It’s in the dark of night that fear’s cold hand catches you in its grip.
You’ve perhaps noticed the lack of posts over the last couple of weeks, as I’m usually a weekly poster. My absence punctuates the answer to why children’s diseases lack funding and advocates. It’s sorta like expecting soldiers in the trenches to negotiate a cease-fire while they’re fending off the fire. We’re down here, doing all we can, and sometimes it saps our energy, while others there truly is no time to give to anything else but. I have these fantasies about running 50 5ks in 50 states (a sort of Dean Karnazes thing without the superhuman athleticism) for childhood disease awareness; but because of what cancer has done to my family, I lack the financial wherewithal to pull off such a thing. Or maybe just a cool fundraiser, but again, largely as a result of cancer, I am isolated. My old contacts have gone on with life and are no longer part of mine. My career is a relic of a now-unfamiliar past.
I had a break, a nice little hiatus, from cancer treatment. My daughter hasn’t had a drop of poison since Thanksgiving 2008, and while I’ve been ever watchful for cancer’s unwelcome return, I have to admit . . . it took me by surprise. Isn’t that how it works? You worry and you worry and just when you start to think “well maybe . . .” the evil c pops right back into your life. Well, for some there’s no hiatus, so I have to be grateful for the breather. For some it’s an unrelenting assault. For us . . . well, we don’t really know yet. I’ve steadfastly maintained that we don’t KNOW that cancer has “returned” because we never knew for sure that it left . . . and I’ve been relieved that the neurosurgeon who will no doubt offer to slice open my daughter’s spine again is on another continent where he and his scalpel can’t touch us.
I know that the current status of medical wizardry has little to offer for neuroblastoma patients who relapse.
