Here we go again.
Mark and Austin just left for the hospital and I will meet them this there evening (after updating, running and having dinner with at my parents’ with Braedan). I will stay the night and Mark will return bright and early tomorrow morning. This afternoon, Austin needs a “bowel prep” which is about as lovely as it sounds. They will literally flush his bowels out, which first requires the insertion of an NG tube. Another family favorite, this involves one of us (thankfully Mark this time) holding him tight in his arms facing outwards while a nurse (or two or three) stick a tube up his nose and down to his stomach. Then they pump him full of “GoLightly” (I’m not kidding about that brand name) and he poops all night long. Oh, joy.
He’s due in the pre-op room tomorrow at 6:30, with surgery scheduled to start at 7. I imagine we won’t see him until at least 3 pm, although the doctors will call us periodically from the operating room to update us on his progress. After surgery, he’ll be in the PICU for anywhere from a few hours to a few days, depending on how surgery goes and how (and if) his kidney is functioning. After the surgery that removed his right kidney in September 07, he was only in the PICU for eight hours before returning to the regular oncology floor. But after the first kidney-sparing surgery in October 07, we were there for four days. The nice thing that time was that we were able to keep our regular room the entire time which gave me and Mark somewhere to shower or nap, plus allowed us to leave the wishing stars hanging from the ceiling awaiting Austin’s return. I’m sure the nurses will try to accommodate us in this way again, but it all depends on how crowded the floor is and if they can dedicate a room to a patient who isn’t actually in it.
The PICU is a pretty miserable place. You have no privacy, only a glass wall with a curtain pulled across it. There are lights and beeping machines at all hours of the day and night, not to mention the constant PA announcement requesting emergency help of some sort or other for some child or other. Rest is hard to come by, for both parent and child. So I do hope our time there will be short.
And now I focus your attention on what we’re up against:
There are so many little milestones we must reach before we can claim victory over this beast one more (one final) time. First, the surgery itself. The doctors need to be able to remove all the cancer they see, while leaving the kidney intact. This is an extremely complicated procedure and there are many things that could go wrong. Remember how all the scar tissue has caused adhesions and how the kidney is now suctioned up against the spleen? The kidney could fail (probably by bleeding out) during the actual surgery and then be removed. The doctors could also find more cancer that they’d expected and opt to remove the kidney (after calling us first).
So, if he makes it out of surgery tomorrow with any kidney at all, that’s one small step in the right direction.
Then the kidney has to work, which could take some time. He’ll have lots of bloodwork and we’ll be watching that pee output with an eagle eye for days to come. He may need temporary dialysis to jump-start the kidney. But if it keeps chugging along, that will be our second small success.
The next thing we have to worry about is the pathology of the tumor(s) they’ll remove along with a sampling of lymph nodes. These results, which will determine future treatment, should come back by Thursday. They might tell us that the tumor(s) is the same rhabomyomatous type he’s had in the past which would mean no need for chemo but maybe one three-week blast of radiation (which, yes, could destroy the kidney we worked so hard to save). The results could tell us it’s a “regular” Wilms’ tumor (which we don’t expect) necessitating chemotherapy. They could even tell us that the tumor has unfavorable histology (or anaplasia or displasia) which you may remember me describing as psychotic cancer cells as opposed to the more normal (and treatable) bad cancer cells. If that was the case (again something we don’t expect), we would go back in and remove the rest of the kidney just to be safe.
And then there’s this possibility, which is what I want you to wish for (even if you can’t pronounce it): It could be a nephrogenic rests, those pre-cancerous tumors. If this was the case, he’d need no additional treatment and we’d all pat ourselves on the back for getting it out of him before it turned into another Wilms’ tumor.
So you can see, we have many hurdles to leap over, many mountains to climb, many battles yet to fight. But if anyone can do this, Austin is the guy.
He told me last week that he could do anything. It was when I voiced concern over the height of the furniture he was about to dive off. But he looked at me and stated with the clear conviction of a three-year-old, “It’s okay, Mom, I can do anything.”
So here he is, poised at the top, ready to dive. And he can do anything.