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Well, a few stitches can’t slow this boy down.  Aside from missing his last week of swim lessons (much to his dismay — not), he’s doing everything normally: running, playing, climbing. Here he is at Horseshoe Lake Park a few days ago climbing higher on the rope structure than he ever has before.

The boys even went to Chautauqua with my parents from Saturday to Sunday, while Mark and I hit the eastern Ohio wineries with some friends, a nice and much-needed break for us. Because, did I happen to mention, that last Tuesday, the day of “the incident,” was also our 8th wedding anniversary? I know, just our luck, right? We had celebrated on Monday by going out for a nice dinner, knowing that we’d be in Kalahari on the actual day. And then were thinking we might get to go out for a drink that night after Mark’s parents came back from their dinner to watch the boys in our hotel room. But no, instead we spent another anniversary in a hospital, three years after “celebrating” our 5th as newly minted parents of a child with cancer. The 8th, while bloodier, was definitely better.

And in the never-slowing-down category, tomorrow we head to the hospital for a whopping five doctors’ appointments. Yuck. First we have follow-up with the radiation oncologist which is no big deal. Then a  chest CT, which he gets every three months to check for possible cancer in his lungs. After that, an abdominal ultrasound to check for cancer in his kidney. Then it’s vascular mapping, a procedure done for the surgeon who would eventually place a dialysis catheter, if and when such a thing becomes necessary. This is not pending, as you know, but in the case of either new growth (cancer) or worsening kidney function, we might need to move quickly to remove the kidney and start dialysis.  This mapping of Austin’s veins will help the surgeon decide whether to place a fistula or graft, which really means nothing to you (or even us) until it happens.

And finally we end our day by visiting the out-patient oncology clinic for a check-up and labs. My big worry (well, besides the big worry) is that he lost so much blood last week that he’ll need his next transfusion sooner than we’d expected. I’m just hoping it’s not next week because the boys are headed back to camp and I’m planning to complete (I mean, start) all the organizing, filing, unpacking, and cleaning that I’ve had all summer to do.

It never does slow down . . .

Yesterday, I briefly mentioned today’s GFR and its “enormously consequential” results.  Perhaps that got lost in my (self) motivational running analogy, but here’s the deal: Austin had another GFR today, the kidney function test we’ve been using to dose-adjust his chemo. As you may remember, his last results were a pretty dismal 34. If it dips below 15, he will begin thrice-weekly hemo-dialysis. This will necessitate another surgery, almost immediately, to place a dialysis catheter in his right sub-clavicle vein. It may also necessitate the removal of his remaining kidney.

Usually, when someone has chronic kidney disease and their kidney(s) fails, that non-working organ is just left inside them to shrink and wither away. In Austin’s case, because his kidney is the point of origin for all his cancer, we obviously don’t want to let it just sit in there if it’s not doing us any good. However, there is a possibility that he could regain some kidney function once the stress of chemo is removed. Sooooooo, you can see that we might find ourselves in another sticky dilemma: Do we keep a non-functioning potentially cancerous kidney inside his body in the hopes that it might work again in a few months or do we cut our losses and just remove the damn thing?

Ugh, not fun choices.

The other possible outcome from today’s test (results of which should come sometime tomorrow) is that he falls somewhere between 15 and 30, which means his kidney is still chugging along and would still work in the “outside world,” but that it’s not strong enough to filter out the chemo we’re about to pump through his bloodstream. Hmmmm, then what to do? Forgo chemo — and risk yet another relapse — or jump in and speed up something we hope never happens?

Again, not fun choices.

There may be a chance to do temporary dialysis just on the days he receives chemo, although that’s not standard protocol and not strongly recommended by the oncologists. They think we should stop trying to delay the inevitable and just get rid of it. We’re not ready to do that yet. I strongly believe that he and his body (and his family) need a break, more than two days away from the hospital at a time. And as long as that doesn’t cause obvious harm, we should do all we can to give him that. When does the risk outweigh the benefit? Can we ever really know? God, haven’t we been having this same conversation for the past six months?

Of the many possible results from today, there is only one that is any good: that his GFR has stayed the same, a nice steady number in the low 30s. Not great, but certainly good enough. It may not be the most realistic outcome, but at least we have something to wish for.

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February 2020
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