drawn revealed a lot of blasts (on September 14 and 16 bone marrow aspirates were performed and the resulting percentages of blasts determined)

2) Reference: When Nicholas was diagnosed with leukemia on November 19, 2004, he had 69 percent blasts followed by the following percentages to November 29, 2004: 71, 77, 76, 36, 12, 5, 0. The first day of initial Induction Treatment began on November 22, 2004 and he was in remission on the eighth day of treatment.

 


Wednesday, September 14, 2005 2:37 PM CDT

Day plus159 (Day 299 since Nicholas' leukemia diagnosis)

UPDATE #2

FIRST PHASE OF TODAY'S BONE MARROW ASPIRATE RESULTS-NOT GOOD
Today's marrow analysis looks very similar to yesterday's peripheral results-Nicholas has relapsed meaning cancer is back. This is very, very serious because the relapse is so soon after the April 7, 2005 bone marrow transplant. It appears to be a very aggressive type of cancer. Thankfully, it is not as far as long as it could have been; 50-percent of the cells are cancerous meaning, on the positive side, Nicholas has "reserves" to combat/guard against infection and the effects of chemotherapy. Another positive way to look at this is Nicholas has a lot of good cells.

MORE CHEMOTHERAPY
Yes, this means we will need to go back to chemotherapy. However, we will have a battle to fight on this issue because they have never seen such a dramatic change in the appearance of the leukemia. (It does not appear to look like the ALL leukemia diagnosed on November 19, 2004.) And some of the protocols that could be considered would not fit Nicholas because the relapse was so soon after the BMT.

FIRST STEP
We need to get Nicholas back into remission. Today, Nicholas will begin to undergo a lot of baseline tests, including an echo-cardiogram to understand the condition of the heart because one of the medicines that may be used can affect the heart.

PREPARATION FOR THE FIRST STEP
Our CHO and Stanford-LPCH doctors are collaborating to jointly approach the process to get Nicholas back into remission. Over the next two days our CHO doctor will be putting information together to secure opinions from other doctors/hospitals, as well, on the approach to take because of the relapse so soon and aggressiveness of the cancer.

Just last night, a doctor from St. Jude held a conference in the Bay Area regarding a new drug that, perhaps, may be something that could make a difference for Nicholas. Also, because Nicholas responded so well to the first chemotherapy treatment plan, it will be considered. Remember, originally Nicholas went into remission within 8 days of being diagnosed.

Also, there is lead transplant doctor in Vancouver that we will reach out to for consultation.

So, the preparation for the first step requires a lot of collaboration, information sharing, and of course the pre-first step is turning to our loving God. A miracle can certainly happen!

NEXT STEPS
By this weekend the doctors need to be prepared with input from other doctors/hospitals regarding a protocol to follow or a process to follow. So by this weekend a decision needs to be made to get Nicholas into remission, and that intervention needs to immediately follow.

YOUR CONTINUED PRAYERS AND VOICES
Thank you for all your prayers and voices directing love toward Nicholas. Your prayers and voices can and will be heard-and love will flow from you to Nicholas.

UPDATE #1

BONE MARROW
The bone marrow aspirate and biopsy went smoothly. The doctor was able to pull out a lot of marrow and large sample for the biopsy. Also, they were able to use very small band-aids so we are thinking that Nicholas should not be in the type of pain he experienced last Friday and over the weekend.

ADMITTED INTO CHO
Admitted into CHO at 12:35 p.m., room number 5309. Nicholas did not want to be admitted. This was the first time that he actually "cried" about being admitted (although it is certainly okay to cry about being admitted at any time). Once we got to his room, saw familiar nurses and the play room, he was okay. Just okay, as it is not home.

NOW WHAT
We will be talking with the doctors shortly regarding the immediate plan, recognizing that the results from the bone marrow aspirate will not be known until tomorrow.

Also, marrow sample will be used for Cytogenetics (remember, these results mid-December 2004 revealed Hypodiploid and was the reason for the BMT, and a sample is being sent for Chimerism (remember, determines the percentage of donor cells at work).

WE ARE PRAYING FOR HEALING AND A CURE
Father, in the Name of Jesus, we confess Your Word concerning healing. As we do this, we believe and say that Your Word will not return to You void, however, will accomplish what it says it will. Therefore, we believe, in the Name of Jesus, that Nicholas Colby Gilbert is healed according to 1 Peter 2:24.

We confess the Word of God abides in Nicholas Colby Gilbert and delivers to him perfect soundness of mind and wholeness in his nature in his immortal spirt even to the joints and marrow of his bones. Your Word is medication and life to his flesh, for the law of the Spirit of life operates in him.

 


Tuesday, September 13, 2005 4:22 PM CDT

Day plus158

NOTE: SONG OF LOVE
If your speakers were on when you just opened Nicholas’ CaringBridge site, you are listening to Nicholas’ song of love in the background. Please refer to the September 7, 2005 journal for the words to the song and information about the caring organization/people who created Nicholas’ song. Profile-type information on Nicholas was provided enabling Nicholas’ song of love to be created.

QUICK UPDATE:

RESULTS OF TODAY’S LAB WORK
The peripheral blood work today at CHO reveals blasts (malignant cells) like Stanford saw yesterday. The blasts do not appear to be like those when Nicholas was first diagnosed—something is going on. At this time the doctors do not know what to make of it, and said to be prepared for the worst.

NEXT STEPS
Tomorrow morning Nicholas will go to the operating room for another bone marrow aspirate and biopsy of the marrow. We were told to be ready for Nicholas to be admitted into CHO tomorrow after the procedures. It will then be at least 24 hours for initial bone marrow aspirate results.

NICHOLAS: HIS JOY, HIS LOVE, HIS PASSION
Nicholas’ approach to all of "this stuff" has been amazing—here we are using the “amazing” word again—truly amazing. The joy he brings to our hearts through being incredibly aware and the thoughtful things that he says. The love he continually shows for others (he called K.J.—you remember K.J., Nicholas’ RMH neighbor—yesterday, twice today, and at the close of those conversations Nicholas said, “I love you” which is typical in his relationship with others. Others that are younger than Nicholas, about the same age, and older.

The passion for displaying joy and loving everything around him touches the hearts of family, friends, and new acquaintances. We are so fortunate to be blessed with Nicholas, and so thankful our loving God is in operation. His omnipotence, omniscience, and omnipresence are at work and we call out to God in thanks. And we ask for understanding, and we ask for Nicholas to continually be with us in full strength—healed from disease and able to continually express all that God asks.

September 13, 2005 Blood Counts:
WBC: 9.8 (up from yesterday’s 5.5)
HGB: 11.6
PLTs: 50
ANC: 1,156

 


Monday, September 12, 2005 5:44 PM CDT

Day plus157 (Day 297 since Nicholas’ leukemia diagnosis)

UPDATE #2, at 9:55 PM CDT:
LAB WORK AT CHO AND PREPARED FOR NICHOLAS TO BE ADMITTED INTO CHO
Tomorrow (Tuesday) morning we will be at CHO for peripheral blood draw to analyze for blasts, and full chemical panel lab work. We were asked to be ready for Nicholas to be admitted into CHO following this blood work. And another bone marrow aspirate will be the next step. After that, we do not yet know what is next.

Friday’s bone marrow aspirate result is “reading out as not leukemia;” however, we were given two possible explanations:
1) …was in the process of a relapse and over the weekend it picked up and spilled over into the peripheral blood
2) “Focal” relapse, meaning that although the bone marrow aspirate sample taken was “reading out as not leukemia,” leukemia is present somewhere in the marrow. Therefore, another bone marrow aspirate will be performed and samples drawn from multiple sites.

MIRACLES DO HAPPEN AND WE PRAY THAT NICHOLAS’ AMAZING WORK CAN CONTINUALLY TOUCH LIVES
And we PRAY that Nicholas is cured, healed of any type of life-threatening disease because he truly blesses lives with his God-given love and touch.

UPDATE #1:
WE ARE SO FRIGHTENED, SCARED

OH FATHER, WE HAVE ALWAYS NEEDED YOU AND WE NEED YOU, WE NEED YOU NOW!

EVERYONE, PLEASE, PLEASE POWERFULLY PRAY WITH US NOW AND STRONGLY—THE DOCTORS SEE BLASTS IN NICHOLAS’ BLOOD WORK
We just returned from Stanford and received a call that the peripheral blood work (from his central line in Nicholas’ chest, Broviac) drawn this morning reveals blasts—the leukemia is coming back.

We have not received Friday’s bone marrow aspirate results from Children’s Hospital Oakland yet, and our Stanford doctors have talked with them. Our Children’s Hospital Oakland doctor should be calling any moment, and we have so many questions.

PLEASE, PLEASE PRAY WITH US and loudly cry out for help for Nicholas. Nicholas has done everything right, he is amazing, he is loving, he is so caring, and he is everything to everybody! We need our Father God, and we need your prayers.

September 12, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Sunday, September 11, 2005 11:56 PM CDT

Day plus156

APPOINTMENT TOMORROW @ STANFORD-LUCILE PACKARD CHILDREN’S HOSPITAL
We are anxious to receive the final results of Friday’s bone marrow aspirate, discuss the high LDH numbers (please refer to the September 8 journal), discuss the very low Platelets level, and an overall conversation about next steps. And draw labs to find out current levels. These things are planned to take place tomorrow (Monday).

And we are, once again, so grateful and give thanks to God for the way Nicholas navigates all of the things in his path to a cure. And grateful for your continued prayers—I remember the very tough times over the last 296 days, and your prayers/voices clearly being heard and answered! Nicholas’ joy is a testament.

FUN DAY, BACK NOT AS SORE ALTHOUGH PAIN STILL LIMITS MOVEMENT
What a fun day: playing outside, football, baseball, and with a foam-ring device that shoot the rings horizontal or vertical up to 30 feet. These rings are about 2 inches in diameter and we made up lots of games, for lots of fun. Nicholas especially enjoyed one game where he was like a combination super hero/matrix character contorting his body to avoid the foam rings from hitting him.

Wow, although Barry Bonds is returning to action tomorrow, Nicholas was in full swing—literally—today and hitting some homeruns. And football today, well we watched about 15 minutes on TV and enjoyed ourselves hiking the ball, running routes (well, walking routes for Nicholas), and tossing the ball. And to top this fun day off, the twin girls from next door came over and the three of them had a lot of indoor fun together.

BECAUSE OF HIS LOW PLATELETS ON FRIDAY, we were very cautious with his activities. Limiting him so that he was not jumping, running, or bumping…

September 11, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, September 10, 2005 11:59 PM CDT

Day plus155 (Day 295 since Nicholas’ leukemia diagnosis)

GOOD DAY, HOWEVER, NICHOLAS’ BACK IS SORE FROM THE BONE MARROW ASPIRATE
Nicholas had a good day, even though he was slowed by not wanting to move too much because his back was sore from the bone marrow aspirate. The previous bone marrow aspirates did not slow him up at all, as after those he was up and about, running and playing. However, today, the area of his back where the aspirate was performed was still bleeding slightly because of the very, very low Platelets level.

Nicholas did help, somewhat, dad wash the car and when not helping he was sitting down outside watching and talking with dad and neighbors. (First time we washed the car together in over 6 months—we enjoy the fun of playing with the water as we wash the cars.)

Calling grandma Charlotte and grandpa Floyd was fun for Nicholas as he was guessing what they were doing, receiving grandma Eva’s call was a treat for Nicholas to hear her wishes for him, always talking with aunt Peggy is fast paced because Nicholas rapidly talks about the things that he likes, and calling his former Ronald McDonald House mate, K.J., was definitely a hi-light for Nicholas this morning. Nicholas really enjoys staying in touch with K.J.

Mom and Nicholas spent time together on the computer and this too was a hi-light for him. However, every moment with mom is truly a hi-light for Nicholas—mom is Nicholas’ warm, comforting, and beautiful star that brighten his world!

Fun at the dining table is always a hi-light for Nicholas with his brothers. The words and expressions Nicholas uses are an amazing combination of what he hears from mom & dad, his brothers, the hospital staff, and of course the other things that he hears, reads, or sees. And it is Nicholas’ awareness and understanding of the use of words that is truly amazing—he hears and applies words and expressions so appropriately and at times surprises us because of the high level of their use.

PRAYING AND PUSHING FOR NICHOLAS’ CURE, AND AN OVERALL CURE FOR THESE LIFE-THREATENING DISEASES
It’s just awful to experience this leukemia disease and the BMT process, in terms of it being a hope for a cure and not an immediate cure. It’s awful constantly having to focus on moment-by-moment care and we are thankful to find ways to be able to focus on these moments. We are, of course, thankful for the hope—praying, giving thanks that Nicholas is God’s perfect son.

And we pray for cures for all of these life-threatening diseases. We keep thinking about the babies and kids afflicted with these diseases that just hit, fall on their lives. It’s so sad to see and experience.

September 10, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, September 9, 2005 6:57 PM CDT

Day plus154

QUICK UPDATE ON TODAY’S UNEXPECTED PROCEDURE (referring to yesterday’s journal)

BONE MARROW ASPIRATE: Final results of the bone marrow aspirate are not in; however, our CHO doctor said it looked good in that it did not present itself as a relapse (leukemia). This provides some comfort right now and on Monday when we are at Stanford-LPCH, our CHO doctor will be talking with our LPCH doctor with the final results (including a discussion on the last bone marrow aspirate performed at LPCH to assess how things were showing up then and how things are showing up now). Thank You, Lord!

The marrow did reveal a lot of red blood cell activity that could be caused by some of the medicines—not indicative of relapse (leukemia).

PLATELETS: During today’s procedure, Nicholas was bleeding more than usual so heavier bandages were used. Lab work was analyzed to re-check his Platelets because of the bleeding. Today’s Platelet level is 45, down from the 58 yesterday, and still very low out of range (target range 150-400).

Our CHO and LPCH doctors talked today about the Platelet issue and tonight we will not be administering the Gancyclovir that could be causing the Platelet drop. And, of course, the Gancyclovir is part of the intervention relative to the CMV that Nicholas had on August 18, 2005—so Gancyclovir is administered to help eliminate the CMV and on the other hand it could be negatively impacting the Platelets (another type of roller coaster effect Nicholas is experiencing).

On Monday a decision will be made as to what to do about the Gancyclovir that currently is being administered 5 times per week.

VITAMIN K & CLOTTING FACTORS: As a quick gut check, our CHO doctor ordered additional blood work to check Nicholas’ vitamin K level and his blood clotting factors to make sure nothing is going on there. We should hear on Monday as well.

We are to watch for any signs of bleeding or bruising cropping up and will need to get to the hospital for further follow up should anything arise prior to our visit at Stanford on Monday.

NICHOLAS: He is simply amazing—the way he is navigating through all of this medical stuff in terms of maintaining high spirits; being aware of what is happening around him and still caring so much about others being happy; loving people, places, and the things that he does while on this roller coaster effect of the leukemia and bone marrow process.

September 9, 2005 Blood Counts:
WBC: 5.1
HGB: 11.0
PLTs: 45
ANC: NA

 


Thursday, September 8, 2005 6:39 PM CDT

Day plus153

VERY EMOTIONAL AND SAD DAY—WRETCHED WORDS STILL PIERCING OUR HEARTS
Today as Nicholas was receiving IVIG (immune booster) and Pentamidine (preventative medicine for a certain type of life-threatening pneumonia that commonly affects immune compromised patients) we heard the calm yet wretched words from our doctor, “I need to tell you something.” Mom & dad both recalled those words back in mid-December 2004 (a month after the leukemia diagnosis) when the results of those words were that Nicholas’ leukemia had a rare chromosome abnormality labeled as Hypodiploidy. And Nicholas’ prognosis was dramatically changed—our best chance for his cure was going straight to a BMT.

Remember, August 18, 2005 was the day Nicholas was admitted into CHO for about 12 hours to receive treatment because we had just learned that he was positive and relative numbers were high for Cytomegalovirus (CMV). Since then Nicholas’ Lactic Dehydrogenase (LDH) numbers have been going up and dramatically high out of range. The LDH is linked to the liver function. The target range is 100-500 and over the last few weeks they have been: 786, 1144, 1058, 1271, 1297. These high LDH numbers coupled with the trending down of Nicholas’ Platelets, which today are down to 58 (target range 150-400), is cause for concern. Our CHO doctors have conferred with our Stanford-LPCH doctors.

Other liver levels have been trending up and out of range, high, as well: SGOT/AST and SGPT/ALT.

WHAT NOW, BONE MARROW ASPIRATE TOMORROW
Nicholas will go to the operating room tomorrow for a bone marrow aspirate so an analysis of the fluid can rule out a relapse. The thought of this is almost too much to bear—please PRAY that this test will indicate that Nicholas is still in remission and that the reason for the high LDH level is due to all the heavy medicines he has been on to treat the CMV.

NICHOLAS ENERGY, SPIRIT, JOY, LOVE…IS STILL AMAZING
As mom was explaining this latest news to our third son, Matt, Nicholas said, “They are making sure the bad blood doesn’t come back.” We know we are blessed; Nicholas is simply amazing! And with his demeanor and some level of understanding about all of this, Nicholas makes the situation easier on one hand, and harder on the other hand because his love and joy is seen everywhere we look. And we know that God’s love is at work and that He is in control—and through Him mom & dad will find strength.

NOTE: NICHOLAS’ SONG OF LOVE
Over the next couple of days we will try to get Nicholas’ Song Of Love operable (please refer to yesterday’s journal for details on this).

September 8, 2005 Blood Counts:
WBC: 7.5
HGB: 11.8
PLTs: 58
ANC: 1,560 (see above *)

 


Wednesday, September 7, 2005 11:44 PM CDT

Day plus152

GOOD DAY—please click on View Photos
Nicholas had a good day and tonight he was entertaining the twins from next door. Please click on View Photos to see them dancing.

DAY HOSPITAL TOMORROW (THURSDAY)
Tomorrow we will be at CHO for treatment relative to the CMV, and discuss the issue regarding Nicholas Platelets that have been trending down and are very, very significantly low, and out of range.

SONG OF LOVE—please listen to this personalized song
A song of love about Nicholas has been created by The Songs of Love Foundation (The medicine of music, www.songsoflove.org), a non-profit organization that creates original personalized songs, free of charge, for children with chronic or life threatening illnesses.

In a few days we should have the song playing in the background of this CaringBridge site.

In the meantime, here it is for you now. Please go to Links below and click on the first link, Nicholas' Song of Love. (Words, music, and vocals by Thomas Jones.)

Here are the words to the song:

I know a boy who cares about others
He's thoughtful and he's kind
He's really into artwork
His painting is so fine

He likes lakes and oceans
And galloping on the beach
He likes snorkeling, dolphins, and swimming
He will spend his time on each

Chris and Tim and Matt are his brothers
Joey and Jessica are his friends
Baby Julie and William and Trenton
And Amanda, K.J. and Neda we'll mention

Nicholas Colby Gilbert
There is only one
How we like to be with him
Playing and having fun

He swings on swings and plays basketball
He likes Peter Pan and Spiderman as well
Video games keep him occupied
As if you couldn't tell

Chris and Tim and Matt are his brothers
Joey and Jessica are his friends
Baby Julie and William And Trenton
And Amanda, K.J., and Neda we'll mention

Nicholas Colby Gilbert
There is only one
How we like to be with him
Playing and having fun

Thanks for listening, and keeping Nicholas in your prayers!

SPECIAL NOTE
Soha and Reda, thank you so much for your time, energy, and Reda for your team helping with the technical aspects toward enabling us to share the song with others.

September 7, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, September 6, 2005 11:23 PM CDT

Day plus151

MEDLEY OF FUN
Nicholas and mom went out an had an incredible walk at a Lafayette park, enjoying the scenery, pigeons on the side of a hill, playing football catch, and tossing a Frisbee. Remember, he is still on Prednisone (steroid, although we have been tapering it down every Thursday since August 18) so you know he had a snack at the park. Well, a snack would be fitting anyway.

PLATELETS ARE STILL DROPPING
Nicholas’ Platelets are now at 60 (please see August 29, 2005 journal for information about this concern).

September 6, 2005 Blood Counts:
WBC: 6.4
HGB: 12.1
PLTs: 60
ANC: NA

Cyclosporine level in range: 306

September 2, 2005
WBC: 5.5
HGB: 11.7
PLTs: 66
ANC: 1,760

Cyclosporine level in range: 248

 


Monday, September 5, 2005 10:31 PM CDT

HOW LONG HAS IT BEEN?
Day plus150 (150 days since the BMT) and Day 290 since Nicholas’ leukemia diagnosis.

METICULOUS AT DRAWING AND COLORING
Well, the transformation from just coloring to meticulously coloring within lines and choosing just the right color gradually occurred over the past several months. Nicholas has always enjoyed artwork—painting, coloring—however, he seemingly has taken a critical eye toward his artwork. Well, he is enjoying it and having fun.

(Please click on View Photos to see a picture of Nicholas doing artwork and pictures from his cousin’s sleepover last night at our home.)

NICE DAY, SHORT EVENING DRIVE
Nicholas had a nice day! He was feeling fine and just had an overall good day. This evening we took a very short 10-mile round trip drive on back roads from Lafayette to Alamo. Nicholas was spotting “interesting” mailboxes. He spotted a mailbox that looked like 101 Dalmatians, an American Flag, and geometric designs.

NEXT APPOINTMENT
Nicholas' next appointment for a check-up and Day Hospital treatment is Thursday, September 8. He will receive IVIG (immune booster) and Pentamidine (preventative medicine for a certain type of life-threatening pneumonia that commonly effects immune compromised patients).

September 5, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Sunday, September 4, 2005 11:02 PM CDT

Day plus149

NICE DAY AND NICE EVENING
What a difference a day makes. Nicholas awoke this morning feeling just fine. He had a good day and evening without any complaints of pain of uncomfortable feelings.

He was fascinated with science today saying, “I want to do science today.” So mom accessed a science program on the computer and he worked on his science—we love seeing him continually reaching out to expand and learn.

Today was his cousin Mikayla’s birthday and he surprised her by showing up at her house for a very short visit. And she surprised Nicholas by coming over for the evening and spending the night. What a beautiful sight: talking, playing, laughing, and seeing Nicholas’ glow & smile. The type of glow & smile we remember from him enjoying friends spending the night. Oops, a movie and popcorn was a highligt for them as well.

September 4, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, September 3, 2005 11:41 PM CDT

Day plus148

NICE DAY, NOT SO NICE EVENING
Leisurely Saturday afternoon drive to Sausalito, across the Golden Gate Bridge, down Lombard Street (crooked road) in San Francisco, and back to Lafayette. Seeing the bay, the ocean, surfers, boats, fog rolling in, more ocean, people, places, and just “things” helped the afternoon trip be a nice, joyful time for Nicholas—even though we spent the entire time in the car.

NOT SO NICE EVENING
Late evening, Nicholas’ complained that his stomach was bothering him and he was not feeling well. Shortly afterwards, he vomited and at this moment he still is not feeling well. We PRAY and watch over him as every moment at times torments us because of this awful disease—over this process that we know is long, and sometimes leaves us feeling lonely and so afraid. Not lonely for love that our Father provides, and not lonely for love that you provide. Feeling lonely at times because this disease is awful, always reminding mom & dad that we are not in control, not able to protect and keep Nicholas safe from harm.

And while afraid we are reminded, reminded that our Father, God’s, love has never abandoned us. Reminded and feel that His love comforts us—we are so grateful for His presence and are comforted to know that Nicholas is His perfect child.

September 3, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, September 2, 2005 11:58 PM CDT

Day plus147

ANOTHER GOOD DAY and we are really enjoying them. AND while being so thankful for these days, it is still so hard every moment knowing what Nicholas is going through. Hard living through this “leukemia and bone marrow stuff” as part of our lives, every day and every moment. Hard mentally to administer the various medicines mornings and nights, because of the realization about this awful disease that Nicholas is fighting. Hard mentally to administer the medicines because of their side effects.

AND while it is hard to do all these things we are absolutely grateful that Nicholas’ spirit, joy, passion, love, and overall amazing way of going through it all without any complaints could not be any better. AND mom & dad are so grateful for the strength—although it is very, very tough to be so strong through it all—and grateful that through God we are physically able to push through it all—although physically and mentally we become drained. In those draining moments our faith shines light on love and love generates EVERYTHING we need and need to be to help see Nicholas through it all!

MORE INTERESTING COMMENTS FROM NICHOLAS as mom was walking by him playing today. Nicholas said, “Mom when can I have restaurant food?” Mom said probably in a couple of months. Nicholas then said, “When can I go into crowded places?” Mom said probably in a couple of months, however, they have to test your…“ (Nicholas then finished mom’s sentence) “…my immune functions.” Mom laughed! Then, Nicholas said, “Well I know that’s important!”

NICHOLAS SHOULD BE STARTING HOME INSTRUCTION (SCHOOL) next week through our Lafayette School District. With restrictions still in place, it will be awhile before Nicholas can participate in school with other kids—however, we will create ways to keep him engaged with other kids and find ways for him to enjoy the sights and sounds of play that we know come from kids at play.

September 2, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, September 1, 2005 10:49 PM CDT

Day plus146

GOOD WEEK ENDING IN SOME MORE GOOD NEWS
Nicholas does not need to go to CHO Day Hospital tomorrow, Friday, for IV Cytogam. With his initial response to the medicines, the protocol for CMV calls for him to go directly to one day every other week now, alternating weeks with IVIG, and at home Nicholas will receive IV Gancyclovir once per day versus twice per day. So tomorrow he can start his long holiday weekend without a hospital visit—yeah!

NICHOLAS’ CONVERSATIONS CAN BE VERY INTERESTING
The pump mom was given to infuse Gancyclovir into Nicholas via his Broviac (central line in his chest), as part of the CMV treatment is attached to a rectangular metal box. Aside from being awkward for Nicholas to be mobile while the pump is attached for 2 hours a day, it takes mom several steps each time to get the medicine ready with tubing and hooking up the medicine—let’s just say it’s a bit cumbersome.

Mom received a phone call from the home health care agency stating that they had approval for the medicine to be in a ball, called an eclipse, and requires no pumps and no tubing for mom to hook up. It’s self contained—very simple and light to carry.

While mom was receiving the news she bellowed, yes! WHAT NICHOLAS SAID: After the call Nicholas asked mom why she bellowed, yes. After mom explained, Nicholas said, “Well, I just want my Platelets to be up.” Mom asked what do you know about Platelets? Nicholas said, “Well, I can’t wrestle and play a lot of things while my Platelets are low.” And mom laughed. Basically, while his Platelets are low Nicholas needs do to activities that keep him on the ground to avoid falling and getting cut or hurt.

September 1, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

Friday, September 30, 2005 11:59 PM CDT

Day 315 since Nicholas’ original leukemia diagnosis

Day plus175 since the BMT

Day 19 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 10 of relapse treatment

STILL PAIN IN HIS BODY (LEGS AND ARMS)
Nicholas’ body is still experiencing pain when touching his legs and arms or when he is moved. However, his mind is still strong. So after Nicholas and KJ discussed seeing each other today, Nicholas generated a little more strength to move about. Actually, their plans were for us to pick KJ up on our way home from the RMH so KJ could visit at our home. Mom & dad love the interaction between these two guys who have amazing spirit and compassion. By the way, Nicholas actually walked to the car from the RMH—this was the longest distance he has walked in the last three days!

TWO NEW PHOTOS UNDER “VIEW PHOTOS”
1) Listening and singing to music on the way home today
2) Relaxing in the family room with KJ

SO NICE TO BE HOME
Simply stated, and we’re sure known by most, being home is comforting. It brings a smile on our face and warmth to our hearts. We are hoping to be home for the weekend and two days next week.

September 30, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: NA

LACTIC DEHYDROGENASE (LDH): NA

CYCLOSPORINE: NA

 


Thursday, September 29, 2005 9:38 PM CDT

Day 314 since Nicholas’ original leukemia diagnosis

Day plus174 since the BMT

Day 18 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 9 of relapse treatment

TODAY’S PROCEDURES WENT WELL in the Operating Room (lumbar puncture and chemotherapy into Nicholas’ spinal fluid: IT Methotrexate, ARA-C, and Hydra cortisone) and Day Hospital (Vincristine and Daunrobucin).

And the E. Coli Asparaginase shots in the thighs were able to be administered while he was in the operating room and under anesthesia so he did not feel them at all. Again, because of the previous reactions to Asparaginase, Nicholas was pre-medicated and an emergency reaction kit was at his side all day. We will administer Benadryl every 4 hours for 24 hours to guard against reaction. So it will be another long night for mom & dad—and that’s okay.

Nicholas’ Platelets came down to 21 and although close to being at 20 (which is when a Platelet transfusion would take place), a decision was made not to do a transfusion today or tomorrow. We will have to closely monitor Nicholas over the weekend for any signs of bleeding.

BLASTS STILL GOING DOWN and it is so comforting to know at this point that the cancer is being destroyed by the chemotherapy. Today, Blasts were down to 4 percent.

NICHOLAS’ BODY IS STILL SORE TODAY; he was able to move just a little on his own without much discomfort. And just the slightest movement causes Nicholas a lot of pain. With Vincristine contributing to the body pain and with Vincristine administered today, we will be watchful for any related pain. We will administer pain medicine (Tylenol) if necessary.

NEXT WEEK’S procedures will be similar to this week. On Monday Nicholas will be in the Day Hospital for lab work, Cytogam, and E. Coli Asparaginase shots in his thighs. He will not be under anesthesia so we will continue to PRAY for an uneventful procedure. However, lab work will determine if we can administer these shots on Monday. And lab work will determine if a Platelet transfusion is needed on Monday.

Next Thursday there will be lab work. Next Friday Nicholas will be in the Operating Room for a bone marrow aspirate as well as a lumbar puncture with chemotherapy into his spinal fluid, and more E. Coli Asparaginase shots (because he will be in the operating room they will be administer while he is under anesthesia).

GOING HOME FRIDAY MORNING and we will be home for the weekend.

September 29, 2005 Blood Counts:
WBC: 2.7
HGB: 10.7
PLTs: 21
ANC: 1,080

BLASTS: 4 percent.

LACTIC DEHYDROGENASE (LDH): Level not analyzed today. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

CYCLOSPORINE: Level not analyzed today.

 


Wednesday, September 28, 2005 11:59 PM CDT

Day 313 since Nicholas’ original leukemia diagnosis

Day plus173 since the BMT

Day 17 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 8 of relapse treatment

LAB WORK LOOKS GOOD
Overall lab work looks good. There are dozens of levels closely followed and acted upon; however, following is an update on key levels moving in the right direction:

BLASTS are down from 27 percent to 5 percent—And we praise God!

LDH is down from 1,057 to 734.

PLATELETS, although very low out of range, they went up from 23 to 25 so a Platelet transfusion was not needed today.

We know the critical steps of getting Nicholas into remission, then keeping him in remission, and then the steps for a different type of bone marrow transplant. (Other than what we have said on previous journals since the relapse, we’ll explain more about the transplant later.) Although we are only approaching success on the first step, we are still getting ready to celebrate. Celebrate because Nicholas continues to simply be amazingly spirited, full of joy, and continually loving with everyone around him. In fact, we celebrate everyday because Nicholas deserves celebration daily! The warmth of the sunshine, the glow of the moon, and the sparkle of the stars are more precious to us because of Nicholas and so many kids like him. And we celebrate because of the amazing things about Nicholas that continue to surprise so many people every day.

NICHOLAS IS STILL EXTREMELY SORE
Nicholas’ legs and arms are very, very sore. He had to be carried throughout the day to do even common things like going to the bathroom. When he did try to walk, he had to “shuffle” his feet to lessen the pain in his legs. Again, the Vincristine and steroids can cause this effect—however, here too we PRAY for God’s shielding of Nicholas and for His glorious hands to heal him!

Today was one of the most uncomfortable full days for Nicholas as even getting into or turning over in bed was extremely challenging for him. He understands the importance of letting us know how he is feeling. At one point tonight he wanted to let us know how he was feeling and wanted to make sure we didn’t take him to the hospital based on how he was feeling. WHAT NICHOLAS SAID handling this situation: “I don’t feel ‘hospitally,’ I just don’t feel good.”

PRAYING FOR COMFORT AND UNEVENTFUL PROCEDURES TOMORROW
Tomorrow (Thursday) will be a long, full day of procedures. From the operating room for a lumbar puncture and chemotherapy into his spinal fluid, to chemotherapy afterwards into his blood stream via his Broviac (central line). And possibly the two E. Coli Asparaginase shots into his thighs. The doctors are assessing the possibility of administering the shots while he is under anesthetics in the operating room.

And PRAYING for a miracle for all to further witness and give glory to God—the complete healing and cure can be now, in Jesus’ name!

I KNOW WE KEEP SAYING IT, HOWEVER, WE KEEP FEELING IT: Thank you, thank you, thank you for being with Nicholas, mom & dad, and our other boys!

September 28, 2005 Blood Counts:
WBC: 4.2
HGB: 11.3
PLTs: 25
ANC: 2,100

BLASTS: 5 percent.

LACTIC DEHYDROGENASE (LDH): 734. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

CYCLOSPORINE: 218.

 


Tuesday, September 27, 2005 11:49 PM CDT

Day 312 since Nicholas’ original leukemia diagnosis

Day plus172 since the BMT

Day 16 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 7 of relapse treatment

IMPACT OF THIS AWFUL DISEASE ON OTHERS IS NOTHING COMPARED TO THE IMPACT ON NICHOLAS (and other kids in Nicholas’ situation)
There is no other way of thinking about the impact this awful disease is having on anyone, without first knowing that the impact on Nicholas is life-threatening and overrides any impact on mom & dad or his brothers. Putting it in perspective, the impact on mom & dad is insignificant, although real and hard hitting. From this perspective, we recognize the importance of taking care of ourselves to take care of Nicholas. However, the impact this awful disease has on us physically and mentally is challenging. And no matter how challenging, we will be up and out front on this fight with the strength our Father provides.

Last night (Monday) we administered Benadryl every 4 hours to guard against a reaction to the E. Coli Asparaginase shots, so dad got very little sleep administering the medicine trying to let mom get some rest for more than a few hours. Mom continues to prepare medicines, administer medicines, read & search to better advocate for Nicholas. The typical time for rest becomes the typical time to read & search information to be better prepared to get through “all this leukemia and bone marrow stuff.”

NO CHEMOTHERAPY TREATMENT TODAY; HOWEVER, NICHOLAS WAS IN PAIN
There was no chemotherapy treatment today; however morning and night we still had many medicines to prepare and administer. And throughout the day Nicholas experienced consistent pain primarily in his arms and legs (most likely from the Vincristine as stated yesterday).

HOME FOR THE DAY (TUESDAY) BEFORE TOMORROW’S LAB WORK
We left the RMH this afternoon and we are spending the night at home, returning to LPCH tomorrow (Wednesday) for lab work. Cylcosporine and Platelets are specific results the doctors will assess; all results will help to determine the continued chemotherapy plan. With Platelets, Nicholas may have to receive a Platelet transfusion tomorrow, as stated in yesterday’s journal.

AWAY FROM HOME THE NEXT FEW DAYS
After lab work tomorrow and possibly a Platelet transfusion, we will stay at the RMH. Then on Thursday Nicholas will be back at LPCH for procedures/chemotherapy all day, as stated in yesterday’s journal. We expect to be home Friday afternoon and the weekend.

September 27, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: Current percentage will be determined with tomorrow’s labs

LACTIC DEHYDROGENASE (LDH): Current level will be determined with tomorrow’s labs. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

CYCLOSPORINE: Current level will be determined with tomorrow’s labs.

 


Monday, September 26, 2005 11:45 PM CDT

Day 311 since Nicholas’ original leukemia diagnosis

Day plus171 since the BMT

Day 15 of the relapse—(As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

Day 6 of relapse treatment

BELOW IS A SNAPSHOT OF THE DAY (As always, we are so fortunate to have you with us on this awful journey. Fortunate because you provide comfort through your loving thoughts, prayers, and/or guest book entries. And as always, we truly hope these journals are a help to you, help to focus on the things that Nicholas is experiencing enabling your thoughts, prayers, and/or guest book entries to help Nicholas.)

E.COLI ASPARAGINASE SHOTS: Blood samples sent to Los Angeles for an asparaginase analysis reveals that Nicholas has antibodies against this medicine. This means Nicholas’ body fights off 90 percent of this medicine when it is administered. Even considering the reactions experienced, our doctors determined that because this is an important medicine toward remission, Nicholas would receive two shots—one in both thighs simultaneously like he did in November 2004.

The day at LPCH for a check up and these shots began at 11:30 this morning. Nicholas was told about having to have two shots and he was more than brave while the nurses prepared him (pre-medicated to guard against a reaction, and a numbing cream on his thighs).

NICHOLAS ASKED to count to three, once again, to cue the shots. He asked the nurses to 1) apply the band-aids immediately after the shots, 2) “may I scream after the shots?” and 3) “I want my dad to carry me afterwards.” The nurses were very accommodating and patient as Nicholas prepared himself for the shots, while mom was lovingly holding him. Moments before 5:00 this evening the shots were administered and as of 11:45 tonight he is doing just fine. We are administering Benadryl every 4 hours, for 24 hours, to further guard against a reaction (yes, Benadryl is an effective guard against the seriousness of the potential reaction).

Later this week our doctors will have more information to determine if we should continue with these shots that originally were going to be administered twice a week for 3 weeks (one shot versus two shots).

WHAT’S NEXT: On Wednesday more lab work will be performed to check various levels toward helping to confirm the treatment to get Nicholas into remission, as well as help manage the following:

Cyclosporine: Remember, ever since the BMT we have not been able to keep the Cyclosporine in range for more than two days in a row. It fluctuated back and forth from being too high, to too low. This is why we had three medicines (Cyclosporine, Prednisone, and Cellcept) to guard against the GVHD. Once again, high and low out of range is what we are experiencing now.

Platelets: Remember, over the last two months Nicholas’ Platelets have been dropping and are now approaching a very low level (20) that will require a Platelet transfusion. With Nicholas overall leukemia treatment since the November 19, 2004 diagnosis, he has “only” received three Platelet transfusions and six Red Blood Cell transfusions.

On Thursday Nicholas will go back to the operating room for another Lumbar Puncture with chemotherapy (IT Methotrexate, ARA-C, and a steroid) injected into the spinal fluid, and two other chemotherapy medicines into his blood stream.

NICHOLAS’ NOTE TODAY: Before the E. Coli Asparaginase shots today, Nicholas wrote out his dinner request. He wrote, “Chicken, shrimp tempura, and egg-rice.” We use every opportunity to keep Nicholas focused on learning and mom & dad are so happy two see him always learning, not just wanting to learn. He thoroughly loves to write, and keep track of money.

FEELING THE EFFECTS OF CHEMOTHERAPY: Nicholas' body is very sore, mainly his arms and legs. This is believed to be a side effect of the chemotherapy medicine, Vincristine, that he received last Wednesday night. He is scheduled to receive Vincristine again this coming Thursday.

TOUCHING, LOVING VISIT: Recently, a BMT patient at LPCH relapsed and went to New York for a cord blood transplant. At LPCH before going to New York, Nicholas enjoyed playing with him and they had special moments playing with Pokemon cards. Parents dealing with this awful disease become close with other parents very quickly and really need the conversations and sharing of experiences. The parents of this 7-year old are amazing and were so loving to Nicholas, and giving of information in our conversations.

The beautiful 7-year old boy drew his last breath on August 20, 2005. While we did not know him deeply, we experienced the following at the LPCH that was written for his memorial service. He "gave infinite joy to his parents, tenderness to his little brother, playfulness to his friends, and unending love to all who knew him." Today, his mother visited Nicholas and mom & dad at the RMH. The mother of the 7-year old had been thinking about the recent journal regarding Nicholas giving one of his stuffed bears to a little boy who was crying at CHO. Today she delivered a huge stuffed-angelic-looking bear to Nicholas along with a large gift bag containing various books and toys. We PRAY for loving comfort to this family and the joy that this beautiful 7-year old will forever provide to all who knew him or touched by his story.

BLASTS AND LACTIC DEHYDROGENASE ARE CONTINUALLY COMING DOWN—please see below and refer to previous journals for the trending down.

September 26, 2005 Blood Counts:
WBC: 5.8
HGB: 9.8
PLTs: 23
ANC: 1,914

BLASTS: 27

Lactic Dehydrogenase (LDH): 1,057. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

Cyclosporine level: 186.

 


Sunday, September 25, 2005 11:59 PM CDT

Day 310 since Nicholas’ original leukemia diagnosis

Day plus170 since the BMT

Day 14 of the relapse—(As stated September 22,2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

VERY NICE DAY AT HOME
Friends, friends, friends, and Nicholas’ brothers made up the day, feeding our hearts with fun and laughter. And very nice conversations with friends momentarily eased the excruciating pain in mom & dad’s hearts and throughout our bodies. We know that our pain is nothing compared to what Nicholas is going through, and know that we must do EVERYTHING that we can do see Nicholas through it all. Everything beginning with God!

Also, a comforting prayer with friends today helped us in knowing our Father’s love is guiding Nicholas’ journey (and our journey).

BACK AT THE RMH TONIGHT
Tomorrow Nicholas will receive his second E. Coli Asparaginase shot in his thigh. This medicine scares us because of the reactions Nicholas has experienced and we are praying, knowing that God’s love is guiding ALL aspects of Nicholas’ journey so there should not be anything to fear—feeling God’s presence with us everywhere.

And back at the RMH tonight means being away from our other boys. Here too, we pray for guidance as we listen to His voice enabling us to parent from afar. We pray our other boys continually hear and feel our love—although delivered and expressed in somewhat unfamiliar ways to them (because mom & dad are away and at other times very focused on Nicholas’ cure).

