Respite

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