Posts from Monday, August 26th, 2013

One of the hardest things for me is that too much of the time, the thought lurks in the back of my head: “What if she dies?”

I think any parent has that thought at specific moments, no matter how hard you try to suppress or transcend it.  The first time your child climbs up higher than their own height, when they get enthusiastic about sports, when they take their first solo plane flight, when they start learning to drive…you can intellectually know the odds, know that the chances of them being killed in the act of crossing the street or backpacking across Europe are infinitesimal, and yet that primal thought surfaces.  Maybe just for an instant, but still, it’s there.

And you let them do it anyway, because the alternative is to forbid them doing anything even slightly dangerous, keeping them at home and at your side at all times until their life becomes indistinguishable from the backstory in a Stephen King novel.  You have to let them live their life and hope that it all works out, that they don’t roll a long string of ones at the craps table of life.  You have to let them live.

But what if she dies?

Rebecca’s odds are better than we had feared, not as good as we’d fervently hoped: a 50% chance of surviving the next five years.  Imagine that your child’s life depended on a coin flip.  That’s where we are.  Even with the best doctors and care and technology in the country or possibly even the world, her chances of making it to her tenth birthday are basically the same as the chances that your football team gets to choose between kicking or receiving.

In order to maximize her chances of surviving, we have a lot of decisions to make.  The first was where to take her for proton bombardment.  That one seemed pretty easy: in fact, we made it in the room where they delivered the diagnosis, without needing words to come to consensus.  CHOP is the best, or one of the best, and we can get her started as soon as possible, denying the leftover malignancies extra time to continue their spread.

The decisions when we get home are a great deal more difficult.  We have three excellent health care options in Cleveland — The Cleveland Clinic, Rainbow Babies & Children’s Hospital, and Akron Children’s Hospital — but all of them are imperfect in different ways.  None of them immediately stands out as the clear best choice.

We’ll tour and interview with each of them as soon as possible, but what it comes down to is that we have to pick the facility that we believe will give Rebecca the best chances, both over the course of chemotherapy and followup examinations as well as if she suddenly requires more brain surgery.  How do we weight those factors?  How can we know what we’ll need two, three, four years from now?  What if we guess wrong?

What if she dies?

Every decision a parent makes — buying a crib, allowing a piece of chewing gum, signing up for sports camp, going to the swimming pool, handing over the car keys — is a gamble with their child’s life.  It’s just that most of those decisions have very, very long odds, some of them close to infinite odds, against losing.  Now Kat and I find ourselves in a situation where the odds are not at all long, where they in fact are horrifyingly short, and we are tasked with keeping them from getting any shorter.

And if you want to know the real, true hell of this new phase of our lives, it’s this: we can ace every decision, increase Rebecca’s odds at every step, give her the best shot of all possible shots at living to be an adult…and still, after all that, the cancer might survive the radiation and the chemotherapy, hiding a few malignant cells in critical brain tissue until we’ve run out of things to kill it with, and then re-emerge to kill her instead.  We could make all the right moves, and she could still die.

Of course, that happens every day, randomly or otherwise.  Parents who make no wrong safety decisions still lose children.  That possibility, however small, is part of parenting, and you go into the job knowing that.  You do what you can to properly balance safety and independence, and past that, all you can do is hope.  Even, or perhaps especially, when the odds shift far enough to throw the whole mechanism of randomness and luck into painfully sharp relief and turn what used to be routine, slightly banal decisions into long and sleepless nights.

In the end, all we can do is hope that the coin flip comes up in Rebecca’s favor.

But what if she dies?

• What If was published on Monday, August 26th, 2013.
• It was assigned to the Cancer, Personal, and Rebecca categories.
• There have been twenty-five replies.