Tuesday, August 7, 2007

The Numbers Game

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

13 comments:

Anonymous said...

Dear Mooki & Steve, Looks like Toby is following in Yoni's footsteps as a math whiz! Let's stick with the kids' math and not let ourselves get too caught up in predicting future odds! I had forgotten how bad my odds were until I came across an old e-mail, while transferring messages from dial-up to DSL. It didn't make me feel any better- in fact I was feeling pretty good until I read it. What works for me may not work for you, but we can only deal with one day at a time. So let's live each day to the fullest, savoring our loving relationships, Toby's original quips and the funny incidents that make us laugh and lighten our burden of sorrow. And the number 100, of blood donors,is something to celebrate! God works thru people- those are the only hands He has! All our love, Aunt Blanche & Uncle John

Anonymous said...

Mooki-
Today we drove to Brooklyn and moved into the apartment that we will live in during my sabbatical from Kenyon. I am very excited and happy to be here. One reason I am looking forward to this year is that we will be around to see you, Yoni Stephen and Toby and help in any way we can. Phil and I will donate blood and platelets soon. I can't wait to see y'all.
much much love.
Balinda

LindaSueBuhl said...

Keep on counting Toby - and your beautiful family with all their varied gifts - we continue to pray for a healing in Toby's body. My mother in law (who is almost 89) counts everything also. Maybe it does skip generations! Please know that odds are just that - averages obviously Toby is anything but average!

Anonymous said...

Dear Mooki, how wonderful it is that you are able to give Toby such fun between treatments! We admire you so much.
Yesterday I had lunch with your parents, of course Yochi made a 3-course lunch, I always tease her that she works too much in the kitchen but it is very nice to be at the receiving end. While she was doing the last preparations I looked at a photo album called 'Family and Friends' which included photos of your wedding.
We send much love,
Thilde and Family

Anonymous said...

Sending love and heartfelt strength your way. Remember that in the game of odds and percentages there is hope of beating this.

Anonymous said...

Mooks and Stephen,
It's painful to read "The Numbers Game," but the poetry of your pain and anger and love are a blessing to all of us. I hope you receive word of Merci's Toby numbers. She clicks and counts and murmurs his name through her day. These are important numbers, too. And the rest of us? We count out our heartbeats endlessly, too, for you and for Toby and for Yoni. These are infinite numbers to count, heartbeats every minute of every day, yesterday, today, tomorrow, and ongoing, beating out love and support in timed rhythm among friends, family and strangers who are holding you close. We love you. Dave and Bets

Tracy & Bruce said...

Shhh Momma,
Do you hear
The prayers for me?
They love me.
I hear them.
So many wish me
To Be.
Here.
I try, my best.
I will show them
And you too.
I don’t know where.
You can’t chose,
Nor can I.
But I will BE
and that will be Me.

So sleep Momma
I am.

Anonymous said...

Thinking of you all, and hoping Toby had an o.k. day today.

Remember, people beat cancer EVERY DAY.

Sending love, prayers.....

JoAnn said...

Mooki -- Even if the percentage is only 1 in 100, all you need is for Toby to be the 1.
And I stll have the Dot and the Line. Stuart bought it for me so I could, who can't add, could get a grasp on his love of numbers.
40 years later, I still can't add.
But I understand luck. And prayer. And their power.
Love from New Jersey

Dana Gerendasi said...

Miracles DO happen...ALL THE TIME. I am a wittness.

About 20 years ago, my grandmother was diagnosed with ovarian cancer. When they found it, it was the size of a baby in utero in the sixth month. It was also a very aggressive cancer. She went through chemo and radiation, but they discovered it spread to her kidneys. She was given a 30% survival rate. She had surgery again. Two years later, it showed up in her liver. Once again more surgery. The numbers game appeared again because it had spread to 2 organs. I am happy to say 20 years later, my grandmother is 80 years old and cancer free. They were able to clean out the spreads and there has been no new sighting (thank god). She is healthy living in commack at an assited living place.

Miracles do happen.....You are always in my thoughts and I pray every night for you all for health and continued strength. May you only know peace, love and happeness........

With all my love,
Dana, Leo, Saul and Josh

gisele said...

I'm going to order the dot and the line on Amazon.
And I agree with everyone else, the numbers do not tell the whole story. They never do.
In the past year and a half, my dad has undergone a seven hour operation to remove gallbladder cancer (less than 2% two year survival rate, but the brilliant surgeons at Sloan Kettering said they took it all out!), a quadruple bypass operation, and a month long stay at Cornell following a brain injury. Last Sunday, he walked me down the aisle. Please don't ever stop believing, and try not to pay too much attention to the numbers. They are just averages, and there are so many other factors that matter, including your strength, love and support for your child.
I think about you all the time, and continue to pray for Toby's recovery.
-gisele

Anonymous said...

The numbers game?

How many hearts can one boy hold?
How much faith in a story can be told?
This child has touched so many!
He is a walking breathing living, loving miracle.
Your story is out in the universe
making so many of us weep, love, pray and hold you near.
Not even poets can measure what the heart can hold.
and
cancer could NEVER take that away.
You and yours are too strong, too lovely, too beautiful.

Blessings and peace,
Manya

Anonymous said...

More Numbers!
In a previous comment Bets and Dave
said, "Merci clicks and counts and murmurs Toby's name through her day". I'm knitting a sweater for Toby to wear to the playground this Fall & Winter. These are my numbers and each stitch becomes a prayer; Using yarn from Great Grandmother's Country Store and #5 needles, cast on 65 stitches. It takes 6 rows for every inch. Therefore 65 x 6 = 390 stiches x 17.5 inches to the neck = 6,825 stitches for the back of the sweater. Repeat with slight adjustments for the front and now the number becomes 6,825 x 2 = 13,650! And on to the sleeves! My mantra is; Toby, Toby, Toby and I see him at play, at his little dinner table, having fun at sleep-away camp, performing magic tricks for the vacationers on Block Island just like big brother Yoni, diligently doing his math homework and finally graduating with honors. Have fun counting Toby. We're counting along with you.
Love, Grandfather & Grandmother