I bought Toby 5 scratch-n-match bingo lottery tickets a few weeks ago. The guy behind me in line thought I was a spender and made some jokes about regulation and my assumed addiction. I tried to explain that this purchase was an innocent act, meant to payout 10 minutes of entertainment for my hospital-bound son. It was all about the scratching and the simple activity of uncovering numbers, revealing something hidden beneath the surface. A monetary prize was completely beside the point. It was about doing, not winning.
The day we played with the lottery tickets we also rode the elevator to every floor in the hospital, keeping track of the numbers as we rose and fell. Toby likes the 6th floor, where the doors open onto a honey colored wooden wall decorated with circular artwork. The 2nd, 5th and 14th floors are also current favorites, but any number will do. Best of all is when the elevator is jam-packed with people who say, “could you push 10, please?” or “I need to get to 5.”
We count everything: floors in the hospital, steps to the IV room, milliliters in the syringes, systolic and diastolic readings on the blood pressure machine, rates of infusion on the chemo pumps. Numbers order Toby’s world, make the unfamiliar less frightening, give him a small measure of control.
I’ve never been a huge fan of numbers. This, coming from the daughter of an iconoclastic and brilliant historian of mathematics. I’m sure that others, much smarter than I, have found the connections between the beauty of narrative and the purity of mathematics. Maybe in the final accounting, there’s really no difference between the two disciplines. But I’ve always gotten lost in the world of math… too much reason and evidence and logic. Not enough passion or messiness or laughter.
One notable exception is The Dot and the Line, an illustrated love story between a sensible straight line and a voluptuous, perfect-from-every-angle dot. My father bought this wonderful little book for my mother, back in the late 60s. Its subtitle is, “A romance in lower mathematics,” and it is here that math starts to make beautiful sense to me.
Yoni is a math wiz who rarely uses formulas to help him with his work. Instead, he figures out problems in his own uniquely mind-bending way, and actually takes pleasure in difficulty. And Toby, chanter of numerals and lover of zero, proudly declares to my father upon emerging from the bathroom, “Saba, my poop looks like an octagon.” At the ripe old age of 2½. So I guess the love of numbers skipped a generation. Or something.
Until last week, with the most optimistic general numbers, Toby had a 50 percent chance of surviving this disease for 5 years. Imagine two children, standing next to each other. And then imagine that one of them lives and one dies. Those were Toby’s odds.
After last week’s devastating news, our numbers have shifted. With positive bone marrows after 4 cycles of chemo, chances of survival drop to about 20-30%.
Here are some other numbers, borrowed from an NB parent, that keep me awake at night:
Every 16 hours a child with neuroblastoma dies.
Nearly 70% of those children first diagnosed, have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2 there is less than a 30% chance of survival.
Childhood cancer is the leading cause of death by disease in the US and it kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.
There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
Like I said, I’m not a numbers girl, but I can’t find the words to fill in the void that surrounds us at any given moment.
This is a numbers game I desperately want to win. I’ll do what needs to be done: watch as my child sets his jaw in pain, fight the beast that’s feeding off his body, offer him up to yet another surgery if necessary, be strong for him, play with him as if nothing’s happening, live our lives as best we can, act as if cancer is just an inconvenience, focus on the positive when I’m able, find hope when possible, say a million thank yous to the incredible people who are battling with us and giving us food, love, donations, care packages and blood. Unlike bingo, this game isn’t about the experience of doing, it’s about beating the odds.
We continue to draw so much strength from you. Thank you for being with us.
Love, mooki and stephen
Ed Clark, Christmas Guest
9 months ago