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People keep telling me to go with my gut but all day long my gut’s been telling me to stop and then tonight, it switched over and said continue. Aaaahhhhh.
Here’s some more info, in response to some of your questions and comments (thank you for those) and to help me further flesh this thing out:
If we stop, we would certainly continue to monitor Austin. As his oncologist said today, “We wouldn’t just wish you luck and send you on your way.” He’d still have frequent, probably weekly, labwork to watch the kidney function, plus abdominal ultrasounds and chest CTs to check for relapse. He would not be able to do either MRIs or abdominal CT scans due to his diminished kidney function. That gives us pause because abdominal CTs seem more accurate than ultrasounds but if we have the right person doing them (since ultrasounds are more user-sensitive than CTs), they’re still enormously useful. In fact, we followed his “shadow” in the fall on ultrasound for many months (and some people argue that this is a better approach anyway because it reduces the radiation risk). So we’d still be watching, at least every three months until we felt that things were holding steady enough to move to six.
Austin is scheduled to have an ultrasound on Monday which could help us finalize this decision since if there’s something suspicious or different from the last time, we’d obviously opt to move forward. But his full scans, including an abdominal MRI, were clear in the end of March so we expect and hope that hasn’t changed.
If the cancer were to return again, we would remove the kidney then and there without another thought. But it might be too late. This cancer is tough enough to “cure” the second time around; the third time is almost definitely fatal. So, you see, this decision is a heavy one. Here’s what the study shows us (and remember, there are no kids like Austin in this damn study — every child with bilateral Wilms was removed at the onset and none of the kids had Austin’s rhabdomyomatous variation) but it shows that out of 60 children with relapsed Wilms who went through this protocol (having anywhere from less than one to the full six maintenance cycles), 33 of them had a second relapse and, of those, 27 died.
This lovely bit of information (which is shockingly new to you but sadly familiar to us) could actually push us in either direction. It could make us say, “Holy shit, this is serious stuff. We need to do everything possible to not let it come back, no matter how miserable it may be.” But then there’s another side of me that says, “Wait a minute, here I am being told that my child has at best a fifty percent chance of living, at best. Shouldn’t I do everything in my power to make sure his life, however short, is good? Or great, even? That he doesn’t spend half of his piddly little life in a hospital, hooked to machines, on the wrong side of the window?”
It’s a crazy way to think. It’s unnatural for me to write these words or think these thoughts and yet, this is our reality. This is how we have to think. We have to know that if we choose to stop, he might die. But, fuck, he might die anyway. We might remove his kidney and keep pumping him full of chemo for week after week and cycle after cycle and he might die anyway!
Because here is what the study does not tell us, anywhere, ever: what difference additional cycles make. It never ever mentions how the 12 kids who did one cycle fared compared to the 14 who did two compared to the 2 who did five. They never tell us! So how are we supposed to know if two is actually better than one? Or if two is even enough — what if we have to do three or four or six to make a true statistical difference? (And then how many of those kids end up dying from treatment related complications or from leukemia ten years later??) Our oncologist has requested that information and never received it but I’m asking on my own, sending random emails to the study authors to see if we can glean a little insight into what seems to be the most important factor.
And then there’s the issue of how long the kidney will last if we do stop. It could, of course, fail next month. And then we’d be on dialysis anyway. Or it could bounce back, free from its recent stress, regain some function and keep on keepin’ on. Remember, it only needs to make it two years before he can be transplanted, as long as he remains cancer-free. So even if it chugs along for just another six months or year, it would still get us that much closer to transplant.
Our oncologist has said he’ll support whatever decision we make. He recommends continuing but he also understands and respects the other side. He told me today that if he believed we were putting our child at risk or were making a mistake, he would tell us. But he doesn’t think that. He sees the value of either choice. Which says a lot because, an an oncologist, his job is solely to rid my child’s body of its cancer.
Our job is so much more.