I read this article, (see link at bottom) It made me realize that I need to speak up and say something. As a parent of a brain tumor survivor. I saw treatments that were available to adults, but were not available to my son because he was a child. These treatments were not available to children because they have not been tested on children and there weren't even any trials even being done. I know what it is like to decide to treat my child for his brain tumor with treatments that I knew would reduce his IQ by more than 10%, destroy his Thyroid, damage his pituitary gland, cause possible deafness, and blindness and leave him permanently bald. I chose that treatment because it was the only one available.
The number one killer of children is cancer. Cancer claims the lives of more kids than the next 5 on the list combined.
Half of the children diagnosed with brain tumors will die within 5 years. Overall one in five children diagnosed with cancer will die within 5 years. The 5 year survival rates for breast cancer is 88%. So why was breast cancer funding in 2006 $ 584 million, while childhood cancer received $ 26 million.
For some, the battle with cancer ends quickly because there are no good treatments. There has only been 1 new chemotherapy medication approved for children's cancer over the past 20 years. Mostly because there are so few clinical trials for pediatric cancer. The funding for pediatric cancer clinical trials has gone down every year since 2003.
The treatments known to destroy these rapidly growing cells can also destroy just about every system that is rapidly growing. As our kids grow so quickly, all of their cells and systems are targeted and this leads to multiple disabilities - if they are fortunate enough to survive. The course of treatment for cancer can last upwards of 3 years. During these times they go through irreversible trauma. When they are finished and try to fit into the "normal" world again, they are faced with many physical, intellectual, and emotional challenges in trying to adjust to a new world. The impact is devastating to each member of the family - emotionally, physically, mentally, spiritually, and financially.
Children can't advocate for themselves and their parents are usually too devastated financially and emotionally to petition congress and promote childhood cancer awareness. I do need to say something, perhaps it is too late for any research that may help my child, but I never want another mother to have to make the choices I had to make. We need better treatments for our children with cancer.
read this
http://www.forbes.com/opinions/2008/09/11/pediatric-cancer-philanthropy-oped-cx_hj_0912jonsen.html
They fed us very good lunch, after lunch they interviewed the brain tumor patients on the stage. Little Jimmy was the youngest Brain tumor patient there, but he spoke as if he were much older. Among other things he said "I am grateful that so many people cared about kids with brain tumors that they were willing to come out". It sounded like a speech that an adult had written for him. I guess he is a good public speaker.
