Who doesn’t love children? We smile at their playground laughter. Our refrigerators are destined to display their artwork. If there is danger, kids are the first ones we move to safety. How many evacuation decisions this month turned on whether your family had children at home to protect? Kids matter. Our society values children instinctively because they are our future. This near universal high priority placed on children has a few gaps however.
This year Golisano Children’s Hospital opened its doors just up the road from us. For the first time ever, children and their families in Southwest Florida have a medical facility designed just for them with pediatric specialists on staff. For a very long time, families faced a long journey for routine care of their special health needs – cardiac, orthopedic or cancer – to name just a few. Fortunately families now have a great resource available within minutes. Until you’ve rushed a sick child to a hospital 100 miles away in a blizzard, that convenience can’t be properly appreciated.
September is National Childhood Cancer Awareness Month. The ribbon color is gold, but you may not know that because there is no large national marketing campaign. You won’t be finding gold colored M & M’s or gold sneakers on the shelf. In the battle to raise awareness, the front line is pretty much the kids and their families.
Our son is one of those kids and we are one of those families.
Our son is a survivor, which makes us one of the lucky ones. During the 6 years of his treatment, we vowed to do everything we possibly could so that someday other families would not have to face the prospect of losing their child to cancer. Part of that effort includes this annual column where we use this space to talk about childhood cancer during September – Childhood Cancer Awareness Month.
We know it makes people uncomfortable. We lost friends who couldn’t handle facing the fact that it could have been their child. A good number of readers have already turned the page, not wanting to think about kids suffering and dying. But precisely because it is hard to face and harder still for the entire family to live through, it is important to find a cure for childhood cancer.
Kids cancer is not adult cancer. Kids cancer can strike at any time between birth and young adulthood. Many adult cancers have known preventable causes and are often diagnosed early thanks to screening efforts. Nobody knows what causes a baby to get cancer or a 4 year old and there are no kids’ cancer screening efforts.
There is precious little money devoted to research to find cures. Only 4% of federal cancer funding is dedicated to childhood cancer research. About 60% of the costs for drug development to treat adult cancer come from drug companies. Almost no drug company funding is devoted to kids cancer research. Private charitable cancer organizations are often not much better. They may use a photo of a bald child on their brochure or at their fundraising efforts, but when you ask where the money goes, less than 5% of their funding goes to childhood cancer research. Before you give to support kids cancer research, ask how much of your donation goes specifically to kids cancer research. Supporting education, patient support groups & transportation are important, but if you want to support research, make sure your money is doing that.
This year 15,780 American kids under the age of 20 will be diagnosed with cancer. 43 kids yesterday, 43 today, 43 tomorrow. And the incidence of childhood cancer is rising. You may have heard about how childhood cancer is one of the success stories in cancer treatment. And if you pick and choose your statistics carefully, that’s true. Children diagnosed with some types of leukemia can expect survival rates over 90%. Would you want your child to be in that 10%? More importantly, there are types of childhood cancer whose survival rate is zero. Funded research is the answer.
We need more than cures, we need to find ways to cure kids without leveraging their futures. A recent study showed that 95% of survivors will have a chronic health problem by the time they’re 45 and 80% of them will have a severe or life-threatening condition related to their treatment as a child. A cure is not enough; we need to find a way to give these kids a healthy survivorship.
Those of us who push for better funding of research, know there are a lot of different types of cancer that need attention and funding. We shouldn’t have to pick between research to save a 70 year old with prostate cancer and a 4 year old with a brain tumor. We simply ask that childhood cancer get a fair piece of a larger research pie.
We think no child should suffer and die from cancer. We’ll continue our fight for these kids and hope you will consider helping. Here are a few ways you can help:
-Become a marrow donor.
-Tell your federal representatives to fully fund childhood cancer research.
-Donate to cancer charities that are kid specific, like St. Baldrick’s, CureSearch or Alex’s Lemonade Stand.
And if you run across a bald child or teenager, maybe with a puffy face from steroids, give both child and parent a genuine smile. You have no idea what their day has been like and every smile helps.
Missy & Bob Layfield