I Promised You Me Wearing A Cape

(NOTE: Based on time elapsed since the posting of this entry, the BS-o-meter calculates this is 7.236% likely to be something that Ferrett now regrets.)

Rebecca’s Cancer Walk was this Saturday, and the cape was the big hit of the show.  Rebecca found it to be the most awesome toy ever – we wrapped her sister in it, played tug-of-war all over the park, and spent a lot of time hiding in and under it.  If you didn’t know Rebecca had a potentially lethal brain tumor, you would have found it hard to believe she was this sick.
Which led to possibly my favorite photo of me ever taken:
Rebecca and the Purple Cape
But the Cancer Walk itself was heartbreaking.  Because it was so sparsely attended, it reminded me of all of the Men Supporting Men gatherings in Fight Club; a sad group of people battered by diseases the rest of the world ignores, struggling desperately for dignity and attention.  Nobody much likes children’s cancer.  Too many kids die to feel good about even the victories.  And we’re so good at fighting regular cancer that we assume that kids must also benefit, but kids need differing treatments.  (Which we benefit from in this case – Rebecca’s brain tumor would be a near-automatic Game Over in a grown woman.)   There were maybe three hundred people there, which seems like a lot until you look at the crowds for MS Pedal to the Point or any 5k race in Cleveland.
And when it came time to call the parents of the dead children up to the podium to release white balloons in honor of the kids who didn’t make it, I lost it.  Just lost it.
Everywhere around us were people wearing T-shirts with their dead kids on them.  And I kept looking at Rebecca and going, she’s so alive.  Such a squirming, resilient bundle of life.  
I don’t want her as a photograph. 
I don’t want to use her image for a cause, I don’t want to shamble out here once a year in her memory, I want a fucking alive Rebecca with me forever, to be a pain in the ass when she’s ten and a disrespectful teenager of fifteen and a twenty-year-old college kid who’s going through the inevitable college heartbreak and struggles with studying.
And I was, and am, infuriated by the lack of attention paid to children’s cancer.  It’s like a hideous secret club you get escorted into only once you get the bad news, one where you discover exactly what the odds are once a kid gets cancer, and discover that only 4% of cancer funds go towards kids despite the fact that a lot more kids get cancer than we’d like to think, and you feel like you’re staring into the sun.  You feel like you’re being forced to look at something that nobody else has to, and the rest of the world is looking away because it’s too horrible, but goddammit people, why are there only 300 out here on a sunny, beautiful day when I’ve been at small 5ks that were sporting at least 500?
What the hell kind of world is this, where this can happen to a little girl, and this lack of attention is mirrored across the nation?
I know, I know.  There are always good causes.  My Uncle Tommy had hemophilia, and so I’m hyper-aware.  My wife’s sister had kidney disease, as does my girlfriend, so I’m hyper-aware of that.  There’s a million diseases, and all of them are terrible.  But what’s happening to kids is so deadly and we assume it’s all just okay, that we’ve kind of gotten the level of kids’ cancer survival rates up to that of adults, that it’s just infuriating.
Rebecca has the best shot of survival the Meyers can engineer.  It’s still, as we’ve all taken to saying, a toss of the coin.  And they’ve resected her tumor and got her the best kids’ care in the nation, and done everything to maximize some pretty crappy odds.
But still.  If this enrages you the way it does me, then donations are still open.  Heck, pitch in to the fundraisers in your own town.  Because while I’m usually not a fan of “awareness” as a cure (we’ve won the battle for being aware of breast cancer years ago, folks), in this case being aware of how dire the situation is and communicating that to does does some genuine good.
Because Rebecca’s my window to a much larger problem.  My heart throbs like a toothache, all the time.  I love her, and through her I love all the other children enduring this, and through them I hope we can find something to do about all of this.
Have another photo of Rebecca.  This is who we’re trying to save.
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2 Comments

  1. Yet Another Laura H.
    Oct 1, 2013

    I have a friend who is running marathons in the costumes of various fun, fictional characters— Tinkerbell, sneetches, Penn Gillette, etc. and going to grad school in order to revolutionize non-profits… I’m sending this link along to him.

    • Laura Block
      Sep 30, 2015

      Thank you for saying what must be said. It will resonate until we change the system. But we will change it.

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