NOTES

HAIR CUT: Most likely you have noticed a lot of hair on Nicholas. Tonight, we trimmed it and he sure did like the feeling, and the look. Because we do not have our home PC with us at the RMH, pictures with his haircut will be uploaded to this site and his photo album sometime during the week. However, along with the new home page photo above, clicking on View Photos you will see three other new pictures.

FOOTBALL AND BASEBALL: Oh, Nicholas did not watch any football today and when one of his brothers turned on a football game today in the family room, Nicholas responded that he could go into the living room to watch the game—Nicholas was watching a Disney show called, That’s So Raven. And Nicholas, as well as his brothers likes the SF Giants so it will be fun for them if the Giants can sweep the upcoming 4 games against the San Diego Padres.

September 25, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: Current percentage will be determined with tomorrow’s labs

Lactic Dehydrogenase (LDH): Current level will be determined with tomorrow’s labs. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

Cyclosporine level: Current level will be determined with tomorrow’s labs.

 


Saturday, September 24, 2005 11:59 PM CDT

Day 309 since Nicholas’ original leukemia diagnosis

Day plus169 since the BMT

Day 13 of the relapse—(As stated September 22,2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

DISCHARGED AT 6:00 PM: Nicholas had a fun, full day from morning, noon, and night with family and friends at LPCH and then at the RMH. And visits by other nurses Nicholas met at LPCH during his BMT stay were definitely a good thing today. And medically, it was an un-eventful day—another good thing. Leaving the hospital, Nicholas was jogging (carefully because his Platelets are so low) oust of the hospital doors and screaming the screaming sounds you hear from “kids at play” that is truly music for your heart. Tonight before bed he was watching a favorite Disney show and during the opening of the show, you know when the theme song is playing, Nicholas was singing the song and dancing to the beat. And mom & dad smiled as Nicholas was warming our hearts.

HOME TOMORROW FOR SEVERAL HOURS: We will take Nicholas home tomorrow for the afternoon to just be “home,” spend time with his brothers, and planned time to spend with a couple former Diablo Valley Montessori School classmates.

WHAT NICHOLAS SAID DURING HIS PRAYER OVER DINNER: “…thank you for a wonderful day, and God thank you for letting me go home—sort of. Amen.” Nicholas was referring to being at the RMH this evening and at least out of the hospital.

WHAT NICHOLAS WROTE TO MOM: In addition to mom & dad teaching Nicholas math using money, mom has been doing a great job teaching Nicholas to read, spell, and write. As mom was preparing Nicholas’ night medicines, Nicholas wrote a note and gave it to her. Referring to his feelings on having to take the medicines tonight, the note read: “No, mom.” Nicholas was just using what he has been learning and being funny; he took his medicines.

UPCOMING PROCEDURES: On Monday Nicholas will be back at LPCH for a second E. Coli Asparaginase shot. Then we expect to be home Tuesday night & Wednesday day before returning back to the RMH Wednesday night for Thursday Lumbar Puncture with chemotherapy in his spinal fluid, and chemotherapy in Nicholas’ blood.

ALTHOUGH WE HAVE SAID THIS MANY TIMES, WE ARE BLESSED: We are blessed and we feel it. We are blessed to have Nicholas be so amazing the way he is handling this “leukemia and bone marrow stuff.” We are blessed to have a family that shows/provides so much love and support for Nicholas, mom & dad, and our other boys. We are blessed to have friends (and many that we have never met in person) to more than express love for Nicholas and our family—friends that provide proactive and unconditional love. Note: Nurses and doctors at CHO and LPCH, we include you as friends as you continually collaborate and work to be active, caring hospitals. Not just say, “We are a caring hospital.”

September 24, 2005 Blood Counts:
WBC: 8.8
HGB: 9.9
PLTs: 29 (Transfusions may happen if they drop further, down to 20 or below)
ANC: 3,168

BLASTS: 51 percent

Lactic Dehydrogenase (LDH): 1,816. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

Cyclosporine level: 338, from high out of range at 338 to low out of range at 162 and back up to 338.

 


Friday, September 23, 2005 3:22 PM CDT

Day 308 since Nicholas’ original leukemia diagnosis

Day plus168 since the BMT

Day 12 of the relapse—(As stated September 22,2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!)

***UPDATE #3, September 24, 12:45 AM

Shortly after midnight Nicholas complained of being cold and was chilly. His heart rate was elevated and this began to remind us of the November 2004 reaction although that time the reaction was within 20 minutes of the PEG Asparaginase shots, not 6 hours... Benedryl and Hydra-cortisone was administered and the nurses/doctors further examined Nicholas. His lungs were clear, and after the Benadryl his breathing was okay and he was not chilly. He will be closely watched over the night.

***UPDATE #2, 11:00PM***

A) E. Coli Asparaginase was administered at 6:00 PM without any reaction—we are thankful for God’s shielding. Remember, Nicholas was heavily pre-medicated and he was hoping to be asleep when it would be administered. So, part of his negotiating when the shot would happen, naturally included questions by him about “why can’t you let me go back to sleep first?” and “why do I have to take this medicine?”

The nurses were very patient as Nicholas prepared himself for the shot and when he was counting to three, which at that point he would be ready for the shot, whenever dad or one of the nurses would move to get ready, Nicholas would notice the movement and start counting over. After one, two, and being ready to say three, he would say “thr” “thr” and then said to everyone “I’ll say it.” After the shot mom closely held him and hummed a tune she would hum when we had to give him G-CSF shots in his arm, sometimes 5 nights in a row before the BMT. He then slept un-eventful for about two hours—this was a blessing.

These shots will probably be administered two times per week, for three weeks. Well, at least he will get plenty of negotiating practice.

B) After mom gives Nicholas a shower, the routine is for mom to change his Broviac dressing (dressing covering the central line going into his chest), dad to change the bedding, and for dad to clean & dry the shower/bath tub. Well, tonight there was an inadvertent change. While dad was cleaning the shower, several nurses came rushing into the room—dad inadvertently pulled the shower/bath tub emergency cord so the nurses quickly responded. They were surprised and dad was surprised as dad turned thinking they were all just coming to visit Nicholas.

***UPDATE #1***

EARLY UPDATE—ADDITIONAL CHEMOTHERAPY STARTING TODAY VERSUS NEXT WEEK

NOTE: Because this is an early update for today, please refer to yesterday’s journal for those details.

TODAY: The Daunorubicin and E. Coli Asparaginase are now planned for today. The staff is fully aware of the reaction Nicholas had in November 2004 to the PEG Asparaginase so in addition to being pre-medicated, equipment and staff will be on hand and closely monitoring Nicholas’ vitals and overall condition with administration of the E. Coli Asparaginase.

PRAYING: We need God’s continued “shielding” of Nicholas and PRAY that he does not have a reaction to the E. Coli Asparaginase. ALSO, this medicine is administered by an intra-muscular shot into Nicholas' thigh muscle (last time it was shot into both thighs, this time one thigh). It is so painful to prepare for and see happening. We will hold, love, and comfort Nicholas.

NICHOLAS: Nicholas looks great, really. Great Spirit, great interaction with the staff and great is the staff’s interaction with Nicholas. He is active and having fun—we want to feed joy into Nicholas every moment!

September 23, 2005 Blood Counts:
WBC: 6.7
HGB: 12.6
PLTs: 29 (Transfusions may happen if they drop further, down to 20 or below)
ANC: 1,541

BLASTS: 56 percent

Lactic Dehydrogenase (LDH): 2,043. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

Cyclosporine level: 162 early this morning, so low and out of range after just one missed dose (last night). Dropped from yesterday being high and out of range at 338.

 


Thursday, September 22, 2005 10:53 PM CDT

Day 307 since Nicholas’ original leukemia diagnosis

Day plus167 since the BMT

Day 11 of the relapse—and gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!

ANOTHER DAY OF SAD NEWS
Results of yesterday’s lumbar puncture shows that there is leukemia in Nicholas’ central nervous system (CNS, spinal fluid), as well as in his bone marrow. This means that medically Nicholas will need to undergo cranial and spinal radiation after the current chemotherapy regimen being administered/developed. We have been blessed, yes blessed, that Nicholas’ joy has not been taken away. In previous journal entries we talked about God’s “shielding” of Nicholas from harm during the earlier chemotherapy, fractionated-total-body radiation the week before the BMT, during the BMT, etc. And we ask for our loving God’s continued “shielding” of Nicholas. We are reminded…”The joy that none can take away is mine, I walk with God today.”

IMMEDIATE ACTION: Starting next Wednesday (September 28, 2005) Nicholas will go back to the operating room for a lumbar puncture with three medicines injected into his spinal fluid: IT Methotrexate, ARA-C, and a steroid. This will take place once per week over the next 4 to 5 weeks. It is projected that it will take two lumbar punctures (two weeks) to eliminate the leukemia in the CNS.

THEN WHAT: In two weeks Nicholas will have another bone marrow aspirate and spinal tap to check progress.

CONTINUED CHEMOTHERAPY
Remember the Asparaginase and Daunorubicin we talked about yesterday, this coming Monday Nicholas will receive the Asparaginase and next Wednesday he will receive the Daunorubicin. Through the collaboration of doctors within LPCH, CHO, and others the best medical option for Nicholas is being developed.

NICHOLAS
Believe it, he had a fun day all in his room. And he had a beautiful nap, at least to mom & dad it was beautiful as we watched him sleep while he was cuddling a teddy bear and holding a dollar in his hand. (Over the last couple of months he has gained an affinity for money). He looks to find ways to earn more, and we have used his affinity to help teach him lessons such as math as well as the value of things.

Nicholas had another special visit from a clown that he met while at the RMH, and mom & dad along with Nicholas had a special visit from dad’s top executive/friend from work.

September 22, 2005 Blood Counts:
WBC: 15.7
HGB: 12.0
PLTs: 58
ANC: 2,198

BLASTS: 76 percent

LACTIC DEHYDROGENASE (LDH): 2,213. Target range is “<300” This is a liver marker revealing cell turnover and tumor activity.

CYCLOSPORINE LEVEL: 338, high and out of range (Tonight’s and tomorrow morning's doses will not be administered)

 


Wednesday, September 21, 2005 11:36 PM CDT

Day plus166 since the BMT

Day 306 since Nicholas’ original leukemia diagnosis

And sadly now it is day 10 of the relapse--and glad to know through God that we are on the path of healing and cure!

FIRST DAY OF CHEMOTHERAPY WITH THE RELAPSE
But first, here is what Nicholas was doing in the Exam room before any of today's procedures: He was "humming," humming a song that he had just created while drawing pots of gold under a rainbow. Nicholas' humming was music to mom & dad's hearts and seemingly the humming generated words of love and joy that coated our hearts with joy.

In the operating room, Nicholas received his first chemotherapy with the relapse, in the form of IT Methotrexate in the spinal fluid during another bone marrow aspirate. Normally, Nicholas wakes up very quickly in the recovery room; however, today mom & dad had to wake him up about 55 minutes later.

Speaking of music (so to speak, because the following was soothing to our hearts), Nicholas was greeted in his hospital room by several staff members from the hospital all night long, including physical therapist and a clown who frequents the RMH as well as LPCH. It was amazing to witness the parade of doctors, nurse practitioners, nurses, nurse assistants, and so on who came in to see Nicholas again. And it was a wonderful feeling hearing that many of them have been staying in touch with Nicholas' journey through this CaringBridge website.

Tonight at 9:00 he received a second chemotherapy medicine, Vincristine. And after we have been tapering Nicholas down on the Prednisone (remember, it helping to manage the GVHD over the last several months), tonight as part of the medicines to get Nicholas back into remission, it was administered at a high dose that will continue for about a month.

A fourth medicine, PEG Asparaginase (the one that he had a bad respiratory reaction to in November 2004) is being considered because it is expected to be a significant help toward remission. After the first of three planned doses when Nicholas began treatment in November, we stopped giving this to Nicholas. Our LPCH and CHO doctors have discussed this and with other research feel that with pre-medication Nicholas will be fine receiving this medicine. This is still being considered along with conversations with St. Jude who may have a similar medicine called Erwinia that was made in England and stopped being produced because of the availability of the PEG Asparaginase. The Erwinia, with like benefits was helpful to those patients who had a reaction to the PEG.

A fifth medicine, Daunorubicin, is another one considered. However, because of its high cardio-toxicity we are holding off on it right now.

FIRST STEP IS GETTING NICHOLAS INTO REMISSION
While getting Nicholas into remission is probably obvious to all, based on Nicholas' situation (like recently receiving the BMT) this by itself is a very, very, very serious challenge. Although we are working on next steps such as keeping him in remission, and some type of bone marrow transplant, the reality of the challenge hurts so much in understanding that "it" is truly a very, very, very difficult task for Nicholas to overcome.

The success of whatever type of transplant is not projected to be high-it will be a very high risk if we can get to the step of a transplant. AND WE KNOW THAT GOD IS THE ORCHESTRATOR OF NICHOLAS'LIFE and through God this relapse situation is in His hands. God has the world, in many respects, watching and we believe that He has just placed Nicholas' situation on an even higher platform for His work to be witnessed. And the glory to be His. Because we believe in Jesus' name that Nicholas is cured. Oh Father, it hurts so bad to see and hear Nicholas going through this journey. And Father, we are grateful that you are a loving God holding Nicholas in your hands and helping mom & dad to understand as we witness your love.

SNAP-SHOT OF SOME LAB WORK
WBC: It is now high at 19.2. It was 88 at original diagnosis on November 19, 2004. However, it has been going up since the relapse.

LDH: Remember, this is what raised a concern that led to revealing that Nicholas was relapsing. It is now at 2,364 and the target range is below 300 or below 500. This is a liver marker revealing cell turnover and tumor activity.

Cyclosporine: In range at 299

Blasts: Increased to 83 percent. Now that we began chemotherapy we are PRAYING to get Nicholas into remission and the Blasts to go down to 0.

NICHOLAS
Nicholas is truly our sunshine and using a word a nurse used tonight to describe how so many staff and non-staff members are attracted to him, Nicholas is a "magnet" within our family. He has always brought our family closer together and is our guiding light. He continues to shine so brightly even during the darkest moments of our lives as we reach out, read, and work hard to do the right things for Nicholas on this awful, painful to us, journey that has taken a terrible turn-relapse.

September 21, 2005 Blood Counts:
WBC: 19.2
HGB: 11.0
PLTs: 54
ANC: 1,920

BLASTS: 83 percent

Cyclosporine level: 299

 


Tuesday, September 20, 2005 11:59 PM CDT

Day plus165 since the BMT

Day 305 since Nicholas’ original leukemia diagnosis

And sadly now it is day 9 of the relapse

It is so hard to realize what Nicholas is experiencing, what mom and dad are experiencing, what our other boys are experiencing, as Nicholas continues this journey and what we’re about to experience beginning tomorrow. Nicholas has gone through so much drama, trauma, and experiences for a lifetime. We pray that we are directed to make the right decisions tomorrow as we begin chemotherapy. We truly feel that Nicholas is healed through God and with everything within us want to see and hear that he is healed and cured.

Nicholas was thankful to have a full day with KJ, who came to visit again: video games, mock Power Ranger fighting, talking and various other activities. We are blessed that Nicholas’ joy, enthusiasm and fun nature is so vibrant.

Nicholas, mom and dad settled into the RMH late tonight preparing for early morning labs at LPCH and admission.

September 20, 2005 Blood Counts:
WBC: N/A
HGB: N/A
PLTs: N/A
ANC: N/A

BLASTS: Will update with Wednesday’s labs

 


Monday, September 19, 2005 11:28 PM CDT

Day plus164 since the BMT

Day 304 since Nicholas’ original leukemia diagnosis

And sadly now it is day 8 of the relapse

RESULTS OF CONSULTATION AT STANFORD-LPCH
Discussing the “worst” prognosis, this is the “worst” situation a parent may have to confront. It’s an awful, critically serious situation that devastates your heart and mind. Loving Nicholas, leaning on our loving God, we are fighting every moment and anything in the way of Nicholas’ cure.

Our doctors at Children’s Hospital Oakland and Stanford-Lucile Packard Children’s Hospital have showed their collaborative support. They are making the challenge of originally being treated at one hospital (CHO) and transplanted at another (LPCH), seem so transparent while we are determining next steps to get Nicholas into remission. However, GVHD associated with the BMT will be a factor to manage, as chemotherapy treatment will begin to get Nicholas into remission. So, we are having LPCH’s oncologist lead this phase of chemotherapy treatment and partner with our LPCH BMT doctor—in a side-by-side like approach. Nicholas and mom & dad know this doctor as we engaged with him during post-BMT "rounds" by the hospital staff. While this perhaps could be managed with two hospitals, every nuance experience with Nicholas since the BMT and every moment moving forward will be critical with the element of “time” being a significant factor.

TWO STEPS: 1) Make the leukemia go away—achieving remission, and 2) A second BMT of some sort—there are a few opinions out there and this will have to be narrowed to the one that the team of doctors leveraging other sources assess as the best option to cure Nicholas.

QUICK UPDATES
BLASTS: Today’s lab work revealed that Blasts are now 76 percent, up from 31 percent yesterday.

CHIMERISM: Remember the DNA chimerism test that monitors the success of the BMT by determining the relative percentage of Nicholas’ and the donor’s T-cells and Neutrophils in the marrow. The goal over time is 100 percent of the donor cells.
1) The first one on May 11 revealed that overall 95 percent were donor cells—great start.
2) In June overall it was 98 percent.
3) In July the T-cells dropped to 90 percent.
4) Mid-July the test was performed again revealing that the T-cells came back up, to 96 percent, and overall 98-99 percent.
5) BAD NEWS: Now the overall percentage has plummeted to 5 percent donor cells.

WHAT’S NEXT: RONALD MCDONALD HOUSE AND ADMISSION INTO LPCH (CRITICAL TOXICITY ISSUES BECAUSE OF THE BMT)
Remember, we have reduced the Prednisone to trigger GVL. One of the critical issues to manage will be the toxicity levels of chemotherapy because the BMT effect on Nicholas. And beginning Wednesday, Nicholas will start the chemotherapy phase of getting him into remission. Tomorrow night Nicholas, mom & dad will be at the RMH. Wednesday morning we will be at LPCH for lab work and some ongoing treatment before being admitted into LPCH for chemotherapy treatment. We are expecting to be in the hospital through Friday. And we recognize this could change based on the response Nicholas’ body has to the treatment.

We PRAY & PRAY for God’s guiding of the doctors minds and hands and clarity of mind for mom & dad to make the right decisions. We continually express our love for God, and recognize that His will is needed for the miracle of Nicholas’ continued life.

PREPARING FOR THE STEP AFTER NEXT
We PRAY that Nicholas quickly (or just gets) into remission. Then the second bone marrow transplant will be needed. Based on the relapse and the apparent aggressiveness of the leukemia a different approach to the transplant will be taken. Our LPCH BMT doctor is connecting with St. Jude Hospital in Tennessee and the University of Minnesota who both specialize in the different approach that will be needed in an attempt to cure Nicholas. There is so much risk with the approaches that may be taken, AND the risk apparently is the best medical approach to take to cure Nicholas.

Nicholas has an awful challenge in front of him, and the risks of the chemotherapy treatment as well as the different approach for a second bone marrow transplant has us so afraid and constantly praying and crying for our loving God’s guidance, shielding, protection, and cure!

Connecting with St. Jude and the University of Minnesota paves the way for Nicholas to go to one of these hospitals after we get him into remission and he is medically able to withstand a second transplant.

We ask that we all keep demanding and fighting to find a cure for these life threatening diseases, for all the kids who are afflicted with them.

September 19, 2005 Blood Counts:
WBC: 15.7
HGB: 12.0
PLTs: 58
ANC: 2,198

BLASTS: 76 percent

 


Sunday, September 18, 2005 11:38 PM CDT

Day plus163 since the BMT

Day 303 since Nicholas’ original leukemia diagnosis

And sadly now it is day 7 of the relapse

ANOTHER NICE DAY; HOWEVER, TONIGHT NICHOLAS' STOMACH WAS HURTING
Nice relaxing day with family and friends who made long drives to visit, nice phone calls, and nice guestbook entries—thank you, everyone for your hearts and prayers.

Late tonight, Nicholas’ stomach began to hurt him. We recognize that the planned reduction of the Prednisone can be triggering some GVHD and PRAY for God’s continued shielding of Nicholas and directing of this journey for healing. (Please refer to the September 16 journal.)

IT’S SUNDAY AND NICHOLAS WAS DOING SCHOOLWORK
Remember, just yesterday Nicholas’ home-school teacher was setting up at our home to begin kindergarten instruction for him. And today, mom got Nicholas started on schoolwork—he worked on rhymes. Nicholas was enjoying it and got to the point where mom left him alone with his work and he just kept on going and going.

TOMORROW (MONDAY)
We will be at Stanford-LPCH for consultations about the current reduction of immunosuppressive medicines and GVHD and praying the balance becomes just right for GVL. Also, the discussion—and we pray—to determine a plan to begin administering the new medicine, Clofarabine, to get Nicholas into remission. (Please refer to the September 16 journal.)

Mom & dad are anxious for the discussions, and we are nervous about the discussions. We PRAY for God’s imparting of wisdom to the doctors and for our clear minds to make the right decisions.

September 18, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: Current results will be available tomorrow (Monday)

 


Sunday, September 17, 2005 11:59 PM CDT

Day plus162 since the BMT

Day 302 since Nicholas’ original leukemia diagnosis

And sadly now it is day 6 of the relapse

SNAP-SHOT OF A NICE DAY IN THE MIDST OF THIS AWFUL TIME WITH THE RELAPSE

1) KJ visited and spent several hours with Nicholas. They played video games, indoor basketball, outdoor basketball—really, and football with three of Nicholas’ cousins (Stefan, Natalia, and Rene). What a beautiful sight to see KJ and Nicholas (recent transplant patients) so active. Of course, these activities were very tame because of their Broviacs as well as Nicholas’ Platelets being so low. However, these guys were “playing and having fun.”

2) Cousin Charles drove up from the San Diego area and joined in on the fun with his sister Rene and his two kids Stefan and Natalia. Seeing Nicholas so vibrant and active, Stefan said to his dad, “Dad, I thought Nicholas was sick?” What a blessing to have Nicholas be able to be “playing and having fun.” And what a lesson through God for others to see Nicholas be able to be “playing and having fun.”

3) Theresa, Kaeli’s mom, drove up to visit Nicholas and mom. We are blessed again to have such a warm, loving friendship that is truly from the heart—thank you Theresa. (You do remember Kaeli, right? Kaeli is another BMT patient we met a LPCH and had lots of fun with at the RMH.)

4) Nicholas’ home-school teacher came by today getting set up. We are focused on Nicholas’ cure and focused on him continuing to thrive.

5) The blessings are pouring in from the guestbook entries and those powerful thoughts and prayers from all of you, as well as through another wonderful meal cooked for us in our home—Soha, we appreciate you and your family so much. And Reda, you and your company (thank you Louie) demonstrated such love for Nicholas through creating the code for Nicholas’ Song of Love to be playing in the background of this website.

6) NO PAIN NOTICED TODAY: Mom & dad did not notice Nicholas going through any pain today—amazing!

7) STOPPING TO REST PERIODICALLY: Nicholas was tired periodically throughout the day and he was quick to stop and rest. Sometimes, curling up on his bean-bag in his room for a quick nap; sitting on a bench outside; or taking turns curling up with mom, dad, one of his brothers, and Theresa this evening while watching a movie.

8) A DRIVE TO THE BAY IS PLANNED FOR TOMORROW: Nicholas has asked to go by a favorite spot on the Bay to watch the waves roll in and have a picnic—all in the back of the Expedition with the third seat out. These times have really become one of his favorites. Nicholas especially likes it when we do it in the evening so it gets dark and like a campout. At these times, he likes reading books under a flashlight.

NOTE: Click on View Photos to see pictures from today, and the third album under Links below for pictures while in the hospital the last few days and other updated pictures (at the end of the album).

September 17, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

BLASTS: Blood draw tomorrow morning (Sunday)

 


Friday, September 16, 2005 11:59 PM CDT

Day plus161 since the BMT

Day 301 since Nicholas' original leukemia diagnosis

And sadly now it is Day 5 of the relapse

DISCHARGED FROM CHO
Nicholas was discharged this afternoon from CHO and the good news is that we enjoyed another homecoming—what a warm, comforting feeling.

HERE IS THE DEVELOPING PLAN
1) WHAT: Following the withholding of last night’s Prednisone, beginning today we are only administering 3mg of Prednisone one time per day versus the 6mg twice per day that was being administered. PURPOSE: Again, we are now TRYING to generate GVHD and the GVL effect to fight the cancer in Nicholas’ bone marrow.

2) WHAT: Monday morning we are meeting with Nicholas’ BMT doctor and the other LPCH doctor who has used the new Clofarabine medicine stated in yesterday’s journal. PURPOSE: Further discuss the reducing of the immunosuppressive medicines (like the Prednisone stated), the Clofarabine medicine’s use on Nicholas to get him into remission, and along with our CHO doctor discuss steps 3 and 4 below.

3) WHAT: Explore and determine the best option around to keep Nicholas in remission. PURPOSE: To put Nicholas into a position to be cured.

4) WHAT: Explore and determine the best option around toward curing Nicholas. PURPOSE: To cure Nicholas.

OTHER EFFORTS TO FIND A CURE
Once again, we are so fortunate for the care and love received from friends (as well as our families). In this case, mom met a patient’s mother while at LPCH who with her son has been through some very, very trying times. They have been pushing and driving for a cure of their own, and this morning mom received a telephone call from Tennessee and it was the boy’s mother. She had a lot of extremely helpful information for us. Her son has successfully received the Clofarabine medicine and had other positive information about its use.

She also shared transportation information that would be extremely helpful if there was a need for us to quickly get Nicholas to another place for treatment based on the nature of this cancer. NOTE: We are very thankful for the way our CHO and LPCH doctors have been collaborating with each other and other doctors/hospitals!

CARING AND WATCHING OVER NICHOLAS
Along with administering and tracking medicines, we are pushing Nicholas to drink significantly more than normal to push out any breakdown of cancer cells as the GVHD/GVL effects come into play. Tracking his liquid intake is important because if he is not drinking along with urinating enough, he will have to go on IV fluids.

And we are being so watchful for GVHD indicators.

NICHOLAS HAD A GOOD DAY
Being home, of course, made today a good day. Nicholas enjoyed ice cream from an ice cream truck, talking with our neighbors, talking on the phone with K.J. (he is planning to come see Nicholas tomorrow—Saturday), playing with Joey who came to visit, playing with his brothers, receiving a homemade dinner that was cooked by our family friend Cyndi—at our home, and cuddling up through out the night.

September 16, 2005 Blood Counts:
WBC: 8.7
HGB: 10.9
PLTs: 46
ANC: 1,305

BLAST INFORMATION
September 16, 2005 BLASTS: 43percent

September 14, 2005 BLASTS: 29percent

Blast: An immature cell. In leukemia, blasts refer to malignant white blood cells, which are characteristic of the type of leukemia.

1) Nicholas relapsed on September 12, 2005 wherein the peripheral blood sample drawn revealed a lot of blasts (on September 14 and 16 bone marrow aspirates were performed and the resulting percentages of blasts determined)

2) Reference: When Nicholas was diagnosed with leukemia on November 19, 2004, he had 69 percent blasts followed by the following percentages to November 29, 2004: 71, 77, 76, 36, 12, 5, 0. The first day of initial Induction Treatment began on November 22, 2004 and he was in remission on the eighth day of treatment.

 


Thursday, September 15, 2005 11:46 PM CDT

Day plus160

Day 300 since Nicholas' original leukemia diagnosis

And sadly now it is Day 4 of the relapse

NICHOLAS
Last night Nicholas' right hip was sore and today both of his legs have been bothering him. It appears to be the effect of the new leukemia. You probably have some idea how Nicholas responded to us asking about his legs, after we noticed that he was walking "gingerly" on both of them. Nicholas said, "I can still walk. See, they don't hurt me that much." He is so amazing, day-after-day and after all the old and new things associated with this awful disease he still wants us to not worry about him. Yes, he is amazing and we truly believe he is on this earth sharing love as only a loving child could show and do.

Today in the playroom at CHO, a patient undergoing chemotherapy was vomitting. Nicholas turned to the boy and used words and gestures to try to comfort & assure the boy that he would be okay.

And this evening when walking by another patient's room, Nicholas heard the little boy crying and pulled mom aside. Nicholas whispered, "Mom, can I let Dillon use one of my Teddy-Bears to help him not cry. Because he is crying in there." Nicholas then got a Teddy-Bear and knowing that he shouldn't go into Dillon's room stood by the door. The doctor then approached Nicholas and Nicholas said, "Here Dillon, you can have this" and the doctor delivered it to Dillon. And Dillon stopped crying.

NOW WHAT
Our CHO doctor (original treatment) has conferred with Stanford-LPCH doctor (BMT) and other doctors/hospitals and the common theme is:

1) Intense chemotherapy is not a viable option due to the immaturity of Nicholas' marrow (the BMT was just 160 days ago)

2) It is way too early to do another BMT based on the toxicity of the pre-BMT regimen and everything that Nicholas' body has been going through as a result of the BMT being just 160 days ago

3) Withhold some of the immunosuppressive medicines (Cyclosporine, Prednisone, and Cellcept) to trigger GVHD that also has a GVL effect, which means graft versus leukemia effect, meaning the new marrow would see any leukemia in the body as foreign and fight it. The down part of this approach is that Nicholas will have some GVHD (remember the gut, skin, and liver issues), and we PRAY that the GVHD would be just the "right' amount to get the job done. However, the GVL alone will not be enough to get rid of the leukemia so some form of chemotherapy will have to be implemented. Also, remember the "shielding" through God that we have talked about. Here too, we PRAY that Nicholas will be shielded during this process. There have been a lot of side effects expected, and a lot of them Nicholas did not experience or not to the degree expected-shielding does happen!

The third theme is the first intervention we are expecting to take, followed by some form of chemotherapy. Tomorrow we will be going to LPCH to consult with the doctors in preparation for overall treatment decisions with our CHO doctors.

WHAT IS HAPPENING TONIGHT
Based on the third theme above, tonight we withheld the Prednisone dose. As a result, the doctors want to ensure an optimum intake of fluid level as well as output of fluid. This is important to manage any breakdown of leukemia cells-although it is not expected to start happening this fast.

WHAT CHEMOTHERAPY
Remember, yesterday we talked about a new leukemia chemotherapy medicine that, coincidently, a doctor from St. Jude Hospital gave a talk about early this week in the Bay Area. Following up on this we learned that one of the doctors at LPCH previously practiced at St. Jude and in fact he has recently used the new medicine called Clofarabine.

Our CHO doctor and the LPCH doctor who has used Clofarabine will collaborate on this possibility; and we will meet with this LPCH doctor either tomorrow (Friday) or on Monday.

WHAT WE NEED
We need a miracle! We need our loving God to heal Nicholas, to heal Nicholas and cure him from this awful disease. We need Nicholas to not have to experience any more side effects or pain associated with the side effects. We do not want to see Nicholas go through any more trauma. All we need is God and your prayers.

September 15, 2005 Blood Counts
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

September 14, 2005 Blood Counts
WBC: 13.3
HGB: 11.8
PLTs: 66
ANC: 2,527*

September 14, 2005 BLASTS: 29percent

Blast: An immature cell. In leukemia, blasts refer to malignant white blood cells, which are characteristic of the type of leukemia.

1) Nicholas relapsed on September 12, 2005 wherein the peripheral blood sample drawn revealed a lot of blasts (on September 14 and 16 bone marrow aspirates were performed and the resulting percentages of blasts determined)

2) Reference: When Nicholas was diagnosed with leukemia on November 19, 2004, he had 69 percent blasts followed by the following percentages to November 29, 2004: 71, 77, 76, 36, 12, 5, 0. The first day of initial Induction Treatment began on November 22, 2004 and he was in remission on the eighth day of treatment.

 


Wednesday, September 14, 2005 2:37 PM CDT

Day plus159 (Day 299 since Nicholas' leukemia diagnosis)

UPDATE #2

FIRST PHASE OF TODAY'S BONE MARROW ASPIRATE RESULTS-NOT GOOD
Today's marrow analysis looks very similar to yesterday's peripheral results-Nicholas has relapsed meaning cancer is back. This is very, very serious because the relapse is so soon after the April 7, 2005 bone marrow transplant. It appears to be a very aggressive type of cancer. Thankfully, it is not as far as long as it could have been; 50-percent of the cells are cancerous meaning, on the positive side, Nicholas has "reserves" to combat/guard against infection and the effects of chemotherapy. Another positive way to look at this is Nicholas has a lot of good cells.

MORE CHEMOTHERAPY
Yes, this means we will need to go back to chemotherapy. However, we will have a battle to fight on this issue because they have never seen such a dramatic change in the appearance of the leukemia. (It does not appear to look like the ALL leukemia diagnosed on November 19, 2004.) And some of the protocols that could be considered would not fit Nicholas because the relapse was so soon after the BMT.

FIRST STEP
We need to get Nicholas back into remission. Today, Nicholas will begin to undergo a lot of baseline tests, including an echo-cardiogram to understand the condition of the heart because one of the medicines that may be used can affect the heart.

PREPARATION FOR THE FIRST STEP
Our CHO and Stanford-LPCH doctors are collaborating to jointly approach the process to get Nicholas back into remission. Over the next two days our CHO doctor will be putting information together to secure opinions from other doctors/hospitals, as well, on the approach to take because of the relapse so soon and aggressiveness of the cancer.

Just last night, a doctor from St. Jude held a conference in the Bay Area regarding a new drug that, perhaps, may be something that could make a difference for Nicholas. Also, because Nicholas responded so well to the first chemotherapy treatment plan, it will be considered. Remember, originally Nicholas went into remission within 8 days of being diagnosed.

Also, there is lead transplant doctor in Vancouver that we will reach out to for consultation.

So, the preparation for the first step requires a lot of collaboration, information sharing, and of course the pre-first step is turning to our loving God. A miracle can certainly happen!

NEXT STEPS
By this weekend the doctors need to be prepared with input from other doctors/hospitals regarding a protocol to follow or a process to follow. So by this weekend a decision needs to be made to get Nicholas into remission, and that intervention needs to immediately follow.

YOUR CONTINUED PRAYERS AND VOICES
Thank you for all your prayers and voices directing love toward Nicholas. Your prayers and voices can and will be heard-and love will flow from you to Nicholas.

UPDATE #1

BONE MARROW
The bone marrow aspirate and biopsy went smoothly. The doctor was able to pull out a lot of marrow and large sample for the biopsy. Also, they were able to use very small band-aids so we are thinking that Nicholas should not be in the type of pain he experienced last Friday and over the weekend.

ADMITTED INTO CHO
Admitted into CHO at 12:35 p.m., room number 5309. Nicholas did not want to be admitted. This was the first time that he actually "cried" about being admitted (although it is certainly okay to cry about being admitted at any time). Once we got to his room, saw familiar nurses and the play room, he was okay. Just okay, as it is not home.

NOW WHAT
We will be talking with the doctors shortly regarding the immediate plan, recognizing that the results from the bone marrow aspirate will not be known until tomorrow.

Also, marrow sample will be used for Cytogenetics (remember, these results mid-December 2004 revealed Hypodiploid and was the reason for the BMT, and a sample is being sent for Chimerism (remember, determines the percentage of donor cells at work).

WE ARE PRAYING FOR HEALING AND A CURE
Father, in the Name of Jesus, we confess Your Word concerning healing. As we do this, we believe and say that Your Word will not return to You void, however, will accomplish what it says it will. Therefore, we believe, in the Name of Jesus, that Nicholas Colby Gilbert is healed according to 1 Peter 2:24.

We confess the Word of God abides in Nicholas Colby Gilbert and delivers to him perfect soundness of mind and wholeness in his nature in his immortal spirt even to the joints and marrow of his bones. Your Word is medication and life to his flesh, for the law of the Spirit of life operates in him.

 


Tuesday, September 13, 2005 4:22 PM CDT

Day plus158

NOTE: SONG OF LOVE
If your speakers were on when you just opened Nicholas’ CaringBridge site, you are listening to Nicholas’ song of love in the background. Please refer to the September 7, 2005 journal for the words to the song and information about the caring organization/people who created Nicholas’ song. Profile-type information on Nicholas was provided enabling Nicholas’ song of love to be created.

QUICK UPDATE:

RESULTS OF TODAY’S LAB WORK
The peripheral blood work today at CHO reveals blasts (malignant cells) like Stanford saw yesterday. The blasts do not appear to be like those when Nicholas was first diagnosed—something is going on. At this time the doctors do not know what to make of it, and said to be prepared for the worst.

NEXT STEPS
Tomorrow morning Nicholas will go to the operating room for another bone marrow aspirate and biopsy of the marrow. We were told to be ready for Nicholas to be admitted into CHO tomorrow after the procedures. It will then be at least 24 hours for initial bone marrow aspirate results.

NICHOLAS: HIS JOY, HIS LOVE, HIS PASSION
Nicholas’ approach to all of "this stuff" has been amazing—here we are using the “amazing” word again—truly amazing. The joy he brings to our hearts through being incredibly aware and the thoughtful things that he says. The love he continually shows for others (he called K.J.—you remember K.J., Nicholas’ RMH neighbor—yesterday, twice today, and at the close of those conversations Nicholas said, “I love you” which is typical in his relationship with others. Others that are younger than Nicholas, about the same age, and older.

The passion for displaying joy and loving everything around him touches the hearts of family, friends, and new acquaintances. We are so fortunate to be blessed with Nicholas, and so thankful our loving God is in operation. His omnipotence, omniscience, and omnipresence are at work and we call out to God in thanks. And we ask for understanding, and we ask for Nicholas to continually be with us in full strength—healed from disease and able to continually express all that God asks.

September 13, 2005 Blood Counts:
WBC: 9.8 (up from yesterday’s 5.5)
HGB: 11.6
PLTs: 50
ANC: 1,156

 


Monday, September 12, 2005 5:44 PM CDT

Day plus157 (Day 297 since Nicholas’ leukemia diagnosis)

UPDATE #2, at 9:55 PM CDT:
LAB WORK AT CHO AND PREPARED FOR NICHOLAS TO BE ADMITTED INTO CHO
Tomorrow (Tuesday) morning we will be at CHO for peripheral blood draw to analyze for blasts, and full chemical panel lab work. We were asked to be ready for Nicholas to be admitted into CHO following this blood work. And another bone marrow aspirate will be the next step. After that, we do not yet know what is next.

Friday’s bone marrow aspirate result is “reading out as not leukemia;” however, we were given two possible explanations:
1) …was in the process of a relapse and over the weekend it picked up and spilled over into the peripheral blood
2) “Focal” relapse, meaning that although the bone marrow aspirate sample taken was “reading out as not leukemia,” leukemia is present somewhere in the marrow. Therefore, another bone marrow aspirate will be performed and samples drawn from multiple sites.

MIRACLES DO HAPPEN AND WE PRAY THAT NICHOLAS’ AMAZING WORK CAN CONTINUALLY TOUCH LIVES
And we PRAY that Nicholas is cured, healed of any type of life-threatening disease because he truly blesses lives with his God-given love and touch.

UPDATE #1:
WE ARE SO FRIGHTENED, SCARED

OH FATHER, WE HAVE ALWAYS NEEDED YOU AND WE NEED YOU, WE NEED YOU NOW!

EVERYONE, PLEASE, PLEASE POWERFULLY PRAY WITH US NOW AND STRONGLY—THE DOCTORS SEE BLASTS IN NICHOLAS’ BLOOD WORK
We just returned from Stanford and received a call that the peripheral blood work (from his central line in Nicholas’ chest, Broviac) drawn this morning reveals blasts—the leukemia is coming back.

We have not received Friday’s bone marrow aspirate results from Children’s Hospital Oakland yet, and our Stanford doctors have talked with them. Our Children’s Hospital Oakland doctor should be calling any moment, and we have so many questions.

PLEASE, PLEASE PRAY WITH US and loudly cry out for help for Nicholas. Nicholas has done everything right, he is amazing, he is loving, he is so caring, and he is everything to everybody! We need our Father God, and we need your prayers.

September 12, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Sunday, September 11, 2005 11:56 PM CDT

Day plus156

APPOINTMENT TOMORROW @ STANFORD-LUCILE PACKARD CHILDREN’S HOSPITAL
We are anxious to receive the final results of Friday’s bone marrow aspirate, discuss the high LDH numbers (please refer to the September 8 journal), discuss the very low Platelets level, and an overall conversation about next steps. And draw labs to find out current levels. These things are planned to take place tomorrow (Monday).

And we are, once again, so grateful and give thanks to God for the way Nicholas navigates all of the things in his path to a cure. And grateful for your continued prayers—I remember the very tough times over the last 296 days, and your prayers/voices clearly being heard and answered! Nicholas’ joy is a testament.

FUN DAY, BACK NOT AS SORE ALTHOUGH PAIN STILL LIMITS MOVEMENT
What a fun day: playing outside, football, baseball, and with a foam-ring device that shoot the rings horizontal or vertical up to 30 feet. These rings are about 2 inches in diameter and we made up lots of games, for lots of fun. Nicholas especially enjoyed one game where he was like a combination super hero/matrix character contorting his body to avoid the foam rings from hitting him.

Wow, although Barry Bonds is returning to action tomorrow, Nicholas was in full swing—literally—today and hitting some homeruns. And football today, well we watched about 15 minutes on TV and enjoyed ourselves hiking the ball, running routes (well, walking routes for Nicholas), and tossing the ball. And to top this fun day off, the twin girls from next door came over and the three of them had a lot of indoor fun together.

