The Best Laid Plans

You know what they say about those, right?

During Austin’s second bout with cancer, when he was 3 1/2, we were told that his kidney would probably last until he hit puberty when a growth spurt and added muscle mass would put it into overdrive, causing it to eventually peter out. At the time, we thought that was great news. (Who can even envision your child actually reaching puberty when they’re just 3 1/2?) We’ve even joked over the years about how that same piece of news would sound so horrible if told to “regular” parents, but how welcome it was for us. I mean, we were being given ten good years.

And ten good years we’ve had. Austin will be 14 this fall, he’s taller than I am, and he has to shave his little mustache every few weeks or so. The child has definitely reached puberty.

So it’s happening. He had been in Stage 3 renal failure for most of the past decade and is now in the lower end of Stage 4. Based on what his numbers have done over the last six months, we expect that he’ll reach Stage 5 within the next three to six months. To put it in numeric terms, his GFR (you don’t even have to know what that is) was 29 in the end of December, 26 in the beginning of April and 22 last week. Once it’s under 20, he’s eligible for transplant and once it’s under 15, he would likely need thrice weekly hemodialysis if he wasn’t already transplanted.

Of course this will all be based both on what his labs show and — perhaps most significantly — on how he feels. As of this moment, in true Austin fashion, he feels totally fine. So we could possibly keep this kidney going for up to a year if we’re lucky.

Mark, Austin and I have just returned home from a long “treatment options meeting” with his nephrologist, the dialysis/transplant nurse practitioner, the social worker, and the dietician to walk through our options.

First things first, we simply carry on, no immediate changes except that we’ve added two new meds so he’s taking five or six each evening plus a once monthly shot, which we’ll start tomorrow. He’ll now get labs every month instead of every three and we’ll see the doc in person every other instead of every four.

As soon as his GFR dips below 20, which could happen in mere weeks or could take a few months, we can start the evaluation process to be approved for transplant. This involves a battery of physical tests for him, plus some social-emotional evaluations for all of us to determine how compliant we’ll be with taking meds, going to appointments, adhering to diet, etc, plus some detailed looks at our insurance coverage and whether we have the financial stability to take care of him. Sounds like it can take up to two months to get him officially recommended and approved for transplant.

At that point, we could begin the process of testing potential donors. Insurance usually covers only one or two at a time (depends on the insurance, apparently) so there will be some narrowing down of best candidates based on the results of Austin’s work-up before anyone actually gets tested. The ideal kidney comes from a living related donor between the ages of 18 and 50, though they especially like someone under 35 when giving to a child. And the outcomes for related versus unrelated donors have narrowed considerably over the years so they’re almost equal (though a kidney from a living donor continues to be superior to a kidney from a deceased donor.)

The first matching question is blood type and, as I’ve mentioned before, Austin’s is AB, the universal recipient (chalk that one up for the win). Then they do a series of six tissue matches, the more that match the better (though increasing immunosuppressant drugs can help with a less than perfect match). The tricky one for Austin will be the cross-matching of his blood because he has likely built up so many antibodies due to the countless blood and platelet transfusions he had during treatment. So we expect that to be a fairly major hurdle.

All in all, none of us is particularly distraught by this news as it is happening exactly the way we’ve always expected it would happen.

Except for that one little thing that none of us ever expected: the coronavirus.

You may also remember that back in the day, our main goal was to get him to the point that when his kidney failed he could go directly to transplant instead of having to do dialysis. (No one can receive a kidney transplant within two years of cancer treatment because the necessary immunosuppressant drugs can cause any lingering cancer cells to grow. Hence, our relief when he was declared two years cancer-free.)

Of course, immunosuppressant drugs can also put one at a markedly increased risk for catching things like, say, a mysterious, untreatable, potentially fatal novel virus should such a virus be ravaging the globe.

You can see where I’m going with this?

Depending on where we are with this pandemic (ha, it’s almost laughable to even type those words because Who. The. Eff. Knows???), his doctor is recommending that he “bridge” with hemodialysis and wait to transplant until there’s a vaccine or a treatment or at the very least until things feel safer. We will still do all of the pre-emptive work as soon as he’s eligible so that a donor can be chosen and ready to go as soon as the magic moment arrives, but the reality is that he could end up with some months of thrice weekly hemodialysis treatments.

While far from ideal — and not at all part of our best laid plans — this is not nearly as terrifying as it was to me when he was a baby. Dr. Dell said that kids do remarkably well and can often still participate in their full physical activities even in the midst of dialysis. So that’s encouraging. And, of course, the fact that he will have numerous options for remote learning during either dialysis or post-transplant is (dare I say it?) very fortunate.

So, we move one step closer to what we’ve always called “our next big thing” and we wait out Covid-19 alongside the rest of the world and, in the meantime, Austin keeps riding bikes with his friends and playing baseball and going to in-person school (I hope… this fall?!) and being a normal teenager in an abnormal time.

And we carry on. Because that’s what we do.