I arrived to Mooki, Stephen, Yoni, & Toby's in Brooklyn yesterday just as Toby had fallen asleep for his afternoon nap. Toby had a good day yesterday. In the morning he rode the subway to the firestation where he checked out the fire engine & inspected the gear each fireman wears as soon as Toby woke up he promptly informed that each suit weighs 70 pounds). Toby then had Italian ice at Smiling Pizza & for lunch he had rice & beans at Uncle Mo's. In the evening we went to Carroll Park. On the way home we stopped off at World of Pizza where Toby watched his dinner, a half cheese, half "salad" pizza (mozarella, tomatoes, basil) being prepared. With pizza & Toby's backpack of i.v. fluids in-tow we made our way back home where Toby had a playdate with Katie, one of his friends from Beansprouts.
Toby & Katie were great together. Toby hung out on the couch while Katie swarmed around him & adeptly avoided getting entangled in his i.v. tubing. While Mooki, Stephen, & Laura (Katie's mom) had dinner, I played with Toby & Katie. For my "efforts" I was well-rewarded; for nothing more than being a playmate, Toby rested his head on my lap several times & I got at least 5 hugs!
Today Toby was back at Sloan for blood & platelet transfusions. He's now 9 days out from cycle 5 of chemo. Yesterday's energetic & playful Toby was a only a fleeting memory, replaced by the grim reality that's become all too commonplace.
After waiting many hours, Toby took a nap while the blood trickled into his tubies & Mooki, Stephen, & I met with Toby's team to discuss the next step.
Once Toby recovers from this most recent cycle, he'll have a complete restaging workup. In about 2 weeks he'll have bone marrow aspirates & biopsies, CT & MIBG scans, & blood & urine tests to evaluate the neuroblastoma's response to chemo.
If there is no evidence of disease, then 3F8 antibody treatment is next. However, because the marrows done just before this cycle were still positive & the lymph nodes in Toby's neck were relatively unchanged after the first 3 cycles, the likelihood is that Toby will still have some disease present even now, which would categorize him as having refractory disease. If this is the case then Toby will have another surgery towards the end of the month, this time to remove the diseased lymph nodes in his neck, which will then be followed by a 6th cycle of chemo with topotecan & cyclophosphamide & vincristine.
Starting 3F8 is best when there is no or as little disease as possible, but according to today's talk with Dr. Kushner, even if Toby's not in a complete remission he plans to start with 3F8 after the 6th round of chemo.
That's all for now. Toby turns 4 on August 22nd. I hope that this year will be a better one. One with less pain, more time spent at home & with friends, & clean, disease-free scans & marrows. Happy early birthday Toby.
Ed Clark, Christmas Guest
9 months ago