BECAUSE OF HIS LOW PLATELETS ON FRIDAY, we were very cautious with his activities. Limiting him so that he was not jumping, running, or bumping…

September 11, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, September 10, 2005 11:59 PM CDT

Day plus155 (Day 295 since Nicholas’ leukemia diagnosis)

GOOD DAY, HOWEVER, NICHOLAS’ BACK IS SORE FROM THE BONE MARROW ASPIRATE
Nicholas had a good day, even though he was slowed by not wanting to move too much because his back was sore from the bone marrow aspirate. The previous bone marrow aspirates did not slow him up at all, as after those he was up and about, running and playing. However, today, the area of his back where the aspirate was performed was still bleeding slightly because of the very, very low Platelets level.

Nicholas did help, somewhat, dad wash the car and when not helping he was sitting down outside watching and talking with dad and neighbors. (First time we washed the car together in over 6 months—we enjoy the fun of playing with the water as we wash the cars.)

Calling grandma Charlotte and grandpa Floyd was fun for Nicholas as he was guessing what they were doing, receiving grandma Eva’s call was a treat for Nicholas to hear her wishes for him, always talking with aunt Peggy is fast paced because Nicholas rapidly talks about the things that he likes, and calling his former Ronald McDonald House mate, K.J., was definitely a hi-light for Nicholas this morning. Nicholas really enjoys staying in touch with K.J.

Mom and Nicholas spent time together on the computer and this too was a hi-light for him. However, every moment with mom is truly a hi-light for Nicholas—mom is Nicholas’ warm, comforting, and beautiful star that brighten his world!

Fun at the dining table is always a hi-light for Nicholas with his brothers. The words and expressions Nicholas uses are an amazing combination of what he hears from mom & dad, his brothers, the hospital staff, and of course the other things that he hears, reads, or sees. And it is Nicholas’ awareness and understanding of the use of words that is truly amazing—he hears and applies words and expressions so appropriately and at times surprises us because of the high level of their use.

PRAYING AND PUSHING FOR NICHOLAS’ CURE, AND AN OVERALL CURE FOR THESE LIFE-THREATENING DISEASES
It’s just awful to experience this leukemia disease and the BMT process, in terms of it being a hope for a cure and not an immediate cure. It’s awful constantly having to focus on moment-by-moment care and we are thankful to find ways to be able to focus on these moments. We are, of course, thankful for the hope—praying, giving thanks that Nicholas is God’s perfect son.

And we pray for cures for all of these life-threatening diseases. We keep thinking about the babies and kids afflicted with these diseases that just hit, fall on their lives. It’s so sad to see and experience.

September 10, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, September 9, 2005 6:57 PM CDT

Day plus154

QUICK UPDATE ON TODAY’S UNEXPECTED PROCEDURE (referring to yesterday’s journal)

BONE MARROW ASPIRATE: Final results of the bone marrow aspirate are not in; however, our CHO doctor said it looked good in that it did not present itself as a relapse (leukemia). This provides some comfort right now and on Monday when we are at Stanford-LPCH, our CHO doctor will be talking with our LPCH doctor with the final results (including a discussion on the last bone marrow aspirate performed at LPCH to assess how things were showing up then and how things are showing up now). Thank You, Lord!

The marrow did reveal a lot of red blood cell activity that could be caused by some of the medicines—not indicative of relapse (leukemia).

PLATELETS: During today’s procedure, Nicholas was bleeding more than usual so heavier bandages were used. Lab work was analyzed to re-check his Platelets because of the bleeding. Today’s Platelet level is 45, down from the 58 yesterday, and still very low out of range (target range 150-400).

Our CHO and LPCH doctors talked today about the Platelet issue and tonight we will not be administering the Gancyclovir that could be causing the Platelet drop. And, of course, the Gancyclovir is part of the intervention relative to the CMV that Nicholas had on August 18, 2005—so Gancyclovir is administered to help eliminate the CMV and on the other hand it could be negatively impacting the Platelets (another type of roller coaster effect Nicholas is experiencing).

On Monday a decision will be made as to what to do about the Gancyclovir that currently is being administered 5 times per week.

VITAMIN K & CLOTTING FACTORS: As a quick gut check, our CHO doctor ordered additional blood work to check Nicholas’ vitamin K level and his blood clotting factors to make sure nothing is going on there. We should hear on Monday as well.

We are to watch for any signs of bleeding or bruising cropping up and will need to get to the hospital for further follow up should anything arise prior to our visit at Stanford on Monday.

NICHOLAS: He is simply amazing—the way he is navigating through all of this medical stuff in terms of maintaining high spirits; being aware of what is happening around him and still caring so much about others being happy; loving people, places, and the things that he does while on this roller coaster effect of the leukemia and bone marrow process.

September 9, 2005 Blood Counts:
WBC: 5.1
HGB: 11.0
PLTs: 45
ANC: NA

 


Thursday, September 8, 2005 6:39 PM CDT

Day plus153

VERY EMOTIONAL AND SAD DAY—WRETCHED WORDS STILL PIERCING OUR HEARTS
Today as Nicholas was receiving IVIG (immune booster) and Pentamidine (preventative medicine for a certain type of life-threatening pneumonia that commonly affects immune compromised patients) we heard the calm yet wretched words from our doctor, “I need to tell you something.” Mom & dad both recalled those words back in mid-December 2004 (a month after the leukemia diagnosis) when the results of those words were that Nicholas’ leukemia had a rare chromosome abnormality labeled as Hypodiploidy. And Nicholas’ prognosis was dramatically changed—our best chance for his cure was going straight to a BMT.

Remember, August 18, 2005 was the day Nicholas was admitted into CHO for about 12 hours to receive treatment because we had just learned that he was positive and relative numbers were high for Cytomegalovirus (CMV). Since then Nicholas’ Lactic Dehydrogenase (LDH) numbers have been going up and dramatically high out of range. The LDH is linked to the liver function. The target range is 100-500 and over the last few weeks they have been: 786, 1144, 1058, 1271, 1297. These high LDH numbers coupled with the trending down of Nicholas’ Platelets, which today are down to 58 (target range 150-400), is cause for concern. Our CHO doctors have conferred with our Stanford-LPCH doctors.

Other liver levels have been trending up and out of range, high, as well: SGOT/AST and SGPT/ALT.

WHAT NOW, BONE MARROW ASPIRATE TOMORROW
Nicholas will go to the operating room tomorrow for a bone marrow aspirate so an analysis of the fluid can rule out a relapse. The thought of this is almost too much to bear—please PRAY that this test will indicate that Nicholas is still in remission and that the reason for the high LDH level is due to all the heavy medicines he has been on to treat the CMV.

NICHOLAS ENERGY, SPIRIT, JOY, LOVE…IS STILL AMAZING
As mom was explaining this latest news to our third son, Matt, Nicholas said, “They are making sure the bad blood doesn’t come back.” We know we are blessed; Nicholas is simply amazing! And with his demeanor and some level of understanding about all of this, Nicholas makes the situation easier on one hand, and harder on the other hand because his love and joy is seen everywhere we look. And we know that God’s love is at work and that He is in control—and through Him mom & dad will find strength.

NOTE: NICHOLAS’ SONG OF LOVE
Over the next couple of days we will try to get Nicholas’ Song Of Love operable (please refer to yesterday’s journal for details on this).

September 8, 2005 Blood Counts:
WBC: 7.5
HGB: 11.8
PLTs: 58
ANC: 1,560 (see above *)

 


Wednesday, September 7, 2005 11:44 PM CDT

Day plus152

GOOD DAY—please click on View Photos
Nicholas had a good day and tonight he was entertaining the twins from next door. Please click on View Photos to see them dancing.

DAY HOSPITAL TOMORROW (THURSDAY)
Tomorrow we will be at CHO for treatment relative to the CMV, and discuss the issue regarding Nicholas Platelets that have been trending down and are very, very significantly low, and out of range.

SONG OF LOVE—please listen to this personalized song
A song of love about Nicholas has been created by The Songs of Love Foundation (The medicine of music, www.songsoflove.org), a non-profit organization that creates original personalized songs, free of charge, for children with chronic or life threatening illnesses.

In a few days we should have the song playing in the background of this CaringBridge site.

In the meantime, here it is for you now. Please go to Links below and click on the first link, Nicholas' Song of Love. (Words, music, and vocals by Thomas Jones.)

Here are the words to the song:

I know a boy who cares about others
He's thoughtful and he's kind
He's really into artwork
His painting is so fine

He likes lakes and oceans
And galloping on the beach
He likes snorkeling, dolphins, and swimming
He will spend his time on each

Chris and Tim and Matt are his brothers
Joey and Jessica are his friends
Baby Julie and William and Trenton
And Amanda, K.J. and Neda we'll mention

Nicholas Colby Gilbert
There is only one
How we like to be with him
Playing and having fun

He swings on swings and plays basketball
He likes Peter Pan and Spiderman as well
Video games keep him occupied
As if you couldn't tell

Chris and Tim and Matt are his brothers
Joey and Jessica are his friends
Baby Julie and William And Trenton
And Amanda, K.J., and Neda we'll mention

Nicholas Colby Gilbert
There is only one
How we like to be with him
Playing and having fun

Thanks for listening, and keeping Nicholas in your prayers!

SPECIAL NOTE
Soha and Reda, thank you so much for your time, energy, and Reda for your team helping with the technical aspects toward enabling us to share the song with others.

September 7, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, September 6, 2005 11:23 PM CDT

Day plus151

MEDLEY OF FUN
Nicholas and mom went out an had an incredible walk at a Lafayette park, enjoying the scenery, pigeons on the side of a hill, playing football catch, and tossing a Frisbee. Remember, he is still on Prednisone (steroid, although we have been tapering it down every Thursday since August 18) so you know he had a snack at the park. Well, a snack would be fitting anyway.

PLATELETS ARE STILL DROPPING
Nicholas’ Platelets are now at 60 (please see August 29, 2005 journal for information about this concern).

September 6, 2005 Blood Counts:
WBC: 6.4
HGB: 12.1
PLTs: 60
ANC: NA

Cyclosporine level in range: 306

September 2, 2005
WBC: 5.5
HGB: 11.7
PLTs: 66
ANC: 1,760

Cyclosporine level in range: 248

 


Monday, September 5, 2005 10:31 PM CDT

HOW LONG HAS IT BEEN?
Day plus150 (150 days since the BMT) and Day 290 since Nicholas’ leukemia diagnosis.

METICULOUS AT DRAWING AND COLORING
Well, the transformation from just coloring to meticulously coloring within lines and choosing just the right color gradually occurred over the past several months. Nicholas has always enjoyed artwork—painting, coloring—however, he seemingly has taken a critical eye toward his artwork. Well, he is enjoying it and having fun.

(Please click on View Photos to see a picture of Nicholas doing artwork and pictures from his cousin’s sleepover last night at our home.)

NICE DAY, SHORT EVENING DRIVE
Nicholas had a nice day! He was feeling fine and just had an overall good day. This evening we took a very short 10-mile round trip drive on back roads from Lafayette to Alamo. Nicholas was spotting “interesting” mailboxes. He spotted a mailbox that looked like 101 Dalmatians, an American Flag, and geometric designs.

NEXT APPOINTMENT
Nicholas' next appointment for a check-up and Day Hospital treatment is Thursday, September 8. He will receive IVIG (immune booster) and Pentamidine (preventative medicine for a certain type of life-threatening pneumonia that commonly effects immune compromised patients).

September 5, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Sunday, September 4, 2005 11:02 PM CDT

Day plus149

NICE DAY AND NICE EVENING
What a difference a day makes. Nicholas awoke this morning feeling just fine. He had a good day and evening without any complaints of pain of uncomfortable feelings.

He was fascinated with science today saying, “I want to do science today.” So mom accessed a science program on the computer and he worked on his science—we love seeing him continually reaching out to expand and learn.

Today was his cousin Mikayla’s birthday and he surprised her by showing up at her house for a very short visit. And she surprised Nicholas by coming over for the evening and spending the night. What a beautiful sight: talking, playing, laughing, and seeing Nicholas’ glow & smile. The type of glow & smile we remember from him enjoying friends spending the night. Oops, a movie and popcorn was a highligt for them as well.

September 4, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, September 3, 2005 11:41 PM CDT

Day plus148

NICE DAY, NOT SO NICE EVENING
Leisurely Saturday afternoon drive to Sausalito, across the Golden Gate Bridge, down Lombard Street (crooked road) in San Francisco, and back to Lafayette. Seeing the bay, the ocean, surfers, boats, fog rolling in, more ocean, people, places, and just “things” helped the afternoon trip be a nice, joyful time for Nicholas—even though we spent the entire time in the car.

NOT SO NICE EVENING
Late evening, Nicholas’ complained that his stomach was bothering him and he was not feeling well. Shortly afterwards, he vomited and at this moment he still is not feeling well. We PRAY and watch over him as every moment at times torments us because of this awful disease—over this process that we know is long, and sometimes leaves us feeling lonely and so afraid. Not lonely for love that our Father provides, and not lonely for love that you provide. Feeling lonely at times because this disease is awful, always reminding mom & dad that we are not in control, not able to protect and keep Nicholas safe from harm.

And while afraid we are reminded, reminded that our Father, God’s, love has never abandoned us. Reminded and feel that His love comforts us—we are so grateful for His presence and are comforted to know that Nicholas is His perfect child.

September 3, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, September 2, 2005 11:58 PM CDT

Day plus147

ANOTHER GOOD DAY and we are really enjoying them. AND while being so thankful for these days, it is still so hard every moment knowing what Nicholas is going through. Hard living through this “leukemia and bone marrow stuff” as part of our lives, every day and every moment. Hard mentally to administer the various medicines mornings and nights, because of the realization about this awful disease that Nicholas is fighting. Hard mentally to administer the medicines because of their side effects.

AND while it is hard to do all these things we are absolutely grateful that Nicholas’ spirit, joy, passion, love, and overall amazing way of going through it all without any complaints could not be any better. AND mom & dad are so grateful for the strength—although it is very, very tough to be so strong through it all—and grateful that through God we are physically able to push through it all—although physically and mentally we become drained. In those draining moments our faith shines light on love and love generates EVERYTHING we need and need to be to help see Nicholas through it all!

MORE INTERESTING COMMENTS FROM NICHOLAS as mom was walking by him playing today. Nicholas said, “Mom when can I have restaurant food?” Mom said probably in a couple of months. Nicholas then said, “When can I go into crowded places?” Mom said probably in a couple of months, however, they have to test your…“ (Nicholas then finished mom’s sentence) “…my immune functions.” Mom laughed! Then, Nicholas said, “Well I know that’s important!”

NICHOLAS SHOULD BE STARTING HOME INSTRUCTION (SCHOOL) next week through our Lafayette School District. With restrictions still in place, it will be awhile before Nicholas can participate in school with other kids—however, we will create ways to keep him engaged with other kids and find ways for him to enjoy the sights and sounds of play that we know come from kids at play.

September 2, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, September 1, 2005 10:49 PM CDT

Day plus146

GOOD WEEK ENDING IN SOME MORE GOOD NEWS
Nicholas does not need to go to CHO Day Hospital tomorrow, Friday, for IV Cytogam. With his initial response to the medicines, the protocol for CMV calls for him to go directly to one day every other week now, alternating weeks with IVIG, and at home Nicholas will receive IV Gancyclovir once per day versus twice per day. So tomorrow he can start his long holiday weekend without a hospital visit—yeah!

NICHOLAS’ CONVERSATIONS CAN BE VERY INTERESTING
The pump mom was given to infuse Gancyclovir into Nicholas via his Broviac (central line in his chest), as part of the CMV treatment is attached to a rectangular metal box. Aside from being awkward for Nicholas to be mobile while the pump is attached for 2 hours a day, it takes mom several steps each time to get the medicine ready with tubing and hooking up the medicine—let’s just say it’s a bit cumbersome.

Mom received a phone call from the home health care agency stating that they had approval for the medicine to be in a ball, called an eclipse, and requires no pumps and no tubing for mom to hook up. It’s self contained—very simple and light to carry.

While mom was receiving the news she bellowed, yes! WHAT NICHOLAS SAID: After the call Nicholas asked mom why she bellowed, yes. After mom explained, Nicholas said, “Well, I just want my Platelets to be up.” Mom asked what do you know about Platelets? Nicholas said, “Well, I can’t wrestle and play a lot of things while my Platelets are low.” And mom laughed. Basically, while his Platelets are low Nicholas needs do to activities that keep him on the ground to avoid falling and getting cut or hurt.

September 1, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

Sunday, July 31, 2005 11:45 PM CDT

Day plus114

GOING HOME IN FIVE (5) DAYS We’re anxious for the conversations our doctors at Stanford-LPCH and Children’s Hospital Oakland (CHO) will be having this week, toward an examination at CHO planned for Friday and being able to go home Friday.

SOOTHING SUNDAY and uneventful medically, other than the Cyclosporine, Prednisone, Amlodipine, and other medicines administered via mouth in the morning and at night. We give praise to our loving God for Nicholas’ sustained energy, enthusiasm, and joy. And we PRAY for all the kids undergoing treatment and care—praying for their comfort and healing.

CLINIC APPOINTMENT TOMORROW (MONDAY) and all blood and chemical levels will be checked as we continue the path toward the plan to go home on Friday. While we recognize that the roller coaster still continues, we absolutely expect to go home Friday and are prepared to push, push, and push along with our continued praying, praying, and praying for Nicholas’ full recovery now.

Why not, why can’t Nicholas be healed and cured now? Why can’t he be off the roller coaster that he has experienced? While mom & dad are full of happiness and joy as we plan to go home, while we soak in all the happiness and joy that is encamped around us right now, we are full of “why not this and why not that.” And, here too, we are reminded,…“Be still and know that I am God.” And knowing God, really knowing God, allows us the freedom to live today and not live in the “why not this and why not that!”

July 31, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA


Saturday, July 30, 2005 11:23 PM CDT

Day plus113

GOING HOME IN SIX (6) DAYS.

GREAT SATURDAY as we realize that this is the last weekend scheduled to be away from home for this BMT segment of Nicholas’ journey to being cured. The day was even better with visits from two families from Nicholas’ Montessori school. He was very, very excited to see them—when he heard the first family was here he said “Amanda, Amanda, Amanda;” and when the second family arrived he said, “Trenton is here, Trenton is here.” We all enjoyed eating together, playing, talking, and just making life seem normal.

After they left we asked Nicholas what would he like to say about the day and he replied the following on what he wants those families to know: “Thank you for coming, thank you for playing with me, and thank you for a wonderful day.”

YOU, AND YOU, AND YOU… ARE SO AMAZING TO US
We regularly say that we are blessed and today was another testament to the many blessings that impact our lives. Through family and friends that pray for Nicholas, see and play with him; pray for mom & dad, see and talk with us; and connect with us in many different ways let us know that we are loved. And we know that life has all of you so busy with your family, which makes your involvement with us during this long journey so amazing—thank you all so very much!

July 30, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA


Friday, July 29, 2005 11:32 PM CDT

Day plus112

GOING HOME IN SEVEN (7) DAYS or after 7 sleeps as Nicholas puts it. Kaeli (recent RMH guest and BMT patient), her brother Seamus, and mom Theresa have become amazingly important in our lives. Although Kaeli left the RMH a few weeks ago, her family continues to visit Nicholas and mom & dad regularly. Watching Nicholas, Seamus, and Kaeli play or just hanging out together you would see “friends” with a seemingly long-standing connection. It’s amazing how the short time together at LPCH and the RMH generated a bond, friendship, and love.

FAMILY, FRIENDS, AND NEW RELATIONSHIPS have made a blessed difference in our lives. LPCH and the RMH has been our home the last four (4) months and the other patients/RMH guests and their families have become our neighbors. Kids and parents from all over the United States—including Hawaii and other Countries—including Jordan, have developed relationships via a common bond. The common bond, of course, unfortunately has been cancer. Parents with kids who are no longer at LPCH or RMH call us from their homes or stay in contact via telephone calls and respective websites. What we are saying is, there can be so many wonderful things in all of our lives through connecting and relationships with anyone, from anywhere, and at any time. Thank you, thank you, and thank you—God’s love is amazing!

THROUGH ADVERSITY, this “leukemia and bone marrow stuff,” blessings in our lives have flowed from the relationships above and from the INCREDIBLE MEDICAL STAFF MEMBERS at Children’s Hospital-Oakland and Lucile Packard Children’s Hospital-Stanford. We know we are blessed and give thanks. And Nicholas, he is our sunshine and we are thankful for all the many things of love, passion, and patience that he has taught us. And our other three boys, Christopher, Timothy, and Matthew, they are pillars of strength enabling mom & dad to stand in full strength for Nicholas—we lovingly thank them.

PLEASE, PLEASE CONTINUE WITH YOUR LOVE AND PRAYERS as Nicholas’ journey does not end with coming home next Friday. It’s a segment or stop on this journey Nicholas calls “all this leukemia and bone marrow stuff.” Or putting it in a different way, it’s like halftime of a game—celebrating accomplishments and strategizing to overcome challenges in front of us.

July 29, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, July 28, 2005 10:29 PM CDT

Day plus111

GREAT NEWS—CELEBRATING THE MOMENT.
The additional Chimerism test results from the July 25 bone marrow aspirate have been completed and his T-Cell percentage came back up to 96 percent. And the overall percentage is at 98-99 percent. This is GREAT! Nicholas’ doctors are very pleased with these results. (If necessary, please refer to July 18 journal under Journal History for details about the percentages.)

As mom & dad take a deep breath, we let out a sigh and have happiness and joy circling all around us. The joy is so wonderful that it seemingly lifts us into the air—we feel light as a feather and have nothing except bliss flowing through our bodies! We are so grateful for your connection, love, and prayers. And as we said before, our love for God is unchanging, as the numbers, in any direction, would not sway that love because knowing our loving God calms our fears into trusting His love.

Note: As we celebrate the moment, we make it very clear to Nicholas that he has always been doing the right things, so that he does not think that he has anything to do with any numbers that are not good.

CYCLOSPORINE AND OTHER CHEMICAL LEVELS
Here too, Nicholas’ doctors are very happy with his levels. His Cyclosporine level is in range at 298, liver enzymes continue to improve, and kidney functions are all in range. Nicholas gets to remain free from IV hydration and other IV medicines so he is free from being hooked up to "stuff."

No changes are being made to his medicines {Cyclosporine and Prednisone-the steroid (that are helping to manage the GvHD), and the Amlodipine (for hypertension relative to the steroid that has a side effect of increasing blood pressure)}.

NEW ITEMS ON HIS DIET
Pepperoni pizza and orange juice are now on his diet. Remembering the restaurant limitations discussed in the July 17 journal, the pizza has to be made fresh at home or store bought—frozen—and cooked at home.

GOING HOME NEXT FRIDAY IS THE PLAN—MORE GREAT NEWS AND REASON FOR ANOTHER CELEBRATION
If all goes as planned next Friday we will be going home. Here is a snapshot of the plan:
1) August 1 (Monday) exam at Stanford and all levels are re-checked,

2) Followed by Nicholas’ Stanford doctors talking with his Children’s Hospital-Oakland (CHO) doctors about transferring regular care to CHO with BMT follow up remaining with Stanford

3) August 4 (Thursday) appointment at Stanford’s Day Hospital for IVIG (planned boost to the immune system that he has been receiving as part of the BMT protocol)

4) August 5 (Friday) mom & dad meet and are reacquainted with Nicholas’ oncologist at CHO, and Nicholas will be examined. (Please refer to the July 8 journal under Journal History for details about the examinations at CHO.)

5) …And we go home August 5 (Friday) after being away for over 4 months!

July 28, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, July 27, 2005 11:10 PM CDT

DAY PLUS110 (DAY 250 SINCE NICHOLAS’ LEUKEMIA DIAGNOSIS)
Today is the 250th day of Nicholas’ leukemia journey, 110th day since his BMT, and his 5 ½ year birthday. We paused and celebrated, giving thanks for his strength and playfulness during his continued fight.

CLINIC APPOINTMENT TOMORROW AND POSSIBLY THE CHIMERISM RESULTS
Tomorrow we have an early morning clinic appointment for labs (including Cyclosporine) and a check up. We’ll follow up on chemical levels to ensure they are in range and he can continue to be off IV hydration. The GvHD of the skin will be assessed (only traces are present). We are dealing with the Cyclosporine issues, and anxious to put the Chimerism issue out of our minds—it is consuming so much of us mentally and physically. It’s possible the Chimerism test results will be available tomorrow.

If not tomorrow, it should be Friday that we learn the Chimerism results. And, we are not leaving God’s footsteps, reminding ourselves what He has said—be still and know that I am God. With his doctors, we will then plot the next stage of Nicholas’ journey. We have seen some amazing blessings—the way Nicholas has navigated through all of “this leukemia and bone marrow stuff—and we PRAY for continued blessings and for Nicholas’ unfolding story to help others. As it helps us better realize “love.”

July 27, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA


Tuesday, July 26, 2005 11:59 PM CDT

Day plus109

UNEVENTFUL MEDICALLY and living it up as well as waiting for the Chimerism results. However, we are PRAYING, and focusing on healing regardless of what the numbers suggest because Nicholas is Nicholas, your prayers and our prayers matter, and God's omnipotence, omniscience, and omnipresence is at work. Nicholas had a full day of playing throughout the RMH.

TENNIS STAR VENUS WILLIAMS came by the RMH for a visit. Because Nicholas is in the immune wing he had to stay inside and could not visit Venus face-to-face. (Please click on View Photos to see Nicholas, well the back of him, waving to Venus.)

July 26, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, July 25, 2005 10:33 PM CDT

Day plus108

TODAY’S BONE MARROW ASPIRATE procedure went well. We were told the marrow looked good; of course, the lab work will determine the results. As stated in yesterday’s journal, we are expecting Chimerism results on Friday. PRAYING AND PRAYING that the percentage of donor cells is at least 96percent at this time.

Note: The anesthesiologist team has the dose down so well as it pertains to Nicholas, that by the time he comes out of the operating room and arrives into the recovery room he wakes up without any side effects.

CHEMICAL PANEL LAB WORK LOOKED GOOD. Kidney function is good with all factors in range. The liver function is looking better with one factor still out of range-high, however, it continues to be coming down. Nicholas’ magnesium was low last week and we began supplements—the numbers today revealed that it is back in range.

BUT THE CYLCOSPORINE LEVEL continues to be a struggle to keep in range. Today’s level was at 220, low and out of range. The doctors are not making any adjustments to the Cyclosporine dose or Prednisone dose (we, again, want to begin tapering this steroid down). Although the GvHD to the skin, on his ankles, had been clearing up, it was present on his ankles today. On Thursday we will do more lab work to check the Cyclosporine level and determine next steps.

NICHOLAS’ QUOTE OF THE DAY: Remember, Nicholas was not able to eat or drink anything beginning Sunday night at midnight until after his procedure today. As mom & dad were getting everything ready to go to the hospital, mom had poured a bowl of Cheerios. Now, she was not trying to hide this from Nicholas, however, Nicholas woke up and said: “I hear someone is busted over there. Next time, please don’t try to sneak because I can here you.”

July 25, 2005 Blood Counts:
WBC: 4.7
HGB: 11.4
PLTs: 146
ANC: 2,801

 


Sunday, July 24, 2005 11:46 PM CDT

Day plus107

RELAXING DAY as Nicholas, mom & dad had a quiet morning, naps together, and a casual drive this evening viewing the countryside and sunset (within 30 minutes from the hospital of course). Mom and Nicholas played various ball games this morning and dad & Nicholas had our regular dance to the song, Dance With My Father.

TOMORROW’S (MONDAY) PROCEDURE. So here we go again with another bone marrow aspirate with a sample for the Chimerism test (based on news in the July 18 journal). The results are scheduled to be back by Friday (a lot faster than normal). Also, marrow sample will be sent off for another Cytogenetics analysis to confirm there are still no hypodiploid cells (reason for the BMT). We are not sure when those results will be back. Note: The Cytogenetics results from the July 7 sample was normal—great.

NICHOLAS HAS MORE THAN DONE HIS PART since November 19, 2005, when he was diagnosed with leukemia and a month later with a need for a BMT.

Nicholas has constantly been patient with the ups and downs of the disease and the chemotherapy/medicine challenges. His love for everything and everybody has been amazing. The sunshine he illuminates in our lives, and in the lives of others has been equally amazing—nurses, doctors, patients, parents of patients, family, friends, and new people that he meets. WE THANK GOD FOR THE BLESSINGS HE HAS GIVEN US, and for everything our little sunshine gives us. WE PRAY that the Chimerism test reveal that the percentage of donor cells go up and up and reach 100 percent—and remains at 100 percent. WE PRAY for complete healing, and recognize all the love and joy that we have been blessed with throughout this journey. (If necessary, please refer to the July 18, 2005 journal entry for background.)

WE ARE EXPECTING TO GO HOME THE FIRST WEEK OF AUGUST. We have been away from home since March 31 so going home after all this time will, strange to say, be with mixed emotions. We say mixed emotions based on the care that has been needed, the great care received, and of course just wanting to be HOME.

PLEASE PRAY WITH US SOME MORE, SOME MORE AFTER THAT, AND MORE AFTER THAT—thank you so very, very much.

July 24, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, July 23, 2005 11:59 PM CDT

Day plus106

FRIENDS from home, school, LPCH/RMH made for a wonderful day at the RMH. We are so grateful that today was an uneventful-medical day (no appointments, no surprises, no complaints...). And we are so grateful that love fills our days and nights.

TOMORROW (SUNDAY) will be like every day—praise and give thanks for the many blessings in our lives. And Sunday evening will prepare for Monday's lumbar puncture and bone marrow aspirate. Sunday night beginning at midnight we will not be able to give Nicholas anything to eat or drink as part of the preparation for Monday's procedure. (Sunday night's journal will include more about next steps.)

July 23, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA


Friday, July 22, 2005 11:47 PM CDT

Day plus105 (Day 245 since Nicholas’ leukemia diagnosis)

CALM, QUIET DAY and although we are anxious to have the additional bone marrow aspirate performed and results known, we pause to just appreciate the moments shared, moments experienced, and moments to come. While it’s been so very long, 105 days since his BMT, 245 days since the diagnosis, we have never gotten comfortable with this awful set of moments and experiences. And not just the awful things that Nicholas has experienced, also the awful things that so many beautiful kids from all over have experienced and experience today.

We are thankful for these calm, quiet days primarily because for the day, Nicholas doesn’t seem to have a worry on his mind. And he shouldn’t have to worry—he should live, love, learn, play, smile, laugh, and teach. And we wish you could experience these kids with these live-threatening diseases. These kids amazingly love, learn, play, smile, laugh, and teach us many lessons on how to live in the moment and to take moments to just live!

Have a great weekend and know that by you reading this journal, you are taking a moment to think about others and that feels so good. Thank you for helping Nicholas and so many other beautiful kids to smile. You, certainly, make mom & dad smile.

July 22, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA


Thursday, July 21, 2005 11:02 PM CDT

Day plus104

TODAY’S EXAM AND CYCLOSPORINE
Cyclosporine is high again at 396. We’re reduced tonight’s dose to 0.6ml, moving forward we’ll administer 0.9ml twice per day and then re-check the level on Monday.

Kidneys are showing a little increase in their relative levels, so we’re advised to have him drink more each day and we’ll also check that again on Monday. If the levels are still too high Nicholas may have to go back on IV hydration.

Magnesium level is generally affected by the overall process, and now that Nicholas is off the hydration he will need to take a supplement daily to get his magnesium up. His level is at 1.4 today and the targeted range is 1.8-2.2

THE ADDITIONAL BONE MARROW ASPIRATE DATE IS SET
Monday will be the bone marrow aspiration to re-do the Chimerism test—we are PRAYING that the numbers go back up. (If necessary, please refer to the July 18 journal entry)

FRIENDS
Nicholas and mom had a nice visit from Sarah, daughter of our friend, Cyndi. Nicholas recruited her to play a racing game with him and then just enjoyed conversation.

SEVERAL FRIENDS HAVE BEEN DOING SOME AMAZING THINGS IN PREPARATION FOR NICHOLAS COMING HOME! Thank you Phyllis, Cyndi, Linda, Gina, Michael, Don, and Sal. You are putting in countless hours and/or levels of energy around changing the environment at our home that will be an added benefit to Nicholas based on this “leukemia and bone marrow stuff.” And once again, thank you to so many others who help Nicholas and mom & dad through a variety of ways like visits to the RMH, guestbook entries, car pool for dad from our home-away-from home, etc. WE ARE BLESSED AND SO APPRECIATIVE Soha, Stephanie, Annette, Marialena, Dave, Janie, Shari, Allie, Melinda, Mary, Lisa, Iris, Miss Shirley ,and all of you, truly, from A-Z. All of your names are in our hearts and within God.

NOTE: Have you noticed Nicholas wearing a red band on his wrist? Nicholas has been wearing a red band on his wrist for fellow BMT patient and RMH guest, KJ. It's a personalized band KJ's parents ordered and Nicholas choose to support KJ in his journey.

 

July 21, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, July 20, 2005 11:49 PM CDT

Day plus103

REPEAT PROCEDURE ON OUR MINDS, AND NICHOLAS’ GOOD DAY
Yes, the additional Chimerism test next week is heavily on mom and dad’s minds and we are PRAYING continually. Nicholas, he had a very good day with Kaeli and Seamus painting rocks, crosses that they painted into swords, and playing until late tonight.

PREDNISONE AND CYCLOSPORINE
Remember, one of the side effects of the Prednisone is an increased appetite. And Nicholas’ appetite has certainly increased and with it he is gaining weight; we are so glad that he is keeping active physically. And remember, one of the side effects of Cyclosporine is increased hair growth including facial, back of the neck, the back, etc. And he is growing a lot of hair—everywhere. THE WEIGHT AND HAIR GROWTH WILL GO BACK TO NORMAL WHEN HE STOPS RECEIVING THESE MEDICINES. Thankfully, he is also increasing his passion for people and has amazing patience and toughness of his mind to not let any of the things going on within him and on the outside (weight, abundant hair growth) effect his demeanor or spirit. Our little sunshine is shinning brightly; praise God!

CLINIC TOMORROW
Exam and lab work tomorrow morning to check Cyclosporine level, chemical levels, and any impact due to stopping the IV hydration. We should receive the confirmed date for next week’s additional bone marrow aspirate for the Chimerism test.

July 20, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA


Tuesday, July 19, 2005 11:24 PM CDT

Day plus102

WAITING FOR THE ADDITIONAL CHIMERISM TEST, BUT NOT WAITING TO GIVE THANKS AND TO REJOICE
“Be still, and know that I am God” is what matters most to mom & dad. Especially, during times receiving news like yesterday. We rejoice in the blessings that are all around us—and thankfully all around and within Nicholas. We are blessed with your love, support, and prayers along this journey. Although it hurts to know the T-cell’s percentage has dropped (stated in yesterday’s journal), we are comforted by understanding His words: “Be still, and know that I am God.”

THANKFUL: NICHOLAS IS NOT HOOKED UP TO ANY IVs TONIGHT
Picture your child, your nephew or niece, or even yourself when you were child. Imagine a nice warm shower, a soothing massage, and being “free” from anything holding you back or constraining you from moving about freely as your heart desires. Then, hopping into bed, tossing and turning just because you can—and are able to because there is nothing to hold you back or constrain you.

Well, this is what Nicholas is experiencing tonight for the first time since March 30, 2005. Tonight, he has no IV medicines or hydration administered—he is free from IV poles, IV backpacks, and tubes. And it is so good to see! Well, it’s also so good for mom & dad because Nicholas can go to the bathroom himself tonight, we do not have to get up to manage the IV pump, or get up to take medicines out of the refrigerator. We are thankful for this and simply thankful to be blessed by Nicholas’ beautiful energy, passion, and love. Good night!

July 19, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, July 18, 2005 11:05 PM CDT

Day plus101

RESULTS OF THE CHIMERISM TEST PRESENT A CONCERN
The July 7 test results came in today and one important number from the Chimerism test dropped significantly. So although the July 7 bone marrow aspirate was hopefully the last, Nicholas will undergo another lumbar puncture and bone marrow aspirate next week.

Remember, after the April 7, 2005 BMT there were going to be three DNA Chimerism tests (one in May, June, and July) to reveal the success of the BMT by determining the relative percentage of Nicholas’ and the donor’s T-cell and the Neutrophils in the marrow. The goal over time is 100 percent of the donor cells at work, and it was okay that it was not 100 percent first as long as the percentage was increasing, not decreasing. The May overall percentage was 95 percent, June 98 percent, and in July one of the key markers—T-cells—had dropped to 90 percent from 96 in June and 90 in May.

It can happen that it dips, however, dipping more than 5 percentage points is a “caution flag” and our doctors do not want to see a pattern of dipping. So next week’s bone marrow aspirate (procedure) is very important. Tomorrow we should receive the date for the procedure.

CYCLOSPORINE AND PREDNISONE’S ROLE WITH THE CHIMERISM TEST
Roller coaster across the journey—okay, the Cyclosporine level today was in range (240-310) at 284. Tonight, the Prednisone (steroid) will be reduced from 5 cc to 4.5 cc. Later will talk in detail about the role the Prednisone is having and decisions around it continually being administered based on the Chimerism results. However, it could be that the Prednisone is stopped and Nicholas would have to manage any GvHD flare up—referring to Chimerism information above it would be a trade off. AND WHAT A PLATFORM OUR LOVING GOD IS ON, AND WHAT GLORIOUS HEALING FOR NICHOLAS TO COME. WE PRAY FOR WISDOM TO OUR DOCTORS.

HYDRATION
Tonight Nicholas is scheduled to receive his last overnight IV Hydration. We PRAY that his kidneys handle this change otherwise we will have to go back on the Hydration.

UPCOMING THURSDAY EXAM (NOT THE BONE MARROW ASPIRATE)
July 20 Nicholas will be examined, blood lab work will be performed to check the chemical levels and Cyclosporine. And being off the Hydration will be assessed.

PRAYING
Mom & dad are so blessed to have Nicholas move through the journey as he has—and we are praying for his continued healing, complete healing, and that his loving smile, energy, enthusiasm, and passion for caring about others remain a constant for all.

Thank you so very much for praying and being with us. Thank you to all we know, have come to know, and do not even know other than through your guestbook entries and prayers.

NICHOLAS HAVING FUN WITH HIS GRANDMA, AUNTS, AND COUSINS
Nicholas had an afternoon of family fun—grandma Charlotte visited along with two of his aunts, and several cousins.

July 18, 2005 Blood Counts:
WBC: 3.9
HGB: 11.0
PLTs: 169
ANC: 3,000

 


Sunday, July 17, 2005 11:42 PM CDT

******Day plus100******
******Day 240 since Nicholas’ leukemia diagnosis******

Nicholas did it—it has been 100 days since his bone marrow transplant! (Click on View Photos; and photos at the end of "current-pictures" album under Links)

LYRICS THAT HAVE COME INTO OUR THOUGHTS AS WE CELEBRATE:
Celebrate good times come on, lets celebrate; we’re going to have a good time tonight…

You’re my love, you’re my angel, you’re a dream of a (son)…

You must be my lucky star, because you shine on me wherever you are…

We are the champions, of the world; we'll keep on fighting…

Because you live son, my world, has twice as many stars in the sky…

I believe I can fly, I believe I can touch the sky…

I’m walking on sunshine, whoa oh, and don’t it feel good…

EXAMINATION TOMORROW
Various levels will be checked tomorrow: Cyclosporine, kidney function, liver function, and regular blood count levels. Nicholas’ doctor will check his tongue (still a little sore on the tip and toward the back although there are no visual signs of soreness.

The Chimerism results from the July 7 bone marrow aspirate should be in tomorrow, and shortly after the Cytogenetics results.

WHAT THE MEDICAL COMMUNITY SAYS ABOUT THE FIRST 100 DAYS, AND AFTER 100 DAYS
FIRST 100 DAYS:
Please refer to the Journal History, and the May 29, 2005 journal entry.

AFTER 100 DAYS:
If a patient’s condition is still stable at day plus100, they are able to return home. WE ARE PLANNING TO GO HOME BY THE END OF NEXT WEEK. If the patient was previously cared for at another hospital (Children’s Hospital-Oakland in Nicholas’ case) they will again resume the care of your child. The patient will return to LPCH for follow-up at 6 months post-transplant and then yearly after that for 5 years post-transplant. If any complications, such as chronic GvHD, should develop the patient may be required to be seen more frequently at LPCH by the BMT department.

Because Nicholas’ immune system has had a chance to grow stronger after 100 days, when we go home we will then be able to relax some of the restrictions and isolation guidelines. Nicholas will be permitted to go into other buildings besides home, the RMH, and the hospital, however, only during non-busy times. Although he will be able to go to the movies, shopping centers, grocery stores, and restaurants, he must wear a mask while in these public places—except when eating at a restaurant. We will need to avoid busy weekend crowds, busy holiday season crowds, and popular movie times. For restaurants, it is recommended that we go to those with outdoor seating and where the food is freshly prepared.

IMMUNIZATIONS:
Nicholas will not be eligible to receive any childhood immunizations until at least one year after transplant. Our doctors will review his immune constitution studies at this time and will let us know when it is safe to begin re-immunizing Nicholas. Although Nicholas cannot yet receive the flu vaccine, the rest of our family will receive the annual vaccine as recommended.

LONG TERM COMPLICATIONS
Chronic GvHD
Chronic GvHD can develop 3-12 months after transplant and may affect up to 25percent of pediatric transplant patients. Chronic GvHD may cause infections, skin abnormalities, dry eyes and mouth, and/or dysfunction of the liver, lungs, or gastrointestinal tract.

