Two political issues are at the forefront of my mind tonight as I shelve the idea of catching any sleep in favor of putting those issues into your minds. They are our president’s willingness to cave on the emissions standards and the FDA’s eagerness to ban supplements. I’m feeling a little grumpy about these, so be forewarned.
The Big Umbrella
The Big Umbrella is a forum for brainstorming how we parents of sick kids can unite our interests - and therefore our numbers - in order to become a force for reckoning. We've all spent our time and effort advocating, raising awareness, and raising money for whatever ails our particular loved ones; here, I hope to determine what our common cause is and go from there.
Wednesday, September 14, 2011
Public Comment Period for FDA Vitamin and Supplement Regs is On!!!
I've been absent for awhile. Childhood cancer has, unfortunately, been keeping me busier than usual. Still, the world keeps turning. And so does politics in America and all of its attendant messiness. It's late and I'm not in the mood to edit so please read with a forgiving spirit.
Monday, July 25, 2011
Late at night . . . too tired to edit . . .
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.
Tuesday, June 28, 2011
Sunshine on my Shoulders Makes Me Happy and Healthy!
I don't know about the rest of you, but I became a parent in the midst of the "slather every inch of your child's body with sunscreen every second of the day lest you relinquish him to an early death from melanoma" dogma. Now, as the parent of a child with cancer, and a friend of a young man who died from melanoma at age 38, I don't want to seem like I'm trivializing. However . . . could it be that, like with so many things, we've been sold that bridge in Alaska in the form of products we don't need and that don't even do what they claim to?
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