In previous years, I have addressed September as Childhood Cancer Awareness Month. I have celebrated the fact that Elise is with us, and the people we have met along the way. I still am thankful for my Elise having beat this monster disease. And I would like to "reshare" some of those thoughts.
I have also, in person, shared how important all the fundraising is for Childhood Cancers, because the public funding and allotments are so stingy with Childhood Cancer research and support. Like, shamefully disproportionate:
The American Childhood Cancer Organization says "Cancer will be funded in 2009 at a level of approximately $5.6 Billion. In 2007, the NCI reported that the combined extramural and intramural funding for childhood cancer research was approximately $180 million. However, this estimate could be regarded as liberal as some of the associated research might not be perceived as directly benefiting childhood cancer. Other more conservative estimates, put childhood cancer research funding as low as $30 million annually." And other research groups that focus on Childhood Cancer, estimate very similar numbers.
The bare bones Childhood Cancer statistics are here:
For me, I look back at the kids that I know personally that have been lost.
And the hard thing for me and, most especially, their parents, is: "If research had gotten decent funding, could they have had the One Thing that would have helped them beat it?"
As many people before me have said, people in the position to allocate funds answer to adults, not kids. So you know how "awareness" helps? Now you know to ask. Now you know to do all the fundraising 5ks. Now you can donate time, money, or toys. Now you know that we need you.
Please research any group you choose to give to. Make sure that they are transparent in the allocation of funds. Make sure you hold them to accountability.
Personally, we were touched by Cure Childhood Cancer, here in Atlanta. I know for a fact, that they were heavily financially involved in supporting one Elise's doctors' research. I know that they are funding research in long-term effects of chemo and cancer treatment drugs and protocols at the group that has handled all of Elise's treatments and follow up medical involvement. I am sure that they were also involved with the experimental treatment that Elise received and that now is the new treatment protocol for all kids with Down Syndrome who are diagnosed with AML here in Atlanta.
Cure Childhood Cancer, also provided Thursday Night Meals for families undergoing inpatient treatment. We looked forward to each Thursday as a break from hospital food. More than that, though, it was an emotional release from the oppression of the sameness, and they gave the knowledge that there was someone out there that cared and hadn't forgotten us...or gotten tired of our emotionally draining updates.
I have been impressed with their transparency and their commitment:
But the thing you need to know, is that even if a child fights and wins, it never really goes away.
Elise not only had to battle cancer, but she is dealing with increased mental impairment because of the very chemo that saved her life. We know this, because nobody dodges this. The most common side effect of any chemo that I have seen is the inability to organize and process thoughts like before, in varying degrees. And in the face of every single IEP at school and every story of children with Down Syndrome who are successful and perform on par with typical peers, I wonder again how much Cancer took from her. Because of the damage the chemo did to her body while killing the cancer cells, she also lost a year's worth of interventional therapy. In all areas, Physical, Occupational, and Speech, because she was too tired to grow and progress. And we are still seeing the loss.
Why families who have lost kids fight passionately, most people understand. They miss their child, and want to honor their baby's memory to help other kids NOT lose. The ever popular "F U Cancer" indicates just how unending the battle is.
Those who have battled and made it? We fight because we lost kids who we "playdated" in the halls during treatment. We fight because we feel guilty to have won, with nothing more to recommend us than anybody else. We fight because we know how brutal the path is. We fight because we fight the long-term effects every single day. We fight the heart damage, the mental impairment, the systems failures, the lung damage, the liver damage, the secondary cancers, and the chronic fear.
We fight, because it is never over.