Patients who experience chronic GvHD are placed on medications to suppress the effects of GvHD. Treatment may be started in the hospital or on an outpatient basis. And patients may remain in strict isolation for a longer than 100 days post-transplant. While the patient is being treated for GvHD, the patient will be more prone to get infections and will need to be monitored closely for fevers, signs of infection, immunosuppressive dosing, worsening signs, and symptoms of GvHD.

Ophthalmologic Issues
Several years after receiving FTBI (fractionated total body radiation Nicholas received during the week before the BMT) there is the possibility of developing cataracts (clouding of the lens of the eye). If the formation of cataracts interferes with a patient’s vision, it may be necessary to remove the cataract by a surgical procedure.

Other transplant-related issues that might require more frequent and on-going ophthalmic follow-up include past CMV infection and/or chronic GvHD of the eyes.

Endocrinology Issues
The irradiation and/or chemotherapy used for BMT conditioning may have long-term effects on a patient’s growth and development as well as on a patient’s onset of puberty. Most of the patients who experience these side effects can be successfully treated with supplemental hormone therapy. Nicholas’ growth pattern will be monitored carefully, and a referral will be made to a pediatric endocrinologist for annual evaluation and treatment, if necessary.

DISEASE RECURRENCE
Unfortunately, even with a BMT, some patients may experience a recurrence of their leukemia. Despite the risk of serious complications and relapse, transplant offers hope for a possible cure.

BUT WE WALK WITH OUR LOVING GOD—PROVIDER AND PROTECTOR
Following are words that have helped us along Nicholas’ journey:

“I walk with God along the way, and oh, it is a joyful-dominion day. No more I suffer cruel fear, I feel God’s presence with me here. The joy that none can take away is mine, I walk with God today.”

“Green pastures are before me, which yet I have not seen. Bright skies will soon be over me, where darkest clouds have been. My hope I cannot measure, my path in life is free. My Father has my treasure, and he will walk with me.”

July 17, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, July 16, 2005 11:05 PM CDT

Day plus99

Tomorrow is Day plus100! Nicholas has been amazing during this stage of the BMT process; his energy, strength, and ability to glide through the ups and downs is simply incredible. Mom & dad are so thankful for our loving God’s guidance, and your prayers.

PLAY DATE
Nicholas had a play date with Seamus, brother of Kaeli who was a BMT patient and guest at the RMH, and they were active all evening. They had dinner together and the main course was—you guessed it—baked chicken legs. Home away from home felt just like home as they played, laughed, and ate together. These times with others make a big difference toward normalcy.

TONGUE
He stilled complained of some pain on his tongue, toward the back, and thankfully there were no physical signs of an issue. Monday our doctor will follow up on this.

LOOKING GOOD, FEELING GOOD, & LOVING GOD
Nicholas is looking good. And to answer a couple of questions we have been receiving we want you to know what we know about two things you may have noticed. 1) The large amounts of hair over his body, especially his face, head, neck, and back are side effects of the Cyclosporine and will go away once we stop the Cyclosporine. 2) His puffy cheeks and stomach are side effects of the Prednisone (steroid) and will go away once we stop the Prednisone. The Prednisone will have a very slow tapering down process based on GvHD flare-ups that Nicholas had experienced. Then Cyclosporine will be tapered down.

He is feeling good—no complaints other than his tongue.

Loving God—through the ups and downs, through Nicholas’ sustained energy and strength, through everything in our way and around us, we are loving God for sustaining Nicholas, mom & dad, and the source of strength for our other three sons.

NOTE: Click View Photos to see Nicholas and new food items on his diet.

July 16, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, July 15, 2005 11:29 PM CDT

Day plus98

CYCLOSPORINE, KIDNEYS, LIVER, HYDRATION
Well, the good news is that the Cyclosporine level wasn’t low and out of range after switching from IV to oral, as the case has been when switching to oral. The bad news is that it is still high and out of range (240-310) at 364. Tonight’s dose will be reduced to 110mg.

Nicholas’ liver function and kidneys look good—it does not appear the reduced IV hydration negatively impacted their function. The hydration will continue over the weekend and it is planned that it will be discontinued on Monday. Then, on Wednesday the function of his kidneys will be analyzed to determine if any intervention is needed.

LAST OF ANOTHER MEDICINE
Gancyclovir, an agent used for the prevention of an infection called CMV, was administered for the last time tonight. BMT patients at risk for this infection are closely monitored for evidence of the infection until 100 days after transplant. ANOTHER BLESSING—no CMV infection experienced.

COUNT DOWN TO GOING HOME
It’s looking like Nicholas (and mom & dad) will be going home sometime the week of July 25. We're still on the journey and we have a very, very long path ahead.

YELLOW LIGHT
We have talked over, and over about the roller coaster effect and slippery road that Nicholas is on toward his cure. Well, with the slippery road we guess comes "yellow lights" or caution flags. We have a caution flag tonight as Nicholas complained of something bothering him on his tongue today and along with the doctors we are "watching it" to take action if needed. Nicholas does not complain much at all and when he does it generally is something real--although not always a medical issue. WE PRAY AND CLAIM NICHOLAS AS COMPLETE, WHOLE, AND GOD'S CHILD.

July 15, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, July 14, 2005 11:01 PM CDT

Day plus97

ORAL CYCLOSPORINE
Nicholas has been taking the oral Cyclosporine just fine despite the horrible taste. He’s such a trooper taking all the oral medicines he’s been required to take up to this point. And an amazing child more than tolerating having to be hooked up for IV medicines throughout the days & nights, and all the oral medicines up to this point.

LABS: CYCLOSPORINE, KIDNEY FUNCTION
Tomorrow we’ll draw “labs” and take them to clinic for analysis—hopefully the Cyclosporine level is in range and Nicholas’ kidneys have tolerated the reduced hydration. We’re hoping to be off the hydration for the weekend and that Monday’s “labs” reveal that Nicholas’ kidneys are functioning just fine without the extra flushing that the hydration would have achieved. We hope this is the case because that would mean we would no longer have any medications to administer via IV.

CLOSER, CLOSER, AND CLOSER TO GOING HOME
Nicholas asks several times a day, “how many more days till we get to go home”. We are getting so close to going home. Reflecting back to March 31 when we were admitted to LPCH to begin the BMT pre-regimen, looking at the pictures on third photo album under Links showing Nicholas going through this journey, we are so grateful for the progress Nicholas has made through God’s loving touches.

Although we tried very hard to act and treat things as if we were home while in the LPCH and at the RMH, Nicholas misses his home. We are thankful that he has only, really, began talking about it as we began talking about it—this has helped mom & dad so much as it would have been such a heartache if Nicholas was talking about going home during the times when it wasn’t even on the radar screen.

July 14, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, July 13, 2005 11:32 PM CDT

Day plus96

PROGRESS
Although Nicholas’ Cylcosporine level was high and out of range at 334 today, his overall condition is good and it was determined to be a good time to switch back from IV to oral administration of Cyclosporine. Tonight we will administer it orally at 130mg (the IV dose was 70mg, however, the oral formulation is different). Going to oral is progress, and WE ARE PRAYING that Nicholas’ body does not metabolize it too quickly as before which caused his level to drop low and out of range. That would not be a good thing for the GvHD.

His Cyclosporine level will be reviewed Friday, Saturday, Sunday, and Monday as we prepare to be released from the LPCH area and RMH.

Nicholas’ nightly IV hydration was also decreased to 400 ml (40cc per hour overnight). His kidney function will be checked Friday as well, if it is okay we may discontinue the hydration.

*****LABS THIS COMING FRIDAY ARE VERY IMPORTANT—HOME TO LAFAYETTE MAY HAPPEN BY THE END OF NEXT WEEK*****

REMEMBER THE ROLLER COASTER EFFECT?
Remember the medical ups & downs Nicholas has experienced and we talked about? Remember how things were great one moment and full-body pain ripping through us another moment? Well, I guess we are still on the roller coaster because the journey is far from over. And we can still feel the turns and gut wrenching jolts that are not far behind us. Although there may be more of these moments ahead, Nicholas has made amazing progress and along with mom & dad we are thankful to be on the journey with the love from God and all of the love & support from you.

LOVE IS ALWAYS THERE
Speaking of love & support, the blessings flow like wild flowers—so many beautiful colors combining to provide love that warms our heart and soul. Nicholas is able to enjoy so many beautiful moments through family and friends that weave throughout the segments of his journey. These segments make up his stay in the hospital, at the RMH, and when we have been home. (Home, it’s been nearly 3 ½ months since we have been home.)

The Nieuwsma’s came to visit today. On this very warm day, they showered Nicholas with fun—from inside the RMH to outside at the park

ADDITIONS TO HIS DIET
Nicholas was able to add salsa to his diet so this evening he had a few chips and some salsa. On Monday he added yogurt—although it was just 1oz and at least two-hours apart at this time.

NICHOLAS’ DINNER PRAYER TONIGHT
Nicholas’ dinner prayer tonight: “Thank you God for the food, thank you for a wonderful day, thank you for the sunshine and the water-fights, Amen!”

July 13, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, July 12, 2005 11:05 PM CDT

Day plus95 (Day 235 since Nicholas’ leukemia diagnosis)

CLINIC APPOINTMENT TOMORROW MORNING (WEDNESDAY)
Wednesday morning Nicholas has an appointment in the LPCH clinic to have lab work drawn to check the following:
1) Electrolytes to determine if the kidneys are handling the reduced hydration.
2) Liver function.
3) Cyclosporine level and follow up conversation about going back on oral Cyclosporine.

Also, the rash on his legs and ankles will be examined to see—WE PRAY—continued improvement of it and sustained improvement of the GvHD recently experienced. Based on what mom & dad sees, it looks better!

TODAY’S ACTIVITIES
Nicholas had a very nice day, and his activities ranged from painting rocks into character faces and just various designs, drawing pictures of our family, and he closed the evening with some physical exercises.

July 12, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA


Monday, July 11, 2005 11:44 PM CDT

Day plus94

CYCLOSPORINE IN RANGE, GVHD LOOKING BETTER
Today’s Cyclosporine level was in range at 299, and Nicholas’ skin GvHD is looking better (remember the flare up last week on his legs and ankles).

ORAL CYCLOSPORINE MAY BE RE-INTRODUCED THIS WEEK
We’ll talk about this more maybe on Wednesday; however, the doctors are talking about moving from IV to oral Cyclosporine again. You may remember that the last time we went to oral Cyclosporine his level fell out of range, as it appeared his body was metabolizing the Cyclosporine too quick, not absorbing it.

Remember, this is important because its job is to protect Nicholas from getting GvHD of the skin, gut, and liver. Unfortunately, Nicholas has experienced these three things and we had to introduce him to the steroid Prednisone—then increase it to help Nicholas eliminate the GvHD.

Based on last week’s reduction of the Prednisone dose and then the flare up of GvHD to his skin, Nicholas will be on the Prednisone for a lot longer than expected. We need Nicholas’ body to tolerate the donor’s T-cells and not recognize them as foreign—so the approach will be slow as Nicholas’ body continues to normalize and build up to accepting the new T-cells. When we are able to begin reducing the Prednisone, week to week the reduction will be very, very slow.

More later.

CHEMICAL PANEL
Most of the levels are in range. One of the liver enzymes is a little high, however, better than it has been.

NEXT CLINIC VISIT
Wednesday Nicholas will be examined further to address the oral versus IV Cyclosporine, and follow up on the chemical panel to make sure his kidneys are in good condition and functioning correctly without the extra hydration Nicholas has been getting since we were discharged from the BMT on May 24.

NICHOLAS AND TODAY
Fun, socializing, and studying was the order of the day. Regarding studying, Nicholas was given a clip board by the hospital staff and even in the middle of “fun” in the family room with others, he asked for his clip board. Nicholas has been working with his alphabets and drawing lots of pictures of friends and family members.

Recognizing that mom has been calling Matthew a lot, Nicholas’ drawings included a picture of his brother Matthew. Nicholas said he drew the picture so mom wouldn’t have to call Matthew so much.

July 11, 2005 Blood Counts:
WBC: 4.5
HGB: 11.3
PLTs: 171
ANC: 3,500

 


Sunday, July 10, 2005 11:44 PM CDT

Day plus93

STILL LOTS OF DAILY MEDICINES AS NICHOLAS APPROACHES DAY PLUS100
Medically, this leukemia and bone marrow stuff IS NOT a short or mid-term regimen of medicine and treatment for everything to be back to normal. In fact, normal takes on a new meaning for Nicholas, mom & dad, his brothers, as well as family and friends around Nicholas.

Although we are approaching Day plus100—and overall approaching day 240—there are still multiple oral medicines and a few IV medicines that are administered every day, throughout the day. Mom continues do an incredible job of mixing, preparing, and administering the multitude of medicine for Nicholas. From taking out medicines at 3:00am, administering at 9:00am, 10:00am, taking other medicines out at 2:00pm and 3:00pm, administering at 8:00pm and 9:00pm, as well as administering oral medicines and vitamins throughout the day is one aspect of our now normal days. NO COMPLAINTS AS WE ARE ABSOLUTELY GOING TO DO ANYTHING AND EVERYTHING TO DRIVE NICHOLAS’ CURE.

From nurse, to teacher, to physical therapist, to what we love—being Nicholas’ mom & dad—we have no complaints about our new normal days. We are living and loving in many new ways and continue to be so thankful that God is directing this journey, and we are blessed to have you in our lives.

EVENING WALK, NOT ON A TRAIL OR IN A PARK
This evening mom & dad took Nicholas for a walk around Stanford Shopping Center’s outside mall, after it had closed so there were no crowds. And it was after the sun was brightly shining so it was very, very pleasant to be outside, strolling, running around, and laughing. There were water fountains, waterfalls, statutes of various types of characters, and beautiful flowers.

Listening to the music playing through the central sound system, Nicholas was dancing down the halls. Playing tag with mom was a beautiful sight, and he didn’t want to stop. As we left the outside mall, Nicholas got a ride on dad’s shoulders back to the RMH—fit for a king.

WHY WE ARE SO THANKFUL YOU ARE IN OUR LIVES
While we are thankful for the amazing progress Nicholas has made, we recognize this leukemia and BMT journey has many “slippery slopes” for all cancer patients. It is such a scary disease and with the process to cure Nicholas it generates so many other worries. Although our focus is on the cure, what is kept in sight is to fight the side effects through information, research, prayers and our loving God’s guidance.

We are so thankful for your prayers as your voices have helped us along this journey—your voices are heard and blessings generated. GUESTBOOK ENTRIES: Thank you for the guestbook entries, we really love hearing from you and your caring words offer love and encouragement. The entries are a wonderful testimony for Nicholas as he fights this fight now, and in the future see the love so many have had toward his cure.

July 10, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA


Saturday, July 9, 2005 11:56 PM CDT

Day plus92

A GOOD DAY ALL AROUND THE RMH
Nicholas’ Montessori teacher, Ms Shirley visited with Ms Suzette. Ms. Shirley did something that Nicholas loves to receive from her—she sat and read to Nicholas—see today’s home page picture. And while Ms Shirley was reading, mom had a relaxing time with tea shared with Ms Suzette on the immune wing patio.

Brother Chris came by for a visit, and dad went back to Lafayette for the evening and spent time with brothers Chris and Matt.

NEW PHOTO ALBUM
Today a new photo album about Nicholas’ journey was posted on the home page, toward the bottom, under Links.

The new album is titled “Day 132 leading to BMT and current pictures.” Following is a description of what you will see. Nicholas-Day 132 (before BMT) to Day 230 (which is Day plus90 regarding the BMT): 3/31/05 to 7/7/05:

At the Ronald McDonald House before checking into Stanford-Lucile Packard Children's Hospital for the BMT. This is Nicholas' journey continued, through the pre-BMT regimen and after BMT (where days are counted like Day +2 meaning 2 days after transplant understanding he had two Day 0s because the transplant on 4/7/05 went into 4/8/05), some troubling times, and the overall process. See his display of energy, strength, and continued passion for caring about others—even though he is going through all this "leukemia and bone marrow stuff" (as he calls it).

The story of Nicholas’ journey is revealed through the pictures (in chronological order) and captions below the pictures. Thank you for being part of Nicholas’ journey!

Note: The second album titled “Day 80-131 before BMT” was updated with photos not provided before. Combined the three albums, including the first one titled “The past 6+ months” (which are photos and captions before the diagnosis, through diagnosis, up to Day 79) provide a unique view of Nicholas overall journey.

July 9, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA


Friday, July 8, 2005 10:36 PM CDT

Day plus91

CONVERSATIONS WITH OUR ONCOLOGIST AT CHO HAS BEGUN
Nicholas’ doctor at Stanford-LPCH has talked with his oncologist at Children’s Hospital-Oakland (CHO) regarding the Day plus100 approach wherein there will be discussions about returning home to Lafayette (we have been at LPCH and/or the RMH since March 31). Our goal is to be able to have the follow up treatment at CHO where Nicholas was diagnosed and had his treatment before the BMT determination, and continued treatment until the BMT regimen.

The reason for the conversations is that Nicholas’ GvHD is still present, and because of that the follow up would normally be followed by the BMT doctor (at LPCH). Nicholas’ file will be reviewed by CHO and a personal examination of Nicholas by CHO will lead to the determination.

NOT MUCH OF AN APPETITE, HOWEVER, NICE DAY
As you have been reading, Nicholas’ appetite has been good and he has been eating and eating. Some of the eating is triggered by the Prednisone that has a side effect of an increased appetite. Today he did not have much of an appetite; however, he sure had an appetite for being with his friends in the immune wing of the RMH. He really enjoys playing with KJ and Jacob, and he misses former RMH guest Kaeli. Today was a nice day, although Kaeli did not come to visit, her mother and brother Seamus came by for a visit.

Note: We realized that the three BMT patients, Nicholas, KJ, and Jacob, who have been together at the RMH make up a unique trio. Three BMT patients with 3 different diagnosis and 3 different types of BMTs—Nicholas had a matched-unrelated donor, KJ had sibling donor, and Jacob had an autologous (use of the patients own cells).

WE ARE GRATEFUL FOR GOD’S LOVE THAT TOUCHES OUR LIVES IN SOME WAY EVERYDAY!

July 8, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, July 7, 2005 10:21 PM CDT

Day plus90 (Day 230 since Nicholas’ leukemia diagnosis)

LONG DAY AT THE HOSPITAL
Early start and late ending:
1) We started out in admissions at 8:30 this morning,
2) Then on to the clinic for lab work,
3) Then to the Pediatric Anesthesia Care Unit (PACU) for the procedures we stated in yesterday’s journal,
4) Then on to the recovery room,
5) Then the Day Hospital for two other procedures,
6) And finally on to the RMH around 7:00 this evening

PROCEDURES WENT WELL
The procedures were uneventful medically in that everything happened as expected (a good thing). Of course, WE WILL NOT KNOW THE RESULTS OF THE PACU PROCEDUREDS UNTIL THE TIMES STATED YESTERDAY. However, our doctor commented about the marrow draw. She said the fluid was clear, marrow came out smoothly, and it appeared to be a good sample—it looked very cellular.

Nicholas came out of the anesthesia immediately upon arriving in the bubble room within the recovery room. And he immediately had a question. He asked the nurse what was going on because he heard a lot of very, very loud screaming and crying. The nurse explained that the other beds in the recovery room were full, and some of the patients were having a hard time coming out of the anesthesia.

Who knows what Nicholas was thinking! We can only imagine what he was sensing. But mom & dad were right there to comfort him, as he comforted mom & dad just by us being with him.

Chemestry panel, including liver function and kidneys do not reveal anything alarming.

July 7, 2005 Blood Counts:
WBC: 4.5
HGB: 11.1
PLTs: 168
ANC: 2,740

 


Wednesday, July 6, 2005 11:07 PM CDT

Day plus89

RASH ON LEGS IS GvHD
Nicholas’ Cyclosporine level is in range at 279—GREAT—HOWEVER, the rash on his legs is GvHD and is spreading. It has moved down to his ankles. So with the Cyclosporine being in range, it was determined that Nicholas’ body was not ready for the Prednisone reduction (steroid, that was helping to manage the GvHD) so beginning tonight we are increasing the Prednisone dose back to 5ml (15mg). Overall, the indication is that Nicholas will have to be on the Cyclosporine and Prednisone longer than expected. Note: When we are able to start reducing the Prednisone, it will have to be very, very gradual because of the flare up Nicholas is experiencing.

TWO VERY IMPORTANT PROCEDURES / TESTS TOMORROW (Thursday)
1) Tomorrow Nicholas will go to the operating room for the last of five lumbar punctures and intrathecal, injection into the spine, Methotrexate chemotherapy. These five make up the last of the chemotherapy Nicholas should forever need to receive. It is part of the BMT regimen to ensure that any leukemia cells that may have survived the conditioning regimen before the BMT, are destroyed.

2) Also, the last of three bone marrow aspirations will be performed as part of the 100-day BMT regimen. Nicholas will have other bone marrow aspirations at 6 months post BMT and 12 months post BMT. The results of tomorrow’s procedure should be known in 2-3 weeks. These three are to confirm that he is still in remission. Marrow will be used for a Cytogenetics test-DNA indexing to confirm that there are still no hypodiploid cells (reason for the BMT). Results of the first two were negative—GREAT.

2a) And, marrow will be drawn for a DNA Chimerism test discussed in the April 27th journal. The results should be known in 1-2 weeks. The test reveals the success of the BMT by determining the relative percentage of Nicholas’ and the donor’s T-cells and Neutrophils in the marrow. The goal over time is 100 percent of the donor cells. The first one on May 11 revealed that 95 percent were donor cells—great start—and the second one on June 6 revealed that 98 percent were donor cells. WE ARE PRAYING that tomorrow's test will reveal that it is at least 98 percent or higher (we need to have it going up, not down).

QUOTE FROM NICHOLAS
Following is a quote Nicholas said today after his doctor informed us that she would be calling his Children’s Hospital-Oakland (CHO) doctor regarding Nicholas GvHD, going home soon, and the follow up care that he will need. She wants to determine if it could be performed at CHO considering the GvHD versus coming all the way back to Stanford-LPCH. After saying she would be calling our the CHO doctor, Nicholas said, “There is a phone right there that you can use.” It appears Nicholas wants to expedite the process (understandably).

AFTERNOON FILLED WITH FUN
Water guns, play structure climbing, kick ball, and chalk writing on cement were the activities this afternoon. MOM & DAD ARE THANKFUL that Nicholas’s energy and strength enables him to push and sail through a lot of the good and bad news linked to the various stages and overall BMT process. AND THANKS, EVERYONE, FOR KEEPING NICHOLAS IN YOUR PRAYERS!

Please click on View Photos.

July 6, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, July 5, 2005 11:18 PM CDT

Day plus88

EXAMINATION TOMORROW TO ASSESS THE RASH
The good thing is Nicholas’ Cyclosporine level was in range yesterday lessening the concern over the rash on his inner knees. Although planned for today, tomorrow Nicholas’ doctor will examine the rash, and Cyclosporine labs will be drawn to determine its level. We have been waiting for a very, very long time for the Cyclosporine level to remain in range for more than a couple consecutive days. However, as we stated recently, we are not holding any numbers to dictate Nicholas fate—we are firmly rooted in God’s omnipotence, omniscience, and omnipresence as the author of Nicholas’ journey. And there is no better author.

GOOD DAY
Nicholas had a good day with other RMH guests. Mom called the doctor and Nicholas left his own message for the doctor. Nicholas message was a request to be able to eat a Bologna sandwich and at the end of the message he said, “Have a nice day, and tell everyone I said hi!” Our doctor called back leaving a message that he can have a half Bologna sandwich today and during the examination tomorrow determine if he could begin to have a whole Bologna sandwich. And Nicholas’ cheeks, inflated as a result of the Prednisone, rose up as much as they could as he smiled hearing the reply.

July 5, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, July 4, 2005 5:17 PM CDT

Day plus87

*QUICK UPDATE*

SLIGHT CONCERN AT THIS MOMENT
"Any new rash or worsening or changes in an existing skin rash" is an explicit reason for mom & dad to "Immediately notify the BMT Service" at Stanford-LPCH. There is a new rash on Nicholas’ legs, inner knee area.

This morning’s blood samples were analyzed and the lab work just came back revealing that the Cyclosporine level is in range—EARLY FIREWORKS OF CELEBRATION FOR US RIGHT NOW. The concern was around a GvHD flare up if the Cyclosporine level was low. Tomorrow Nicholas will be examined to determine any action to take regarding the rash on his inner knees, knowing that the Cyclosporine level is in range.

It’s like “fire drills” when even the most normal occurrence of injury or conditions surface for BMT patients. And it’s a calm fire drill mode that mom & dad go into. We do not want to over react AND we do not want to overlook even issues that may seem trivial.

Nicholas' spirit is GREAT and we are all over the RMH immune wing doing various things. We are planning to find an optimal spot overlooking the Port of Redwood City tonight, which is about 7 miles away, to view a fireworks show billed as spectacular. We will have a good 4th of July!

 


Sunday, July 3, 2005 11:46 PM CDT

Day plus86

NICE DAY
Nice day listening to music (with mom & dad), picnic (on the bed), talking on the phone (with family and nanny), playing basketball (with dad, live not a video game), playing with KJ (RMH guest), putting together puzzles (with mom), drive in the car (of course, with mom & dad), and package from Nicholas' Diablo Valley Montessori School (including a hand made 4th of July poster).

HAVE A GREAT 4TH OF JULY EVERYONE!

JuLY 3, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, July 2, 2005 11:17 PM CDT

Day plus85 (Day 225 since Nicholas’ leukemia diagnosis)

NO LABS, NO CLINIC, NO HOSPITAL
No, No, No have never sounded and felt so good! We are grateful that there was no lab work today including Cyclosporine analysis revealing that it was out of range. Because we are grateful that he is feeling fine and looking good—we are striving to be just fine regardless of Cyclosporine being out of range.

It was very nice to not have to get up early for a clinic appointment, and it is great that there is no reason for Nicholas to be in the hospital.

GOD IS A LOVING GOD
We are not just optimistic, we are firm in our knowing that God is a loving God and he is watching over his child, Nicholas. What a blessing to have God over us as our provider and protector. He has provided so many blessing, including all of the amazing things that we have witnessed in and through Nicholas. He has protected Nicholas as well as mom & dad, and our other three boys in many ways during this journey. Our God is a loving God—His love is EVERYTHING.

VERY NICE START OF THE WEEKEND
Friends, friends, friends kicked off our weekend and FRIENDS, we thank and love you for your beautiful gifts of caring and loving in person, on the phone, and on this CaringBridge site's guestbook. Thank you!

Please click on View Photos.

July 2, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, July 2, 2005 1:04 PM CDT

Friday, July 1, 2005
Day plus84

FRIDAY
Friday was a very nice day for Nicholas. Nicholas gathered two of the other BMT patients (KJ and Jacob) and off they went throughout the immune wing at the RMH.

THREE BMT PATIENTS LIVING IT UP
They were in the playroom putting together puzzles, playing board games, and they acted out (played) restaurant. The playroom is set up like a combination school room and kitchen--so the three boys acted out being in a restaurant taking turns performing different restaurant roles.

They were in the family room playing, you guessed it, video games. Although KJ and Jacob are 7 years older than Nicholas, these three boys spend quality time together that is age relevant, balanced, and blended enabling them all to be fully engaged and challenged. They say they are "surrogate brothers" based on their shared BMT limitations although each of them have a different diagnosis.

SHARING HIS FOOD WITH A PATIENT STILL IN THE HOSPITAL, REALLY
Remember, Kaeli, the other guest/patient at the RMH? Well, she is back in the hospital and she and her mother called mom because Kaeli really liked mom's baked chicken. But mom's baked chicken is not only a favorite of Nicholas', it is a staple food that he can have a lot and he enjoys it a lot.

So when Kaeli called for some chicken, Nicholas and mom drove to the hospital (across the street) meeting Kaeli's mom to drop it off. They were so thankful--Kaeli was waiting all afternoon for the chicken. Nicholas said, "I just think it is nice to share."

TIME WITH JUST MOM & DAD
Mom, dad, and Nicholas went for a short drive around the Stanford campus and down University Avenue enjoying the sites and sounds. At one point when we were at a stop light and listening to some musicians on the corner performing, Nicholas said, "Would you please roll up the window because I can smell the food."

TODAY
There are several visitors from home planned for today, and dad is going home this afternoon to spend time with two of our other sons.

JuLY 1, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

Thursday, June 30, 2005 11:40 PM CDT

Day plus83

GUESS WHAT IS OUT OF RANGE?
Yes, you guessed it! The Cyclosporine is out of range again—it is high at 338. Tonight’s Cyclosporine dose will be reduced from 75 to 70mg. Enough said about this, you know our worries about Cyclosporine being out of range.

SO GUESS WHAT IS STILL IN OUR REACH—A BLESSING WE ALL SHARE?
We are thinking about what has been constant along Nicholas’ journey, what has always been in our reach. There is something we have counted on no matter where we have been on this journey. This journey that has proven to have some slippery slopes along with solid steps. As hard as humanly it is to face a lot of these challenges, we are thankful for the Lords promise to “always” be there in ways we sometimes fully recognize “out of the moment.” We are reminded to “Be still, and know that I am God!”

We are blessed to have God in our reach and always reaching to us. So, as hard as it is to face these slippery slopes of the journey, we know to trust in God and His plan.

AND WE ARE BLESSED for God lovingly continues to be our guide. Today, He has guided some wonderful blessings:

1) Cytogentic results are negative—no Hypodiploid cells (the reason for the BMT).
2) Overall lab results from today had good results.
3) Nicholas continues to look better and better, in spite of the Cyclosporine level today

June 30, 2005 Blood Counts:
WBC: 4.7
HGB: 11.2
PLTs: 155
ANC: 3,500

 


Wednesday, June 29, 2005 11:52 PM CDT

Day plus82

BROTHERS, FRIENDS, AND FRIENDS
Two of Nicholas’ 3 brothers, friends from home, and friends from RMH made Nicholas “feel good” today. From morning until early evening he was asking for the time his brothers would arrive, and checking the time and waiting for them to show up. When they did, …he fell asleep for a couple of hours. And when he awoke the play and fun was on—although it was a short period of time before they left for home (our home in Lafayette).

LABS TOMORROW AND A CONVERSATION ABOUT HOME
We PRAY that lab work tomorrow will reveal what mom & dad sees illuminating from Nicholas, that everything looks and is good. We PRAY that the numbers are congruent with the facts of his wonderful display of happiness and love.

The general target date for going home is Day plus100 and that day—July 17—is approaching. So tomorrow we will begin that conversation and check in on whether or not July 17 seems medically reasonable. We are still waiting for Cytogenetic results.

June 29, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, June 28, 2005 11:09 PM CDT

Day plus81

ANOTHER HAPPY DAY
No lab work was done today, however, it was another happy day for Nicholas. We are PRAYERFUL that his Cyclosporine will remain in range and the other lab results will reveal favorable results. Note: Next appointment for lab work is Thursday.

As always, Nicholas’ strength, joy, and endless passion for caring about others was constant today. His energy and enthusiasm remains high. It is a blessing to know and be able to remind everyone that his energy and enthusiasm has only been low a handful of times—after all that he has gone through since the November 19, 2004 diagnosis, the several hospital stays for chemotherapy, the BMT including pre and post regimen, and the Cyclosporine challenges faced. AMAZING is God’s love so not surprisingly, amazing is how Nicholas has been through His love.

PLAY DATE WITH MOM AT THE PARK
Nicholas and mom went to a park this afternoon for a play date, just the two of them. They picnicked, played with water guns, and played with...well lets say “talking pipes” communicating fun stuff back-and-forth on opposite ends of the play area. He was so eager to tell dad all about his time at the park with mom.

AND when dad arrived at the RMH, Nicholas was still very playful as he began a one-sided game of hide-and-seek—well hide from dad. The evening closed with a quick game of basketball and reading.

June 28, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, June 27, 2005 11:43 PM CDT

Day plus80 (Day 220 since Nicholas’ leukemia diagnosis)

HAPPY, HAPPY DAY:
CYCLOSPORINE BACK IN RANGE AND CHEMICAL PANEL LOOKS GOOD
Cyclosporine is back in range at 291; and overall the chemical panel looks good including the factors linked to the liver and kidneys. It’s a day to celebrate! Nicholas is looking really good and we are so grateful for God’s love that never stops flowing into our lives and throughout Nicholas. Even during tough times, His love fuels Nicholas’ strength and positive “way of being.”

Nicholas had a full day of play with two older BMT patients (KJ and Jacob). In the hallways of the immune wing and in the family room there was laughter, fun screams, and the sounds of boys at play.

Please CLICK ON VIEW PHOTOS to see Nicholas and other patients at play.

STILL WAITING FOR CYTOGENETICS RESULTS

June 27, 2005 Blood Counts:
WBC: 3.7
HGB: 10.6
PLTs: 150
ANC: 2,700

 


Sunday, June 26, 2005 11:40 PM CDT

Day plus79

BEAUTIFUL SUNDAY
Nicholas spent Sunday surrounded by love and uneventful medically. He played with KJ (another RMH guest), Kaeli (a recent RMH guest who is now at her home), and one of his big brothers. Mom & dad took turns playing and teaching Nicholas throughout the day.

And he enjoyed his food all day long—frosted mini wheat cereal with Lactaid (he can not have any dairy products yet), waffles, salami sandwich, apple juice, popcorn, Cheerios with Lactaid, baked chicken, steamed white rice with chicken broth, Lactaid, white bread with strawberry jelly, more apple juice, banana, frosted mini-wheat cereal and baked chicken again.

CAN YOU BELIEVE THAT MOM LEFT THE RMH
Blessings come to us from everywhere and many times repeatedly from friends who have been so much a part of Nicholas’ journey. Today, mom was invited to “Tea” with a family friend visiting another acquaintance who is a patient at Stanford. They had a beautiful afternoon; and dad and our boys “hung out.” Friends have been so very, very special to us in so many, many ways—we are blessed to have all of you in our lives the way you have been—thank you.

TOMORROW
Early morning appointment for lab work—WE PRAY the Cyclosporine is in range and his chemical panel continues to show good signs and improvement.

We should be getting the Cytogentics results any day. WE ARE PRAYING that the results confirm that there are still no Hypodiploid cells (reason for the BMT). Results last month were negative—GREAT.

June 26, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, June 25, 2005 11:18 PM CDT

Day plus78

APPEARING GREAT IN SPITE OF HIGH CYCLOSPORINE LEVEL
Although the Cyclosporine level is out of range, amazingly his skin looks pretty good and his gut seems fine based on his stool, eating pattern, and no pain. His next Cyclosporine lab work is Monday so we will not know chemical panel outcomes until then (including liver enzymes and kidney function).

FIRETRUCKS AND FIREFIGHTERS
Little boys and girls seem to enjoy being able to see, up close, fire trucks and today Nicholas was able to do just that. The Palo Alto Fire Department barbequed for the RMH and had the full fleet of one station on scene. Although Nicholas was not able to eat the food (remember he is on a BMT diet and cooking environment is critical for these patients), he was able to have a special tour of the fleet of fire vehicles. PLEASE CLICK ON “VIEW PHOTOS” to see Nicholas enjoying Saturday afternoon as well as a photo with a visitor at the RMH entertaining kids through making clown hats.

DAY-BY-DAY, BY DAY
We have been on this journey for a cure for over 200 days. Through Thanksgiving, Christmas, New Years, Nicholas’ 5th birthday, family and friends’ birthdays, his pre-school graduation (happily, remember the special ceremony he was able to attend thanks to the wonderful people at Diablo Valley Montessori School in Lafayette), his three brothers’ high school football & basketball games and college basketball games, his brothers’ college graduation, and so many missed outings, events, and time just passing time.

AND day-by-day, by day we have been blessed to have God’s love—protecting and providing for Nicholas, mom & dad, and our three other sons. We have been blessed to have so many outings, events, and time just passing time with all this “leukemia and bone marrow stuff” that has strengthened our love and passion for God, our family, our friends, and the many new acquaintances on this journey as part of the rest of our lives!

June 25, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, June 25 2005 2:52 AM CDT

Friday
Day plus77

IT'S OUT OF RANGE AGAIN—CYCLOSPORINE
The Cyclosporine level today is high at 368—out of range again. So, tonight the IV dose was reduced from 80 to 75mg. WE ARE NOT DISCOURAGED: Truly, God has been and is amazing. There are so many, many reasons we see day and night in and about Nicholas for us to give praise to God. And we praise God knowing that He is seeing Nicholas through this journey His way.

FUN, FUN, FUN DAY FOR NICHOLAS
Nicholas was out of his RMH room morning, noon, and night. Dad returned to the RMH just before midnight and Nicholas and another RMH guest, KJ, were having a nice evening with their moms in the family room.

Note: Dad's mom had a long, however, successfull heart surgery to receive a pacemaker. She came out of recovery calmly with only a little pain in her left arm where the pacemaker was placed. Mom, grandmom, coming out of recovery was asking about her grandson Nicholas and daughter-in-law Sheila—amazing.

 


Thursday, June 23, 2005 10:40 PM CDT

Day plus76

REAL QUIET DAY
This morning started out very early for Nicholas as well as dad. Nicholas awoke at 5:00am as dad was getting ready to go to work. After saying good morning, what do you think was the first thing Nicholas asked? …“Can I have something to eat?”

After Nicholas’ early start, he and mom spent a good portion of the morning in the RMH play room playing a variety of games, drawing on the chalk board, working with blocks, and spelling.

Late afternoon, a clown came to visit the few kids in the immune wing of the RMH. The clown helped the kids make some pretty interesting hats. Shortly after Nicholas made his hat he was doing some artwork. While another patient (KJ) was making his hat, he burned his finger on a glue gun. Nicholas then gave his artwork to KJ to make him feel better. And for the third kid, Nicholas drew a picture of a big bag full of money.

The evening was quiet as well. Nicholas and dad were pretending to be Power Rangers and then played some basketball. Close to bedtime, mom was reading a book to Nicholas. The book, “Goldilocks and The Three Bears" the retold story. So, this day was pretty much like a day any kid would share with their parents. It was quiet, full of love, laughter, play, and teaching.

We thank God for this wonderful day and his wonderful blessings.

TOMORROW (FRIDAY)
Early morning appointment for lab work—we pray that the Cyclosporine is still in range. It will be GREAT to have three straight days of it being in range, as well as having the liver and kidney levels re-checked and showing improvement.

Note: Also early tomorrow morning (Friday), dad’s mom will be undergoing surgery to receive a pacemaker. Would you please pray for God’s love working through the hands of the doctors and comforts mom (Eva).

June 23, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, June 22, 2005 11:29 PM CDT

Day plus75 (Day 215 since Nicholas’ leukemia diagnosis)

CYCLOSPORINE IN RANGE
We are so happy that today Nicholas’ Cyclosporine level is in range at 256. Truly, we know that God’s omnipotence, omnipresence, and omniscience is at work all around and within Nicholas. He continues to guide and “shield” Nicholas. We PRAY that the Cyclosporine level remain in range as it has not remained in range for consecutive days for a long, long period of time. Friday, labs will be drawn to check the level again.

LIVER ENZYMES IMPROVING
Nicholas’ chemical panel shows that the levels of his liver enzymes are improving.

WATCHING THE FUNCTION OF HIS KIDNEYS
The Bilirubin reading in Nicholas’ blood work today came back too high so the doctors are closely monitoring this concern. The kidneys can be negatively impacted when the Cyclosporine level is high.

OUR NICHOLAS
Nicholas remains in good spirits. Remember, the Prednisone makes him really hungry. Today, he was able to add Frosted Mini-Wheats to his diet. Occasionally he says, “Can you make me something to eat. And can you make it snappy; thank you!” Or when he has reached his limit on food quantity he says, “Mommy, moms are supposed to feed their kids so why aren’t you feeding me?” For those of you who know Nicholas, you know he consistently has a very polite way of asking and doing things. However, with the limited diet choices and volume coupled with receiving Prednisone (that makes him hungry), we occasionally have to remind him of his tone of voice. Our “parenting” continues because our approach to “all of this leukemia and bone marrow stuff” is that this is just a journey with many more life journeys to come. So, parenting continues so he comes off this journey as he went on it in terms of his behavior.

And you know what, we know that we are blessed to have Nicholas be the way he has been, and actually learn from him every day!

June 22, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, June 21, 2005 10:01 PM CDT

Day plus74

NICE QUIET DAY
Nicholas enjoyed a nice quiet day playing with another RMH guest, KJ, and friends from school. There were no medical appointments today so he and mom were able to sleep in. When dad arrived home from work, the first thing Nicholas (well, mom too) told dad was that they finally beat the Jimmy Neutron Play Station 2 game. They were really, really proud of their achievement. And, so was dad. Proud of their trying and learning new things, proud of their working “together” through some pretty frustrating moments “in the game,” and proud that they find ways to really put aside all of this “leukemia and bone marrow stuff” and just enjoy the days.

TOMORROW
Well, one day of sleeping in is enough for Nicholas and mom, early tomorrow morning Nicholas will be in the clinic for Cyclosporine lab work. We are PRAYING THAT THE LEVEL IS IN RANGE. The previous journals chronicle this story so many of you know the importance of the level being in range, the strength that Nicholas has shown through this ordeal, and the frustration and troubling experiences mom & dad have witnessed with it being out of range.

But tomorrow, like today, we will be thankful and feel the many blessings that God has provided for us. We are blessed that God is a loving God encamped around us so nothing do we fear. It is, certainly, not easy living this journey moment by moment, day after day, and month after month. However, moment after moment, day after day, and month after month we have been blessed with His love, your love & prayers, and your care & support.

