One interesting bit of information I learned about Bills and Acts -- when the government passes an Act or Bill, that is only the first step. Funding for them is the hard part -- they must be voted on as well -- sometimes years later!
This is what I emailed them:
Dear NCI Office of Advocacy Relations:
I am a mother of three -- two of my children will be luckily enough to have a long, happy and healthy life. Our middle child, Johnny, is not so lucky. At the tender age of 7, he was diagnosed with standard risk ALL. The medical staff at Texas Children's Hospital (3rd best children's cancer hospital in the country) assured my husband and I Johnny would be the 80-90% of kids who make it to be a long term survivor and beyond. We considered ourselves to be one of the fortunate families because Johnny seemed to stay strong throughout most of his 31/2 year protocol.
Unfortunately, at the age of 10, and just a few months before Johnny's protocol ended, his ALL relapsed. During induction he became septic, then after numerous bacterial infections and fungal infections in his lungs his 'standard risk' ALL morphed into AML. Johnny lost his battle with leukemia on September 23, 2008 -- or what would have been his last day of treatment had he not relapsed. No one can explain why he relapsed or why his ALL morphed into AML. The team of highly skilled professionals at TCH were amazing -- they not only treated Johnny, they loved him as well.
Johnny's story is heartbreaking on many levels, but the fact that his cancer always stayed one step ahead of the best care on the planet is tragic. Until researchers have the funding to understand, learn and conquer childhood cancers, they can only attempt to treat cancer -- one symptom at a time. Treating children using this type of 'protocol' leaves researchers, families and children always steps behind the ever changing cancer cells, never getting the opportunity to be in the lead -- or at the very least, a chance to catch up.
Please don't let childhood cancer research funding become a priority only when your child has been diagnosed. Use the funds allocated from the stimulus package to help researchers lead childhood cancer treatments, not the other way around.