The Race
There's a reason that this is called the fine print. The fine print is the 'after' of this disease. This is where and how we live as individuals, as parents and as a family. We live knowing there is no finish line - other than the ultimate finish line that we are all destined to cross eventually.
Cancer is gone but there is still much racing and fighting to be done - This little warrior looks ready. But am I?
That finish line is one that some of us eek towards slowly. Or maybe it's one that sneaks up on us while we are busy doing other things. Maybe the finish line is on the horizon and we see it coming so we can get ready. Maybe it just comes up out of nowhere. Some fall across it, other jump over it - some are pushed.
We have seen that finish line a couple times - off in the distance, in the middle horizon and sometimes a hell of a lot closer than I would like. And while that finish line isn't as close as I've seen it before, it's never completely gone from my mind…
So it's always a bit tricky when people ask "How is Fiona?" or say "But, she's okay now, right?" I often answer that question with a simple "she's well!" or "yes, she's okay now…" but the answer isn't actually simple or straight-forward. It's not a question I can really answer honestly without a bunch of footnotes and context and, well, fine print.
The cancer that started all of this is behind us. Pretty far behind us too. Fiona will be 4 years post transplant this summer and while not a finish line it's hell of a milestone. Despite that milestone there is still much racing to be done. Somethings we race toward - like growth and weight gain - but most of the things in this leg of the race we go around, over, under or through. Like an obstacle course filled with the collateral damage from the treatment.
And for every obstacle, there's an '-ologist' These folks are like the head coaches & experts in how to handle that particular obstacle - and Fiona's got a hell of a team. A neurologist, gastrointerologist and a cardiologist. A nephrologist, an endocrinologist and opthamoligist. A whack of oncologists and phlembotomists and her transplant team. Most of these folks we see on an annual basis at this point for a 10,000 mile check in and check up.
But there is one 'ologist' who we have on speed dial - her Respirologist. We see that guy all the time. Too much. He's why we back here a sick kids trying something new and here's why.
Fiona's lungs? Well, they are a bit fucked.
Fiona suffered some pretty significant Graft Versus Host disease (GVHD) post transplant in her gut. While we eventually got it under control, it was bad - and it was bad for a while. And then it spread to her lungs. Then we had a whole new disease and a whole new problem. The disease is called Bronchialitis Obliterons (BO) and the problem is serious.
Up to now we have used medicines to keep things calm and oral steroids when she gets a bug to help her bounce back. But if her lungs are a ball, it's a ball that isn't round any more and has some tape on it patching holes. And that's kind of how it's been with Fiona's lungs - they've always bounced back in response to the steroids ... but they never bounced all the way back to same function. The balls is not bouncing as high as the first time and, 3 years later, we are losing momentum.
Now the bounces aren't high enough at all. Now the ball has new leaks. The ball is three years older and worse for wear.
Enter pulse steroid treatments. Each day Fiona gets 10days worth of steroids in an hour. She gets this for 3 days in a row. That's like having the Hulk throw the ball.
So it better fucking bounce.
Cause if it doesn't, we are gonna need to get a new ball a lot sooner than we thought. We've always known this ball wasn't gonna bounce forever no matter how many patch jobs or how strong we threw it.
But for now we are counting on the Hulk. I mean, he's a doctor and strong AF.