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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.

Wow, well, that was quite a typo, huh? As I think was obvious, the last lines of my previous post were supposed to read (and now do read), “I do NOT want to be like them.” I am going to quickly breeze over that so as not to make myself too superstitious and nervous about possible hidden meanings.

Anyhoo, Austin needed platelets again today (of course, why are we surprised?), but that came after a lovely morning at school. He didn’t even cry when I left him, which is a rarity. It’s been a struggle to fully acclimate him to preschool since every time he gets into a groove there, he’s pulled out again for a three week “vacation.” So today was good and he’s due there the next two days as well.

We were bummed about the platelets but pleased with his much more reasonable blood pressure numbers, even after his transfusion. Maybe the medication is finally at the right dose and doing its job.  While waiting for his platelets to arrive from the blood bank, we spent a sunny if chilly hour outside engaged in our favorite activity: construction gazing.

We’re not expected back at the clinic until Thursday morning, a full two days off. Well, two days off for him. Mark and I are planning to meet — sans children — with our oncologist and nephrologist tomorrow to try to flesh out the next steps in Austin’s treatment. We are hopeful that we’ll get enough clear information that we can make a decision we feel solidly comfortable with. We know, however, that answers to most of our questions simply don’t exist and we’ll therefore have to choose among the lesser of evils.

While Mark and I think differently and come to our decisions via different routes, we both fully understand and respect each other’s decision-making process. We also know what each of our weaknesses are, such as that part of me wants to stop chemo simply because I am sick and tired of chemo. I recognize that and Mark recognizes that and we will do our best to not let such (expected but selfish) feelings influence our ultimate decision.

In my mind, this is a choice between an almost certain bad thing happening if we continue (kidney failure) versus a maybe (?) remote terrible thing happening if we don’t (cancer returning or, worse, spreading). Not to mention the numerous other bad things that can happen as a result of continuing (bone marrow depletion leading to bone marrow transplant, secondary cancers down the road, fatal infections of the central line, etc). We don’t need to make any decision for a while because he still has another round next week from which recovery is bound to be long and torturous (same chemo as this last time — just piling it on).

Neither option is perfect, neither road a smooth one to travel. Both are fraught with danger, sometimes obvious, sometimes hiding around the bend. No matter what we choose we’ll be taking a huge risk. But we will be cautious and we will be wise. And I hope hope hope we will be right.

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