If you were a fly on the wall in our house three weeks ago and then again today, you’d have trouble noticing anything different. Two little boys playing, tussling over toys, begging for jelly beans (well, there are definitely more jelly beans than there were three weeks ago!), two parents watching over them, trying hard to balance the easy fun with important life lessons. You may notice the older son whining a bit more and the younger one struggling to sleep at night. You may notice the parents looking a little more pensive or a little more tired (see above statement re younger son struggling to sleep at night). But you would never ever be able to guess the emotional turmoil, the seismic shifts in perspective, that had taken place in the course of fifteen days.
The good news right now is that the doctors seem to be considering this episode something other than a recurrence. “Residual tumor” I think is the way to describe it. It can be quite confusing for those of us not trained in oncology but it seems that some teeny tiny microscopic cancer cells were left inside Austin’s belly following the October 07 surgery. Now remember, that surgery removed four tumors and 40% of his kidney. And the surgeons were trying very hard to remove as little of the kidney as possible, so they may have left behind a few (invisible) cancer cells here or there. Those little cells would have then been treated by chemo for almost five months (which is why the tumor they removed last week looked like it had been through treatment) and then, ever so slowly, they would have grown (because Austin’s type of Wilms’ was mostly resistant to chemo) from teeny tiny almost non-existent cells to a one-by-two-centimeter tumor that finally showed up on a CT scan one year later.
This little fact (whether or not this is actually an official recurrence) is enormously consequential in terms of Austin’s longterm prognosis. The survival statistics for Wilms’ tumor recurrences are horrific, so awful that Mark and I only discussed them in hushed tones, as if to speak them aloud would have made them more true. I certainly couldn’t bring myself to type them here — it was all sad enough to begin with. But now that we feel a little safer, here they are:
Depending on which piece of research you’re reading and which category of Wilms’ you’re talking about, the five-year survival rates after recurrence range from 23% to 43%. Twenty-three percent. Or the good stuff, the research that we actually felt optimistic reading: forty-three percent! Basically, for every 100 kids with a recurrence of Wilms’ tumor, three-quarters of them die.
Not acceptable, not even close.
Imagine, god, just imagine if someone offered your child a sippy cup of juice and there was a 67% chance that it was instead a deadly poison. Or if your pediatrician suggested a new vaccine that kills kids 57% of the time. Right. You’d run screaming for the door. No parent should have to look at numbers like that in regards to their child’s life. That is not right.
But that’s where we were two weeks ago, that is the thought we lay down with each night, often with Austin asleep between us. That is the thought we carried with us through each day, trying to keep things as normal as possible, trying not to let Austin get away with hogging all the toys, trying not to yell at Braedan if he so much as looked sideways at his suddenly fragile little brother. There was a sense of desperation — how long will it take? How long do we have? But there was also a slow and reluctant acceptance. We simply had to face reality, we could not go on with our heads in the clouds refusing to see what lay before us. We were both, for the very first time since all this cancer business began, we were both starting to accept the idea, the possibility, the probability, that we might live our lives without him.
And now, suddenly, remarkably, we find ourselves almost back where we were three weeks ago. A little blip, a slight detour on our cancer journey. Austin is recovering, there is no treatment plan looming ahead of us (and cancer without cancer treatment doesn’t seem so bad), the official stats should be back in the 80% range. And life goes on. The boys are none the wiser: Austin is sore and Braedan hyper, but a few weeks from now, all will be well again in their world.
But Mark and I know. Mark and I will live with that feeling for a long time. Our time with him feels a little more precious, our hold on him a little more tenuous, nothing is certain, there are no guarantees.
That fly on the wall might not be able to see it, but we are changed.