Our Reality

It’s not all fireworks and ice cream cones around here, you know. Austin’s health, current and future, continues to be paramount in our minds and in our lives.

At his appointment last week, his oncologist said that as long as his renal numbers remain fairly steady, we could go two weeks before our next visit. That seemed like a huge vacation — two full weeks with no trips to the hospital! We haven’t had such a significant break since last November. Well, lo and behold, his creatinine was the same as it’s been for several months but his phosphorous level was up enough to warrant a visit to the nephrologist today. She did a series of labs to check for many of the complications that befall patients with chronic kidney failure, like brittle bone disease (caused in part by excess phosphorous in the blood). And, of course, because she switched him to a new blood pressure medication, we’re due back next Wednesday for another visit.

Then there’s that pesky issue of what to do about Austin’s kidney, which we have yet to resolve. We go through periods where we feel fairly certain that we’ll remove it at the end of the summer, and then we think of a zillion reasons why we shouldn’t.

In terms of his general health (not counting that small issue of his cancer returning), he is much better off now than he would be on dialysis. I forget if I explained that the GFR score is equivalent to percentage of kidney function, but we can basically say that right now Austin’s kidney is functioning at between 25 and 30% of full kidney capacity. Dialysis only replaces about 11% of kidney function (yeah, how’s that for bad news? All that hassle for 11%?), which is why patients with regular kidney disease don’t start dialysis until they have a GFR below 15. So you can see that in that regard, he is much better off as is, chugging along with his defective partial kidney, than with no kidney at all.

It’s a pretty significant distinction after all. Here’s a child, in his prime years of physical, emotional and academic development, with a major organ functioning at thirty percent versus ten percent. Removing that kidney has implications across the board for him and his longterm health. And not good implications either.

Except for the one good thing that can come out of it. Except for the flipside of our constant dilemma: What if there are tiny invisible cancer cells lying in wait inside that precious kidney? And what if, given this current reprieve from chemo and radiation, they gain strength and gather together, forming a new army ready to wage war on his small body yet again? What if we wait one month, one week, one day too long before making this critical decision? What then?

So we fill our days with ice cream and fireworks, big underdog pushes on the tire swing and extra chapters of the latest favorite (The Trumpet of the Swan) at bedtime. It hovers there, our reality, even when we’re dancing in the crowd to reggae music, Austin spinning in circles around us to the beat of Carlos Jones. Our reality remains. But while Mark and I can not escape the weight of this decision, our children can.