Mostly Good

OK, I ‘ve just arrived home having only slept two hours last night so this one may be a bit garbled. But, exhausted as I am, I am breathing deeply and feeling pretty good.

Most important things first, Austin is out of surgery and in the PICU with his daddy and with his kidney (not sure which of those I love more at this moment). The surgery went well and the kidney appears to be functioning already. He is actually peeing, just a little bit, but pee is pee and pee is good (tell that one to your kids).

The lousy news (you knew it couldn’t be all good, now didn’t you?) is that the surgeon doesn’t think he got clear margins on the tumor on the first try, so some cancer cells were likely left behind. We actually met with the surgeon in a conference room during the procedure to decide whether or not we wanted to go ahead and remove the entire kidney as a result. We opted against that, upon the recommendations of both Jeff and the surgeon himself, who think that would be premature without pathology results. The reality is that cell spillage can happen in many surgeries and often without anyone even knowing it, so it was a risk we were willing to take yesterday and one we will continue to take today. We now await the pathology results, which should come back Wednesday or Thursday, to guide us moving forward in much the same way I described in yesterday’s post. The likelihood we’ll do flank side radiation (one ten-day round after Austin’s fully recovered) is pretty high. More on that after we’ve debriefed with all our doctors in the next few days.

Austin was a champ yesterday and last night. He fought hard against that nose tube, to the point where he broke blood vessels in his face and now has a smattering of tiny pink freckles on his cheeks. After three failed attempts, they let him drink the GoLightly instead. When his slow sipping wasn’t good enough for the surgical resident’s liking, another try at the nose tube was threatened and that seemed to do the trick. He chugged the stuff down, taking gulp after gulp for nearly three hours. By the end, he was taking a sip for each member of his family and then for each of his classmates and teachers and babysitters and friends — “Take one for Pauly! Take one for Owen!” You know little Austin has a lot of friends, so we managed to get it all down within the given timeframe. After a long and successful session on the potty seat, he slept through the night needing only one 3am diaper change and those bowels were sparklingly clean by morning.

Mark and I brought him to the pre-op room at 6:30 and he was carried away from us by a nurse an hour later. He gets a little dose of funny medicine through his IV before we hand him over and, boy, does that make it all more bearable. The little drunken sailor was giggling and swaying in Mark’s arms and couldn’t have minded the hand-over any less, making it infinitely easier for us to walk away.

Mark and I then spent the next eight hours resting (but somehow never sleeping) in our room, wandering around the hospital, eating unhealthy food (thanks Ann, that pepperoni bread was ridiculous — and I mean that in the best possible way), and awaiting periodic updates from the OR. We finally saw Austin again at almost 4 and he looks really good. He has loads of tubes coming out of his battered little body: a nose tube (finally inserted when he was under anesthesia) to suck up bile, a foley catheter so we can measure every last drop of that liquid gold, IVs in both hands, and of course, the lovely new dialysis catheter coming out of the jugular vein in his neck. I do not like this one bit and hope it is never ever used and quickly removed.

Mark is there now so I can update and shower and eat before returning for another three-hour shift this evening. It’s Mark’s turn to spend the night and my turn to get a few solid hours of real sleep before going back at 6 am tomorrow. If our small champion continues to do well, we could be back in his room, which is being held for us, in just a few days. There is a spectacular galaxy of wishing stars hanging from his ceiling, and I’ve been told it’s about to get bigger.

And in case you need proof that Austin will indeed pull through this with his spirit intact, he turned to me in the PICU and came out briefly from under the cloud of morphine to say, “I want a juice box.” Of course that’s not allowed yet, but the boy has a kidney — one that’s hopefully cancer-free. What more could we ask for?