With all good intentions, my parents had me tested when i was 5 years old. I went into a room with a two-way mirror, an old man, and a clay playset of a village in the mountains.
The man's white hair scared me and I cried for my parents. I couldn't see them through the magic window, only a reflection of myself, pinched and small with worry. The man smiled kindly, coaxing me to form puzzles, count blocks and put pictures in order. Then he brought out the playset. There were mountains sloping into the sea, small square houses and a river. He asked me, "How do you get from the sea to the mountains? What's the shortest way back home?" And I was momentarily distracted, losing myself in landscape.
These were the colors: indigo water, red mountains, blue grass. For some reason they burned themselves into my memory,
reappearing at the edges of dreams many years later. But I never saw real mountains like that, or grapey water.
Until I travelled to Eilat. There was something strange about the sea cutting a gash into moon-like desert. It took 3 days to locate the landscape, but when I dove into the Gulf of Aqaba, the sun slanted down on the red mountains, the water tasted like grapes and the playset came alive.
The colors were real after all. and I found a way to change what had scared me into something that delighted me. After 13 years I reclaimed the old memory and created a new one.
This is what I want for Toby. The time to grow beyond this moment, the chance to reimagine and reinvent his life. To find what he's looking for. Or even better, to create it.
Last week he came home from school with the plans and drawings for a REMOTE CONTROL TRAFFIC AVOIDER. He drew our house with a hatch in the roof. Alongside was a sketch for a backpack with propellor and control panel. The buttons and dials were labelled 1mile to 12miles; the touchscreen had a keyboard. He excitedly explained that each of us would have a backpack and we could enter a destination like "school," where i would drop him off, before punching in "work." The backpack
would remember where each place was located, so that we would never be late.
Or his plan for a PARTY TRAIN. One car has donuts and hot chocolate. Another car has a lending library of dvds. The entire train is computerized, and most importantly there's groovy music throughout.
And then yesterday, he pulled out some poems from his folder and said, "Mommy, this poem is for you. It is beautiful." He stood on the couch and read:
You love the roses -- so do I. I wish
The sky would rain down roses, as they rain
From off the shaken bush. Why will it not?
Then all the valley would be pink and white
And soft to tread on. They would fall as light
As feathers, smelling sweet; and it would be
Like sleeping and like waking, all at once!
And then he said, "But this is my favorite. It is so funny:"
This is just to say
I have eaten
that were in
you were probably
they were delicious
and so cold
--William Carlos Williams
Oh, child of my heart! How did you know it was your mother's favorite too?
Things are going really well for Toby. He is playing soccer, riding his new bike, grooving to the music. In-between he has finished his 4th cycle of ABT-751, with minimal side effects. He has once-weekly visits to the hospital for blood counts and follow-up, with scans every 3 months. The day-to-day almost-ordinariness of our lives is a revelation and a joy. But we know that it can change in a moment. So many of our friends have recently relapsed; it happens every day and we watch helplessly as formerly vibrant children wither into frailty and despair. We worry.
Unfortunately, neuroblastoma doesn't go away, as so clearly spelled out by Will's Dad:
Neuroblastoma is the most common cancer in INFANTS. The average age is less than 3 years old at diagnosis. Five years after being diagnosed nearly half of these kids are dead. HALF.
Kids with high risk disease have to undergo the most intense chemo available and even after radiation, chemo, surgery, stem cell rescue, and immunotherapy, about 30% survive for 5 years. If neuroblastoma comes back (relapse) or stops responding to therapy (refractory, like Toby), it is usually viewed as a terminal illness.
Most children with neuroblastoma will be DEAD long before any government funding will be secured and utilized to create treatment options. Money for a cure is needed today to continue giving not just HOPE but real clinical options to save our kids from dying.
The five year survival for all kids with neuroblastoma is about 55%. This is when you include high risk kids and even the infants with tumors that self resolve and others who just have to have a tumor removed with no chemo.
What does that look like?
Let's say an average kindergarten class has 24 kids. Now assume that they are all diagnosed with neuroblastoma on the first day of school.
Five years later, when they are about to start 5th grade how many kids in that class would even be alive?
13 alive (13.2 to be exact)
Now, lets assume that instead of those 24 kids being diagnosed with NB on the first day lets pretend that they all are diagnosed as relapsed/refractory neuroblastoma (like Toby) on the first day of school.
About how many kids would graduate high school?
1 student alive....maybe.
23 kids dead
Less than 5% long term survival of relapsed NB.
For that 1 student to even make it he/she would have had to undergo the most intense chemotherapy treatment imaginable. He/she would (most likely) be sterile, severely hearing impaired, bearing multiple scars from multiple surgeries, still on some form of therapy, receiving special services, and very UNLIKELY to live long enough to even make it to high school. If NB did not come back, the risk of a secondary cancer - FROM THE TREATMENT - would be high due to radiation and certain chemotherapy agents.
How is this acceptable? Where is the outrage? The action?
It is 2009 and we live in the greatest nation in the history of planet Earth and yet this disease that accounts for 7% of pediatric cancer cases ALSO accounts for 15% of pediatric cancer deaths???
It is the most common cancer in infants....in INFANTS...yet nothing has been done about survival. It would be pathetic if it were not so tragic.
I don't even know if a word exists to properly describe this absurd reality.
And now, as my son strives to be the 1 kid to survive treatment out of his relapsed NB classmates the one thing that stands in our way is, of all things, money.
A week from today, on Saturday, May 9, we'll be walking in Central Park to raise funds for neuroblastoma research and treatment at Memorial Sloan-Kettering. If you are in the NY area and can join us on Toby's Team we would be thrilled and grateful. If you can add some money to the pot, well that would be amazing. Please visit www.walkforkidswithcancer.org to learn more or email Reva at walkwithtoby (at) gmail.com. And please consider making a donation to Band of Parents or MagicWater or CNCF or Solving Kids Cancer, organizations with a common cause to help save children's lives.
Mooki + Stephen + Yoni + Toby
Ed Clark, Christmas Guest
9 months ago