Coming Up Right
I had an adorable little boy come to my Oncology Clinic the other day for his regular checkup, as happy as could be.
He's supposed to be dead.
There's bad cancer, and then there's worse cancer, and then there's "your brain is so full of doubling-by-the-day cancer they had to do emergency surgery to cut off the upper part of your skull so that your swelling brain didn't crush itself to death inside your cranium". That was him. Cancer that starts roaring back even while you're in the middle of *treating* it is really bad. He had that. *Twice*.
A year ago, after his second relapse while still early in therapy, *after* we'd already given him a set of experimental drugs and his first bone marrow transplant, after a long series of desperate brain-storming sessions among ourselves, we offered his family our last-ditch plan. The one we pretty much scraped together from basically anything we had left that he hadn't already failed, the one that pulled together the drug nobody was really sure would work with the techniques that only Hopkins was initially willing to try, that stacked the 1/10 chance of working with the 1/10 chance of working. It was not a plan with good odds. In fact, it was a plan which all of our data really gave very bad odds. It was simply the only plan we had left, other than comfort care and deathbed planning.
And a year later, he's disease free, back in school, and roller skating with his friends.
He's not supposed to be here. The odds say he shouldn't be here. In the year since that desperate roll of the dice, plenty of other kids with far better odds have lost their fights and gone to whatever lies beyond. I've been to a lot of memorials, funerals and wakes. But I haven't been to his, yet. He's not just not dead: he's, for the moment, living an entirely normal kid's life. Against all of our knowledge and expectation, he's here, and well.
He could, of course, show up tomorrow to the ED with his cancer in full-blown relapse. Or a month from now. Or three months from now. I wouldn't be suprised at all, sadly, if that happened. In fact, I kinda expect that. But the odds say this should have happened *already*. Odds say, in fact, we should have never gotten his cancer under control at all. But the fact he's gotten this far - even if he fails tomorrow - is surprising enough to be worth us writing a little case report about him for publication.
We didn't take the desperate plan we did for him because we thought it would work. We did it because it was the only plan we had left. It was last shot, long way gamble, and somehow we came up rolling double 20's. Sometimes, rarely, once in a while, we *do* actually fucking win the roll.
One of the reasons I've written less and less, is because there becomes less and less point writing about defeat after defeat, loss after loss, disaster after disaster. In medicine, in politics, in so much else, the grim facts and odds speak for themselves -- except, once in a while, when they don't. For every 99 times the inexorable weight of reality wins, there's one time in a hundred when, somehow, Murphy's Law shoots himself in the balls pulling his gun out of his holster.
The difference between "essentially" no hope, and *truly* no hope, is both as thin as a sliver -- and as big as night and day. Sometimes, the Enemy really *does* let their guard down for just one second for no good reason. Makes just one mistake. Suddenly decides to go stupid for no particular reason. Once in a while, for no good reason, you suddenly *do* get one clear shot. You just keep beating and beating and beating and beating so that the one single second an opening appears in the Enemy's guard your next blow is already on it's way inbound. Because even if that one moment of vulnerability never appears, if you're going to be destroyed whether you fight or not, as long as there truly is still the tiniest glimmer of hope, and you have no other choice but go for that tiny remaining chance or accept destruction: what the hell does one have to lose?
One of the hardest things is being able to identify when a fight *truly* becomes futile. When the chance of victory has truly become an illusion, and further resistance is just prolonging suffering. Figuring out the difference between a desperate fight, and a truly pointless fight, figuring out that moment when the odds truly go from practically hopeless to *truly* hopeless - trying to answer a parent when they look to you for the answer of when to let go: there's a hard, bitter challenge. Just another one for the pile.
I don't know how much longer our roller-skating little boy has. I mean, he's already beaten the odds as thoroughly as any lottery winner. But admist the reality of the odds we grimly know -- and admist the screaming frustration of the countless times somebody who *should* have done well, gets cut down by *bad* luck -- it's nice, once in a while, to win one. It's nice, once in a while, to actually have the dice come up right.