Monday, August 13, 2007


Toby had a really good week. Our bout with neutropenia was mercifully short this round, and his counts bounced back after just a few days. He did receive 3 platelets transfusions (thank you, donors!), but as of Friday, his platelets were in the triple digits, at 107 (normal range is 160-400). His hemoglobin held at 8.7 (normal is 13-17) and his white cell and absolute neutrophil counts were within normal range, holding steady even with no G-shot.

But enough with the medical, the bigger news is that Toby had a few days to be a normal kid, and I can’t tell you how much we relished each minute. We discovered the elevators at Rockefeller Center, and rode 70 floors up to a perfect panorama of the city. Of course Toby was more interested in the view inside the elevators. Another morning was spent at the botanical garden, where we found a magical bronze birdbath, with running water and inscriptions perfect for pencil rubbings. The water lilies were practically vibrating with color and sunlight, and we managed to coax Toby onto the gravel paths of the Japanese garden (he hates sand or pebbles inside his sandals) where the Shinto shrine became the backdrop for a story about a hermit wizard who mixes potions by the light of the moon. Toby has been jonesing for a return visit to the wizard ever since. His ailment? “I yawn like 25 times before I go to sleep, mommy. Maybe the wizard can make me a potion to stop yawning.”

Amazing Aileen came over on Thursday and spent two hours with Toby at the playground, while Stephen and I took measurements at our new place in Windsor Terrace. It was the first time in 4 months that Toby was able to separate from us and spend a chunk of time with another adult.

Perhaps best of all, was Toby’s early birthday party on Saturday. We decorated the house, had over a few friends from Beansprouts and thrilled to see Toby interacting, laughing, enjoying himself.

I’m posting a few photos so you can see for yourselves.

This is a very big week for us. Starting tomorrow, Toby’s entire body will be scanned using every available technology, to give his doctors a better sense of how chemotherapy has impacted the disease. Each day will entail anesthesia, drinking of contrast, injections and other fun stuff. On Tuesday we start with a bone scan. Wednesday is a CT, Thursday will be an MIBG injection, echocardiogram and audiogram. Friday is the MIBG scan and more bone marrows.

Once the scans have been interpreted we’ll have a better sense of what comes next: either surgery followed by more chemo or the unimaginable and wished-for next phase of treatment, 3f8 antibodies. We’ll see.

It has been so long since I thanked all of you. If you haven’t yet, I urge you to read the comments below each post. They are truly remarkable and I can’t stress enough how much strength we gain from reading your extraordinary words. In addition to the writers, there are whole bunches of people who provide us with a steady stream of delicious meals, wonderful care packages for Toby (some left at our door during the night, so that he has a little surprise in the morning!), donations of blood and platelets, financial help, visits to interact with Toby and us, emails, and a constant stream of love. You are incredible friends and we are blessed to have you in our lives.

Love, mooki and Stephen


Anonymous said...

Happy Birthday Toby! It brought a huge smile to my face to see you smiling with your birthday cake and having fun with your family. You are a super kid! Enjoy your birthday.

Anonymous said...

Thanks for posting those photos of Toby - it's so good to see him! I am so glad that he had some good fun with his friends. Will be thinking of you and praying for good news later in the week. HAPPY BIRTHDAY, TOBY!!!

Anonymous said...

Happy Birthday handsome Toby!!!!

Anonymous said...

Wishing your family a day full of hope, and love.
You seem to have the gift of finding beauty in all things. I wish you a day filled with the beauty of your life. May you have the eyes to behold it.

Anonymous said...

What an awesome train cake! Happy birthday Toby!

Anonymous said...

Happy Birthday Toby! Hope your big day was as special as you!

Anonymous said...

Happy Birthday Toby! It looks like you had tons of fun!

Anonymous said...

I don't know about the rest of you guys, but the minute i saw the picture of Toby and the cake, i thought to myself "I hope he flung himself, head, mouth, and tounge first, into that delicious pile of frosting. He SO deserves it..." If he was very well-behaved and resisted sticking any extremities into the train's belly, (from what i gather of his personality, i'm sure he controlled himself and/or asked permission to indulge!) than i hope he had an xxx-large piece. Keep it up, Toby. You are a CHAMP.
Love, a friend in Park Slope

LindaSueBuhl said...

Happy Birthday Toby - you are a great numbers counting, detail observing, people attracting young man. Your family is a blessing to so many people - but mostly - they love you like crazy. Wish you could play with some of my goats - you'd like them and we'd have to wear boots not sandals - all kinds of things get in your shoes if you have sandals on around goats. Bye for now - praying for you to have even more fun very soon.

sarah jo said...

I was glad to see pictures of toby at his birthday. The kids say hello and happy birthday. love you sarah jo

Anonymous said...

Happy, happy birthday, Toby! I hope every wish comes true for you and your family. You are an amazing, miraculous little boy.

Amy B.

Meghana said...

I'm a Windsor Terrace neighbor. If you need any help with anything, I can walk over and help. I don't know you except through this blog, and I don't have a car, but i can still help if need be. email me at megsnayak @
I always pray for you all---your family has shown more about life, grace, forgiveness, God, humanity, and hope than most "healthy" people. We will trace many miracles that Toby creates in his future to this difficult time, when his divine nature was so apparent for so many to see and be touched by.
I know he has touched my life, and I try to be a better person because of him.
God bless and may your miracle come soon!

Anonymous said...

I admire your ability to give Toby such wonderful "everyday" experiences in the midst of all he is going through. To see him watching Stephen do a pencil rubbing, and looking at his birthday cake with a glimmer in his eye made me smile. You are an amazing family! Happy birthday Toby!

Anonymous said...

Meghana, What a beautiful message from a prospective new neighbor. We're so far away and happy to know that you are nearby. Your observations, gleaned through Toby's Blog, are so right!! Gob Bless You,