June 21, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, June 20, 2005 11:23 PM CDT

Day plus73

CYCLOSPORINE LEVEL IS TROUBLING-TOO HIGH, TOO LOW
We have talked about the battle to get Nicholas’ Cyclosporine level in range for quite some time now. The battle continues and has gone from frustrating to troubling. It is so important to have the Cyclosporine in range for its therapeutic value—to guard against GvHD of the gut, liver, and skin. And so we can continue to taper down the steroid dose. Today’s level is 409, high and out of range. Three of the last four levels have been high out of range, the other one low out of range: 500plus, 404, 167, and 409.

Our doctors are reaching out to the medical community toward uncovering a solution to this troubling problem. We are skipping tonight’s dose and will reduce tomorrow’s from 85mg to 80mg.

TODAY’S PROCEDURE
The lumbar puncture and IT Methotrexate procedure went well today. Nicholas recovered beautifully, waking up in a calm and peaceful way. After saying “hello,” he asked if he could eat. We were prepared and so he ate, popping cereal in his mouth and devouring a bagel.

CHEMICAL PANEL
Levels for the kidneys function are normal. Levels for the liver function are still high but coming down.

LONG AND HARD STRETCHES OF THE JOURNEY
Nicholas is more than doing his part on this journey. His energy, enthusiasm, spirit, strength and overall outlook on this journey continues to be amazing. Really, amazing! He is doing all the right things.

For mom & dad, the struggle is so hard and it takes a toll on us physically as well as emotionally. Emotionally, we are blessed with support we have received from many of you. Physically, we are trying to make the time to exercise; however, the physical toll on our bodies from the emotional drain is an area for us to better manage.

THANKFUL
Nicholas, Chris, Tim, Matt, and mom & dad are thankful for the ways that you touch our hearts through prayer, guestbook entries, and general support of household tasks while we have been away.

And thank you to those of you who have looked into other ways to support us on the next phase of the journey. Including our coming home, hopefully just after mid-July (Day plus100).

June 20, 2005 Blood Counts:
WBC: 2.8
HGB: 10.5
PLTs: 216
ANC: 2,083

 


Sunday, June 19, 2005 11:47 PM CDT

Day plus72

CYCLOSPORINE AND NICHOLAS’ DEMEANOR
In spite of Nicholas’ Cyclosporine level being low and out of range, he looks GREAT, his skin looks so much better, and he had a good weekend! THE LOW LEVELS AND BEING OUT OF RANGE IS FRUSTRATING. Thankfully, his energy and enthusiasm is high. Tomorrow the Cyclcosporine level will be checked again.

IT METHOTREXATE TOMORROW
Tomorrow, Nicholas will go to the operating room for a 4th of five lumbar punctures and intrathecal (injection into the spine) chemotherapy. These five make up the last of the chemotherapy Nicholas should—forever—receive. It is part of the BMT regimen to ensure that any leukemia cells that may have survived the conditioning regimen before the BMT are destroyed. The five are being done every two weeks.

POST CT SCAN
No fevers or other signs of infection so this is a good indication that the small area noticed in the left lung is not some type of fungus (June 17 journal). We pray that it is just post inflammation and dissipates—follow up continues.

THANKFUL
We are thankful that God, is a loving God. We are thankful that just calling out His name brings about peace and comfort. That His name quells our anxiety over all that Nicholas is going through, all that mom & dad are going through, and that He is our comforter and protector.

CYTOGENETIC RESULTS EXPECTED THIS WEEK
This week we expect to receive results from the June 6 marrow draw for Cytogenetics, DNA indexing to confirm that there are still no hypodiploid cells (reason for BMT).

June 19, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA


Saturday, June 18, 2005
Day plus71

CYCLOSPORINE LEVEL LOW
Nicholas’ Cyclosporine level is now 167, low and out of range. The IV dose was increased tonight. This is SO, SO FRUSTRATING because we have not been able to keep it in range for more than a couple of days. 404 yesterday and 167 today—this worries us. And with it being low and out of range, there is greater risk of GvHD becoming more prevalent.

June 18, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, June 17, 2005 9:40 PM CDT

Day plus70 (Day 210 since Nicholas’ leukemia diagnosis)

OUT OF THE HOSPITAL, BACK TO THE CLINIC TOMORROW
This afternoon Nicholas was discharged from the hospital following results of the CT scan. He will return tomorrow morning to the clinic for lab work—check his Cyclosporine level.

CT SCAN
Sinus results: Negative (good).

Chest results: There is a small—very small—area on the left lung near the middle that was discovered. At this time the finding does not reveal an issue, it could be post inflammation from a previous virus (such as the possible cause of the fever Nicholas contracted on June 1 when he was also hospitalized). The doctors will “watch” this very closely.

We will be watching for sings of fungus, like coughing or contracting a fever again. If it is fungus there are IV medications to administer toward curing it. If it is fungus and the medications do not cure it, the extreme treatment (again extreme, not next steps) would require surgery to extract that portion.

CYCLOSPORINE IS STILL HIGH
Today’s Cyclosporine level is 404—still high and out of range. It appears that it is truly high and not an artificially high number as a result of contamination as referenced in yesterday’s journal. (Contamination: If the blood sample was drawn from the same lumen (IV-like line) in his Broviac—central line in his chest—used to administer Cyclosporine, the lab results could reveal a high level because the Cyclosporine tends to stick to the lumen. So when blood is drawn from that lumen, in addition to the Cyclosporine level in the blood, it could pick up Cyclosporine in the lumen. OKAY, CAN YOU REPEAT WHAT WE JUST WROTE?)

CYCLOSPORINE-WHAT A STRUGGLE, AND WE HAVE THE FEVERS AND LUNG CONCERNS
Because the level was significantly high again, this morning’s dose was not administered. We will continue administering it tonight at a lower dose (75mg versus 85mg). The struggle continues to be getting it in range, and keeping it in range. In some patients doctors would probably hold tonight’s dose as well; however, the experience with Nicholas prompts us to think that it could drop significantly and become low and out of range which would not be good because of GvHD. We do not know what caused the high level.

Remember, having the Cyclosporine level in range is important toward managing GvHD to the skin, gut, and liver. GOOD NEWS: Nicholas’s skin GvHD is improving and we may be able to decrease the Prednisone (steroid) on Monday. The Prednisone has been helping to treat the skin GvHD.

So back in the clinic early tomorrow morning, and into the operating room Monday morning for the fourth of 5 IT Methotrexate procedures—we will remind you about this Sunday night. We PRAY for continued healing and give praise to God because Nicholas has truly been amazingly strong and full of spirit.

June 17, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Thursday, June 16, 2005 11:56 PM CDT

Day plus69

STILL IN THE HOSPTIAL
Nicholas is still in the hospital resulting from the fever he contracted Tuesday and mom & dad are with him loving, coaching, and working to keep his spirit high. His last fever from this stay in the hospital was Wednesday night.

AND NOW THE CYCLOSPORINE LEVEL IS “WAY” OUT OF RANGE
Today’s Cyclosporine level is above 500, astronomically high and out of range (240-310). Labs will be drawn tomorrow, perhaps from a vein versus from the central line in his Broviac. It could be that the labs drawn today from the central line were contaminated. PLEASE PRAY WITH US that Nicholas continues to regain his health. And please pray that our little sunshine continues to shine brightly—shining light on our loving God.

CT SCAN
The CT scan of Nicholas’ chest and sinus area was completed tonight. Results should be provided tomorrow morning as we try to uncover the source of the fevers that Nicholas contracted Tuesday and Wednesday. So far the blood cultures have come back negative (a good thing), but still leaves us wondering, why the fevers as it was 13 days prior that he was hospitalized for a few days due to a fever.

AND YES WE ARE THANKFUL:
Our loving God is all around Nicholas, shielding and guiding his journey.
Nicholas’ spirit is unfettered from all of this “leukemia and bone marrow stuff.”
Nicholas warms our heart through every glance at him, and glances from him.
Our three other boys understand the level of attention given to Nicholas during this time.

CYTOGENETICS
We are still awaiting results from the June 6 bone marrow draw for Cytogenetics, DNA indexing, to confirm that there are still no hypodiploid cells (reason for the BMT). Remember, results last month were negative—GREAT.

REFLECTION
Please click on "View Photos" for a reflection of the BMT segment of Nicholas' journey.

NOTE: Dad’s mom is in the hospital and she will receive a pacemaker next Friday. Would you please pray for her comfort and a harmonious journey.

June 16, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, June 15, 2005 11:40 PM CDT

Day plus68

STILL IN THE HOSPITAL
Fevers for BMT patients are serious. Nicholas’ fever yesterday that caused him to be re-admitted into the hospital broke shortly after admission. This afternoon he had a fever again, it broke for a few hours, he had a fever this evening, and it broke later tonight. While cultures have been taken and are being analyzed, a CT scan has been ordered for tomorrow to provide more information to help determine next steps. The doctors want to rule out any fungus that may have settled in based on Nicholas being immunosuppressive for the long period of time that he has, linked to the process including immunosuppressive side effects of Cyclosporine and Prednisone.

BUT THE CYCLOSPORINE LEVEL IS IN RANGE
Today’s Cyclosporine level is in range at 274. We are thankful and PRAY that it can be kept in range to provide the medical protection against GvHD.

NICHOLAS IS INSPIRING AND WE THANK GOD
Nicholas’ spirits remain amazingly high. The way he handles everything that is going on is inspiring to us: being away from home, family, and friends; being limited in activities and places to enjoy; nurses and doctors probing, examining, and their actions; medicines he has to take orally and through IV; lab work; tests; etc. The learning through all of this “leukemia and bone marrow stuff” has not yet fully been realized and we are thankful for the learning. We are thankful for the growth in God, family, friends, and love. We are thankful for all these things and the listening to God for wisdom to take the right action and make the right decisions.

It's getting late and we are tired. We prepare to end this night with thanks that our little sunshine, Nicholas, is glowing with love and passion for caring about others. His journey does not deter his focus on others. And we are thankful for “others,” all of you who are praying with us and focusing on Nicholas.

June 15, 2005 Blood Counts:
WBC: 4.6
HGB: 10.6
PLTs: 202
ANC: 3404

 


Tuesday, June 14, 2005 9:54 PM CDT

Day plus67

BACK IN THE HOSPITAL
Nicholas has spiked a fever and we are back in the hospital.

While we know that this leukemia and bone marrow journey is just that, a journey, the process is so hard emotionally and physically. And good days and challenging days are part of the process—but it doesn’t make it any easier knowing it. Living it is hard and there are moments that mom & dad become afraid.

And we are reminded of the following:

I walk with God along the way,
And oh, it is a joyful, dominion day.
No more I suffer cruel fear,
I feel God’s presence with me here.
The joy that none can take away is mine,
I walk with God today.

Significantly more times than not, seemingly Nicholas does not have to fight the challenging days as God is blessing him with an amazing sprit enabling him to navigate through them. When we told him we had to go back into the hospital, Nicholas just said, “How long?” And he kept on playing.

Well, we are now off to the hospital—PLEASE, PLEASE PRAY FOR NICHOLAS’ CONTINUED HEALING.

June 14, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, June 13, 2005 11:53 PM CDT

Day plus66

CYCLOSPORINE IS HIGH
The Cyclosporine level today was out of range at 342, high. Not good, but the good news is that we did not need to have the conversation about adding another medicine that would further suppress Nicholas’ immune system and make him more at risk for infection. It needs to be in range to be therapeutic. However, because it was high—not low—the medicine is at least in his system and at work. We do need to get it in range so beginning tonight we reduced the dosage to 85mg versus 90mg. Next set of lab work will be Thursday.

OTHER CHEMISTRY LEVELS WE HAVE BEEN SHARING
Liver: Levels are still high but they are coming down.

Kidneys: All levels are in range

REDUCING THE STEROID DOSAGE—GOOD NEWS!
The doctors were very, very pleased with Nicholas’ “clinical” state (that is the way he is looking, his energy level, his strength, his progress, etc.). And his skin is looking so much better. So, tonight we were able to reduce the steroid amount administered. It’s now 18mg versus 21 mg—tapering down has begun and we are so happy about this.

HIS DIET IS EXPANDING
Signs that Nicholas is continually healing from the gut GvHD, today the doctors expanded his diet to include: Mustard (for his salami sandwiches), lactose free cheese (in addition to lactose free milk he started consuming a little over a week ago), a little marina for pizza, biscuits, bread sticks, pickles (3 baby kosher dills per day), oranges, apples, canned peaches or pineapple, pinto beans, and cooked herbs in his food for flavoring. These items are in addition to those stated in the May 31 journal.

THE FIRST THING NICHOLAS TOLD MOM ABOUT HIS EXPANDED DIET
“Let’s go home, I want to have my pickles and I want to have my pizza.” By the way, to ensure there is no bacteria exposure, the items he is able to have need to be cooked, fresh, at home. No restaurant food because of the lack of control over how the food is prepared and cooked.

THE FIRST THING NICHOLAS TOLD DAD ABOUT HIS EXPANDED DIET
The first thing Nicholas told dad, who was at work, was can you buy some pickles and pizza on your way home.

LOVING GOD AND FAITH IN HIS WORD
God gives us gladness, comfort, and peace. Through Him, only, do we find the strength…we’ll find everything that enables us to push, fight, and have moments of happiness.

June 13, 2005 Blood Counts:
WBC: 4.1
HGB: 11.0
PLTs: 197
ANC: 3,230

 


Sunday, June 12, 2005 10:25 PM CDT

Day plus65 (Day 205 since Nicholas’ leukemia diagnosis)

FUN
Nicholas had a great day with mom & dad's niece, Stephanie, and a couple of our friends and their daughters. They played, and played, and played: Duck-Duck Goose, Hide-And-Go-Seek, "House" in the playroom, and lots of just running around at the RMH. (Please click on View Photos)

TOMORROW
Our prayers are that Nicholas' Cyclosporine level is in range as well as the liver chemistry. We are so fortunate to have good days and so fortunate to know that through God we will have good days. We focused on fun today and didn't spend much time thinking about "this leukemia and bone marrow stuff."

June 12, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, June 11, 2005 11:59 PM CDT

Day plus64

GOOD DAY
Good day, Nicholas had much more energy than what he’s had this past week. He didn’t even take 1 nap, he has been taking 3 lately. He’s definitely on the mend again. And his skin looks so much better.

DAD WAS GONE FOR THE EVENING—NICHOLAS’ OLDEST BROTHER GRADUATED FROM COLLEGE
Dad was off celebrating the graduation of Nicholas’ oldest brother, Chris, from UC Santa Cruz. Mom & dad are so very proud of Chris, he has done a tremendous job of earning very good grades, playing 4 years of basketball, and training hard in the off season. We couldn’t be more proud.

It was nice for dad to see all of our friends and family that came to celebrate Chris’ success, we haven’t been able to see many of them as often as we like. It was a great evening mixed with emotions of celebrating Chris’ achievement and mentally caring for Nicholas’ daily achievements. We know balancing being "there and here" are natural feelings for parents under any circumstance. And this one is so hard because of the complex emotional challenges under this leukemia circumstance.

Mom & Nicholas couldn’t be there as Nicholas cannot travel beyond 15 minutes of the hospital. Web cameras were connected so everyone could interact and Nicholas & mom really enjoyed it, a lot.

No clinic or day hospital all weekend, two days off from getting up and out early, what a nice treat. We’re anxious to see what his Cyclosporine level will be on Monday and hope it has maintained a therapeutic level so we can start tapering off the steroid—it makes Nicholas hungry 24/7. And with a limited diet, it’s hard trying to be creative with his food. Lately it’s been either salami, Eggo waffle with a little “smidge” (as Nicholas says) of syrup and a smear of margarine, or his baked chicken leg. It seems like it’s getting kind of boring for him. Oh, and he’s loving being able to have milk again, well not actually milk, but the Lactaid kind.

June 11, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, June 10, 2005 11:45 PM CDT

Day plus63

CYCLOSPORINE IN RANGE
Yes, yes, yes the Cyclosporine level is at 296 and in range (240-310). This is only the fourth day it has been in range over the past three weeks. We have not had two consecutive days with it being in range, and we need consecutive days now! PLEASE PRAY with us. Sustaining the level manages the GvHD and would enable us to comfortably taper down the steroid dose soon, toward getting off of it. His gut appears to be continually healing and this is a real good thing and positive indicator regarding the overall issue of GvHD.

AMAZING
Now that the Cyclosporine is in range, it is amazing how quickly the rash over his body is improving. And it was wonderful to see Nicholas display more energy today. Combining energy and a desire for more of what he wants to eat, Nicholas raced mom down the hall at the RMH for two extra slices of salami.

CYCLOSPORINE ISSUE
Monday, Nicholas will have more labs drawn for the Cyclosporine level and chemical levels like those linked to the liver. We NEED the levels to be in range otherwise an additional medicine will be added (linking back to a journal sometime this past week). The additional medicine will suppress his immune system further, and subject him to greater risks for infection. PLEASE PRAY with us, we do not want this.

CHIMERISM AT 98 PERCENT
GREAT news, the Chimerism test results from the marrow drawn June 6 reveals that 98 percent are donor cells (up from 95 percent on May 11 the first time this was done since the BMT). Remember the goal over time is 100 percent of the donor cells. Please refer to the April 27th journal for more information.

June 10, 2005 Blood Counts:
WBC: 2.1
HGB: 11.3
PLTs: 170
ANC: 1,300

 


Thursday, June 9, 2005 11:59 PM CDT

Day plus62

A GOOD DAY AND EVENING
Nicholas had a relative good day today (Thursday). He was less tired and his glowing personality was more consistently present throughout the day. Remember, he has maintained his amazing high spirit and concern for others' happiness—really—than complain about anything going on within his body or mind. He is truly amazing, and I thank God for Nicholas' outlook and thank you for your continued love & prayers.

Nicholas “coached” the doctors into letting him have one slice of salami tonight. During the clinic appointment this morning he said to the doctor something like: Can I have one slice of salami today, and only one so I can see if my stomach handles it okay—what do you think?

The doctor said yes and really appreciated his negotiation style. Oh, Nicholas LOVED the taste as he reflected on the taste as he remembered it. He simply said, “Ummmmmmmm.”

Mom is really, really tired. However, she is doing an amazing job with mixing the medicines, administering medicines orally and via IV, getting up throughout the day and night to administer the medicines and manage the pump, playing, teaching, etc. AND the easy part, LOVING Nicholas! Making time to take care of ourselves is still mom & dad's challenge.

EXPECT MEDICAL UPDATES TOMORROW (FRIDAY)
Tomorrow (Friday) we will get some specifics on all that is going on: Cyclosporine level, chemical levels regarding the kidneys and liver, GvHD, etc. We do not expect results from the Cytogenetics or Chimerism lab work tomorrow.

June 9, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Wednesday, June 8, 2005 11:56 PM CDT

Day plus61

CYCLOSPORINE AND IMPACT TO THE SKIN AND GUT GvHD
The Cyclosporine level came down a little more, to 220, and is still low and out of range. This is having a negative effect on the skin GvHD—it is not visibly improving. And it appears that the gut GvHD that has been healing pretty well may be negatively impacted based on his stool output tonight.

First intervention for tonight was to increase the IV Cyclosporine to 90mg.

OTHER LEVELS
The doctors and mom & dad are happy that the Bilirubin and levels linked to the liver are in range.

WE PRAY
Regarding the Cyclosporine, Bilirubin, skin GvHD, gut GvHD, and liver GvHD we pray for complete healing now. We pray that this leukemia and bone marrow transplant process become only a “past” check point on Nicholas’ journey. That it serves as a point of reference to witness for our Father God. We know that God is a loving God and that His omnipotence, omniscience, and omnipresence are around Nicholas. The glory of all the wonderful blessings—and the progress as well as healing—witnessed belongs to God. We claim this and ask for “more” with the understanding that it is “not my will be done, but thy will be done.” In fact, we pray for all the kids, everyone impacted by leukemia to right now feel God’s love around them. That His love provides comfort, peace, and direction for healing.

Have we prayed enough? Have we asked for your continued prayers too much (understanding that we have heard from so many of you that Nicholas is constantly in your prayers)? We hope, we trust that you too feel that there is not ever a time to stop praying. Please, please let it be known to God the love and glory to God that Nicholas’ healing brings.

WE ARE FRUSTRATED AND THANKFUL
We are so frustrated with all that is going on. Our exhaustion gives way to our love and passion for our little sunshine—Nicholas. We are thankful for Nicholas’ wonderful way of being, your support, and your actions for Nicholas and so many other kids and families linked to all of this leukemia “stuff.”

We, we, we. Please do not get frustrated with the we, we, we. Mom & dad are sensitive to asking things of you as well as our talking about “we.” I trust you understand and are right with us in our continued fight. Mom & dad need you and we are thankful that you are with us.

WHAT NOW
Back in the clinic tomorrow for more lab work, analysis, and consultation. This has become a daily part of the process and that is okay. The push goes on for a perfect outcome, not just an outcome.

June 8, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Tuesday, June 7, 2005 11:21 PM CDT

Day plus60 (Day 200 since Nicholas’ leukemia diagnosis)

TIME PASSED, AND WHAT THIS JOURNEY MEANS TO US
Wow, 200 days has passed. It’s easy to recognize that we have been on our healing journey for so many, many days, because it is the constant way we now live. However, it is hard to live this journey day, after day, after day. We first understand Nicholas is the focus of our energy and he is the source of our strength through God. We cannot complain because it is Nicholas that is personally fighting to beat leukemia and it is our fight for understanding and to listen to God for direction.

And the lives of our other three boys are forever changed, as the time passed, is time passed. So we look for lessons through this fight. Without this fight (journey) there are aspects of life & learning that we would not have been able to understand, learn, and grow from. Many aspects of life do not hold the same meaning for us anymore: what we look forward to during weeknights, weekends, holidays, etc. And it is okay; perhaps we have one of the greatest gifts—a clearer focus on life, learning, and loving.

INITIAL COMMENTS ON YESTERDAY’S IMPORTANT PROCEDURES
Our doctors reported that the preliminary look at yesterday’s marrow draw shows no abnormal cells. They are very pleased with what they saw, again the sample looks very cellular (lots of cells)—a good thing. We are anxiously waiting for the cytogenetics and chimerism analysis and results.

TODAY
Nicholas had a very quiet day that concluded with popcorn and a movie. He and a patient named Kaeli also at the RMH spent the entire evening in the family room of the immune wing with their moms. Although there are no visible signs of improvement on his skin, Nicholas had no complaints today—thank you God! If you noticed that his skin is darker around his eyes, the doctors report that this is a temporary result of the chemotherapy.

TOMORROW
Tomorrow morning’s clinic appointment includes a blood draw that will result in Nicholas’ current Cyclosporine level, liver enzyme’s levels, and other chemical levels that will tell the internal picture of what’s going on. Through God, healing can be in His speed and we know that there is nothing that could be going on that He cannot control. PLEASE PRAY WITH US.

June 7, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, June 6, 2005 7:57 PM CDT

Day plus59

THIS MORNING’S PROCEDURES WENT WELL
It was a very long morning and early afternoon at the hospital and clinic but all went well. We do not ever want to treat these procedures as routine, however, we are certainly happy that they are routine in terms of how well they have gone and how well Nicholas has gone through them.

When mom & dad arrived into the recovery room just moments after Nicholas did, he was already awake. Generally, he sleeps for about one hour while coming out of the operating room and once he is into the recovery room. I guess, he gets his energy from, well, God—it is not based on what you would generally witness. Just like the past week, although he has been tired he can quickly shift into high energy.

WHAT THE DOCTORS SAID
The marrow was clear and the smear looked very cellular—a good sample. Results on the various outcomes and tests (discussed in yesterday’s journal) will come in over the next day through a couple of weeks.

CYCLOSPORINE
Today’s Cyclosporine level is 232, still low and out of range. Beginning with tonight’s 9:00pm dose, we are increasing it from 75 to 85mg via IV.

GvHD AND HIS SKIN
The skin GvHD is still flaring up. Our doctor said Nicholas’ GvHD has been tough to control, and it is not indicative of the marrow he received from the donor, as you would normally see this with a mismatch and not from an 8 for 8 match. As stated in earlier journals, he is metabolizing the Cyclosporine so fast which is a factor toward trying to manage the GvHD. And as a result he is on the steroid longer than all of us would like.

We are now talking about adding another medicine and we would not like to do so because it would further suppress Nicholas’ immune system and subject him to increased risks of infection. Without any improvement by this Thursday, we will be making some intervention decisions. PLEASE PRAY WITH US!

OTHER NUMBERS WE ARE WATCHING
Kidneys: The kidneys are looking great and all the numbers are normal (in range.)

Liver: The liver enzymes are coming down—GOOD. AST is normal and the ALT is high (but coming down).

RESTING WAS THE MOOD OF THE DAY
Understandably, Nicholas was tired and he spent just about every moment of the day resting or sleeping. Thinking about the fever last week, and although the cultures have been coming back negative (good), it’s possible he contracted some type of respiratory virus that could be causing him to be so tired this last week.

Nicholas has been working so, so hard since the leukemia diagnosis and through all of the BMT regimens. And he still does not complain—what an angel. And he certainly brightens up our days and nights—and we need that although it should be mom & dad brightening up his days and nights. We are so fortunate!

June 6, 2005 Blood Counts:
WBC: 3.4
HGB: 11.5
PLTs: 208
ANC: 2,200

 


Sunday, June 5, 2005 11:12 PM CDT

Day plus58

VERY IMPORTANT PROCEDURES/TESTS TOMORROW (Monday)
1) Tomorrow, Nicholas will go to the operating room for a 3rd of five lumbar punctures and intrathecal (injection into the spine) chemotherapy. These five make up the last of the chemotherapy Nicholas should forever receive. It is part of the BMT regimen to ensure that any leukemia cells that may have survived the conditioning regimen are destroyed. The five are being done every two weeks.

2) Also, the 2nd of three bone marrow aspirations and biopsies will be performed. The results should be known in 2-3 weeks, and these three are being done once a month to confirm that he is still in remission. Marrow will be used for cytogenetics test-DNA indexing, to confirm that there are still no hypodiploid cells (reason for the BMT). Results last month were negative—GREAT.

3) And marrow will be drawn for the DNA chimerism test discussed in the April 27th journal. The results should be known in 1-2 weeks, and it monitors the success of the BMT by determining the relative percentage of Nicholas’ and the donor’s T-cells and Neutrophils in the marrow. The goal over time is 100 percent of the donor cells. The first one on May 11 revealed that 95 percent were donor cells—great start—and we are praying that tomorrow's is at least 95 percent or higher. We need to have it going up, not down.

Please PRAY with us!

FUN DAY
Nicholas enjoyed playing on bars, “light” climbing on chains, and playing with water guns with his life-long friend Joey. With the water guns, it was the two boys against their dads. Somehow, our size didn’t matter as they used clever maneuvers to keep us off guard and to win by wetting us more than we did them. And then they relaxed playing a Shrek 2 play station game.

Dad was very happy to see Nicholas laughing, running, and enjoying himself—doing things that he always has done. Especially because he has been very tired lately. We are so thankful for these moments and friends that help us along the way.

Mom was out—just across the street at the shopping center—with two of our other three sons and a couple of friends. Dad was happy to see mom try to do something normal; yes, shopping is quite normal for mom and the boys.

Mom & dad need these fun moments because the rest of the time it is so very, very hard going through this journey.

PLEASE REMEMBER, TOMORROW IS ANOTHER BIG DAY OF PROCEDURES/TESTS

June 5, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, June 4, 2005 11:01 PM CDT

Day plus57

CYCLOSPORINE IS BACK DOWN, OUT OF RANGE
We were so glad to see his Cyclosporine level get into range yesterday, and so sad/frustrated that today it fell to 228, out of range again! This past Wednesday we started the IV Cyclosporine at 75mg and we were discharged yesterday with administering it at 70mg because previously with “IV” Cyclosporine it continued to go up when we got it in range. Tonight’s instructions are to administer 75mg. What do we do about this “roller coaster?” Well we will start at the beginning in terms of PRAYER. We will seek God first, and we ask for your prayers once again. Mom & dad know that we have asked this of you over and over and over—we need you and know that your prayers make a difference. Thank you so much for giving of yourselves through prayer!

WEB CAM INTERACTION WITH MONTESSORI CLASS LUAU
Nicholas had a really good time this morning interacting—via web camera we set up—with his teacher, classmates, and parents during his class’s annual Luau. We are so grateful for wonderful friends through his Montessori school. The parents have been incredibly proactive at finding ways to keep Nicholas and the other kids connected. It is definitely a labor of love, because some of the things that we have done have not been easy (like coordinating logistics for the web camera hook up and last minute changes when things were not working quite right). The parents and teachers make great things happen—THANK YOU!

MOMENTS OF RELAXATION ARE HARD TO FIND
24/7 mom and dad are focused on Nicholas’ healing and cure. Finding moments to relax are very hard to find so it is especially nice when friends help provide peaceful moments, even if they are just “moments.” Thanks Soha, and Neda and Hana, for helping mom and Nicholas. These moments help dad too: seeing mom just take in moments of sunshine and a warm breeze and Nicholas playing with others, seemingly, without a worry in the world. Loving friends from home, work, and Nicholas’ school—we are fortunate.

NICHOLAS HAS BEEN TIRED THE LAST COUPLE OF DAYS
While Nicholas has been tired more than normal, his spirit is still full of engaging energy and he is so quick at being clever. We are so fortunate to have Nicholas blessed with a warm heart that continuously touches others in a beautiful, caring way. Here too, it seems like a circle-of-love as he gives it, he receives it. We are THANKFUL FOR OUR LOVING GOD.

We do not know what tomorrow brings, but through God we will find joy, happiness, and love.

Tonight will be just fine, and tomorrow will be great!

CLICK ON VIEW PHOTOS FOR A SNAP-SHOT OF TODAY VIA PICTURES:
1) Morning, mid-day, and evening his spirits are high despite being tired in between. It's amazing how he finds energy when needed.

2) Have you noticed that his eye brows are thicker and darker. In fact, his hair is starting to grow back and it is darker. Another part of the BMT process is that his hair most likely will change color, this is what we are seeing. And the thicker eye brows (they may become almost like a uni-brow) are a result of the Cyclosporine. Once he is off the Cyclosporine he will loose the hair that is growing places where he didn't have hair before the BMT.

3) Even with the full body skin GvHD, he does not complain about the uncomfortable feeling it generates. Thank you, God!

June 4, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, June 3, 2005 11:59 PM CDT

Day plus56

OUT OF THE HOSPITAL
Late afternoon Nicholas was discharged from the hospital. The fever that surfaced Wednesday broke quickly and he remained without fever. The cultures were negative. The decision for discharge included that mom & dad—well mom—would have to administer IV Cyclosporine. (Dad will play a supportive role—including to get up at 3:00am each day to take an item out of the refrigerator because it needs to be out 6 hours before the 9:00am administration via IV.) The Cyclosporine levels, skin GvHD, and liver GvHD are major focus areas. But we are THANKFUL that his gut continues to be healing well!

Tomorrow morning we have an 8:30 appointment in the clinic to check his Cyclosporine level.

ADDITIONAL, HEAVY RESPONSIBILITIES FOR MOM
Along with the already heavy load of administering medicine to Nicholas orally and IV, adding the Cyclosporine via IV generates a lot of work and “concentrated” effort for us. And of course we will do anything and everything for our little sunshine!

The Cyclosporine is in range at 266; what a difference IV Cyclosporine makes. The issue here will be to keep it in range and administering via IV instead of orally is doing the job.

SKIN GVHD
Prior to the fever on Wednesday, his skin was looking good compared to the inflamed rash over his entire body during the height of the skin GvHD. With the Cyclosporine being low and out of range for the previous nine straight days, an invitation-like situation was apparently created and the skin GvHD is now back. After the first four IV doses Wednesday night through Friday morning, the skin was looking better this afternoon, but tonight it is looking “harassed.” Will talk with the doctors tomorrow morning in the clinic.

LIVER GVHD
Monitoring and ready to be proactive is the status (as indicated in yesterday’s journal).

THIS WEEKEND
Tomorrow Nicholas’ pre-school class is having a Luau and we have planned to use web-cameras so Nicholas and the class can interact simultaneously. Visits by family and friends again are planned to fill the weekend, and fun with water is in the plans.

Nicholas has been a little tired the last couple of days although his spirits continue to be high. We’re sure the visits this weekend will provide some great interaction and jumpstart his energy level.

June 3, 2005 Blood Counts:
WBC: 3.8
HGB: 10.2
PLTs: 188
ANC: 2,926

 


Thursday, June 2, 2005 5:16 PM CDT

Day plus55 (Day 195 since Nicholas’s leukemia diagnosis)

STATUS FROM YESTERDAY’S RE-ADMISSION INTO THE HOSPITAL
FEVER: Nicholas' fever broke yesterday evening and he has remained a-febrile (without fever) and the cultures drawn yesterday are negative so far (a good thing). We are very, very proud of Nicholas’ amazing strength.

BACK TO THE RMH VERY SOON: With Nicholas' strength and healing we are planning to be discharged tomorrow afternoon as there is at least a 48 hour time period from the time the fever breaks for inpatient care. And we hope to get by the Cyclosporine and liver issues.

CYCLOSPORINE:
1) This morning's Cyclosporine level was 202—still below the target range of 240-310.
UPDATE 11:45pm-This evening's level is now 237.

2) If we are discharged tomorrow, we will have to administer IV Cyclosporine—this is a discussion point for the doctors to have this administered out of the hospital and we will do whatever it takes… “period.” Whether we are in the hospital or not we will do everything for Nicholas, with God's guidance.

GvHD FLARE UP
With the, now, 9th straight day of a low Cyclosporine level, the skin GvHD that Nicholas previously went through is creeping back. His skin is inflamed, and now that we are administering IV Cyclosporine and its effect of increasing the level, toward stabilizing it should prompt control of the skin GvHD. AND we will push and fight this disease because we will not settle for just getting by or holding it back—we will win this and the overall leukemia fight!

NOT GOOD—NOW LIVER GvHD
1) The doctors do not have a “huge” concern right now, and feel that the IV Cyclosporine will lessen their concern once we get the Cyclosporine level right—therapeutic.

2) Again, we have to taper down and get off the steroid (now Prednisone), and we cannot taper down until we get the Cyclosporine level right.

3) Another option from Cyclosporine to manage the liver function is Tacrolimus and we may have to switch to it. However, it is not as effective toward managing/controlling skin GvHD or gut GvHD.

4) But, if the liver enzymes continue to be high, we will have to strongly consider administering Tacrolimus. Monitoring goes on!

IT DOESN’T HAVE TO BE THIS WAY
Thankfully, Nicholas has done remarkably well on many segments of this journey. In fact, amazingly well. So the process, roller coaster effect, and steps toward healing do not have to be “down” times. PLEASE CONTINUALLY PRAY with us, confessing that the Word of God abides in Nicholas and delivers to him perfect soundness of mind and wholeness, in his nature, in his immortal spirit, and even the joints and marrow of his bones. That His Word is medication and life to Nicholas’ flesh, for the law of the Spirit of life operates in him.

Please click on "View Photos."

Thank you so much!

June 2, 2005 Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

June 1, 2005 Counts:
WBC: 5.0
HGB: 10.9
PLTS: 205
ANC: 4,300

 


Wednesday, June 1, 2005 9:17 PM CDT

Day plus54

NICHOLAS IS BACK IN THE HOSPITAL
Today Nicholas was at the LPCH-Stanford clinic for planned follow up and administration of IVIG. Vital checks are done before, during, and after this treatment, and after the treatment the final temperature check revealed that he had a fever of 101. Nicholas was admitted into the hospital this afternoon.

While being admitted, today's Cyclosporine results came in and his level of 142 is further out of range (for the 8th straight day). There is some sense that the GvHD could flare up so tonight at 7:00 he has gone back onto IV Cyclosporine, 75mg two times a day. Right now the doctors feel it is a metabolism issue verses an absorption issue.

NOW WHAT
Antibiotics Vancomycin and Ceftazidime are being administered, cultures were drawn to identify any infections, and a urine analysis is being performed.

PLEASE JOIN US IN PRAYERS for Nicholas' continued shielding from bad things happening, and prayers for his healing. Amazingly his spirits are still high—what a blessing and we thank our Loving God for enabling Nicholas to shine brightly. We know that it is "not my will, but thy will be done" and we know that Nicholas' amazing "way of being" during this journey is shining an unforgettable light on God's omnipotence, omniscience, and omnipresence. WE ARE FIGHTING AND PRAYING: Let it shine, let it shine, let it shine.

Tuesday, May 31, 2005 11:42 PM CDT

Day plus53

CYTOGENETICS—VERY GOOD NEWS
The analysis is complete and the results are negative for signs of hypodiploid cells. Remember, this is the DNA index analysis that in mid-December 2004 (a little more than a month after the November 19 leukemia diagnosis) revealed the hypodiploid situation and was the reason a BMT was the best option for curing Nicholas. He continues to be in remission since November 29. We are so thankful for the good news and praise our Loving God.

CYCLOSPORINE WOES—WE NEED YOU AND YOUR PRAYERS
Today’s Cyclosporine level is 158, the 7th consecutive day that it has been out of range (240-310).

LIVER ENZYMES—WE NEED YOU AND YOUR PRAYERS
The liver enzymes have been astronomically high (for example one factor with the range being less than 60, his level was 741 yesterday. And today, although it came down some, is still way too high at 562. The doctors are watching this extremely closely and we are hoping it continues to come down.

If not, testing will be performed toward identifying what’s causing it to be out of range. And the doctors talked about other next steps, including a liver biopsy. We PRAY that Nicholas is continually “shielded” and that a biopsy is not necessary because it is invasive and poses its own risks. We also PRAY that it is just a delayed reaction from when the Cyclosporine level was too high around May 25. A Cyclosporine level that is too high can harm the liver and affect the levels.

OTHER THANKFUL “FORS”:
…the skin GvHD. It is looking better and better.

…his gut GvHD that appears to be healing well (remember this will take several months). His appetite is great and his stomach is not having any trouble being re-introduced to a variety of foods. His consumption/diet started out with just liquids and gradually included the following: broth, Jell-O, toast, Popsicles, tuna, baked chicken, pretzels, bananas, bagels, animal cookies, steamed white rice, waffles, and a variety of drinks with most of them diluted with water along the way. And today he was able to add a See’s vanilla lollipop to his list.

THE NEGOTIATOR
When Nicholas reaches his limit for the day of one food item and he is still craving it, he negotiates by giving up another daily food item for what he is craving. We have talked about him being such a caring little boy—and he is, however, right now he doesn’t care much for mom or dad eating things that he can’t have. He says, “Stop eating, I told you that you can’t eat anymore. Throw it away.” And “Oh, you can’t have that because I like that.”

OUR LOVING LITTLE BOY
We love our little boy so very, very much (as all parents love their children). And this journey is so very, very hard. And, we will WORK and FIGHT so very, very long and hard!

We understand that it is a process toward healing and we sure do get frustrated at times. But we will close the night with a softer moment by sharing the following.

Nicholas says the cutest things that keeps us entertained all day—it is never a dull moment. This is great because the steroid, Prednisone, can cause mood swings and that has not been are experience with Nicholas. Well, except when we are eating something that he wants.

May 31, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Monday, May 30, 2005 11:27 PM CDT

Day plus52

PUMP ALARM SOUNDING, NO NURSE, SO MOM-NURSE WAS UP LATE, EARLY
Remember the late night, very early morning beeping of the pumps while in the hospital? Remember the sleep interruptions when the nurse would come into the hospital room to care for Nicholas and the pumps (not that the nurses were noisy but our attention was always focused on what was going on around Nicholas)? Guess what happen a couple hours (1:00am) after dad gave Nicholas his Cyclosporine? Well, at the RMH the nurse is mom and last night, early morning around 3:00 the alarm from Nicholas’ pump (hydration was being administered) was sounding. It was sounding repeatedly after mom was managing the cause repeatedly. Finally, mom had to call the LPCH for pump intervention. Mom had to re-program the pump and was then able to go back to sleep.

AND WE HAD AN EARLY MORNING SCHEDULED
What a beautiful, bright, warm, morning. Mom was very tired, and dad woke her saying, “Rise and shine, for this is the day the Lord has made. Be glad, rejoice, give thanks.” Then mom got up, then Nicholas. Off we went for Nicholas’ blood to be drawn to check his Cyclosporine level.

We then drove a couple of miles down Sand Hill Road looking at a park for a possible graduation get together in a few weeks. First we crossed Highway 280 for a brief scenic drive, watching horses at a horse park galloping, jumping, and full speed pacing (or running, not sure what it’s called). Coming back we went by a small, neighborhood park suggested by one of his doctors. Away from the park, up a very small hill were several cows under a big, shady tree. Nicholas watched one of the cows pulling, really, at a low hanging tree branch and two calves going head to head in a playful way.

THE REST OF OUR DAY AND EVENING
With two friends, we went on a very, very short scenic drive and made our way to a park. There, four simple things made for an exhilarating time—grass, hose, water bottles, and water. It was GREAT, four adults and Nicholas actually revealed five big kids having fun squirting each other with a water hose and splashing water onto each other from a water bottle. Running, trenching, splashing, laughing, and some good memories of fun under the sun.

The evening started with another tasty, homemade dinner. Nicholas capped off this moment negotiating for a dessert-like item (to him I guess because he is on a limited diet). He orchestrated a trade of a white piece of bread for an eggo waffle. Shower, playing, and reading concluded our day.

May 30, 2005 Blood Counts:
WBC: 3.5
HGB: 11.2
PLTs: 192
ANC: ? (complete information not received for calculation)

 


Sunday, May 29, 2005 11:33 PM CDT

Day plus51

We had a wonderful Sunday! Friends and family filled the day with a lot of joy and happiness.

