Living with uncertainty

The mystery of Austin’s kidney continues with no easy resolution in sight. Yesterday’s ultrasound revealed that this shadow, this mass, actually appears to be filled with fluid. Now at first glance that seems like good news because Wilms’ tumors are solid tumors. But of course, there are things to worry about that we had never heard of before.

First of all, the radiologist doesn’t think he can do a needle biopsy on it if it’s fluid-filled because he usually takes slices off of solid growths. Fine needle aspiration is a possibility, although one that often results in non-diagnosis (or even misdiagnosis) due to the small sample size. So it seems likely that we cannot find out what this thing is without removing the entire kidney and biopsying it. Which we are not willing to do. At least, not yet.

Jeff (that’s Dr Auletta, for those of you not yet on a first name basis with our oncologist) said there is a spectrum of cystic lesions that this thing might be. It could be a benign cystic nephroma (you guys should qualify for an honorary medical degree just for reading this stuff!), which is not that big a deal. It could also be a partially differentiated nephroblastoma, which falls in the intermediate danger range, sort of a non-aggressive cancer-like growth. It would appear that neither of these two options are particularly dangerous; however (big however here), in kids with two functioning kidneys who present with one of these two cysts, the typical course of treatment is to remove the entire affected kidney. Just in case. It’s really a better-safe-than-sorry approach; sort of no-harm, no-foul. Now with Austin, such an option is not really an “option,” but a last resort.

And here’s the other thing it could be, on the far end of the “spectrum of cystic lesions” I now have to worry about: it could be a cystic Wilms’ tumor. Who knew such a thing even exists, right? Yes, of course, there is another kind of Wilms’ tumor that I heard about for the very first time yesterday that is indeed fluid-filled. Great. Of course, most kids who have this type have it from the beginning. There is no research that shows that Wilms’ tumors evolve from one type to another. But (big but here) because Austin is literally one of a kind and no one has ever before had what he has (oh, what I would give for ordinary), we can’t completely rule that out.

So … what to do now? That is the question.

The various doctors (oncologist, radiologist, surgeon, nephrologist) all think we should just watch and wait. His kidney has always had shadows, I’m not sure if I’ve made that clear to you before. Even when we have “clear” scans, there are still shadows. That little kidney has been cut into, sliced apart, manipulated and manhandled on four separate occasions. So, yes, there are shadows on it, little swirls of gray that show up on the scan. Some of them we worry about and some we don’t. We usually watch to see if they change in any way. And this one has, albeit very subtly. It’s not dramatic at all, not some massive growth. But it’s darkened a bit and shifted position slightly so it touches the border of the kidney. The doctors agree that it’s not urgent, especially considering the potential harm of trying to definitively diagnose it. St. Jude’s will review his case again next week, so we’ll see if they have any new insight into what it might be or how to treat it.

And in the meantime, we wait. And we watch. We’ll do more scans alternated with ultrasounds. My mom asked yesterday if anyone was worried about the increasing number of scans he’s been exposed to (you know, radiation) and I said, “Wow, that seems like such a luxury, to be able to worry about some secondary cancer that might appear in twenty years.” As Jeff always says, “Let’s get to twenty years first.”

A friend sent me a poem about hope the other day. It called hope a fragile thing. And in a lot of ways, it is fragile and sometimes elusive. But it’s also surprisingly strong. And we will hold on to it as long as it will hold on to us.