The Littlest Ones
September is Childhood Cancer Awareness Month. Not a topic that anyone likes to think about. Who wants to contemplate sick children fighting for their lives?
Nobody does, most of all the family of that child.
Kids get cancer. Every day another 28 kids. Each day 4 children will die from cancer.
Kids that are just babies or kids that are teenagers fighting about using the car one day—fighting for their lives the next.
There are problems in this world that are hard to put a face to. Starving children in a far off land…natural disaster victims…they all tug at our heartstrings but it’s not personal for us, we don’t know them or their families. We don’t know their dreams and their plans. These problems aren’t quite real to us.
Childhood Cancer IS real to my family. The shock, the fear, the rage, the hope, the determination to stop cancer in kids. These have been stalwart companions for my family since one very bad day in July 1995.
The sun was shining. All was right with the world. It was a good day, until it wasn’t. Once you hear "Your child has cancer” the world never looks the same again. I share that jarring moment with thousands of other families, some of them in our own community.
Which is why once each year in September, I owe it to those families to point out that kids get cancer. The idea of it is so scary to some that they cannot handle even hearing about it. Cancer families lose friends, relatives, even church groups as people can not handle the knowledge that something so scary can happen to children, possibly even their own.
If you know just a little about kid’s cancer, you know that 80% of kids survive. That means they’re alive 5 years after they were diagnosed. Some types of cancer have very high survival rates-in the 90’s. Some have zero survival rates. Imagine for a minute that you are a parent hearing that news.
Those lucky ones, the 80%, are a poorly understood bunch. For decades, if a child survived cancer and its treatment, they were considered fortunate and sent on their way. We now know that over two-thirds of survivors will spend the rest of their lives dealing with a long-term health problem caused by the treatment for their cancer.
That doesn’t sound "cured” to me.
A recent article discussed what survivors’ lives looked like 30 years after their diagnosis. Only 22% of survivors can expect to live 30 years without any chronic health problem related to their treatment. When the average child diagnosed with cancer is 10 years old, that means by the time they are 40 they are still having major problems because of the cancer treatment they had 30 years before.
So the problem is not just the cancer, it’s the treatment.
We need better treatment. Children’s Oncology Group, of which Children’s Hospital is one of 220 member hospitals, are the world’s leaders in pediatric cancer research. A number of large hospitals also do research. While you may be aware of St. Jude’s for they do have the world’s best marketing plan, and they do important research, 97% of children with cancer are treated at a children’s hospital near their home, like the Children’s Hospital of SWFL.
We need better drugs. This year, something miraculous happened. Congress agreed on something and passed the Creating Hope Act as part of the FDA bill. In the last 20 years, only one new drug was approved to treat kids cancer. Why? Short answer-there’s no money in it. For years it was thought that kids cancer was like adult cancer. It’s not. Ever heard of neuroblastoma or rhabdomyosarcoma? Probably not. Kids need their own drugs. The Creating Hope Act just might make that possible.
We need more money for research. The National Cancer Institute provides 4% of its research budget to kids cancer. Lung cancer got $296 million; Breast cancer got $625 million; all pediatric cancers combined got $197 million. So, cancer charities must be picking up the slack, right?
Wrong! In 2010, the American Cancer Society devoted 1% of their research funding to kids cancer. The Leukemia and Lymphoma Society used 2% of their research funds for kids. Not a lot of money is heading toward curing cancer in kids.
Which is why childhood cancer specific charities such as CureSearch, St. Baldrick’s and Alex’s Lemonade Stand, are preferred by many families affected by cancer. They give over 80% of their funds to research specific to childhood cancer.
When you are asked to donate to a charity, make sure the money goes where you want it to.
Someday, families facing the grim news of childhood cancer will have reason to hope that their child can look forward to a long and healthy life after treatment.
We’re not there yet. Until we are, my duty as a survivor’s parent is to keep beating the drum.
Kids get cancer. Don’t turn away from that. Help us find a cure!