CYCLOSPORINE
Like you probably are, we are tired of this heading (Cyclosporine) but like a challenge in life, this is life and we will keep approaching, pushing, and fighting to either get through it or go around it. TOMORROW morning we have an appointment to check his Cyclosporine level—the results will not be known until mid-afternoon.

FIRST 100 DAYS POST-TRANSPLANT (In A Question, Answer Format)

WHY IS NICHOLAS STAYING AT THE RMH VERSUS HOME SINCE HE WAS DISCHARGED?
Because complications may develop suddenly during the first weeks following hospital discharge, it is important to be able to return to the hospital quickly. Key factors are because we live farther than a 30-minute drive from the hospital (under any traffic situation) and because the drive involves crossing a bridge. It is not uncommon to be readmitted to the hospital after transplant for treatment of fevers and/or varicella zoster (same virus as chicken pox).

LAST WEEK HE WENT TO THE HOSPITAL DAILY, HOW OFTEN WILL HE GO TO THE HOSPITAL/CLINIC?
Last week after discharge, Nicholas was scheduled to return to the clinic the following day and at least twice a week for blood counts, IVIG (immune globulin, that he will receive about every 30 days for 9 months), and vital signs. A physical exam is to be done at least once a week by his doctor and he will be assessed for adequate nutritional and fluid intake. (We went daily because of the Cyclosporine issue.)

Also, Nicholas may be cared for in the Day Hospital if he requires a blood or platelet transfusion, IV hydration, and/or other medication administration.

(Mom & dad charts all intake daily, and uses a spread sheet to help manage the many medicines required to be administered round the clock. Including the TPN that is now complete and hydration.)

HOW LONG DOES IT TAKE FOR HIS IMMUNE SYSTEM TO RECOVER FROM THE BMT?
It takes time to fully recover from a BMT, and Nicholas’ energy level may be low for a period of weeks to months following the transplant. (Thanks to God, we have seen Nicholas sustain his energy.) It takes a minimum of 6-12 months for a patient’s immune system to return to its normal function, and there will be some restrictions on activities during this time.

WHAT ARE THE RESTRICTIONS AND ISOLATION?
Nicholas is NOT allowed to return to school, go into public buildings, attend crowded events (concerts, church, movies, parties, shopping centers, restaurants, etc.), or swim until his immune system shows signs of recovery. The only buildings that he is permitted to go into are the RMH (immune wing only) and the hospital.

He is required to wear a mask when he enters the hospital or clinic to provide protection from potential infections. Nicholas does not need to wear a mask if outdoors and away from crowds.

Other areas and activities that need to be avoided until isolation is lifted include areas of construction, remodeling sites, and sandboxes. Nicholas can not swim in lakes, pools, the ocean, or be in hot tubs until his Broviac (central line, catheter) is removed. He also has to avoid household plants and gardens to minimize exposure to molds and fungus at this time.

Nicholas needs to wear sunscreen at all times when outdoors and even on cloudy days. Both chemotherapy and radiation therapy cause increased sensitivity, so he is susceptible to sun burns.

He can not get any new pets until he is out of isolation. Nicholas needs to avoid being licked by pets and should not come in to contact with animal waste (like a cat’s litter box) or pet’s food dish.

WHEN WILL HIS BROVIAC BE REMOVED?
About 9-12 months from the BMT date.

SO WHAT HAPPENS AFTER DAY PLUS100?
If Nicholas’ condition is stable at Day plus100, he will be able to return home. Children’s Hospital-Oakland will then resume the care of Nicholas as they did prior to the BMT. He will have to return to LPCH-Stanford for follow-up at 6 months post-transplant and then yearly after that for 5 years post-transplant. If any complications, such as chronic GvHD, develop, he may be required to be seen more frequently at LPCH-Stanford by the BMT service.

After Day plus100, some of the restrictions and isolation will be able to be relaxed. (We will talk about that at that point.)

WHAT ARE THE LONG-TERM COMPLICATIONS?
Chronic GvHD can develop 3-12 months after transplant and may affect up to 25percent of pediatric patients. Chronic GvHD may cause infections, skin abnormalities, dry eyes and mouth, and/or dysfunction of the liver, lungs, or gastrointestinal tract. Because treatment of GvHD involves suppressing the immune system, patients may remain in strict isolation for a longer period than 100 days post-transplant.

AND NOW A QUESTION AND ANSWER FROM MOM & DAD. WHY ARE WE THANKFUL?
We are thankful that God is shielding Nicholas and operating within the minds and hands of the nurses and doctors. He is directing Nicholas’ journey and His direction is the “right” direction. And we are thankful that he is providing us with the ability to make the right decisions. We are thankful for His love that enables us to care for Nicholas with strength, energy, and clearer minds to “see” love along the journey.

Have a wonderful Monday—and thank you, again!

May 29, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Saturday, May 28, 2005 11:23 PM CDT

Day plus50 (Day 190 since Nicholas’ leukemia diagnosis)

HALF WAY TO DAY Plus100
Nicholas is doing GREAT and he is half way to Day plus100 (100 days after the BMT). The significance of Day plus100 is that if he is stable at that time he will be able to return home. More on the Day plus100 tomorrow.

GOOD DAY—THANKFUL
Mom & dad are thankful about everything because with everything that is going on in our lives, we are able to be closer to the things that really matter. Following is what Nicholas said responding to being thankful. “I’m just happy! I’m happy about everything—that I’m out of the hospital for a while. Oh write that down, that was kind of cute.”

CYCLOSPORINE—THIS DOES NOT GET US DOWN (FRUSTRATED, YES)
The Cyclosporine level is now 149 and still low. In the last 9 days it was in range (240-310) just twice: 198, 294, 312, 294, not sure, 480, 134, 134, and 149. Nicholas has gone from 90mg three times per day to 75mg and this evening back to 90mg.

Thinking back about being thankful, as always we are so thankful that God is watching over Nicholas and shielding him. Thankful that He is touching mom & dad in a way that enables us to trust in Him as God—this helps us to be free from fear, although frustrated, and energized to be what we need to be for God and Nicholas. And thankful that our three older sons have been understanding about our time and energy.

I know we are updating you here on the Cyclosporine, however being thankful has a place everywhere. So a few more things, okay?

OK, BACK TO THANKFUL FOR A MOMENT AND GUESTBOOK ENTRIES
We are so thankful to you for the guestbook entries that have made us laugh, that have shared stories, and helped us to either feel supported or that was supportive, etc. Thank you!

And thanks to Andy’s mom in Massachusetts; we appreciated your CaringBridge visit and words from experience. We, too, now pray for Andy’s healing and recovery. Not sure exactly why, but the following words from a song came into my mind: “…this little light of mine, I’m going to let it shine…” Andy and Nicholas are like little lights, through God they have everything to shine brighter and brighter, longer and longer, & better and better.

LAST NIGHT, LAST TPN
Last night (Friday) and running through this morning was the last administration of the TPN. Nicholas is now on hydration along with other medicines, including a multi vitamin and Folic Acid. Do you think he is ready to eat? Yes he is, however, he is not free to eat just anything. His diet is still closely directed and monitored.

FRIENDS
Nicholas was happy that friends visited today. It also meant another person to play with Nicholas and for mom & dad to stay connected in a seemingly normal way. The friends and fun didn’t stop there this evening. Nicholas had a very nice telephone call from a classmate from this year's class, and guestbook entry from a previous classmate that was a very nice surprise. Oh, the answer is no; Nicholas is not allowed to eat food from restaurants right now so no McDonalds at the RMH.

Early evening Nicholas spent time in the RMH family room playing board games. He played with the brother of another BMT patient at the RMH. The brother was his sister's donor.

SLEEPING A LITTLE LONGER TOMORROW MORNING
For the first time since Tuesday, mom & Nicholas do not have to get up early and go to the clinic for follow ups and lab work. His Cyclosporine level will be checked Monday.

May 28, 2005 Blood Counts:
WBC: NA
HGB: NA
PLTs: NA
ANC: NA

 


Friday, May 27, 2005 11:21 PM CDT

Day plus49

NOTES:
1) At the end of this journal is a recap of May 26.
2) Please click on View Photos to see new photos at the RMH.
3) Updated photo albums, under Links, should be ready by the end of next week. All the photos that have been on View Photos during his pre-BMT regimen up to current photos will be included along with other photos giving insight to behind the scenes.

CYCLOSPORINE
The Cyclosporine level is coming back up. It’s at 168 and the target right now is 250. So guess what, tomorrow morning—Saturday—we are going back to LPCH-Stanford for a lab draw to check his level. We say “Saturday” but it really does not matter because we are putting time in God’s hands as well as Nicholas in God’s hand and know that there is no better time or place than to be with Him.

CYTOGENETICS
The Cytogenetics are still being analyzed and we expect the results soon. Remember, this is the DNA index analysis that in mid-December 2004 (a little more than a month after the November 19 leukemia diagnosis) revealed the hypodiploid situation. Which was the reason a BMT was the best option for curing Nicholas although he had responded to chemotherapy extremely well, was and has been in remission since November 29, and was sailing through the crazy ordeal that became our journey.

NICHOLAS
He Is Loving People
Nicholas is doing GREAT. He has developed some wonderful skills talking with you, nurses, doctors, etc. and we are absolutely thankful that God has shown us so much joy in the times of pain. Nicholas is continually developing and maturing beautifully. THANK “YOU” for helping him, and mom & dad, as his interactions with you via the guestbook gives us many perspectives on this journey—providing continuous moments of love, laughter, and language opportunities as he ponders your expressions and inquires about words or things for clarity.

Late Nights, Early Mornings
Have you noticed, although he is out of the hospital and into the RMH, he has been back at the hospital every morning for follow up and checking the Cyclosporine level. Coupled with administering medicines shortly after midnight, mom isn’t getting too much “straight” sleep. With dad back at work, mom is handling just about all of the after-midnight stuff—but it’s Friday night so dad will handle it tonight.

This Weekend
Nicholas is excited about this weekend because dad & mom will be together with him 24/7 for three days. This has been a transition period for Nicholas—and mom as well as dad—as dad has been with him essentially 24/7 since the diagnosis on November 19, 2004. And, dad will be there whenever it feels right! Friends and family make up all three days of this long weekend. There is a wonderful blend of long-time friends of mom & dad; friends from work; friends of brothers—well, Nicholas' friends now; and family will help fill Nicholas’ life with continued joy.

HERE IS THE RECAP FOR MAY 26, 2005
May 26, 2005
Day plus48

THREE MOMENTS IN THE DAY AND CYCLOSPORINE
8:00am
“Momma, it’s chow time.” (Remembering that last night mom said he could have some more chicken when he wakes up.)

9:00am
Although out of the hospital, Nicholas and mom had to get up and go to LPCH-Stanford for lab work: blood counts and the Cyclosporine level. Dad was up and at work—what tremendous support we are receiving from every view of this journey.

From colleagues dad has known for 25 years to those met just once have expressed heartfelt love and prayers for our Nicholas. The nurses, doctors, and staff members in physical therapy, child life, family resource center, and on-and-on have more than done their job—they have demonstrated amazing passion for Nicholas AND Nicholas has developed amazing “love” for them. Our friends (great neighbors and Montessori school connections that developed into great friendships) and family, thank you for your continued checking up on us and finding ways to do things we have asked or lovingly given of yourselves to help ease “everything” associated with this “leukemia and bone marrow stuff.”

9:00pm
Remember, Nicholas is taking Prednisone (steroid being tapered down) that can make him hungry. During dinner, Nicholas noticed that dad had more rice than him. Nicholas said, “Daddy, why did you get a lot of rice and I got a smidge.”

CYCLOSPORINE
Not only are we on a roller coaster, we are on a merry-go-round as well. Now the Cyclosporine level is low at 134. Well, a good thing is that the dramatic shift from 480 indicates the kidneys are working well.

May 26, 2005 Blood Counts:
WBC: 4.4
HGB: 11.8
PLTs: 224
ANC: 3,476

 


Wednesday, May 25, 2005 11:01 PM CDT

Day plus47

TUESDAY NIGHT AT THE RMH (FIRST NIGHT)
Naturally, Nicholas was so happy to be getting out of the hospital. The first thing he said when walking out of the hospital was "I can't wait to smell the Expedition" (referring to one of our vehicles). At the RMH he told a staff member, "I LIKE it here at the Ronald McDonald House." We walked around a portion of the RMH yard and came upon a statue of Ronald McDonald sitting on a bench. (Please click on View Photos tomorrow night to see a picture of Nicholas and Ronald.)

Although mom & dad did a lot of work with the medical staff in caring for Nicholas in the hospital, mom is now doing all the administration of medicines and the TPN. 24-hours a day she is managing the schedule of medicines, dosages, pump, etc. Training provided understanding and learning about administration of medicines as well as what to look for in terms of signs of potential issues, before, during, and after administering the medicines. Of course we will do anything to care for Nicholas. But it is a scary and nervous feeling handling Cytotoxic agents.

Moving into the RMH is like moving into a house "period"--there was so much work to get our stuff in to the suite and organized with limited space. While confident, mom felt "overwhelmed and discombobulated," and was very, very tired.

AND it was nice for Nicholas, and mom & dad to be in regular beds.

TODAY
It was a hectic day. Mom and Nicholas were at the LPCH-Stanford Hospital at 9:00am for planned first day follow up, administering medicines, and an array of activities with Nicholas at the RMH.

For the first time in a long time, Nicholas had mom's baked chicken for dinner. He said, "Umm that was tasty." (Please click on View Photos tomorrow night to see this picture.)

CYCLOSPORINE
Can you believe it, the Cyclosporine level is too high--at 480--so we were told to skip the 1:00am dose and will have labs drawm tomorrow morning at a clinic appointment. We were not happy at all that it is out of range, and so high, but mom is happy to try to get some uninterrupted sleep.

It is getting late and WE ARE EXHAUSTED mentally and physically. More to follow hopefully tomorrow, but for sure if there is critical information. So please assume no news is good news and know that we still need you and your prayers. By this weekend we will provide an understanding about the remainder of the days up to plus100.

May 25, 2005 Blood Counts:
WBC: 5.9
HGB: 11.8
PLTs: 249
ANC: 4,342

 


Tuesday, May 24, 2005 5:03 PM CDT

Day plus46 (Day 186 since Nicholas’ leukemia diagnosis)

YES, YES, YES, NICHOLAS HAS LEFT THE HOSPITAL
It’s 3:03pm and after 55 days in the hospital for his bone marrow transplant, Nicholas has stamped—completed—this stage of his healing journey.

In case tonight we do not post a broad journal of the day, we wanted you to know the GREAT news above. And once again thank you for your CONTINUED PRAYERS as we begin the next stage of the journey. THANK YOU, THANK YOU, THANK YOU!

WHAT NICHOLAS SAID
1) As we were writing this journal, Nicholas said he likes letting people know how he is doing. And then he said, “Will you help me write letters and stuff to people.”

2) To his family, friends, nurses, doctors, everyone: “I miss you, I will see you soon, and I hope you guys miss me. From Nicholas.”

May 24, 2005 Blood Counts: No labs this morning. Now that we are leaving the hospital these labs and their counts will be done twice per week.

PHOTOS (View Photos): Tonight or tomorrow we will have three photos from his discharge at Stanford to his arrival at the Ronald McDonald House. And next week under Links we will have updated albums.

 


Monday, May 23, 2005 11:00 PM CDT

Day plus45 (Day 185 since Nicholas’ leukemia diagnosis)

IMPORTANT PROCEDURE TOMORROW (TUESDAY)
Tomorrow, Nicholas will go to the operating room for the 2nd of five lumbar punctures and intrathecal (injection into the spine) Methotrexate chemotherapy. Remember, as part of the BMT process to ensure that any leukemia cells that may have survived are destroyed, these five make up the last of the chemotherapy Nicholas should forever receive. The next one will be done in two weeks.

Please PRAY with us!

OTHER MEDICAL INFORMATION
1) The liver function lab reports show that his chemical levels are back in range.

2) The Cyclosporine is back in range at 294.

3) The tapering down of the steroid begins tomorrow. We’re really happy to be able to start tapering down because it has negatively affected his blood pressure and glucose level.

AND WE’RE GOING TO THE RONALD MCDONALD HOUSE TOMORROW
Yes, Nicholas is still scheduled to leave Lucile Packard Children’s Hospital-Stanford tomorrow. From the time he was admitted for the BMT, it has been 54 days, 5 blood transfusions later, 1 delayed discharge by 21 days, a multitude of prayers from everywhere, and a loving God & immeasurable blessings.

We’re so thankful that God is operating around and within Nicholas, and His love fills us with joy—we are grateful for his guidance of the doctors and “shielding” of Nicholas throughout this journey and its slippery slopes.

GREAT DAY
Nicholas was anxious to get out of the room this morning. He and mom ate brunch outside, went for a walk in the hospital, sat by a water fountain—it felt like we (Nicholas and mom) were back in Hawaii, played with race cars, visited radiology lab technicians that Nicholas met during his conditioning regimen before the BMT, went to school in the hospital, read books on the patio, and spent time talking with the nurses.

YOU ARE IMPORTANT TO US
We are so ready for this next phase of our journey; and we know that your prayers and God is exactly what we need toward continued healing.

May 23, 2005 Blood Counts:
WBC: 6.8
HGB: 10.9
PLTs: 193
ANC: 5,392

 


Sunday, May 22, 2005 11:07 PM CDT

Day plus44

CYCLOSPORINE WATCH
Today his Cyclosporine level was at 312, slightly above the desired 240-310 range for Nicholas. The doctors decided not to make any adjustments for now and will check it again tomorrow. Remember, it’s gone above and below the range rapidly so they want to better understand how fast Nicholas absorbs or metabolizes it.

LEFT INDEX FINGER STATUS
It is just about healed—yeah!

WHAT NICHOLAS IS EATING
With Nicholas’ stomach continually getting better, he is allowed to add more food items to his daily diet. And coupled with him taking Prednisone he really wants to eat. (Prednisone is a steroid, and it increases your appetite as well as makes you puffy—remember Nicholas’ cheeks in December when he was taking Prednisone?)

Today he had a banana, plain bagel, plain tuna on toasted bread, and Gatorade (well, water-ade because mom & dad have to dilute it with water—in the beginning he didn’t like us adding water and now he doesn’t seem to notice the difference).

SUPER SUNDAY
Nicholas, mom & dad had a very nice Sunday. We are thankful for God’s blessings and love. Cousins and friends visited and Nicholas spent the afternoon on the BMT-dayroom patio running, bouncing & tossing balls, and watching the NBA basketball playoffs.

With family, friends, and fun outdoors, it seemed like a nice average Sunday. And you know what? It was better than average because we are living it to the fullest in our minds and stretching the limitations for happiness regardless of where we are physically and medically.

GOING TO THE RMH
As Nicholas said, “Two more sleeps and we’re leaving the hospital.” Yes, we are still on target to be discharged on Tuesday following his procedure for more IT Methotrexate chemotherapy in the spine and a spinal tap to check the spinal fluid to ensure nothing has crept up.

May 22, 2005 Blood Counts:
WBC: 6.8
HGB: 10.7
PLTs: 194
ANC: 5,385

 


Saturday, May 21, 2005 11:24 PM CDT

Day plus43

CYCLOSPORINE BACK IN RANGE!
Okay, the Cyclosporine level is back in range at 294. Evidently Nicholas metabolizes the Cyclosporine faster than the average and will require his dosage every 8 hours versus the standard once per 12 hours. We can handle that and Nicholas has handled his oral medicines throughout the day and night with relative ease.

GREAT DAY
Nicholas oldest brother, Chris, visited from college and we had lunch outside under the beautiful blue sky. (He graduates next month from UCSC—we are so proud of you Chris.) And our friend Soha with daughters Neda and Hana visited with us for a while. Family, friends, and fun; Nicholas was in his element laughing and playing. And what a pretty ending of our time out on the patio when we noticed several dozen white balloons drifting high up into the sky—it looked like a flock of doves.

Tonight while watching the movie Peter Pan, Nicholas said, “It would be nice if you could fly so you can see all the lights on outside, and looking at the stars would be very beautiful.”

Note: Tomorrow night we will post pictures from today’s visit.

May 21, 2005 Blood Counts:
WBC: 7.4
HGB: 11.6
PLTs: 173
ANC: 6,223

 


Friday, May 20, 2005 11:15 PM CDT

Day plus42

The Cyclosporine level has dropped to 198, out of range, again! The frequency of administration was increased to three times per day instead of two, and if the level stays out of range, we will again be going back to IV Cyclosporine to get and keep the medicine into his system. Please PRAY that this is not the case…we would have hoped that he would be able to absorb the medicine by now, we shall see. We have another lab draw before his 1AM dose. That’s going to be a fun one. Anyhow, the results of that should be ready by around 2-3AM. We will not be able to sleep until we hear the results, we are anxious. Otherwise, he had a day full of being a “kid” in the hospital, not a patient in the hospital.

RACING, HIDING, AND NEW FRIENDS
While mom and Nicholas were racing on the BMT patio, and then hide-and-go seek with mom’s turn to hide, the grandfather of another BMT patient told mom, “I think you will be hiding for a while because your son is over there talking with my grandson.” Nicholas had gone up to a kid playing Pokemon with his dad on the patio and introduced himself and was standing there having conversation with their family. The boys enjoyed a Popsicle together and Nicholas enjoyed watching him play the game with his dad. When the boy had to leave they conspired to meet on the patio again and play some time this weekend. It was nice to see Nicholas being his sociable self, introducing himself and getting to know others.

FIREWORKS—BEAUTIFUL SIGHTS TONIGHT
Nicholas’ room is on the second floor with his “picture” window facing east. While mom was changing his Broviac dressing, he noticed lights from his left and looked out the window to see a beautiful firework display that colorfully lit up the sky. Nicholas comments were, “wow, whoa, beautiful…” During the display he said, “I wish I could hear the fireworks, I like the sound of them.” Along with seeing the display he really likes hearing the “boom” sound of the cannon shooting the fireworks high into the sky.

With the curtains still open, and the night sky dark now that the fireworks were over, dad saw a medical helicopter approaching the hospital. As it’s bright lights lit up it’s path dad asked Nicholas to watch the approach. Nicholas said, “Dad, I don’t have time for that.” He normally enjoys seeing these kinds of things but he was concentrating on his schoolwork that he was working on and putting that first—not bad!

As the night was winding down, Nicholas was able to eat one final animal cookie and while eating it he said, “This is the life.” Wow, small pleasures fill his heart—and satisfy his cravings! He has been a real trooper with his limited diet. The nurses and doctors are amazed at how cooperative he is with all the limitation despite the high doses of steroids that he is on (they make you hungry). We are thankful that he is so cooperative, it makes it so much easier on mom & dad.

Nicholas closed Friday night doing schoolwork. He worked on capital letters, drawings, dot-to-dot, and more. He was quite pleased with his work and felt great satisfaction with his completion of several pages from his workbook.

May 20, 2005 Blood Counts:
WBC: 6.9
HGB: 11.4
PLTs: 161
ANC: 6,134

 


Friday, May 20, 2005 1:29 AM CDT

Day plus41

SOME CONCERN WITH HIS FINGERS
Although the left index finger is healing, we learned that it had a bacteria infection, Staphylococcus. Identification of the exact species is pending, and in the meantime the broad antibiotic, Vancomycin, continues to be administerd. And while the left middle finger was also swollen on the tip, tonight a white dot has begun to form--similar to the swelling and white dot of the index finger.

AND WE'RE GETTING READY FOR DISCHARGE
Nicholas is doing pretty good. Today he began taking two more medicines orally: Prednisolone (the steroid) and Ranitidine (Zantac). The doctors are planning his discharge for this coming Monday or Tuesday. Remember, when he is discharged we will be going to the RMH for the balance of 100 days (1st week in July).

We will keep you informed of the next phases of the journey and the medical concerns. We will talk about the hurdles leading up to the 100 days, and the hurdles after 100 days. Although the BMT process is a long and slippery road, we know that God is in control and we give Him the glory for his Love and care of Nicholas has enabled him to travel the journey with so much energy and strength. Your continued prayers are so welcome—the journey continues.

NICHOLAS’ QUOTES FROM THE DAY
1. After eating his pretzel, he looked down at his stomach and said, “You’re welcome big sugar momma tummy!”

2. When explaining to mom what the nurse practitioner told him he could eat, he said, “Can you believe it, I’ve never had this much food.” Putting things in perspective, we are reminded that a little can seem like a lot.

May 19, 2005 Blood Counts:
WBC: 7.4
HGB: 12.3
PLTs: 181
ANC: 6,608

 


Wednesday, May 18, 2005 11:35 PM CDT

Day plus40 (Day 180 since Nicholas' leukemia diagnosis)

We thank God and rejoice in His Love moment-by-moment through this journey. It is redundant to say over and over that Nicholas’ energy, enthusiasm, joy, spirits, etc. are amazingly high—but thanking God for the blessings of guiding and shielding Nicholas step-by-step is so right.

And as we hear from many of you, this journey has touched many lives in powerful ways. Mom & dad have learned from Nicholas, you, and certainly through God. We are all witnesses of the blessings along this journey, and again mom & dad thank you for your prayers, care, and love for Nicholas’ continued healing.

BIG NIGHT AND GREAT NEWS
Yeaaaah! Cyclosporine labs tonight reveal that his level is at 298—in range. The level indicates 1) If it is being absorbed into his body now that it is administered orally and 2) His gut is healing.

OTHER MEDICAL STUFF

CYTOGENETICS: The doctors now expect these lab results to be received next week (not today).

LEFT INDEX FINGER: It is healing nicely.

THE STEROID: Nicholas will remain on the steroid at this time because the risks associated being on it is better than the risk of stopping it and potentially having GvHD flare up.

OH, A FUNNY THING NICHOLAS SAID TODAY
Nicholas added pretzels to his food consumption and while eating them he paused, closed his eyes slightly, saying with emphasis, “This is the life!” He now eats three food items daily; Nicholas stool output is daily evaluated to determine if an additional food item can be added or one reduced.

Early each morning he anxiously awaits the nurse practitioner to enter the room to find out what he can eat. For any of you familiar with the movie, Lion King 1 1/2, you may remember the line "Whaaats on the menuuu?" This is what mom & dad think is going through his mind when the nurse practitioner walks in.

May 18, 2005 Blood Counts:
WBC: 5.6
HGB: 12.0
PLTs: 160
ANC: 5,073

 


Tuesday, May 17, 2005 11:08 PM CDT

Day plus39

ANOTHER QUICK VIEW:

CHIMERISM TEST: Results of the first test came back revealing that 95 percent of the bone marrow at work in Nicholas’ body is from the donor and 5rom Nicholas. This is GREAT and over time the expectation is that it will continually increase to 100 percent. (Details in May 10 journal).

CYTOGENETICS TEST: Results should be in tomorrow. This test will reveal any hypodiploid cells which was the December 27, 2004 diagnosis that we received directing us to have Nicholas undergo the BMT. (Details in March 27 journal.)

LEFT INDEX FINGER: Puss was oozing from the small open area on the tip of Nicholas’ finger, which is a good sign because it indicates that his body is showing that it has the ability to fight infections (even when his WBC was low). Tomorrow we’ll learn the results of a culture taken from the puss tonight toward determining the cause of the infection.

CYCLOSPORINE: His Cyclosporine level was 311 (240-310 target range) and tonight it was administered orally. We PRAY that his body absorbs it unlike the last time he was on it and we can get it in range.

OVERALL
The rash continues to clear up—takes a while, gut is healing—takes a couple of months, and Nicholas enjoyed his bread and tuna. He energy and spirit is still very strong. And the journals certainly help to keep his spirits strong—thanks.

May 17, 2005 Blood Counts:
WBC: 4.4
HGB: 12.2
PLTs: 143
ANC: 3,788

 


Tuesday, May 17, 2005 10:14 PM CDT

Day plus38

QUICK VIEW OF HOW THE DAY WENT AND WHAT WAS SAID

1) Yesterday afternoon we noticed a blood blister like under Nicholas’ left index finger, at the tip of the nail. Antibiotics are being administered to manage any possible infection, and it is being examined regularly.

2) His stool output was within range, so finally he got to have a second food item—he chose tuna (plain) and he had it with his two slices of bread today. Nicholas said, “Delicioso,” (Spanish for delicious) as he was savoring each and every bite. He even had mom pour the crumbs from the napkin he was using into his mouth—he didn’t want to waist even the smallest of crumbs!

3) If all goes well today, he will start oral Cyclosporine tomorrow (this is GREAT because we have to start getting him back on oral medicines before he can be discharged).

4) Bilirubin is still high at 2.0, however, it is stable (not going up).

5) All kidney function looks GREAT.

6) RBC transfusion. Nicholas’ HGB was at 9.1 and when it is below 10 a RBC transfusion is given. Although it was at 9.9 and 9.7 the last two days the doctors were holding off to see if the marrow would produce enough on its own.

Remember, last Wednesday the IT Methotrexate chemotherapy was administered and that along with the other immunosuppressive medicines impact the marrows ability to produce… This was the fourth blood transfusion since his BMT, which is pretty good because on average a BMT patient has transfusions at least once per week.

7) Blood labs were drawn tonight to determine the Cyclosporine level; we’ll have the results tomorrow morning.

8) His skin looks good. The only evidence of the rash is some dry, darkened skin that should look normal again--it may take awhile.

9) Nicholas and mom flew a small-boxed kite off the BMT patio (second floor).

May 16, 2005 Blood Counts:
WBC: 2.8
HGB: 9.1
PLTs: 188
ANC: 2,307

 


Sunday, May 15, 2005 10:05 PM CDT

Day plus37

ROLLER COASTER INCLUDES EATING
Well, today Nicholas was ready to eat chicken (as his second food item from the GvHD list as his gut continues healing) along with his 2 slices of bread but he was told that he couldn’t have it because of his stool output (diarrhea). The output is measured from 7:00am to 7:00am and last night he had more output than expected. That brought the 24-hour period total to 230cc and we were shooting for no more than 200 at the most.

As indicated in the journal yesterday, …eating, stop eating, eat, eat a little more, slow down eating, the “roller coaster” continues even with eating. Nicholas was only able to have the two slices of bread today. With the bread toasted and sliced into sections, looking at his plate he begins to eat like it is a 5-course meal, really!

AND the Cyclosporine level was a little high at 311 (target range for Nicholas is 240-310) so the dose was decreased. (The April 29, 2005 journal talks about the importance of Cyclosporine.)

Note: Tomorrow is when we learn more about the Bilirubin status, not today.

BUT NICHOLAS REMAINS ENERGIZED AND JOYFUL
So how do you think our little sunshine, angel can sustain his energy and joyful nature? Although he is still getting nutrition in a bag (TPN), God is filling him with the bread and everything is just fine.

Cyndi, mom’s friend from work brought Matthew (our 16 year old) and Jordan (Matthew’s friend who is like our fifth son) to visit. Nicholas enjoyed Matthew and Jordan playing with him. And mom finally left the hospital for the first time while Nicholas was hospitalized, although for a very short period of time. It took dad a lot of pushing to get mom to go outside without Nicholas and dad was very happy that Cyndi helped to get her out.

While mom was out, Nicholas and dad went for a walk in the hospital and spent time on the BMT patio just sitting on a bench, talking, and teaming up on a computer game together. We were surprised twice—once when a squirrel crossed right in front of us and a bird in a tree branch above was jumping from limb to limb. We are thankful that we can still enjoy good things!

May 15, 2005 Blood Counts:
WBC: 3.0
HGB: 9.7
PLTs: 210
ANC: 2,619

 


Saturday, May 14, 2005 11:13 PM CDT

Day plus36

WHAT’S GOING ON WITHIN HIS BODY
It appears the affect—suppression of his immune system (blood counts)—of the May 11 intrathecal (IT) chemotherapy with Methotrexate is being realized. Although his numbers have dropped, we are grateful his ANC is still over 1,000.

The rash is drying up and getting better and better, the diarrhea is still easing up. We will learn more about the status of the Bilirubin through tomorrow’s chemical panel blood work.

Today, Nicholas had two slices of bread—toasted, one this morning and one tonight. He didn’t like having to stop eating when the gut GvHD was diagnosed, understandably is so happy to just be eating bread, and is so ready to continue eating regularly. Tomorrow he gets to choose an additional food from the GvHD list and he chose chicken.

LOTS OF FUN
Nicholas had a really good day with his friend and past pre-school classmate Neda and her sister Hana. The weather was great and they played on the BMT patio for quite awhile soaking up the warm weather and laughter. They enjoyed the ladybugs, birds, talking/playing with the parents, and oh yes, Popsicles. (Please click on View Photos.)

The day began uneventful medically and ended uneventful medically—GREAT.

JOURNEY TO HEALING
We mentioned patience and that really is the word for every day. Today was so much fun, and at times seem to forget the journey that we are on. At the end of each day the reality sets in and we again live the changes placed on Nicholas and the rest of our family. And through it all we close each day knowing that being with God frees us from all perceived limitations—it is really, really hard though being on this journey. But God’s plan is right, and we are closer and closer to God each day and His leading us provides comfort!

May 14, 2005 Blood Counts:
WBC: 2.6
HGB: 9.9
PLTs: 214
ANC: 2,197

 


Friday, May 13, 2005 11:30 PM CDT

Day plus35 (Day 175 since Nicholas’ leukemia diagnosis)

THANK YOU
Thank you for your continuous prayers, guestbook entries, and warm thoughts. The guestbook entries provide daily boosts of encouragement and some fun! And mom & dad share your thoughts with each other as well as Nicholas.

GOOD NEWS, AND STILL WATCHING THE BILIRUBIN
The RASH is going from stable to showing clear signs of improvement—YEAH! And there was no significant change to the BILIRUBIN, it is still high and out of range. Remember, the Cyclosporine addresses GvHD and it is in range so the “Bilirubin Watch” continues without any specific concerns right now.

SCHOOL
Nicholas participated in the school program today. It was difficult for him to move about in the class with his IV pole, and hard to participate for lengths of time with his mask on. However, he liked solving problems on a Candy Land computer game and said, “It was very hard but it was super fun.” And he said, “I had to figure out letters, did some writing, tracing, and it felt good.”

OVERALL
Patience now means so much to us, along with celebrating simple things of “daily” life.

May 13, 2005 Blood Counts:
WBC: 5.5
HGB: 10.2
PLTs: 237
ANC: 5,142

 


Thursday, May 12, 2005 2:39 AM CDT

Day plus34

NICHOLAS’ QUESTION OF THE DAY
As Nicholas was waking up he asked mom, “When is Lizzie going to be here?” You know what he wanted to ask her, right?

Then when his nurse came into the room, Nicholas asked her to get Lizzie (nurse practitioner who was consulting with his doctor). A few moments later Lizzie walked in saying, “I understand someone is summoning me!” Nicholas said, “WHEN CAN I EAT?”

Lizzie told him he can have one thing on their list and he could eat now. Nicholas asked for toast and then, looking at a fortune cookie that we had on the counter he asked if he could also have that fortune cookie. She told him if he eats just that one he could have the toast too. Nicholas said okay and, “I can’t wait to get my paws on it.”

Nicholas gobbled up the fortune cookie and then asked mom what did his fortune say. It read, “You will enjoy good health, you will be surrounded by luxury.” Nicholas then said, “I can’t wait to get my grabby paws on my toast also.” And he got to put a little jam on his toast!

A GOOD DAY
The day started out to be a good one—he got to eat. He had a quiet, cuddly day with mom. And when dad came to the hospital after work, Nicholas, mom & dad went for a nice, quiet stroll around the hospital. The day ended being a good one also—Nicholas and dad played basketball, danced, and we all enjoyed a Popsicle.

AND MEDICALLY…
1) The rash is stable

2) Seeing how his gut reacts to solid food (well, the fortune cookie and toast) to determine when he can go back on oral medicines which will be a factor in being discharged from the hospital

3) Tomorrow’s lab work will provide information on the Bilirubin (talked about in yesterday’s journal)

Overall, Nicholas is in very good spirits and entertaining to everyone who comes into his room or he comes across in the hospital. And, he is back to saying to others: “Do you want a piece of me?” and “What’s your name, what’s your whole name?” Remember, he remembers their whole names. Nicholas said, “Once I get to know them, then I know their whole name.”

May 12, 2005 Blood Counts:
WBC: 6.4
HGB: 10.5
PLTs: 244
ANC: 5,536

 


Wednesday, May 11, 2005 10:36 PM CDT

Day plus33

EARLY MORNING
Nicholas was still half asleep when he sat up with a “smirk” on his face and said, “One more sleep and I get to eat.” He was remembering that tomorrow is the planned date to begin eating some solid foods.

TODAY’S PROCEDURES
Because this was the first operating room procedure at Stanford, Nicholas asked the doctors and nurses to do two things:
1) He did not want the anesthesia through a mask, he prefers it through his catheter so that he does not have to smell anything
2) He asked that they not talk while the anesthesia is being administered because it makes him feel dizzy hearing them talk. (These were two “standing” request at Children’s Hospital-Oakland and the medical staff, of course, accommodated his request.)

Nicholas did GREAT before, during, and after the procedures. We are so thankful that he has always handled the anesthesia very, very well. As always, he woke up just like after having a nice night’s sleep: opened his eyes, looked around, and said hi—like nothing had happened.

WHAT THE DOCTORS SAID AFTERWARDS
The doctors said they couldn’t ask for the marrow to look any better. “It had a nice variety of cells and no signs of blasts (leukemia); it looked wonderful so that is good news.” The results of the chimerism and cytogenetic tests should be received by next Wednesday. We will anxiously await the results! Praying for more good news!

WHAT NICHOLAS SAID AFTERWARDS
“We do not have to have anymore of these bone marrow tests; I already know that it’s working because we take care of ‘it’ everyday.”

THE REST OF THE DAY
After returning to his room, mom & dad talked with Nicholas for a little bit and he curled up into his bed and fell asleep.

Late afternoon dad and Nicholas went for a walk: not in a park, not around a lake or reservoir, and not in the dirt of course. But we talked about the three rugs we have placed in his room that represents the park (green rug), water (blue), and dirt or playground (tan). We thought, and talked about the times we experienced in those settings and how we have pretended to do those things in the hospital. Then we went onto the BMT patio and watched the birds, planes, and helicopters in the "blue" sky. We then played hide-and-seek in the hallways of the BMT unit, and then Nicholas sneaked up on some of the nurses to scare them with one of his favorite phrases since his leukemia diagnosis—“Boo, did I scare you!”

THE RASH
Oh, how quickly we focus and concentrate on what's in front of us such as today's procedures. So, an update on the rash is that there is slight progress--it's looking a little bit better.

WATCHING HIS BILIRUBIN
Remember, the liver is one of the three primary areas of injury with GvHD. In addition to the blood counts reported via blood samples regularly drawn is a reporting on the chemical panel (chemical make up in the blood). The Bilirubin is one of the chemical reporting factors and it relates to the functioning of the liver. The target range is “below1.4,” Nicholas’ was 2.0 today, and looking back since his BMT it has never gone above the 1.4 target. Because it was the first reading that was high, it will be checked again on Friday and it may be the next stage of the "roller coaster" that we will be guided over.

PRAYERS
We cannot ever say enough about your prayers—thank you—and we pray that collectively all of us become closer to God and our loved ones. Please pray with us toward God’s continued “shielding” and healing of Nicholas.

May 11, 2005 Blood Counts:
WBC: 6.0
HGB: 10.9
PLTs: 269
ANC: 5,364

 


Tuesday, May 10, 2005 11:31 PM CDT

Day plus32

DAD LEFT NICHOLAS AND MOM ALONE TODAY
Dad started back to work today leaving Nicholas and mom alone—but we know that they were not really alone for our Father, God, was watching over them and guiding dad to transition back to work. Dad was energized by the warm, engaging conversations from friends and colleagues. And that energy transcended into warm and engaging conversations with Nicholas and mom. So the love and energy shared with dad was shared with Nicholas and mom—we are thankful for this “circle of love” that all of you are apart of. AND dad will be with Nicholas and mom whenever he should be—like tomorrow during the procedures stated below.

NICHOLAS’ DAY
No significant change to the rash, yet. Diarrhea even less today!

This evening Nicholas was administered Dynacirc, a medicine that treats high BP, because his BP has continued to run on the high side lately. (Remember, on May 6 the journal stated that the combination of Cyclosporine and steroids being administered typically increases a patient’s BP. And Amlodipine, another BP medicine but lower dose used for maintenance, that he has been receiving daily since May 6 has not kept his BP down in the normal range.)

It was a beautiful day outside, and inside, mom helped to make it a beautiful day in the hospital and on the BMT patio:
1) Nicholas and mom walked around the hospital—and yes he went to the nursery again, seeing a nurse holding a baby
2) Nicholas and mom raced the length of the long patio path—Nicholas won, of course
3) Mom pulled Nicholas in a wagon, and Nicholas returned the favor pulling mom
4) Mom read several books to Nicholas, and tonight he wanted a rerun. He had mom re-read one of the books—“Corduroy” about a stuffed bear with green overalls in a department store
5) Nicholas painted a ceramic lion
6) He colored and painted a picture of a sunshine and flowers for Ms. Shirley (his former school teacher). Family friend, Soha, will deliver it tomorrow as a surprise
7) So, in the hospital we choose to help him enjoy his childhood of doing the things that he would be doing outside the hospital

VERY IMPORTANT PROCEDURES/TESTS TOMORROW (WEDNESDAY)
Tomorrow, Nicholas will go to the operating room for a 1st of five lumbar punctures and intrathecal (injection into the spine) chemotherapy. So, these five will make up the last of the chemotherapy Nicholas should forever receive. It is part of the BMT regimen to ensure that any leukemia cells that may have survived the conditioning regimen are destroyed. The five will be done every two weeks.

