One of Toby’s favorite projects is making concoctions. Sometimes this means squeezing tiny vials of food coloring into glasses of water, watching as the dyes swirl into each other. Most days though, we make semi-edible, made-up recipes for our invisible bug friends. These are the ultimate free-form meals, experiments really, determined not by cuisine or season, but simply by ingredients foraged and found. That sad, wizened mushroom with a bit of sheen that’s been rolling around the crisper drawer for weeks? Perfection. The coffee grounds from yesterday’s breakfast? Yes. How about a few shakes of cinnamon, melted butter and a can of diet coke? Mmmm. Cornstarch and its properties are much admired, so we add a few scoops "to make it creamy." Water and oil are measured, then dispensed, as are sugar, chocolate syrup, beans and ketchup. We never know what we’re going to end up with, but we always spread it into a loafpan and bake at 350 for about 35 minutes. And no matter the taste or color or smell, Toby’s imaginary bugs are always happy with the results. Our experiments are masterpieces.
This week we experiment on Toby.
Since February, the team at MSK has treated Toby with what is essentially a relapse protocol: 9 cycles of irinotecan/temozolomide, punctuated by two doses of rituxan and cyclophosphamide, in an effort to lower his HAMA (human anti-mouse antibody) level. Scans have thankfully been clean. Kindergarten began, as visits to the hospital dwindled. Toby started drawing charts and challenging us to races through the house. He built an elevator out of boxes and string, and wrote letters to his friends on an old banged-up typewriter. There have been lots and lots of belly laughs, a mohawk haircut and a G-train costume for Halloween.
But recently our doctors decided that further chemotherapy might pose a substantial risk of secondary leukemia. Since then, Toby has been taking accutane as a stopgap measure, waiting until he can receive more 3F8 antibodies.
Now Stephen and I are not medical professionals, but we know that without transplant and with only 2 cycles of 3F8 under his belt, the chances of accutane being effective are slim. Just last month we had a horrible scare with sudden onset of severe neck pain, just like at diagnosis.
Refractory Neuroblastoma is famously difficult to treat. There is no single accepted course of treatment and parents are generally expected to participate in determining the best therapy for their child. It’s an excruciating process and Will’s Dad has written about it much more eloquently than me.
So after much research and many questions, tomorrow we drive to the Children’s Hospital of Philadelphia where Toby will start a clinical trial with an investigational drug called
ABT-751. We don’t know if it will work, but we hope it can keep the cancer away and prevent tumor growth until further antibody
therapy becomes possible.
We hope and pray that the results will be as good as our kitchen concoctions.
Ed Clark, Christmas Guest
9 months ago