I'm once again lurking on a support listserv related to neuroblastoma at The Association of Cancer Online Resources (ACOR). There has been a recent flurry of emails about fund-raising for pediatric cancer research. I'm not quite prepared to go into my conflicted and complex views of how money should be distributed by the government or large, national non-profit organizations like the American Cancer Society. I'm personally struggling on that front with how to balance my own emotional closeness to the topic versus the logistics of how to distribute money given disease mortality, frequency of occurrence, age at which disease typical emerges, and etc.
What has become obvious to me though is that given how money is currently distributed for research for various cancers, the rarity of pediatric cancers and perception that pediatric-cancer=leukemia=treatable puts pediatric cancer funding pretty low on the totem pole. If the big, national organizations aren't cutting it, who is leading the charge for raising money for kids with cancer? Quite clearly it is parents of kids with cancer or parents that have lost children to one of these monstrous diseases. I have not had the strength to be part of the lead in this charge. I'm not sure I ever will. I have much respect for those who find it. In some cases I'm sure it is a form of self-therapy, but it is more than that as well. It is a burden. A huge burden. The burden on parents with children sick with any serious or chronic illness is terrible, and to throw in the burden of legitimately (at least in my estimation) feeling like it is not only your responsibility to fight to get your own kid better but that you have to be fighting to find a cure for all the kids is really just insane. This is how it works though. I guess it is just one of those harsh realities. The people out there fighting for funding and for a cure are those that have been "touched" (or punched or however you want to look at it). I wish this would change, but I doubt it will. These poor kids and families have it all stacked against them. If the burden falls on those that have been stricken with this, and getting stricken with this is "rare" in comparison to adult cancers, then the progress is inevitably going to be slow. A lot of these incredible kids and families don't have time for slow and steady progress.
Kudos to those families and friends of sick kids that get out there and fight so hard to make a real difference.