Who doesn’t love children? We smile at their playground laughter.We chuckle at their knock-knock jokes. Our refrigerators are covered with their artwork. If there is danger, kids are the first ones we move to safety.We put ourselves in jeopardy to rescue a child we don’t even know and we do it without thinking about it. 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 week we have a great story about A Seahorse Dream, a fundraiser for Golisano Children’s Hospital and it’s a timely story because September is National Childhood Cancer Awareness Month and Golisano is our local kids cancer treatment center. You probably haven’t heard of it but yes, there is a 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, it’s 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 to make sure that other families did 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.
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 nothing is as important as finding a cure for the group of cancers known as childhood cancer. Kids cancer is not adult cancer. Many adult cancers have known preventable causes, whether its diet or smoking or environmental hazards. Nobody knows what causes a baby to get cancer or a 4 year old. And there isn’t enough money devoted to kids cancers to find out.
This year 13,500 American kids under the age of 20 will be diagnosed with cancer. Thirty-six kids yesterday, thirty-six today, thirty-six tomorrow. 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 the 10%? More importantly, there are types of childhood cancer whose survival rate is zero. Other types of kids’ cancer have not seen any improvement in their survival rate or new treatment in decades.
Of 100 kids diagnosed today, 20 will die within 5 years. Another 14 will die in the next 25 years. Of the 66 who survive 30 years (remember these kids are diagnosed at very young ages) 44 will spend the rest of their lives dealing with chronic health issues caused by their treatment. Only 22 kids will live at least 30 years without a serious health problem. That 80% survival number does not tell the whole story for kids.
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.
But rather than talk numbers, let us tell you about some of the real kids we’ve met since a hot summer day in 1995 when we heard, "Your son has leukemia.”
"Clare” was 17 when they found osteosarcoma in her knee, a basketball player about to enter her senior year of high school. They were able to save her leg with a knee-replacement. She spent 4-5 days in the hospital every 3 weeks, getting chemo. She had no hair, no appetite but lots and lots of spirit.She is now a young adult survivor facing fertility issues and of course, a total knee that will need to be replaced several times over her lifespan.
"Ben” was less than two when he was diagnosed with leukemia, the kind that needed a bone marrow transplant right away. But it wasn’t enough. He died two months before his 3rd birthday, leaving two siblings, parents and grandparents to miss his smiling face. We wish every Senator and Congressman had been sitting next to us at his funeral. There would be no funding crisis for kids’ cancer.
"Justin” was a pre-schooler when the doctor found the neuroblastoma. His parents took him to a number of hospitals looking for a cure, but there was none. At the age of 5, he died in his mother’s arms, rousing after several days of a coma to reach out into the empty room and declare clearly in a perfect indignant 5-year-old tone of voice, "I’m NOT afraid!”
Real children, real families and the bravest people we have ever known. We know hundreds more just like them. We think no child should suffer and die from cancer. We’ll continue our fight for these kids and hope you will consider helping. What can the average person do? Here are a few ideas:
-Become a marrow donor.
-Help build Golisano Children’s Hospital.
-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.
Missy & Bob Layfield