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.
Yoram
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5 comments:
As one of the many locals keeping tabs on Toby, I very much appreciate these informative--and eloquent--updates. I want to send strength, hope, company and just a virtual shoulder for anyone to lean their heads against. Please let us all continue to absorb and share in these experiences, as we send good, healing, heartfelt and early birthday wishes to Toby and family.
Nancy W.
Thank you Yoram for your update today, and for all your previous updates. Family, friends and hundreds of caring people are extremely grateful that you are there for Stephen, Mooki, Toby and Yoni. What a blessing to have a Pediatric Oncologist in the family. Also your description of the playtime you shared with Toby and Katie brought back memories of Toby in June. I watched Wallace & Gromit videos with him and became a W&G fan. Every once in a while he would give me a hug. Oh, that felt so good. The next day he received a replica of a subway car, a gift from his friend David, Heather's son and a Beansprout's friend. He played on the carpet for 2 hours with that lone car. He didn't need any other toys because he had his imagination and the designs on the oriental tug which became train tracks and subway stops. I sat silently on the sofa watching he and Mooki travelling all over the city on that colorful rug. Stephen was nearby at work on his computer. It was a perfectly beautiful scene which I often re-create in my mind. Toby will beat this cancer. He is a resilient, spirited and courageous little boy and he is being prayed for by thousands around the world. Love, Grandmother Merci
I would like to second and third the previous posts...with much love and deep appreciation to Toby and all of his family for allowing us to share and support you on this most difficult and painful journey. Thanks for including the moments of playful joy and contentment as well as the challenges--there is much healing in the simple ability to be real, day by day.
I was honored to receive some subway system instruction from Toby last week, and I can imagine that long train ride on the rug. Travel on, Toby and family, and may you receive many more measures of the courage and love that you give every day to the world--by being who you are, where you are.
Regina
It was wonderful to read about Toby out in the world, playing with a friend, eating ices and pizza... May these momentary respites expand to days and push the days spent in the hospital off the calendar altogether.
Much much love,
Lynn & Isaac
Hi Toby, Mooki, Stephen, & Yoni.
Randy here, writing from an attic/recording studio in Lawrence, Kansas. We're doing some overdubs today after finishing the basic tracks for both the kids' record and the regular one. Thanks again, Toby, for being the keeper of my secret demos! I miss y'all and look forward to seeing you in September when I get back to Brooklyn! Sending love, Randy
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