It’s September and that can only mean one thing.
No, I don’t mean that the kids are back in school or the oppressive summer humidity has finally broken or even that the season of pumpkin spice is about to lead us into a long, cold winter as predicted by the Farmer’s Almanac.
All of those things are probably true and some of them are more pleasant than others but September’s primary claim to fame is that it’s Childhood Cancer Awareness Month.
Now some of us are far more aware of childhood cancer than we ever wanted to be and I am one of those people. When my granddaughter was a year-and-a-half old, she was diagnosed with pilomyxoid astrocytoma, better known as a brain tumor.
From the time of her regularly scheduled physical where there was some concern that she wasn’t walking and talking as well as she should to a few days later when we were sitting in the waiting room of Brenner’s Children’s Hospital while a neurosurgeon removed a tumor from her brain that took up half of the space in her skull, I, along with the rest of her family, became all too well aware of childhood cancer. And in the almost three years since, we have become even more aware.
One of the things we have learned is that brain tumors are the most common “solid” cancers in children, second only to leukemia and blood cancers. We also learned that radiation was the best way to fight the tumor, but radiation is too damaging to tiny brains.
This led to another unpleasant discovery. When you’re fighting a brain tumor, you have to survive not only the cancer but the cure. No medical professional ever actually said that but after a while, one realizes it to be true. Not to put too fine a point on it, it does no good to kill the tumor if you scramble the brain in the process. This point applies to adults as well but with a tiny, developing brain, it’s an even trickier process.
The surgeon and oncologists were surprisingly frank about what they didn’t know. They did not, by any means, pretend to be all-knowing. When we learned that the NCI (National Cancer Institute) spends 96 percent of its budget on adult cancers and only 4 percent on pediatric cancers, we began to understand why their knowledge was so limited.
We became aware of a few other things, as well.
The FDA has initially approved only two drugs for any childhood cancer in the last 20 years. Half of all chemotherapies used for children’s cancers are more than 25 years old.
Pharmaceutical companies fund 60 percent of research and development for adult cancer drugs and close to zero for childhood cancers. Cynical folks say that’s because the adult cancer drugs are more profitable. Perhaps they are correct.
And although I don’t think it’s fair to pit one horrible disease against another, I have to point out that NCI’s funding for pediatric clinical trials is only $26.4 million while funding for breast cancer is $584 million and AIDS research is $254 million.
Those are hard numbers to swallow when you are told your granddaughter has a disease that has a one-in-three chance of taking her life.
Those numbers become very bitter indeed when after almost two years of treatment, her doctors say that she is going to be the one out of three that doesn’t make it.
Treatment isn’t working and is suspended and hospice comes in for the remaining weeks or months of her life. That’s what they said. “It’s a matter of weeks or months.”
What those doctors neglected to do when they gave up on Tatyana was to inform her of her prognosis. Because she is having none of it.
Tatyana is an extraordinary little girl who has endured horrors that most of us adults can only imagine. She has had her entire brain shoved over to one side of her head while a tumor filled her skull and through that, she barely cried. She must have had a headache that would have sent an adult into a mewling, fetal ball of agony and she barely cried.
After they cut open her skull and scooped that monster tumor out, she was jumping up and down on her hospital bed within a few hours of the anesthetic wearing off. Perhaps, for the first time in her life, she didn’t have an agonizing headache. Perhaps, and this is hard to even consider, for the first time in her life, she was free of pain.
And she’s been a good sport ever since. Through chemo. And poking. And prodding. And all of the assorted indignities thrown at her. She always smiles. It’s a crooked, sly little smile since she has to fight with the tumor for control of the left side of her face but when that smile is directed at you, the sun shines on your soul.
And despite what she goes through, she is almost never without that smile.
The 22nd of next month will be one year since her death sentence was declared and she is, for all practical purposes, no worse off than she was back then. She, as Stephen Sondheim would say, is still here.
So, during September when you see gold ribbons and gold bunting on social media profiles advocating for awareness of childhood cancer, think of Tatyana and the other 36 children and adolescents who are diagnosed with cancer every single day.
Every. Single. Day.
Think of all of them. Remember that one out of 330 Americans will develop cancer before they are 20. And think of how little regard is placed on their lives by the people who allocate the funds for cancer research.
I hope with all my heart that you are never as aware of childhood cancer as I am. I hope it never touches you personally. And if it does not, you are lucky, because it is not rare.
But I would like for you to be a little bit aware. Maybe aware enough to be angry about the lack of funding.
Maybe aware enough to go to a candlelight vigil at Brenner’s Children’s Hospital in Winston-Salem on Sept. 25 at 7:30 p.m. for all the warriors and angels who have fought and are fighting this horrible disease.
Many prayers, good wishes and positive energy have been directed toward a cure for Tatyana. We desperately wish for a miracle. And almost a year after her doctors gave up on her, she’s still a warrior and not yet an angel.
Maybe that’s our miracle.
She’s still here.
Reach Bill Colvard at 336-415-4699 or on Twitter @BillColvard.