Monday, November 24, 2008


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.


Just Me said...

Hoping and praying that the CHOP treatments are successful. I hope all of you are able to enjoy a blessed and happy Thanksgiving.

Thank you for the update.

My mom used to make wild concoctions of food for the birds in winter. A seed mix, finely diced apples and grapes, raisins or currants, and whatever else was around that looked good was spread on the picnic table in the back yard, and the birds would feast all day.

Carolyn Wing said...

I am sure the bugs are loving the meals!!!! Lets hope the NB hates the new drug and stays away. Hugs and prayers. Carolyn Wing grandma to Laura Stage IV neuroblastoma page name LauraVDB

Anonymous said...

I'm keeping my fingers crossed.
And toes.

Anonymous said...

Dear Family, May God be with you on this journey. Please tell Toby about my two squirrels and the concoctions which I put on the kitchen windowsill for them every day. They love saltine crackers lathered with peanut butter and topped with cranberries, raisins, almonds and birdseed. If the treats are not there by 7:30 am they will stand on their hind legs and peer into the window looking for me! I'm sure they would prefer your concoctions, Toby. The next time you visit me I want you to make their treats.
God Speed, Mom Pannone

Vickie said...

Thank you for letting us know where Toby, the experimenter, stands. Good luck with ABT (I hope it goes as smooth as silk--Erin loves using Silk soy milk in her concoctions for the creaminess).

Your writing makes even the grim circumstances of refractory NB sound beautiful. Thank you.

Anonymous said...

Thanks for updating all of us sitting here on the edge of our seats in readerville hoping and praying and wishing and dreaming that miraculous cures appear speedily.

Anonymous said...

Yes--all good wishes from Readerville to Philadelphia. Thinking of everyone this Thanksgiving,

Nancy W.

Anonymous said...

I hope an pray that the ABT-751 helps Toby he is such a sweet boy.

anna said...

Thank you for the update! We are -- as always -- thinking of you and sending good thoughts your way. (Tell Toby to try swirling the food coloring in light corn syrup.)
Anna, Greg, Grace and Nina

Anonymous said...

We think of all of you every day. On this day of thanksgiving, we are grateful for every day of respite you have received to enjoy good days, create exotic bug concoctions, ride French trains and build NY elevators. Toby, you might consider constructing an enticing bird feed dispenser using suet (!) for the poor Brooklyn birds who will be so hungry this winter. With lots of seeds and raisins and other fruit stuck in the suet, your bird friends will eat it, and become fat and happy. Plus, you can fashion it to look any way you like, and hang it in the back yard to amuse you while you watch the birds feast! Hugs and lots of love to each of you. Betsy and David

Anonymous said...

It's good to hear news even if it's not the news everyone is hoping for. So sorry Toby has to travel now for treatments.

I used to make similar concoctions on the floor of my grandmother's kitchen in her pots. Sweet memories!
Hugs to you all.

Anonymous said...

I already knew that Toby was a beautiful wonderful kid-- now even more amazed and awed by him and all of you. Crying now for all you've been through. Wish I could help share the weight of your path. Will definitely be on the walk.