September is… For years now, I have written blogs and op-eds beginning with those words and what follows is usually something like this. September is when most children are settling into a new school year, but for some children, those 16,000 who are diagnosed each year with childhood cancer, September is different. They may or may not attend school at all instead they focus on beating back the dinosaur attacking them. They may be in hospital being poisoned by drugs to kill the cancer cells which had no right invading their bodies, weakening their immune systems before the chemo either saves them or just stops working. And for years, not much in the way of treatment has changed (though there are promising signs that immunotherapy for certain cancers may soon be central to new protocols).
And September is something else. It is National Childhood Cancer Awareness Month when families devastated by these complex diseases and their champions remind America that the odds against our kids are not good enough. About 10,000 children under the age of 15 will be diagnosed this year with cancer. And 1 in 5 will die. Two-thirds of survivors will also endure chronic health conditions from the toxic side effects of cancer treatment, including secondary cancers and other life-threatening illnesses including PTSD and other emotional traumas.
Raising awareness means highlighting the fact that a measly few million dollars are allocated in federal research funds each year–not even the equivalent of a weekend box office take for a Hollywood movie. How could we ever believe it’s enough to cure cancer or simply save children’s lives?
Often, we only think about the treatments in terms of blood counts. But awareness also means what happens in the lives of those children who fight cancer and survive, their forever weakened bodies, the scars on both body and mind. Sometimes it takes a good book to remind us. A few years ago, John Green’s A Fault in Our Stars was made into a major motion picture. While flawed in its telling, Fault may make folks think about what life may be like for a couple of teens dealing with the impact of the disease.
In September 2017, award-winning author Barbara Dee released the book Halfway Normal, which looks at a younger heroine who returns to 7th grade post-chemo but not yet strong enough to fully take on adolescence. While it’s written for the middle school set, it will offer much to anyone whose life has met with school-age cancer, any family immersed in hospital life, any kid whose friend is sick or trying to bounce back, any teacher, social worker or school nurse who works with kids all the time but might only once be dealing with a child with cancer.
In this story, 7th grader Norah did not attend school in fifth and sixth grades while being treated for Leukemia–treated and sickened, losing weight and losing hair. Finally, when chemo is over, but with a weakened immune system, monthly scans and blood tests still on the schedule, Norah returns to middle school–well actually goes to middle school for the first time–and deals with seeing herself as “Cancer Girl.” She struggles to get to know old friends on new terms and deal with her parents’ fears, the sympathy of others, and the host of complications surrounding her forever-changed life.
I’ve written before about my daughter with a different cancer who missed all of the 5th grade and headed for 6th grade middle school, as a new kid, with fuzzy hair in a wheelchair and on crutches, being mistaken for a boy, and dealing with how friends would interact with her during and after treatment. So I know that what Dee writes is so on point, and is somewhat universal among the survivors who need to return to a world that passed them by for a time. A year or two is a long time in a school child’s life. While the book condenses time, the emotions are real. The upheaval for families is real. And many never fully recover.
So in this month of September with its focus on going back to school, when you are looking at reading lists for you and your kids, pick up Halfway Normal. It may help you (and your kids) think about all those who don’t sit in a classroom this fall, and how America can raise its game, find a way to not only save children’s lives but help prepare for reentry, and care for their long-term health as well.
I’ve said it before, September is a complicated month.
Author: Helen Jonsen, founder of HJ Media, serves as a strategic media consultant and coach for companies, nonprofits, news organizations, and publishers–helping create strong editorial ecosystems.
