I've been wanting to write about this for a while, and time is running out! I do my best work under pressure, maybe you do too.
As I've learned about childhood cancer I was very surprised to learn about how little awareness and funding is actually out there. For example, in the last 20 years, only two new drugs have been approved by the FDA to treat children with cancer. Pharmaceutical companies don't like the fund research because there's not a lot of profit in drugs for a small population. Research can be difficult because there aren't large sample sizes. The biggest problem is that in both the public and private sectors, pediatric oncology is VERY, VERY poorly funded and the coming budget cuts have the potential to stop research that is saving lives.
Esther is currently receiving radiation. The radiation is penetrating right through her reproductive system and will kill her ovaries. Esther will never have biological children. She also has a significant hearing loss. Could research be done to help these kids both survive the number one disease killer of children AND preserve their bodies?
This research will not happen until there is more awareness of pediatric cancer. Before this I had no idea the ribbon for childhood cancer is gold and September is Childhood Cancer Awareness month. Here's a few fun ways to support kids and raise awareness of childhood cancer.
The American Childhood Cancer Organization has given us, free of charge, some of the best resources as we've navigated Esther's cancer. One is a great book about being a sibling of a child with cancer and the other is an EXCELLENT, short video called "Paul and the Dragon." This video is really amazing. It is funny, sobering, real and has no words. It communicates fear, pain, treatment, victory, and fight better than any number of words could. I would say it's for all ages and it helped our kids understand and have hope.
PJ Days is an awareness campaign by the ACCO. The idea is that kids who have cancer spend a lot of time in their PJs, so let other kids (or grown ups) wear their PJs for $1 and learn a bit about childhood cancer. Not the most fun topic, but I know lots of little ones are praying for following Esther's journey. They know their friend is sick but they might not understand it.
The event kicks off the Monday, February 4th (World Cancer Day) and ends Friday, February 15th (International Childhood Cancer Day). If you wanted to organize an event (or a playdate) there are many great resources and ideas on how to talk to kids about cancer. My favorite suggestion is to watch Paul and the Dragon and then go over a few discussion questions. I think I read ACCO is providing free copies of the video to teachers. We have a copy in Ft. Collins if you'd like to borrow it. At the least you could watch the movie...it's so good. In any case, check out the PJ Days, it could be a neat way to create awareness about childhood cancer.
St. Baldrick's is a GREAT support of research for kids with cancer. They support research for treatment and also supportive care for how to help some of those side effects. They fill in the HORRIBLE funding gap for childhood cancer research. Research that is desperately needed. This statement pretty much sums it up...
"But even for kids who survive, the battle is not over. Because of the treatments they had as kids, by the time they’re in their 30s or 40s, more than 73% of survivors will have a chronic health problem and 42% will have severe or life-threatening conditions." ~St. Baldrick's "About Childhood Cancer"
One of the ways they provide that money is a Shave-A-Thon! Check out this video. Wait...grab a kleenex first...okay, now go...