Also, the 1st of three bone marrow aspirations and biopsies will be performed. These three will be done once a month to confirm that he is still in remission. And marrow will be drawn for the DNA chimerism test discussed in the April 27th journal. The results of this test takes about 1-2 weeks and it monitors the success of the BMT by determining the relative percentage of Nicholas’ and the donor’s T-cells and Neutrophils in the marrow. The goal over time is 100 percent of the donor cells.

Please PRAY with us!

May 10, 2005 Blood Counts:
WBC: 5.7
HGB: 10.9
PLTs: 253
ANC: 5,226

 


Monday, May 9, 2005 11:21 PM CDT

Day plus31

Well, the rash is somewhat better and most of the redness has gone away. The steroid that has been working toward healing the gut GvHD and the rash will not be tapered down until Nicholas—again—receives his medicines orally and they are absorbed into his body. (Unlike the oral cyclosporine that was not being absorbed into his body prompting the change back to it being administered via IV.) We expect oral medicines to start next Monday.

WHAT NICHOLAS IS SAYING ABOUT WANTING TO EAT
We also expect Nicholas to soon be able to start eating again versus the TPN. Light eating may start at the end of this week. Just about everything we do throughout the day prompts Nicholas to say, “Mom, please add (insert just about every type of food you can think of) to our list.” It’s almost like “word association.” For example when mom was reading a story that talked about roast beef, Nicholas said, “Put that on my list.” And sometimes out of the blue he says things like, “Can I have some yogurt because they let me eat jell-o?” “It’s kind of the same thing.”

Just as we were writing this journal, Nicholas said, “mom & dad how bout you just say I want to eat real fast—because I want to get better so I can eat.”

THIS IS SO HARD, AND WE HAD A GOOD DAY
Although we have now been living this leukemia and bone marrow process for almost half of a year, it’s still so surreal. Sometimes when we look over at the IV pole and see all of the bags and syringes of medicine it is so, so painful. It’s one thing to have physical pain that is temporal, but knowing what Nicholas is going through leaves an excruciating pain that sometimes paralyses us in thought. Even through all of the searching, reading, consultations, and understanding gained, at times we just cannot breath normally. We have some very tense times of reflection, and like we learned from Nicholas, we need to “just concentrate on my breathing.”

We are so thankful for God’s love as His listening and touch that we feel through prayer and sometimes tearful-quiet singing generates our ability to faithfully parent and trust.

So, through it all, Nicholas and mom & dad had a good day.

May 9, 2005 Blood Counts:
WBC: 4.0
HGB: 10.8
PLTs: 213
ANC: 3,424

 

 


Sunday, May 8, 2005 11:20 PM CDT

Day plus30 (Day 170 since Nicholas' leukemia diagnosis)

Nicholas’s diarrhea continues to ease up—GOOD—but the rash is still prevalent. There has been some improvement from the rash covering most of his body. It is now concentrated on his underarms, neck, face, and head. Tomorrow the doctors and mom & dad will talk about the rash and next steps.

RMH UPDATE
We are now planning for Nicholas to be discharged from the hospital on May 16, 2005, and we expect to then be at the RMH.

MOTHER’S DAY
Happy Mother’s Day to all of you wonderful mothers—your expressed love to Nicholas, mom & dad, and our family has been a beautiful gift to us and demonstration of your motherhood. We thank you so very much!

Nicholas seemed to enjoy Mother’s Day. As mom was opening a few gifts of our love, he was drawing pictures for her and one-by-one handing them to her. The sunshine and tulips were the theme in his drawings.

While mom has been EVERYTHING to Nicholas and simply amazing with 24/7 intense care and love, Nicholas has been EVERYTHING to mom & dad with his 24/7—really 24/7—joy and love. As much as mom is where she needs to be, with Nicholas, she battles with being the mother she wants to be with her other boys.

Note, as I think you know, even during the very, very difficult weekend when Nicholas was engrafting and had the fever & rash, we are daily amazed by his outlook of being positive toward just about EVERYTHING. After that difficult weekend, we asked Nicholas what was he thinking about and he said, “I was just concentrating on my breathing.”

May 8, 2005 Blood Counts:
WBC: 4.3
HGB: 10.8
PLTs: 201
ANC: 3,723

 


Saturday, May 7, 2005 11:21 PM CDT

Day plus29

WHERE WE ARE ON THE CURRENT “DOWN” PORTION OF THE ROLLER COASTER (frustrating)
Nicholas’ diarrhea has decreased significantly. However, his rash has not improved—at least not yet. Nicholas has been amazing (as you have witnessed) and we continually PRAY that the rash will clear up.

Following is an excerpt of a prayer we received from friends and their church. “Father, in the Name of Jesus, we confess Your Word concerning healing. As we do this, we believe and say that Your Word will not return to You void, but will accomplish what it says it will. Therefore, we believe, in the Name of Jesus, that Nicholas Colby Gilbert is healed according to 1 Peter 2:24.” WE ARE SO GRATEFUL FOR YOUR CONTINUED PRAYERS, and continue to give God all the glory for guiding Nicholas through this journey.

Remember, the primary areas of injury with GvHD are the skin (rash), the liver (thank God Nicholas has been shielded from any injury) and the gastrointestinal tract (gut GvHD). And remember that the immune reaction, such as rashes and gut GvHD, of the BMT (specifically the transplanted T lymphocytes) not only has the potential to attack Nicholas’ normal tissues—as we are seeing—but to recognize and attack any malignant cells within Nicholas. For example, case studies have shown that the more prominent the GvHD the less likely was leukemia to return. So we are claiming that God’s omnipotence, omniscience, and omnipresence is at work, and will shield Nicholas toward making him whole.

NICHOLAS’ DAY
Nicholas enjoyed searching for insects on the BMT patio, watching a helicopter land, playing games, painting, acting out Power Rangers/karate moves with a ball swinging from the ceiling, playing basketball—he beat dad so he got to pick the movie for tonight, and playing in the bathtub.

MOM & DAD
Mom & dad work really, really hard to make the moments, hours, and days normal for Nicholas relative to activities and learning. So much so that we really don’t focus on ourselves—and we know that this will also be good for Nicholas to see and understand, so we will create moments for us as well.

Also, remember that the cyclosporine and steroid are immunosuppressive so they can suppressive his blood counts(keep them down).

May 7, 2005 Blood Counts:
WBC: 4.7
HGB: 10.9
PLTs: 135
ANC: 4,037

 


Friday, May 6, 2005 11:32 PM CDT

Day plus28

WHAT’S KEEPING US IN THE HOSPITAL
Although Nicholas had less diarrhea today, it is still a concern relative to the gut GvHD. And the rash was worse today; thankfully it was somewhat clearing up as he was going to bed. This evening the steroid dose was doubled. We PRAY that the steroid clears up the rash, is a benefit toward healing the gut GvHD, and Nicholas is shielded by God from steroid side effects. As always, mom & dad are so thankful Nicholas is the “strongest person” we know, because his strength is a great help toward helping us through this journey.

Also, now that his cyclosporine is in range, and generally being on cyclosporine and steroids increases the blood pressure, this evening Nicholas started taking amlodipine to treat high blood pressure (BP). What a twist to the “roller coaster!” We wanted his cyclosporine level to be in range and now that it is, coupled with the steroid, we are administering another medicine to manage the possible BP side effect.

WHEN WILL BE GOING TO THE RMH
The next targeted day that Nicholas will be discharged is this coming Thursday, May 12, 2005.

COMMENTS FROM NICHOLAS
Remembering that he is now on a liquid diet, read what he said:
1. “Mom, don’t eat Cheerios anymore, you know I can smell them.”
2. “Mom, have you been eating carrots? I thought so, I can smell them.”
3. “Dad, don’t buy and bring mommy anymore food because it makes me hungry. Write a note as a reminder.”

May 6, 2005 Blood Counts:
WBC: 5.8
HGB: 11.1
PLTs: 187
ANC: 5,156

 


Thursday, May 5, 2005 11:31 PM CDT

Day plus27

CYLOSPORINE LEVEL IN RANGE, BUT A COUPLE CONCERNS
The cyclosporine level is 263, within the target range for Nicholas of 240-310—GOOD.

However, the diarrhea has increased and Nicholas sporadically complained of lower stomach pain throughout the day. Also, shortly after midnight this morning (Thursday), his stool had tissue from his intestines in it. Mom & dad’s heart hurt so much to see this, and although we were told it is part of the process it did not provide much comfort. The tissue from the stomach should repair itself. Note: It appears the increase in the WBC we have seen the last few days was because it was being produced to work toward healing the stomach. And the WBC is down today as the cyclosporine is at work and the stomach is healing.

And, tonight the rash on his upper body and head is worse than yesterday. We were expecting the slight increase in the steroid dose on Tuesday night to significantly reduce the rash.

Tomorrow we will talk more with our doctors regarding next steps relative to these concerns.

THANKFUL
We are so glad that God is a loving God and enables Nicholas to continually be amazingly strong and energetic. And we pray that God continually provide wisdom to our doctors, enable us to make the right decisions, and shield Nicholas.

Also, that our nurses continually show up in a very, very caring way. And, thankful the nurses and doctors are so patient with the continuous questions and engagement from mom & dad.

NICHOLAS SCARED MOM--BUT IT WASN’T ILLNESS RELATED
While mom was returning to the room, from across the hall, after getting hot water for tea, she heard Nicholas screaming. She was running into his room, spilled her tea, and Nicholas screamed, “I was scared.” He was afraid of a Scooby-Doo game that he was playing and has played many times before. Mom, still shaking, promptly took the game out and hid it.

OTHERWISE A GOOD DAY
We spent the day outdoors on the BMT patio playing, enjoying the sunshine, and appreciating the breeze on our faces. Nicholas also spent time learning and playing on the computer with a Books-A-Live representative.

May 5, 2005 Blood Counts:
WBC: 5.9
HGB: 11.1
PLTs: 178
ANC: 5,015

 


Wednesday, May 4, 2005 10:35 PM CDT

Day plus26

CYCLOSPORINE LEVEL VERY, VERY CLOSE TO OUR TARGET RANGE
The cyclosporine level is now at 236. Yes, yes, yes. It’s getting close to the target range where the doctors want Nicholas to be—240-310.

And, the rash on parts of Nicholas’ body is stable (not getting worse). We hope to see improvement tomorrow.

GUT GvHD
Based on the volume of diarrhea, Nicholas is stated to have stage 2 gut GvHD (scale of 1 to 4 with 4 being the worse stage). Thankfully, his diarrhea has decreased significantly today—good sign.

EATING OKAY BUT PLACED ON CLEAR LIQUID DIET
Although Nicholas has been eating okay, he was placed on a clear liquid diet to give his gut time to heal from the gut GvHD.

GUESTBOOK ENTRIES
Again, the guestbook entries are so helpful for Nicholas and just as helpful to mom & dad every day.

Nicholas, and mom & dad, were also happy to see the guestbook entry from one of our neighbors—good motivation for Nicholas because he loves the Fourth of July and we expect to be home in July. It was especially nice to read because Nicholas was just talking about our neighbors yesterday (comment in that journal).

SNAP-SHOT OF THE REST OF NICHOLAS’ DAY
1) Vital signs taken
2) Doctor’s visit and conversation
3) Talking with the hospital’s Reverend in our room (mom & dad, and Nicholas have good conversations with the Reverend)
4) Playing games in my room with a child life representative
5) Talking with the nurses and nurse assistant
6) Dancing with dad
7) Off the floor with a physical therapy representative for some fun activities
8) Playing on the window-bench seat with mom
9) Online with Nick Jr. for interactive learning and games
10) Fell asleep in mom’s arms and then napped on the window-bench seat
11) Making funny faces with dad
12) Reading of guestbook entries
13) Playing Yu-Gi-Oh cards with mom
14) Combination volleyball, tetherball, and punching bag
15) Getting ready to watch Disney’s “National Treasure”
16) Oh yes, and some oral medicines.

May 4, 2005 Blood Counts:
WBC: 11.3
HGB: 11.5
PLTs: 200
ANC: 10,407

 


Tuesday, May 3, 2005 11:51 PM CDT

Day plus25 (Day 165 since Nicholas’ leukemia diagnosis)

CYCLOSPORINE LEVEL ON THE RISE…NOW AT 173, WE’RE GETTING CLOSER!
And, Nicholas’ rash is already starting to look better. But he has had more frequent diarrhea so he is on replacement fluid to keep his electrolytes in balance. WE PRAY that his rash and diarrhea gets better with IV cyclosporine and an increased steroid dosage (the steroid dose was being tapered down). And please PRAY WITH US--we don’t want Nicholas to get gut GvHD.

Blood counts and other blood results are showing that the overall functioning of his organs are right on target—GREAT.

OUR DAY
Of course, Nicholas roamed the halls playing various made-up games, and we played different made-up games in his room. The subject of going home came up, and when Nicholas said, “I miss home,” one of the nurses asked what do you miss. He said, “ I miss playing, and I miss my neighbors.”

Bath time was made to be a picnic at the beach… We had graham crackers with peanut butter and threw a small beach ball back and forth while Nicholas soaked in oatmeal bath water to soothe his rash.

Mom had a nice visit from a friend and we all had a fun time with her.

May 3, 2005 Blood Counts:
WBC: 12.3
HGB: 12.1
PLTs: 178
ANC: 11,156

 


Monday, May 2, 2005 11:44 PM CDT

Day plus24

WE’LL BE IN THE HOSPITAL A LITTLE LONGER—CYCLOSPORINE LEVEL EVEN LOWER
Nicholas was not discharged today; hopefully we’ll only be in the hospital for a few more days. Although it would have been an early discharge relative to the process, it is a little disappointing because Nicholas has worked so hard doing all the right things. However, we are okay with being where we need to be and mom & dad will work hard to do the right things to keep him upbeat.

His cyclosporine level is now down to 72 and the target range is 240-310 (as indicated in the last few journals about this concern). The level has gone down since it was switched from IV to oral. The level has not been up to within the target range, and since last week the number has been going down—NOT GOOD. Although the doctors have made adjustments to the timing and dosage over the last several days, they are now changing the cyclosporine back to an IV administered medicine (40mg every 8 hours), versus oral, because there is a concern that his body is not absorbing it. SPECIAL NOTE: Today our doctor said she was not too concerned that his body is not absorbing oral cyclosporine yet—he started engrafting early and they thought he would be ready for the oral cyclosporine based on his body's quick response to the BMT and no signs of GvHD other than his skin. But, generally a BMT patient’s gut would not have healed by now if there were gut GvHD or mucositis.

GUT GvHD OR MUCOSITIS?
The rash on certain parts of Nicholas’ body is flaring up substantially from last Friday although clinically he looks good. It is all puzzling because gut GvHD is generally not mild and Nicholas is not showing the signs that are usually associated with gut GvHD. He does not have any consistent or major stomach pain, no cramping, his stool does not present itself in a consistent way with gut GvHD, and he is eating okay. Although he did not have any significant mucositis in his mouth and throat earlier during this BMT process, perhaps he had mucositis down low that caused damage to his gut that could be causing the cyclosporine absorption problem.

Nicholas has had traces of blood in his stool the last two days. The doctors are analyzing his stool further, checking for viruses (like rotavirus). They checked for viruses in his sinuses because he has had a runny nose for the last couple weeks, the result was negative--Thank you Lord.

WHAT COULD BE NEXT
If his cyclosporine level does not get into range, an Endoscopy may be performed to view the stomach, esophagus, and down to the small intestine. This internal scoping with a tube may shed light on what’s going on. We will have to evaluate the whole situation before performing an Endoscopy because there are risks associated with it as well. But, it is one day at a time. And our Father, God, is in operation guiding the wisdom of the doctors and giving us the thinking to do the right thing.

OTHER LAB RESULTS
If Nicholas’ body is not absorbing the cyclosporine, it could be that the other medicines are not being absorbed. However, the lab results from Nicholas chemical panel still looks great. And we are thankful that there is no evidence of issues with his liver or other organs.

SOME OF WHAT NICHOLAS DID TODAY
Left the floor (with mask on) with an occupational therapist to play basketball, bowling, and golfing. He is doing well physically that the occupational therapist have signed off on his need to participate in their program. And he had a surprise visit from his nanny-Kimmy and a friend. They had fun “just playing,” and watching Nicholas act out parts of movies—he has a great memory of movie scenes, scripts, and expressions.

Please pray with us for Nicholas’ continued healing as we are confronted with this stage of the roller coaster on his journey to being cured. We are so thankful for his unwavering energy, enthusiasm, and joy—he certainly brightens our days.

May 2, 2005 Blood Counts:
WBC: 8.2
HGB: 12.0
PLTs: 164
ANC: 7,068

 


Sunday, May 1, 2005 11:07 PM CDT

Day plus23

EARLY MORNING, LATE NIGHT
Nicholas woke up this morning at 5:00, fell back to sleep at 6:00, and awoke at 7:00. He took a very late nap at 4:00pm and slept until 9:30pm. He’s going to be up late tonight!

CYCLOSPORINE AND GvHD
A slight rash has surfaced on various parts of Nicholas’ body that are indicators of GvHD. And we are still concerned about his cyclosporine level remaining low. Today the cyclosporine dose was changed to 100mg every 8 hours, and the lab draw/analysis will be performed early tomorrow morning with results around 10:00am. PRAYING—we are continually praying for his cyclosporine level to increase to within the targeted range of 240-310 and once again ask you for your prayers as well.

GOING TO THE RMH TOMORROW MAY BE DELAYED
Based on the cyclosporine level still being out of the target range, one of the doctors hinted that our primary doctor might want Nicholas to remain in the hospital until the targeted level is attained. Although the nurses and doctors have kept us informed, including being very up-front with us, tomorrow we will ask additional specific questions to get a better understanding of concerns, interventions, and about Nicholas’ metabolism that is apparently working the cyclosporine out of his body.

VERY NICE SUNDAY OTHERWISE—VISITS, OUTDOORS, AND MOVIE
We had a very nice day with two separate visits from friends and their family. Nicholas enjoyed playing outside on the BMT patio. He said jumping with his school friend and her sister was really fun. (Note: Tomorrow evening we’ll post a picture of these pretty cool looking “jumpers.”) During the afternoon visit Nicholas was asleep, but he’ll be able to enjoy the visit via the homemade cards and bookmark from the four girls. And our evening was capped off with a late movie (because of his late nap) on the window-seat bench. Remember, Nicholas likes sword fighting (perhaps because of movies like Peter Pan) so he really enjoyed tonight’s movie that mom & dad were going to watch themselves—“First Knight” with Julia Ormond, Sean Connery, and Richard Gere.

Nicholas' energy, enthusiasm, and joy is still amazing--praise God.

May 1, 2005 Blood Counts:
WBC: 8.9
HGB: 12.6
PLTs: 217
ANC: 7,938

Saturday, April 30, 2005 11:13 PM CDT

Day plus22

EARLY MORNING COUGHING SCARE
At 5:00am Sheila was awaken to Nicholas coughing like he was having difficulty breathing, and then he vomited. The nurse and doctor examined Nicholas: his "vital signs" were fine, lungs were clear, his oxygen level was a little low, and his respiration was a little fast. They started the oxygen and positioned it to kind of blow into his face, and gave him some Benadryl to relax him. He coughed for about a half hour, went to sleep, and he awoke feeling fine—praise God!

GREAT DAY OTHERWISE
Other than this morning’s episode, he had a GREAT day. Nicholas took mom & dad to one of his favorites places in the hospital. Do you remember what/where that is? The nursery, Nicholas really loves seeing the babies through the window. We had a nice visit from friends and spent time on the BMT patio. Nicholas was happy to have his mask off while outdoors and enjoyed looking for ants and other insects on the walking path.

CYCLOSPORINE
Referring to yesterday’s journal, today’s cyclosporine level is still low at 112 (target range 240-310)—ARGH. So tonight another adjustment was made to 90mg every 8 hours. Nicholas is taking this oral medicine at 11:00pm, 7:00am, and 3:00pm. After going to bed late Friday night, the coughing episode this morning at 5:00, it was hard for Nicholas to get up for the 7:00am cyclosporine dose. Tomorrow we will repeat the process including more labs for an update. We pray for a restful night.

THE JOURNEY CONTINUES AND SO DOES OUR THANKS
We are very thankful for daily blessings that we clearly see or experience. It could be that it is just the small things that perhaps could go unnoticed if we were not on “this” journey, however, we are so thankful every moment of every day for the small things. They do matter and are so very important in our lives today—and will be forever more.

We have a long journey yet ahead of us, we still manage it day-by-day, and we are still so thankful for our three older boys for their patience, understanding, and tremendous spirit of loving their brother from afar and managing their lives with mom & dad away. Thank you, guys!

April 30, 2005 Blood Counts:
WBC: 5.5
HGB: 12.9
PLTs: 242
ANC: 4,477

 


Friday, April 29, 2005 11:27 PM CDT

Day plus21

We are so thankful for these GOOD days. Today Nicholas was kept busy playing basketball outside on the physical therapy patio with a few other boys, painting & crafts with mom, and reading at bedtime.

ENGRAFTMENT RELATED FOCUS RIGHT NOW
Acute graft vs. host disease (GvHD) is a reaction of the new bone marrow (graft) to a patient’s body (host). Acute GvHD is seen primarily in the skin, liver, and gastrointestinal tract during the first 100 days post-transplant (today is the 21st day post transplant). The most common immunosuppressive medications used in transplant are cyclosporine, methotrexate, and steroids. Nicholas has received the methotrexate; is being tapered off a mild steroid than began when he started to engraft and had the fever, rash, & respiration issue; and is receiving the cylcosporine. The early (acute) GvHD is sometimes followed by delayed (chronic) GvHD which may affect the skin, joints, eyes, inside of the mouth, bowel, lining of the heart or lungs, lungs, and liver. Chronic GvHD can vary from mild to fatal.

The rash Nicholas had two weekends ago was considered mild acute GvHD and that rash has cleared up (as stated in a previous journal). While Nicholas has been receiving cyclosporine and monitored to measure the level of it in his system, this past week the level has been going down when we wanted it to go up, although the staff has been making frequency/dosage adjustments to get it to go up. It’s a metabolism issue and the staff is surprised that he has not had any rashes—skin flare-ups. God is Good! The target range is 240-310, mid-week it was 163, and today 103. This afternoon the cyclosporine was changed from 90mg every 12 hours to 70 mg every 8 hours. Tomorrow afternoon’s lab results will provide an update to us.

A little GvHD can be a good thing because it has a graft vs. leukemia affect. So if any leukemia cells (cancer cells) had survived the pre-conditioning regimen before the BMT, the new graft would recognize them as foreign and attack them to kill them off. Therefore, the fact that his rash was on the mild side it is considered a good thing.

NEW PHOTOS
Please click on “View Photos” to see three of the latest photos (Nicholas posing for dad, in action using his karate moves, and eating mom’s ice cream).

April 29, 2005 Blood Counts:
WBC: 5.7
HGB: 13.1
PLTs: 214
ANC: 4,713

 


Thursday, April 28, 2005 11:34 PM CDT

Day plus20

Yes, thank God, another GOOD day all around for Nicholas, mom & dad. Nicholas ate and drank well (grape juice was his favorite drink today), took his medicines without hesitation, and mom & dad are continually preparing to go to the RMH.

MORE DISCHARGE PREPARATION
Along with administering his TPN, there are several medicines we will be administering via IV and orally. There certainly is a level of comfort being in the hospital regarding the medicines and side effects. However, here, too, we trust in the Lord to guide us in our observations as we administer these medicines. More importantly, we trust in the Lord's continued guidance and shielding of Nicholas through the maze of obstacles BMT patients face.

SCHOOLING
Although Nicholas would be scheduled to go to Kindergarten in the fall, the hospital staff and teacher decided that he is ready and can start their Kindergarten program now.

THANKFUL
Although some of these journals may seem redundant in terms of things going well, we are thankful to be able to report out that things are going well. And hope that you, too, recognize the power of your prayers, our prayers, and God to navigate a course for Nicholas enabling us to say “GOOD, GREAT, AMAZING…”

April 28, 2005 Blood Counts:
WBC: 4.8
HGB: 13.7
PLTs: 233
ANC: 3,907

 


Wednesday, April 27, 2005 11:42 PM CDT

Day plus19

HOW THE DAY WAS SPENT
And another GOOD day! Nicholas went off the floor learning and playing with a child life staff member (working with letters of the alphabet and art) and later with a physical therapist (playing basketball, of course, along with other activities). And he ate GREAT during lunch and dinner. He is working his mind and body, eating, and being a wonderful son. Nicholas is doing his part to “all this leukemia and bone marrow stuff,” so mom & dad are working at doing their part preparing to transfer over to the Ronald McDonald House (RMH).

Mom & dad learned how to prepare his TPN while out of the hospital. Mom prepared a sample one and hooked it up to the IV pumps. Mom is amazing with the medical care for Nicholas. The supervising nurse who taught us (well mom) was surprised at how easy it was for mom to learn and demonstrate the preparation and hook up; she asked the nurse practitioner if mom had a medical background. (Although mom and dad collaborate when writing these journals, mom doesn’t know that dad is complimenting her—once again—on the journal. But when you see something good and/or right, one should say it and recognize it.)

THE NUMBERS
Between Day plus30-40, the first DNA Chimerism test will be performed to monitor the success of the BMT by determining the relative percentage of Nicholas’ and the donor’s T-cells and Neutrophils in Nicholas’ bone marrow. The goal is 100f the donor’s; however, it is okay if it is not 100t first. The Chimerism test will be repeated over time and we will be looking for an increase, not decrease, in the donor’s (T-cells and Neutrophils) marrow at work

April 27, 2005 Blood Counts:
WBC: 3.2
HGB: 13.2
PLTs: 199
ANC: 2,428

 


Tuesday, April 26, 2005 11:33 PM CDT

Day plus18

PREPARING FOR DISCHARGE FROM THE HOSPITAL
Today was uneventful medically—GREAT—and the doctors/nurses began the conversations about Nicholas’ discharge which they scheduled for this coming Monday.

Tomorrow mom & dad will be taught how to work the portable IV pump that we will use at the Ronald McDonald House to administer Nicholas’ TPN until he is able to consume the necessary calories and fluids.

The overall journey is definitely not one where mom & dad choose to watch—we are proactively and consistently involved including the discharge phase where all parents or guardians get involved with the IV pump while away from the hospital. It’s somewhat therapeutic for us to be part of his care medically! In fact, we sure hope the nurses appreciate that mom & dad administer his oral medicines, and mom changes his central line/catheter (Broviac), while Nicholas is in the hospital. And we sure appreciate the care and engagement the nurses & doctors have with Nicholas during the course of their work.

ORAL MEDICATIONS—HE IS AWESOME
Well, you know that Nicholas recently celebrated his pre-school graduation. And now you know that tonight Nicholas, mom, & dad celebrated another graduation “of sorts.” Nicholas is now an oral medication master. He, truly, is awesome at taking his oral medicines. We can’t think of any different or better way for him to take them—he understands why it’s important and his approach is doing whatever he has to do to get home. And he says he likes to make us happy, "that's why I do it."

Nicholas amazes us everyday!

April 26, 2005 Blood Counts:
WBC: 2.4
HGB: 12.6
PLTs: 168
ANC: 1,632

PS: Yesterday, Nicholas' HGB was 9.8 and when it falls below 10 for BMT patients a red blood cell transfusion is given (which was done yesterday). That was only his second red blood cell transfusion since his BMT.

 


Monday, April 25, 2005 11:07 PM CDT

Day plus17

Nicholas is “racking” up the good days as he really enjoyed today playing basketball, bowling, visiting babies in the nursery through their windows, hanging out with the nurses and doctors, and running—well lets say walking—laps around the nurses station. (With his mask on of course.) He ate well and took two additional oral medicines so cooperatively, and we are so thankful. The nurses were concern about these two medicines because their experience is that kids have a hard time taking them. He said one had no taste and the other had a mint taste.

GOING TO THE RONALD MCDONALD HOUSE VERY SOON
Amazingly, we were told that Nicholas may be discharged from the hospital and able to go to the Ronald McDonald House down the street this Thursday or this coming Monday. The following things are factors in determining his discharge date: no reaction to the tapering off of the steroid that began a week ago, yesterday; taking his oral medications; and eating and drinking a stated percentage of his total intake.

Although it will not be home, it will be a “stop” on our journey home. We expect to be at the Ronald McDonald House through the end of June.

THE NEXT PHASE OF NICHOLAS’ JOURNEY
One of the next few journals will talk about the first 100 days of the BMT process.

SPECIAL THANKS
Every single day the guestbook entries you write help us get through the days and phases of Nicholas’—our—journey. Thank you, everyone, including those that we have never met that have unique connections to leukemia and BMTs. All of you are providing us with a level of support and comfort that is very much appreciated.

MOM AND DAD’S DAY
Mom had a nice visit and wonderful lunch (in Nicholas' room) with a friend—these visits have really added a GREAT sense of comfort to mom. Dad went into his office and participated in a meeting (and will do so again tomorrow)—it really felt GREAT for dad to be around his colleagues who are part of our wonderful community of supporters and comforters. They “get it” and support dad toward being where he needs to be—with Nicholas and mom.

April 25, 2005 Blood Counts:
WBC: 1.8
HGB: 9.8
PLTs: 150
ANC: 1287

 


Sunday, April 24, 2005 11:11 PM CDT

Day plus16

We are so thankful for another good day. The doctors and nurses continue to watch the overall engraftment process—including blood counts, chemical normalization, and the response by Nicholas’ body. It’s a journey within the journey. While we are thankful, we also try not to worry about the "tons" of negative consequences associated with the BMT process. We keep our focus on God and do everything we are learning to do through our prayers--we listen, learn, and advocate dearly for Nicholas!

SOME DAILY ROUTINE ACTIVITIES:
A) Weight-to determine whether the fluids in his body are properly balanced and to help evaluate nutritional status.

B) Bathing-for good hygiene because during the BMT/engraftment process his immune system is severely suppressed.

C) Mouth care-including rinsing with a saline solution 4 times per day

D) Vital signs-measurement of his temperature, pulse, breathing, and blood pressure at least every 4 hours to help determine how he is doing

E) Central line/catheter (Broviac)-daily changing of the dressing—by mom—and examination for signs of infection.

F) Lab work-blood drawn from the central line for analysis and reporting

G) Exercise/activities-to help maintain muscle tone and flexibility

H) “Activities of daily living”

TODAY
Nicholas ate well and the TPN is now reduced to 16 hours per day. He was full of energy and kept the nurses and mom & dad busy as he was roaming the BMT unit hallways again without his “IV pole.” Please click on “View Photos” and see him posing as Spider-man.

Mom & dad had a nice visit from friends, and Nicholas really enjoyed playing video basketball against them. Again and again, we know and feel that we are so blessed—thank you all so very, very much.

April 24, 2005 Blood Counts
WBC: 1.3
HGB: 10.0
PLTs: 157
ANC: 731

 


Saturday, April 23, 2005 11:01 PM CDT

Day plus15

A GOOD day! Nicholas played, ran, ate, and spent time with mom & dad (well, every day he spends time with mom & dad and we try hard to keep the days fresh and fun for him).

He ate lunch really well but did not eat his dinner. Remember, Nicholas says his food doesn't have any taste. So we tell him to have bites to re-aquaint his taste buds with the taste of various foods. After trying pasta with meat sause, diced carrots, and a tuna sandwich (he requested this while eating his pasta), he said, "Okay my stomach is feeling better now." And he ate.

NICHOLAS TALKING ABOUT GOING BACK TO HIS HOME
Nicholas has been talking about going home and he knows that when we are discharged from the hospital we have to go to the Ronald McDonald House until the end of June 2005. (It's just a few minutes away from Stanford.) Nicholas said, "I want to go home, but I'll be okay at the Ronald McDonald House because it will not have all these machines and pumps."

LITERALLY RUNNING AROUND
Although being able to leave his room is now not new for Nicholas, today he was able to be off of his "IV pole" for a couple of hours so he was free from being hooked up. When he walked out of his room, he literally ran down the hall and pass the nurses station. The nurses said, "whoa Nicholas slow down." Well there are some times that he has to slow down, like when his respiration was high or his blood pressure was getting close to being too high. We'll add running in the halls to that list. But God's speed for everything else.

Out of his room, today he played hide-and-seek with mom & dad, visited kids through windows, and hung out around the nurses station entertaining them, and being entertained.

THANKFUL
A) For Nicholas' progress--he makes the overall process easier so many times for mom & dad.

B) For a strong little boy with with a big loving heart.

C) As always, for God's omnipotence, omnipresence, and omniscience. He makes it all and we are grateful for His ever-present love.

April 23, 2005 Blood Counts
WBC: 1.2
HGB: 10.2
PLTs: 136
ANC: 604


Friday, April 22, 2005 11:54 PM CDT

Day plus14

HOW THE DAY WENT
Nicholas had a very GOOD day--it was uneventful medically which is GREAT. You may have noticed that the "white" of his eyes are red, this was caused by broken blood vessels when his platelets were low. The red will clear up and go away completely. By the way, it does not cause him any pain or impact his eye sight.

When the physical therapist came to his room this morning, he said, "... I'm ready to go; and I'll go by myself today." And he did go without mom & dad. Today he played basketball and baseball in the physical therapy department.

Mom took him for a walk around the BMT unit for a while and then mom & dad took him outdoors on the BMT unit patio where he was high above, overlooking the hospital grounds.

(On Sunday we will post a picture of this moment under "View Photos" where he posed with both arms up like a "muscle shot" and with an expression of victory--he was outdoors, no mask, and enjoying the weather until it started to rain. Note: when out of his room and not outdoors he has to wear his mask.)

The evening for Nicholas included a very long bath--fun and playtime, mom reading with him, and dad playing various games/activities with him using a large ball.

EATING, OR SHOULD WE SAY NUTRITION
Today the TPN was reduced to 18 hours per day and tomorrow night it will be reduced to 16 hours per day. Nicholas tried to eat some food throughout the day but just didn't want any. He says it just doesn't have any taste (which we understood would be the case) even though we have been ordering foods that are pretty seasoned or have a little spice to them because of this point.

So unlike the last couple of days, today he didn't eat any food--lucky him, he got his nutrition from a bag via IV.

THANKFUL
A) Nicholas continues to NOT experience any pain

B) He is really looking healthy--his skin, mouth, vibrant nature. And the body rash is almost completely gone as there is a little on his legs only. The steroid that has been administerd since last Sunday is scheduled to stop beginning this coming Monday.

April 22, 2005 Blood Counts
WBC: 1.5
HGB: 10.7
PLTs: 119
ANC: 679

 


Thursday, April 21, 2005 11:17 PM CDT

Day plus13

Things continue in a very positive way. We are so thankful.

The physical therapist came by to get Nicholas out of his room for some physical activity. Nicholas surprised everyone by walking all the way to the physical therapy department and playing basketball, bowling, and some set of pop-and-catch the ball device that was great for hand-eye coordination. (Click on "View Photos" after 3:00pm Friday to see pictures from this outing.)

He also walked all the way back to the BMT unit, stopping by the nurse station on his floor for a brief showing to see several of the nurses and a few doctors all at one time. They all cheered for him.

LAB REPORTS AND A RED FLAG
As far as the monitoring of Nicholas' lab reports, his potassium was on the high side and it raised a red flag. The doctors ordered a few additional lab reports and will monitor this closely. An increased potassium level can mean his kidneys are somehow being affected. We continue to pray for healing, and that the issue was just the level of potassium added into the TPN. The potassium amount in the TPN was reduced and other lab work ordered to determine if the level comes back down into a normal range. Please include this in your prayers as we are holding onto continued healing and for this issue to resolve itself without further intervention.

EATING
Nicholas had a few bites of food here-and-there (cheerios, macaronni & cheeze, broccoli, wheat roll, and popcorn). This is great progress for a patiet just going through a BMT. We will continue to encourage him to eat whatever we can get him to eat. The taste of food changes temporarily after a BMT, so things right now probably taste bland or very different. And we recognize that most post-BMT patients just don't have their regular interest in food. We'll try spicy and salty foods as a doctor suggested. We will try it all because the sooner he is eating, the sooner he can be released from the hospital and to the Ronald McDonald House.

April 21, 2005 Blood Counts
WBC: 1.3
HGB:11.4
PLTs: 82
ANC: 789


Wednesday, April 20, 2005 11:10 PM CDT

Day plus12

AND ANOTHER GREAT DAY
WBC and ANC were up from yesterday. Today's 988 ANC marked the second consecutive day it was over the target of at least a 500 ANC. Another milestone and record for having two consecutive days so quickly. As a result the antibiotics being given were stopped.

And, Nicholas can now leave isolation--he is no longer restricted to his room as he can go out to designated areas within his hospital unit--as long as he is wearing a specific type mask that he was fitted for this evening. Although he could have left his room this evening, we are saving that milestone for a picnic tomorrow on the hospital unit patio. Isn't this amazing? Thank God.

ANOTHER IMPROVEMENT SIGN
Today the TPN (IV feeding) was reduced to 22 hours from 24 hours per day. This evening he had a few bites of baked chicken and mashed potatoes, and popcorn while watching Daddy Day Care.

NOT WASTING TIME
When talking with the nurse-practitioner, Nicholas asked "When can I get my Broviac (central line/catheter) out?" Note: This is scheduled to happen several months from now.

THANKFUL
A) His rash has improved significantly

B) Nicholas, and mom & dad, had two consecutive "good" days

C) Nicholas' continued cooperation, spirit, and positive approach to all "this leukemia and bone marrow stuff"

D) A nice visit today from a friend (mom).

INFORMATION ABOUT NICHOLAS BLOOD COUNTS
One of the side effects of yesterday's last chemotherapy (Methotrexate) is suppression of Nicholas' immune system (effecting his counts), so his counts may go back down before continuing to go up to the targeted counts.

April 20, 2005 Blood Counts:
WBC: 1.5
HGB: 11.5
PLTs: 47
ANC: 988


Tuesday, April 19, 2005 11:43 PM CDT

Day plus11

ANOTHER GREAT DAY
We were told that Nicholas is breaking a lot of the BMT records and that he is an A-plus transplant patient. Praise God. Rememer the Patient Control Analgesic (PCA) that delivers pain medicine? Well, today it was removed. Wow, isn't this amazing! Oh, and he hasn't vomited for three consecutive days now.

LAST DOSE OF CHEMOTHERAPY
This evening Nicholas received the fourth of 4 doses of Methotrexate (chemotherapy) as part of the BMT regimen. Another milestone and another celebration.

ENGRAFTMENT AND THE NUMBERS WE ARE WATCHING
We recognize how important you and your prayers have been to us on Nicholas' health and healing journey, so the following information enables you to better understand the targets we are now aiming for as engraftment of the donor's bone marrow takes place.

The "Our Targeted Blood Counts" section below provides the information that will be placed on the heading of this Home Page moving forward to keep you informed (below the picture above). With the information you can track with us how he is progressing regarding the "counts" of the stated day, and enables you to focus your prayers for Nicholas. Again, thank you so much for your prayers!

Engraftment:
Is when the donor's bone marrow begins to grow and mature in Nicholas' body. And it is a sign that the new marrow has "taken," noted by an increase in blood counts.

White Blood Count (WBC):
Type of blood cells produced by the bone marrow that are primarily responsible for fighing infection. A low white count is associated with an inability to fight any type of infection.

Hemoglobin (HGB):
Is part of the red blood cells that carry oxygen to the tissues.

Platelets (PLTs):
Type of blood cells produced by the bone marrow that are primarily responsible for the control of bleeding. A low platelet count means an increased risk of bleeding because the clotting factors are too low (may cause easy bruising, petechiae, and prolonged bleeding).

Absolute Neutrophil Count (ANC).
Is WBC multiplied by 10, multiplied by the number of "polys" (segs and brands) or neutrophils. It determines the number of the most important cells that fight bacterial infections.

With the beginning stages of engraftment, the numbers could go up and down for a period of time before they are stabilized.

OUR TARGETED BLOOD COUNTS
1. ANC of at least 500 for two consecutive days
2. WBC of 5.5-15.5
3. HGB of 11.5-13.5
4. PLTs of 150-400
5. ANC >1,000

APRIL 19, 2005 BLOOD COUNTS
WBC: 1.0--this number so soon is amazing
(Days after the BMT the WBCs were <0.1, 0.1, 0.2, 0.5)
HGB: 11.2
PLTs: 26
ANC: 792 and this number so soon is amazing

Mom and dad are so thankful, and know the journey continues so we will approach things one day at a time.

-Click "View Photos" after 2:00pm Wednesday for Tuesday's pictures-


Monday, April 18, 2005 3:36 PM CDT

Day plus10 (Day 150 since Nicholas' leukemia diagnosis)

Nicholas' doctor came in yesterday afternoon (Sunday) from home to evaluate the fever & rash, and consult toward the appropriate intervention to take.

HAPPY NEWS
Yeh--happy, happy, happy day! Yesterday evening Nicholas' fever finally broke and he remained a-febrile (without fever) through the night and up to this moment. Amazingly (this word applies again), right after his fever broke and after many, many hours of labor-intensive breathing (concern with his respiration), Nicholas was full of energy. After it broke, one nurse who was with Nicholas over the weekend said, "Is he always high-energy?" Another nurse who cared for Nicholas Saturday night stopped in to see what others had been hearing Sunday night regarding how well Nicholas was doing. This nurse, too, was amazed with the turn around.

ENGRAFTMENT IS HAPPENING--THANK GOD
Today's (Monday) lab results show signs of early engraftment and you don't see it early very often, one doctor said to us. This is amazing and GREAT NEWS! Typically, engraftment starts around Day plus14, and later for transplants using a MUD. What a blessing. I guess the "roller coaster" continues--what a difference a day makes!

THANKFUL
A) For all the continuous prayers and for you continuously being with us in prayer & spirit.

