September is Childhood Cancer Awareness Month. That statement might seem waaaaay off topic for the Writers Plot, but it's really on target. Because I moved from "some day maybe I'll be a writer" to "I am a published author" as a result of an event that would shake anybody's life to the core.
My toddler daughter was diagnosed with cancer. Not one of the ones we've all heard about, like leukemia or a brain tumor, but a form that even some of our doctors had never seen before. Today they call it an extragonadal germ cell tumor. Whatever it's called, it comes as a complete shock to parents. Only other people's children get cancer, right? We give a few bucks to the Jimmy Fund, the American Cancer Society, whatever charity comes calling, and we feel like we've done our part. We haven't, but hold that thought.
The statistics are surprising. Over 12,500 children in the US are diagnosed with some form of cancer every year. More kids die of cancer than from all other diseases (asthma, influenza, cystic fibrosis, muscular dystrophy, et al) combined.
On the plus side, childhood cancer in most of its forms is now considered "curable" (a word that parents, not wanting to tempt fate, don't use). Overall, 75% of the children live for five or more years past diagnosis, and with some types, the survival rate is over 90%. Our hematologist says we'll know that the kids are really cured when they die at the age of 75 of something else. (Actually, he said the age of 72, but I can be optimistic, can't I?)
I'm a librarian by training, and my coping mechanism is to read everything I can about whatever I'm facing. However, there was no book about extragonadal germ cell tumor, or even leukemia or brain tumors, for regular parents and teachers to read. So I wrote one. And I got it published. The book was Children With Cancer: A Reference Guide for Parents (Oxford University Press, 1986). When I wrote a related article for the local weekly newspaper, the editor asked if I would like to freelance with them. After 25 years (and probably as many editors), I'm still writing occasional articles for the Littleton Independent. A collection of my humor columns, which appeared weekly for over 22 years, formed the basis of my most recent book, Someday We'll Laugh About This.
We didn't laugh about childhood cancer, but there was a surprising amount of laughter in the clinic and the hospital rooms. Because no matter how sick they were, they were still kids. And kids laugh. We told bald jokes. We teased the nurses that brownies and coffee are not a balanced diet. We gave the doctors silly neckties.
The statistics on childhood cancer are better, actually, than those for lung cancer and the leukemias that adults get. The War on Cancer brought many new drugs into the arsenal, but many of them aren't tested for pediatric use. Sometimes it seems like it's all bottom line: thousands of adults with a form of lung cancer are a big market; a handful of kids with something rare are not. That's where the Conquer Childhood Cancer Act (H1553, S911) comes in, legislating funds for research into pediatric malignancies. For more information on the Act, go to www.curesearch.com . The Candlelighters Childhood Cancer Foundation has another excellent website: www.candlelighters.org
When my daughter was diagnosed, more children died than survived. Those who did live have faced often severe late effects, so researchers are trying to find ways to lessen the incidence of heart damage and other aftereffects of the radiation and chemotherapy drugs. My daughter's kidneys failed, and after too many years of dialysis, she received a transplant.
I'm still writing about cancer; a new edition of Children with Cancer will be finished one of these years. Luckily, I also get to write about more upbeat topics. I have no idea if I would ever have published a word if our lives had moved in more conventional patterns.
My daughter is 31 now, a delightful young woman. She doesn't want to think about cancer, and I can't blame her. But still.
September is Childhood Cancer Awareness Month. Be aware.