B) Nicholas' rapid breathing over the last 24-plus hours has reduced significantly. His respiration has been extremely high--like he was running a 24-hour marathon and our doctors were concerned. (The fevers certainly contributed to the rapid breathing, as he was trying to keep warm when he was chilly.)

C) Beginnning of engraftment--again, thank you donor.

D) Rash is clearing up

--Click on "View Photos" for a view of Nicholas this morning--


Sunday, April 17, 2005 11:53 AM CDT

Day plus9

Yesterday (Saturday Day plus8) was another very, very long night that continued into this morning (Sunday). Fevers, chills, rash, high blood pressure, and another Platelet transfusion. The fever broke once and continues, and the rash on his chest now includes his entire upper body and face. And all of this is part of the process.

Nicholas has not complained of any pain or itching; but it's so hard to watch over him as he shivers to keep warm although his body is very, very hot. Along with Tylenol, Benedryl, antibiotics, "cooling blanket," and cold cloths, we continously work to comfort him and to break the fever. We make him as comfortable as possible, praise him about his strength, cooperation, and coach him to take his medicines as well as to keep up the "good fight."

Again, the medical staff displays hard work caring for Nicholas as if he was their child. Mom and dad went on 4-hour shifts last night. Coupled with all of this, we tried hard to spend some quality time with our other three boys in celebration of their birthdays. Needless to say, Nicholas was happy to see them.

ROLLER COASTER
This journey to health and healing is like a roller coaster. We are thrilled about the progress Nicholas makes (and we get excited like going up on a roller coaster). Other times it's like "losing your stomach" (we feel so sick like going down on a roller coaster). It's like being on a roller coaster 24/7. Of course, we choose to focus on progress, creating our own when necessary, and constantly zeroing in on the joy that God brings us & being thankful.

SATURDAY
Nicholas did not have a lot of energy, however, we made up ways to stimulate his "playfullness." Sometimes we just made up games on the spur-of-the moment to be playfull, learn something new, or just talk about things.

THANKFUL

A) For Nicholas, his strength and inspiring approach to all "this leukemia and bone marrow stuff"

B) The Leukemia & Lymphoma Society-Team In Training who made Nicholas an honoree raised money for the Society via pledges and running many, many miles. And a team member stopped by to deliver Nicholas an Honoree T-shirt and a T-shirt signed by their members that included individual-personal words of encouragement. Thanks Kimmy (Nicholas' former nanny and team member who presented Nicholas to the team) and Christina (who not only is on the team and took time to see Nicholas today, but was one of his nurses at Children's Hospital-Oakland. Demonstrating passion for her job 24/7 balanced through personal joy is so evident).

C) Our three older boys joined us to celebrate their birthdays

 


Friday, April 15, 2005 11:57 PM CDT

Day plus7 (2nd journal entry today)

This afternoon, Nicholas had a peaceful, relaxing time. It was un-eventful medically just the way we like it.

He played basketball live for a short period of time, catch, did some artwork, and a couple other activities with child life and physical therapy members. (This is a great help toward keeping Nicholas active and enables him to interact regularly with other faces than mom and dad.)

You have heard this part, but understandably, all of "this" is extremly hard on mom. She, too, has been amazing and her pain is awful. Dad will always be there "with" her and "for" her! Thanks for the many things that several of you have done for her! (Yes, dad just added this note because it is important to say and give thanks.)

Dad found a very good Japanese restaurant nearby, for a nice break from the hospital food. Mom was able to enjoy one of her favorite foods--shrimp tempura rolls, and dad was able to enjoy his--salmon teryaki and California rolls. On a different level, this was a little hard on mom and dad as well because at this time Nicholas is not eating and he is not able to have food from restaurants. He would have had his favorite--shrimp tempura.

THANKFUL
A) Nicholas' fevers broke for a period of time and he is going to sleep without a fever

B) Mom and dad were able to get a little rest

C) Ms. Shirley called and read a story to Nicholas


Friday, April 15, 2005 2:08 PM CDT

Day plus7

Nicholas had a very long day and night yesterday (Thursday) and the long day continued into the early hours this morning (Friday). He had another platelet transfusion and then a red blood cell transfusion this morning at 3:30 and 6:00, respectively. We understand the blood transfusions are frequently required during the time of marrow engraftment, AND it is just so hard coupled with other aspects of the process toward his health and healing.

After the platelet transfusion early Thursday morning, Nicholas had a "reaction" that may have been a result of the fever he had, combined with the transfusion. Before the transfusion he was pre-medicated for a potential reaction and that contributed toward controlling the reaction so no other intervention was needed.

He had a fever throughout Thursday and it/they continue now. They have sporadically "broke." Antibiotics will continue until his numbers come up--until his ANC comes up to 500 for two consecutive days. We also understand that sometimes the fevers don't break until engraftment. And with engraftment it's expected his numbers will come up around Day plus12 to Day plus14.

Blood cultures and urine samples taken Wednesday evening after the fever first started were negative for infection--thank God!

Based on the above, you probably figured that Thursday was a quiet and not too active of a day for Nicholas. Yes, it was quiet and not too active. Mom and dad were in a constant reassuring mode to Nicholas (as always) coupled with being very, very watchful and prayerful over him. However, Thursday afternoon he played a little catch and bouned a ball back-and-forth with mom for a short period of time. Nicholas did not have his normal energy level; however, he remained incredibly alert and in-synch with everything that was going on. And through it all, he (or mom and dad) did not have to press his PCA to administer any pain medicine. He did not complain of pain or show any signs of pain--he more than copes with "this leukemia and bone marrow stuff" (as he puts it).

Today, Nicholas will be monitored more closely toward ensuring there is no fluid build up and no negative impact to his liver.

WE ARE THANKFUL:
A) Nicholas' blood pressure has not been high

B) His overall "numbers" and chemistry continue to look good

C) The staff state that while he is experiencing the situations described above that are expected, and are so difficult for a parent to watch and care for, "He looks good, he really does!"


Wednesday, April 13, 2005 11:31 PM CDT

Day plus5 (Day 145 since Nicholas' leukemia diagnosis)

Nicholas had a very quiet day. Not surprisingly, he slept a lot more than usual and did not have too much energy. But he had time and found the energy to play and have fun. He painted with a staff member from child life and created a nice picture for mom (as of April 13 click on "View Photos" to see him painting). Nicholas also called his teacher, Ms. Shirley, and asked her to call to read him a story. (He will always call Ms. Shirley his teacher.)

And thank you DVMS administrators, teachers, parents, and classmates. You continue to amaze us with your support and actions.

Early evening he spiked a low-grade fever and it "broke" right away. About two hours later he spiked another low-grade fever and it also "broke" quickly. However, Nicholas received antibiotics for only the first time since his BMT.

Although the process indicated that mouth and throat sores would develop and worsen, today he actually needed less pain medicine. And he was able to drink water without any apparent difficulty. He is not eating at all and continues to receive TPN and Intralipids (fat content).

Also as expected, his blood counts have drastically dropped and he will need to have a platelet transfusion within a few hours. His red blood counts, however, continue to be amazingly GREAT!

WE ARE THANKFUL
A) No high blood pressure
B) He successfully took his oral medicine (with ice cream)
C) Fevers "broke" quickly
D) He is on target medically and responding very well to the process

However, the process is so scary and is hard on mom and dad--which is nothing compared to Nicholas and we thank him moment-by-moment for being so amazingly strong, confident, and cooperative. It's hard on Nicholas' three big brothers as well as they balance their focus on Nicholas and their school work. And it must be hard on you so we trust the journals and guestbook provide information enabling you to spiritually and virtually be with Nicholas.


Tuesday, April 12, 2005 11:56 PM CDT

Day plus4

Today a Patient Control Analgesic (PCA) was hooked up. The PCA delivers a continuous flow of pain medicine. It enables mom, dad, or even Nicholas, to release a boost of the pain medicine by a push of a button once every 10 minutes. It seems to be working well, although with Nicholas it could be hard to tell because he generally does not complain. He is such a "trooper."

We have been trying all day to give Nicholas his morning oral medicine (Actigall, ensures his liver remains healthy). He vomitted three times right after taking it, and a fourth time he vomitted seconds before we were going to administer it. Benedryl on top of Zofran was given as it usually does the trick, but not today. The Benedryl did work to put him to sleep, as he fell asleep about 7:30 pm and woke up around 11:30 pm. Now he is wide awake. Oh well, it is all about Nicholas right now for us. Tomorrow, we will administer it in pill form by crushing it and mixing it with something like applesauce. This worked before with another medicine he had difficulty taking.

Aside from having the throat and mouth pain, and vomitting, Nicholas had a good day. Really, we had some very special conversations and time just being together.

REASON FOR BEING THANKFUL
No fevers and no high blood pressure--thank you God!

Our friend, Soha, came by and spent some time just chatting and mom and Soha enjoyed a cup of tea. It was a nice visit. Several hospital staff members (child life and physical therapy) came by and spent time just with Nicholas, as well as other members spending time with mom and dad. And the nurses continue to be so very caring (not just doing a job).

Our three older boys have birthdays coming up within the next week. We are planning to have them here overnight at a hotel so we can have dinner together and enjoy a mini celebration. We will either have dinner brought into us so we can all be together in Nicholas' room, or mom and dad will split up with one having dinner with them and the other dessert. But we would rather all be together with Nicholas, he would really enjoy it and so would we. We will have all of them together in some way.

Goodnight, more tomorrow.


Monday, April 11, 2005 11:56 PM CDT

Day plus3

Once again we were told by all the doctors/nurses caring for Nicholas that he looks wonderful, lab work looks good, and he is doing great! We are so thankful.

Nicholas has been teaching some of the nurses how to play basketball on his play station-some are getting hooked on the game. Mom read to Nicholas, dad played live basketball with him and two-square (I'm sure some of you remember this game). And Nicholas enjoyed time playing by himself with his Peter Pan and Spider-man action figures (at the same time, what a combination).

As expected, a little mucositis is starting in his throat and a bit on the inside of his cheeks. Pain medicine was started tonight to get ahead of the pain so it's easier to control. It seemed to work well. Nicholas became a little sleepy but not too sleepy.

CELEBRATION OF THE DAY
His blood pressure was good all day and we have not had to start him on any blood pressure medicines at all yet. It is expected, so we're prepared if it happens. We pray that it doesn't.

A few days ago we started a medicine-treat cup. Nicholas came up with several things he would like as a treat for taking his oral medicines within one minute from the time we tell him it's time. One of the treats is to squirt mom or dad with water from a medical syringe after he takes his medicine--he really likes this one! The idea of squirting someone with the syringe came from a nurse--thanks.

We're looking forward to a nice nights sleep and a great day tomorrow. Good night.


Sunday, April 10, 2005 11:59 PM CDT

Day plus2

We hope you had a happy Sunday; we had a good day. Mike, Linda, and Joey came by and Nicholas & Joey played through the window between Nicholas' small room leading into his hospital room. It was a little hard to keep them apart--I'm sure they just wanted to wrestle and play sword-fight as they usually like to do. Well, I guess we can say at least we're one day closer to that happening again.

WHAT'S HAPPENING MEDICALLY
A) Nicholas was having a little too much nausea so he was put on round-the-clock Zofran (an anti-nausea medicine) and today we had only one episode of vomiting. While we understand this is normal and expected, it doesn't have to be. We pray that this will ease up and ask for your prayers on this as well.

B) He started TPN (the nutritional supplement) tonight as the doctors want to keep him healthy as possible.

C) His blood pressure has been running a little high so that is being monitored, and there is an order in for blood pressure medicine should it get to a specific level.

D) Also, the staff has advised us to watch out for any signs of pain in the mouth or throat as he could start to develop mucositis any day now. We're praying he won't, but almost all of these kids do--especially ones that have a matched-unrelated donor (MUD) transplant like Nicholas did. Tonight Nicholas did complain of throat pain early and late evening so we are all monitoring this and prepared to administer medications to control pain. And guess what, Nicholas still asked for popcorn to go with his movie!

TODAY'S CAUSE FOR CELEBRATION (BEING THANKFUL)
A doctor commented on "rounds" today that Nicholas was her healthiest patient and they are very pleased with where he is--and boy so are we.

And we are praying for all kids suffering to be comforted and healed.

HOW THE NIGHT WAS SPENT
We cuddled up on the window seat and spent time together watching a movie, and talking about various things. We're trying to get to sleep earlier because we have a lot of sleep to catch up on. Day plus6 and plus14 are supposed to be some of the toughest so we'll have to be prepared just in case. It is still so very hard seeing Nicholas go through discomfort, pain, and wanting to be home enjoying life. We will find joy here in the hospital, it's just so hard overall.

Stay well and have a wonderful week; we miss you all.

 


Saturday, April 9, 2005 5:41 PM CDT

Day plus1 (Today is considered "Day plus1" although yesterday was, because yesterday is now considered another "Day 0" based on the BMT infusion finishing at 1:00 am on April 8. This change is important because it determines the dates that certain medications will be administered over the next several weeks.)

Nicholas is doing GREAT!

CELEBRATION OF THE DAY
Although Nicholas is not eating like he normally does, he is eating well and everyone is amazed because by this time most BMT patients are on Total Parenteral Nutrition (TPN). TPN is indicated for patients when oral or tube feeding provide inadequate nutrients. He is expected to be on TPN at some point when mouth sores develop (Mucositis) as referenced in the next steps of yesterday's journal.

EVERYTHING ELSE
Last night was warm, comfortable, and Nicholas slept well. He woke up today in a good mood, we listened to music, read books, he played a lot of games (Go Fish, Pick-up sticks, Barrel of monkeys--yes these are still made, and a computer game that is entertaining and teaching--he was learning about shapes). He also did some "typing" on our computer we brought from home. Although it was a lot of computer equipment to bring from home, we use it for a variety of things including the screen saver that looks & sounds like a fish tank as the fish swim around and bubbles rise. And it provides a concert-like sound for our CDs.

Later today we will go bowling--well bowl on a desktop bowling alley. And tonight we will enjoy a family movie on the window-bench seat (as we try to keep him off of his bed when not resting or sleeping). Other days have corresponding events like bowling and a movie today. And we are using three different colored rugs (tan, green, and blue) to simulate being near dirt, a park, or water, for various in-room outings such as sitting under corresponding "mobiles" (sailboats, dolphins) or the multi-colored kite suspended from the ceiling.

Mom and dad are exhausted and feel like we can sleep for several straight days. Through God we know we can keep going. And mom has not felt the need for shopping mall therapy--the fabulous Stanford Shopping Center is across from the hospital.


Friday, April 8, 2005 5:08 PM CDT

Day plus1 (Day 140 since Nicholas' leukemia diagnosis).

CELEBRATION OF THIS STAGE OF OUR JOURNEY
Last night (Thursday) at 9:30 pm Nicholas started receiving his bone marrow transplant. It was successfully completed this morning at 1:00 am. As the bone marrow was hanging on the pole and began to trickle through Nicholas' central line/catheter (Broviac), the doctor reminding Nicholas what it would be like said, "here it goes." Nicholas said, "Is that all!"

We had a deep-heartfelt prayer led by a long-time friend and minister that provided comfort to our family and helped us to stand immovable and fixed on our understanding of Nicholas' health and healing in the Name of Jesus. Then before the transfusion started, mom, dad, and two of Nicholas' brothers shared a prayer with Nicholas to prepare us and galvanize us in our Father, God.

Nicholas watched a DVD (he choose Sleeping Beauty), played with his brothers, family, & friends, and talked on the phone like it was a normal evening. When Nicholas was reminded that a BMT is sometimes referred to as a re-birth day, he said, "Am I 6 now?" He was awake during the entire infusion.

He did experience a little hypertension around 11:30 pm and it was quickly controlled by medicine. He slept soundly until about 6:30 this morning (Friday) when he vomitted twice during that hour. But the rest of Friday morning up to this point has been amazingly normal--later we will update the journal with today's overall experience.

NEXT STEPS
A) Wait for signs of engraftment, that Nicholas' body accepts the bone marrow.

B) Then, watch for the new marrow to "work." And not recognize Nicholas' body as being foreign which would cause an immune reaction called graft-versus-host disease (GvHD).

C) His blood counts are expected to drop drastically--which is part of the process--in response to the chemotherapy during his conditioning regimen and the FTBI. They'll go down before they go up (up to normal, which is what we want). Blood transfusions are expected to be frequent.

D) Nicholas will be in isolation for 2-4 weeks.

E) Next 2 weeks are generally the most difficult at this point because his counts are expected to be so low and his body would have nothing to fight off things that your body, and our body, daily fight off as routine.

F) He is expected to be tired and have mouth sores that will travel down. This is temporary and will improve with mouth care and when the new marrow starts producing white blood cells. He is also expected to contract fevers. HOWEVER, AS NICHOLAS HAS SHOWN ALL OF US, HE IS AN AMAZING BOY WHOSE JOURNEY MAY REWRITE THE TEXT BOOKS.

TWO IMPORTANT NOTES
1) To you donor, wherever you are, know that you are loved by so many for your incredible giving toward a gift of life without expecting anything in return. We know that you may have felt afraid, an overwhelming sense of responsibility towards the outcome, and perhaps unappreciated. You, donor, are a hero among heros. Your reward I can not state as God's love for those who demonstrate and live as you have shown Nicholas and mom/dad, is the greatest thing that anyone receives.

2) And, again and again, thank you everyone for all that you have done, said (including the guestbook entries), and prayed. Please continue and share in the glory of God's work on Nicholas.

CLICK "VIEW PHOTOS" TO SEE THREE PHOTOS FROM LAST NIGHT

 


Wednesday, April 6, 2005 10:59 PM CDT

Day -1, second entry today as tomorrow is Day -0, the day Nicholas will have his bone marrow transplant.

Today was another good day for Nicholas. He had one episode with vomitting in the early evening, and this time it wasn't because we were trying to give oral medication... We'll see how he does with that later tonight.

Our friend, Gina, came by and provided us with some much needed time to sit and talk.

The wonderful radiology staff gave Nicholas a very nice Star Theater interactive planetarium. He loves to look at the stars, and now he can look at them right here in his room which we plan to do tonight.

This evening we received the news that the bone marrow will arrive at the San Francisco International Airport tomorrow (Thursday) night at 6:00 pm. Based on the delivery time to Stanford-LPCH and their labs completion of a cell count and other analyses, the infusion is planned to start around 9:00 pm. It is given just like a blood transfusion through his central catheter in his chest that he has had since the second day of his diagnosis. Nicholas will be monitored for any type of reaction throughout the infusion, which takes approximately 4 hours.

We have two radiation treatmens tomorrow morning, and then Nicholas is officially done with the conditioning regimen. We are so thankful this stage is over, and not just because mom had such a hard time getting up for the early morning treatments.

Thank you for the lovely journal entries--they certainly help pick us up through the difficult days.

We are so, so scared AND know that Nicholas is in the hands of God which is GREAT. We ask all of you to PRAY like you have never prayed before!

 


Wednesday, April 6, 2005 2:05 AM CDT

Day -1 (Day 138 since Nicholas' leukemia diagnosis).

We had a great day on Tuesday. In between Nicholas' 3 radiation treatments we ate, played video games, other games like "I spy with my little eye," basketball, and talked. A computer volunteer came and worked with Nicholas on some interactive books and programs. Nicholas loves "clicking" (as he calls it) on the computer. And he loved the time spent with this volunteer.

Our doctor came in and said that everything is working just the way it's supposed to--we were happy to hear that.

Our friends Dave and Janie came to visit and brought us a "real" meal along with some home baked goodies (Thanks, everyone, all of you everywhere have been there for us in so many ways.) Their four daughters Victoria, Alexandra, Sophia, and Anastasia made Nicholas a beautiful banner for his room. It is absolutely beautiful and coincidently includes several of Nicholas' favorite things to do: merry-go-round, a train (like at Tilden Park), horse, etc.

As the night wound down and it was time for evening medicines, Nicholas promptly vomitted. He just hates the taste even though we have flavoring added to some. We feel so badly for him. We have taken to bribery in some cases and have a feeling that we'll have to start an IOU policy.

Early evening we took a trip down to the hospital's gift shop (his numbers are still good) and he picked out a Yu-Gi-Yo game, a couple of metal airplanes, and a barrel of monkeys. He was proud to pay with his "own" money.

Well, good night--we'll be up bright and early again for a 7:30 radiation treatment. Boy, they forgot to check with mom when they scheduled these appointments. Oh well, maybe that will help mom become the morning person she most definately is not. Until tomorrow...

Note: Home page picture as of April 5 shows Nicholas lounging at the Ronald McDonald House as dad was registering on March 31. And the pictures after clicking on "View Photos" are from his first week at Stanford for the BMT.


Tuesday, April 5, 2005 2:09 AM CDT

Day -2 (and Day 137, instead of 136, since Nicholas' diagnosis).

Note: Home page picture as of April 5 shows Nicholas lounging at the Ronald McDonald House as dad was registering on March 31. And the pictures after clicking on "View Photos" as of April 5 are from his first week at Stanford for the BMT.

Yesterday's (Monday) total body irradiation treatments (TBI) were extremely hard for Sheila and me. Even though the three TBI's at 7:30 am, 11:30 am, and 3:30 pm were only about 6 minutes each after set up, seeing Nicholas strapped into a harness and alone in the room was very, very emotional for us. Especially when the "Beam On" light lit above the 10" thick doors.

But you know Nicholas, he handled the time receiving the TBI's very well. He was cooperative and patient with the process. And here are a couple humorous things: 1) During the first treatment he wanted the Space Jam DVD to be playing and it was okay with the medical staff. A couple times he began to move to the music of the movie and through the intercom we had to remind him to stay still (he has some movement while in the harness). 2) During the second treatment he was facing a wall so the staff put up a "Where's Waldo" page thinking it would take some time for him to find Waldo so we could be assured that he would be still, concentrating with minimal movement. Within 10 seconds he found Waldo so the staff had to stop the machine and turn to a different page. They laughed!

While Nicholas is in the treatment room, Sheila and I have access to a monitor and the intercom so we could see him but he can't see us. The three of us communicate back and forth via the intercom. Nicholas liked having Sheila read to him during one of the treatments--she has a beautiful, soothing mother's tone of voice.

After the third--and final--TBI Monday, Nicholas ran into a physical therapist he met Friday who promised to play basketball with him Monday. So, with the permission of his nurse we went to the physical therapy department. Nicholas choose to walk up some stairs versus the elevator and played one-on-one basketball with the therapist for about 20 minutes. His energy was incredible, and he made a lot of baskets after warming up. When we returned to his floor, the nurses at the front desk were amazed at his energy and seeing him demonstrate moves--jumping up and spinning around. His strength and energetic reputation has already been surfacing around Stanford.

He ate breakfast and lunch well; however, he experienced some jaw pain early evening. This is a common side effect with the radiation. As they were preparing to give him some Tylenol to take care of the pain, he was feeling nauseous and vomitted. After taking more medicine to prevent nausea and the Tylenol, he feel asleep. He vomitted again around 10:00 pm.

We constantly remind Nicholas how much we love him, how much you love him, and of God's love. We deeply express that it is, truly, amazing how he is handling all of this. And that he is amazing. When he talks about what he doesn't like about all of this leukemia stuff, he expresses himself so clearly about the medicines, appointments, being hooked up to a pole (IV), and then says, "I know I have to take the medicine to get better, I will take it."

The child life specialists, physical therapists, nutritionists, chaplin services, and nurses/doctors have been very proactive and attentive to Nicholas as well as Sheila and me. In so many ways they have already helped to reduce anxious moments and pressures that have been heavy on our hearts and minds.

Please, please continue with your prayers--thank you so much. We understand that it is "Thy will" be done and not "my will" be done; and we know that God's plan is the "right" plan. Yet, we are still afraid a lot. Something we heard today has been helpful: God is okay with us pushing back and being afraid. He will answer and comfort us.


Monday, April 4, 2005 2:57 AM CDT

Day -3 (and Day 135 since Nicholas' diagnosis).

Yesterday (Sunday) Nicholas had a good day! Our doctor and nurses commented that he is doing "great"..."marvelous." Based on his energy and liveliness, his nurses couldn't believe that he just had the 2 days of high-dose chemotherapy. Regarding his vomitting Saturday night, one of the nurses came up with a way to take a medicine (Actigall) without any vomitting. The Actigall seemed to be contributing to the vomitting--no problems at all Sunday. She simply changed it to a tablet, crushed it, and mixed it with a cherry syrup.

Nicholas ate great, we did a lot of playing & reading, and he had his first visitors at Stanford--Annette and Marialena, friends from work.

Sunday afternoon he watched the original Wizard Of Oz for the first time. He enjoyed it, and several times during the movie he said, "Why do they sing so much." It was interesting to hear him say that because he has seen several live musical-like theatre events such as The Lion King and he never made that comment. At 10:00 pm we played a treasure hunt game by walking around the hospital looking for 5 objects: towel, crib, balloon, computer, and a wagon. Nicholas found all of the items, some of them he found in pictures hanging on the walls. Before bed we had a "Journey Into Space" via a National Geographic 3-D Space Projector that was a gift from several other friends from work. Thanks; several times during the viewing Nicholas stopped and said, "That is so beautiful."

And of course, we played basketball on the hoop in his room and on a video game. Nicholas played video games with other patients in the playroom. When a patient came into the playroom and was watching Nicholas and the others play, Nicholas stopped and said, "Come on, you can play too." We really admire his continued caring for others!

Just after midnight (Monday morning), Nicholas had a red blood cell transfusion. Although his hemoglobin counts were in the normal range, during the fractionated radiation treatments that begin this morning (Monday) the doctors need to be assured they are at a specific level.

Nicholas understands that he will be receiving the radiation treatments and said, "I know that I will be strapped down so I don't move. But that's okay because mom's going to be reading to me through the intercom."

It really comforts mom for her to hear the very positive comments, from the doctors and/or nurses, like above on how Nicholas is doing.

Mom and Dad say, "God, thank you for Nicholas, he is an amazing inspiration! Thank you for so many wonderful friends. And thank you for your Love." It is so hard to deal with everything that is going on, but we are keeping our focus on God and Nicholas.

Note: It's very late and we need to be ready by 6:45 am, so later today or tomorrow we will try to replace the home page picture and the three pictures under the "View Photos" icon with some from the last few days.

 


Sunday, April 3, 2005 3:19 AM CDT

Day -4

Yesterday (Saturday), Nicholas had his second and final high-dose Cyclophosphamide. There were no immediate side effects, however, from 10:00 pm to midnight he was a little nauseated and vomited 4 times. This is expected with this high-dose chemotherapy even though he was administered medicine to prevent being nauseated.

Nicholas, understandably, does not like having to take all the medicines--and at times his reaction (vomiting) seems to be triggered by taste. A good thing here is that he always lets mom and dad know at least 30-seconds before he's going to vomit.

Other than that, and overall, he is doing GREAT--energetic, "up and about," and in good spirits. In fact, the visit by his doctor yesterday was very brief because everything is going well. Nicholas enjoyed playing with other kids in the playroom. And he ate great all day.

It scares us and makes us very, very sad seeing the visual affects associated with his sickness. It's so hard seeing him strain while vomiting. We pray with him, let him know he's doing everything right, and try to comfort him during these times.

Today (Sunday) is a "rest" day as he has no chemotherapy or in-hospital appointments. And, again, we are so thankful for your prayers and for how well Nicholas is doing considering the whole ordeal.

Mom is also thankful for the "egg crate mattress pad" for the bench-bed she sleeps on. She said it feels like she's getting a massage as she sleeps. Dad is also thankful to just be with Nicholas and mom. (Dad says thanks, Chris, Tim, and Matt for your spiritual help and undertanding during all that is going on with your little brother.)


Friday, April 1, 2005 5:44 PM CST

Day – 6 (6 days until “day 0,” Nicholas’ BMT date)

March 31 we had a nice sunny drive to Stanford. Our room was not ready, however, we were able to complete the admission process and more scheduled chest x-rays. Because the room wasn’t going to be ready until 7:30 pm, and Nicholas’ “numbers” were very good, we treated Nicholas (well mom too) to Nicholas’ first dinner at a restaurant since his leukemia diagnosis. (Our doctor was very supportive of this time out.) We went to PF Chang’s across from the hospital—Nicholas was craving shrimp tempura and salmon. He happily ate every dish containing shrimp including fried rice, crispy honey shrimp, and a shrimp appetizer & crab cakes, as well as salmon!

When we arrived to the BMT unit for our first night at Stanford, Nicholas’ nurse greeted him by name right when we walked onto the floor. This was a warm, comforting feeling for us. And, it reminded us how our doctor always greets and engages Nicholas—first—when we interact with her. Nice touch and as she says, “I love what I do.” It shows!

While Nicholas was sleeping soundly and comfortably, we set up his room with a sail boat mobile, dolphin mobile, colorful kite, and many books, games, toys, that he enjoy. And of course, a personalize basketball hoop. We’re going to have some great one-on-one games even in the hospital. And mom will also play.

Nicholas had his IVIG last night and did just great with it (some kids have a reaction to this medicine). Today, Nicholas is getting his first high-dose chemotherapy (Cyclophosphamide) and will get the same thing tomorrow. He was patient and did just fine during his appointment today in radiology to ensure his chest plates fit. They will protect his lungs during the 3 ½ days of radiation treatments that begin on April 4. This treatment will last about 6-10 minutes three times per day during the 3 ½ days.

Not surprisingly, Nicholas is doing amazingly well. We are now in the playroom (with chemotherapy hanging on the pole) and will be going to the rooftop before dinner. The rooftop has a walking path with lots of plants, and we heard it has nice views.

Imagine this, we are talking about fun in the same breath as BMT. We thank God every moment and continually pray to understand his plan for our “sunshine,” Nicholas.

Thursday, March 31, 2005 11:52 AM CST

Day -7

Ok, here we go...we're all packed for our excursion to Stanford-Lucile Packard to start our first day of treatment. We'll have IV Cyclophosphamide today and probably a bunch of work. And we have some stuff to decorate the room so it'll somewhat feel like "home", that'll be pretty much our day today. We'll keep you all updated.

Don't forget to pray for us and keep the well wishes coming on the guestbook, we love reading them!

It's a beautiful day today, we are so thankful for that.

Matt's off to Joe's house for the next week or two, good luck Mary and Terry...we really did teach him manners, make him use them!

We miss you Tim, Chris, and Matt!

Nicholas would like to add his own message, so here it goes:

ghuryyfgfggwgqvahbxbvvvgdfhfuhuifgjijyjjohituopipkyoum

(the interpretation is "I don't know").


Tuesday, March 29, 2005 11:01 PM CST

Nicholas is still doing amazingly well, and he had a fun, educational weekend. He played a lot of basketball over the weekend & the past two days, decorated Easter eggs with Kimmy (former nanny) & mom, and played games with the neighborhood kids. Nicholas wanted to, and several times watched "The Animated Passion"-story of the passion and resurrection of Jesus Christ. He enjoyed the separate sing-a-long songs as well.

Several times was the theme for the weekend as Nicholas also asked for multiple Easter egg hunts, and we did.

We spent a lot of time getting household things together to prepare for our stay at Stanford-Lucile Packard Children’s Hospital beginning March 31, and the bone marrow transplant scheduled for April 7. We are very tired and at times it’s hard to rest because we want to ensure we are doing everything we can. God is our strength and source of comfort, and of course Nicholas gives us so much joy that we just keep on going and going. We trust in God to help our other three boys to continually understand and hold onto the moments we share with them as most of our time has been with Nicholas.

Thank you, your “guestbook” messages are very helpful to us. And please continue to pray for the “guidance” of all as our journey continues.

Notes:
1) Please click on the “View Photos” icon below to see three of the pictures of Nicholas playing basketball this past weekend.

2) "My Doctors/Nurses album," to view please copy and past the following URL onto your browser: http://www.kodakgallery.com/I.jsp?c=hzm3iu6.yizhw0u&x=1&y=81zxm2

 


Friday, March 25, 2005 11:58 PM CST

Well, all the pre bone marrow workup is completed as of today…Nicholas had a lumbar puncture to make sure the cancer did not show up in his central nervous system (CNS) and a bone marrow biopsy to make sure he’s still in remission. REMEMBER, he has been in remission since the eighth day of the diagnosis and the cancer has never been in his CNS. Our doctor who performed the procedures said the marrow came out easily, which is generally a good sign, and the spinal fluid looked clear. Thank God! We’ll have the results on Monday.

We took a trip to Fuddrucker’s (restaurant) today after the procedures as Nicholas has been asking to go there for quite some time now. We had one of his best buddies, Joey Jordan, join us. They played air hockey and a few other arcade games. They were not too interested in the food—too many fun distractions. Nicholas’ big brothers Chris and Matt joined us. Brother Tim got to go to the snow with some family friends so he wasn’t able to join us. Joey came to the house for a few hours for a play date with Nicholas—they fight like brothers, it’s too cute! When someone knocked at the door they both yelled, “don’t answer it”, thinking it was Joey’s parents coming to pick him up.

We are looking forward to a fun filled weekend and a special Easter Sunday. Happy Easter to all! Enjoy!

Note: Nicholas' March 24 pre-school graduation pictures are in the "Days 101-125 and Pre-School Graduation" album under the Links heading below.

"My doctors/nurses album": http://www.kodakgallery.com/I.jsp?c=hzm3iu6.yizhw0u&x=1&y=81zxm2

 


Thursday, March 24, 2005 11:38 PM CST

(Please see new photos "Day 101-125 and Pre-school Graduation" under Links below.)

I can’t believe I’m graduating from pre-school today. Hi everyone, today I graduated from pre-school and had a lot of fun seeing my friends, teachers, and the people in the office.
–Nicholas

Today was a great day for Nicholas. He enjoyed putting on his tie and going to school for his graduation. Our Montessori school is simply incredible. They, like our family, friends, and employers have been everything and more a parent could hope for if they had to face such as devastating experience such as ours now. Nicholas’ teachers, Ms. Shirley & Ms. Jessica, and the school administration arranged a heart-felt graduation just for Nicholas because he is scheduled to be in the hospital during their regular June ceremony.

Nicholas heard songs, cheers, and praise. He received his pre-school diploma along with a memory book that includes photos and personal statements from his classmates, teachers, and school administrators. It was the “red carpet” treatment coupled with an atmosphere full of the joy that kids generate. As we were leaving, the toddler age 2 class was waving to Nicholas and as we drove off Nicholas said, “Bye little kids.”

Our hospital appointments today went smoothly and without any difficulty. However, understandably Nicholas is getting tired of so many tests and different pieces of equipment. And guess what, at times he adapts to them so well that he has fun with them and does not want to stop. For example, during the kidney test, he got so comfortable during the 9-minute test that he wanted to finish watching the movie that was playing. And during the pulmonary test, he wanted to keep breathing deeply and blowing out so he can see the dramatic graphic lines he was creating.

Nicholas blood counts are still good and we had a great evening.

Again, thanks everyone for all that you do directly and in-directly for us.

My doctors/nurses album: http://www.kodakgallery.com/I.jsp?c=hzm3iu6.yizhw0u&x=1&y=81zxm2

 


Wednesday, March 23, 2005 3:26 AM CST

Hello everyone, the past few days have been uneventful medically (just the way we like it). Chris came home from UC Santa Cruz for his spring break so Nicholas has been keeping him occupied showing him all his new moves on his Spider-Man PS2 game. We had a nice trip to the reservoir on Monday to meet with several of Lamont’s work friends. They spent time with Nicholas and brought some great things for the upcoming hospital stay. Thanks everyone! We also visited Nicholas’ preschool classroom and saw all his friends. Although most of them were sleeping, it was nice seeing his classroom, Ms. Shirley, and a few of the older kids that don’t nap. Amanda, one of his classmates, gave him a little homework to work on—thanks Amanda.

Nicholas’ ability to fight bacteria and viruses is strong (blood counts are up) thanks to G-CSF shots we gave him following chemotherapy that reduces his ability to do so. He’s happy that his numbers came up so quickly so he doesn’t have to receive any more shots! Mommy and daddy are also happy about it, as it’s stressful on all of us!

We have a few upcoming doctor appointments at Children’s Hospital in Oakland on Thursday and Friday that are part of the pre-bone marrow transplant preparation. Thursday we go for Pulmonary Function testing and a kidney test. On Friday we have a lumbar puncture and a bone marrow biopsy, to make sure he’s still in remission.

Only 8 days to go until we’re admitted to start the fractionated-radiation (first time radiation will be part of his regimen—it’s an important approach toward curing Nicholas relative to the hypodiploid discovery) and chemotherapy conditioning prior to the bone marrow transplant that’s scheduled for April 7th. Please continue with all your prayers, they certainly do help!

And thanks for all the helpful guestbook messages…we all really enjoy reading them and appreciate the uplift to our spirits that they provide along the way! And it’s great interaction for Nicholas as we read and reflect on your messages.

 


Sunday, March 20, 2005 2:44 AM CST

NOVEMBER 19, 2004 to MARCH 19, 2005

120 days have gone by since the diagnosis. Nicholas has clearly demonstrated that he is the strongest “person” we know. He has sustained his energy, enthusiasm, and joy. And he has more than tolerated the chemotherapy—what an inspiration.

Below is a summary of the first 120 days.

IN HOSPITAL TREATMENT & IMPORTANT NOTES
Induction: 11/22/14 to 12/7/04

Note—11/29/04, In remission as of the eighth day
Note—12/21/04, Considered a “rapid early responder” based on results of bone marrow samples.
Note—12/27/04, DNA Index results and Cytogenetics results reported to us. Along with the original diagnosis of “High Risk” B-Precursor Acute Lymphoblastic Leukemia, now the diagnosis included Hypodiploid and Nicholas was placed as “Very High Risk.” Performing a bone marrow transplant is now considered the best treatment option.

Consolidation Block 1: 12/31/04 to 1/5/05
Consolidation Block 2: 1/20/05 to 1/24/05

Re-Induction Block 1: 2/16/05 to 2/20/05

Note—3/1/05, Informed analysis of 2 potential donors reveal a 6 of 6 match
Note—3/4/05, Informed Nicholas will be admitted into Stanford-Lucile Packard Children's Hospital on 3/31/05 to begin conditioning chemotherapy for the bone marrow transplant, and the bone marrow transplant is scheduled for 4/7/05. We are so grateful that a donor was identified amazingly fast.
Note—3/13/05, First fever since the leukemia diagnosis. Nicholas is indeed a strong “person.”
Note—3/16/05, Informed the donor is actually an 8 of 8 match. This is great!

HOLIDAYS
Thanksgiving: At Children’s Hospital in Oakland
Christmas: At home
New Years Day: At Children’s Hospital in Oakland

BIRTHDAYS
Nicholas 5th birthday on 1/27/05: At home
Dad’s birthday: At Children’s Hospital in Oakland

NICHOLAS’ FAVORITE SAYINGS IN THE HOSPITAL
1) “Dada dada mama, dada dada mama, dada dada mama.”—11/19/04 when the first IV was inserted into Nicholas.

2) “What does it smell like?”—When having to take medicines by mouth.

3) “Boo, did I scare you?”—When going into the operating room, waking up in the operating room, and various times with the nurses and doctors.

4) “What’s your name, what’s your whole name?”—To just about everyone who came into his room. And he remembered their first and last names.

5) “Hi everybody, I’m home!”—12/7/04 out loud while standing in driveway when arriving home for the first time.

6) “Can I tell you one thing first?”—When negotiating for time during administration of medicines.

7) “Thank you God for making me strong to take my shots!”—When occasionally having to take G-CSF shots in alternating arms for several consecutive nights at home.

8) “What are you going to whack next?”—When a doctor was checking his reflexes and then asked Nicholas to roll over.

9) “Mom, tell Jesus thank you for giving medicine so I could go boo-boo.” Then after Sheila prayed, Nicholas asked, “What did He say?” (Nicholas had been constipated from one of the medicines.)

10) “Do you want a piece of me?”—To just about everyone, including mom and dad, when having fun or being a little feisty.

LINKS
The links on the Home Page take you to photo albums. An overview of each album is then provided along with captions below pictures to collectively provide a special view of Nicholas.

 


Saturday, March 19, 2005 10:00 PM CST

HOW IT BEGAN

NOVEMBER 17, 2004:
Nicholas and dad was at a Golden State Warriors basketball game (Nicholas mostly enjoyed their mascot, Thunder, and the acrobatics Thunder and his acrobats performed throughout the game). That night at home Nicholas said his wrist was sore, although there were no physical signs of injury at all.

NOVEMBER 18, 2004:
Nicholas' Montessori school was asked to pay extra attention to his wrist. Still, no physical signs of injury.

NOVEMBER 19, 2004:
Mom scheduled an appointment with our pedetrician to check out Nicholas' wrist. It was late in the day on this Friday, so after examining and not finding any clear reasoning for Nicholas complaint of soreness, our pedetrician directed us to the emergency room at Children's Hospital in Oakland, CA for a series of blood tests.

We decided that we would go to Fenton's Ice Creamery, for a tasty start to our weekend, after the emergency room visit. While the blood lab work was being completed, mom and dad were playing and reading with/to Nicholas. (Nicholas and mom love to read.)

A couple of hours later we were DEVASTATED by the lab results revealing that Nicholas had leukemia. He had 88,000 white blood cells (normal for Nicholas would have been 5-10,000.)

NICHOLAS' RAYS OF SUNSHINE CAME THROUGH EVEN DURING THIS DEVASTATING MOMENT--as mom and dad cling to Nicholas and with every emotion swirling, all attempts of focus gave way to crying for mom and dad tightly holding on--Nicholas reaches to mom, touches her, and says "don't worry about me, I'll be alright." Nicholas was admitted into Children's Hospital in Oakland.


Friday, March 18, 2005 9:13 PM CST

This page is just now being created. Please see the links and hospital information below--and check back for overall information & updates.