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I was ordering photos from Snapfish tonight and finally uploaded some off of Mark’s phone that he took last December. So I was quietly scrolling through picture after picture of Austin in the hospital —  sad pathetic faces as he was recovering from surgery in the PICU, goofy silly smiles as he was playing with Braedan on the movable hospital bed, contented sleepy eyes as he gazed up at his glittery wishing stars . . . and I was pretty amazed, yet again, at how far we’ve come. How that seems like a lifetime ago and also seems like just yesterday. How it feels like we were completely different people living in a completely foreign world, but is sadly so familiar.

And then I finished my slideshow, a bit dazed, and Snapfish popped up  to announce their great deals, as long as I ordered by midnight, 30% off and free shipping (!), (it is Cyber Monday, after all): I could make a flipbook of my images or have it printed on flowery postcards or even emblazon it across a ceramic coffee mug! Look at all the incredible things I could do with my image! They even had samples, all right there in front of me, with my very own photo already inserted into all these creative little trinkets. What great value! Wouldn’t this be fun?

Only here is the image they were bombarding me with, this is what I could drink my morning coffee out of:

 

Oh dear. All I could do was laugh. I brought Mark in and he laughed too. It’s okay now, you know. It’s all okay.

Just watch out for your holiday card this year . . .

Things are going fairly well. As is so often the case in these situations, it’s the little things that are causing the most pain (literally). Austin was extremely irritated by the NG tube, which thankfully was removed this morning. His next complaint was his foley catheter, which caused my visiting brother pain to even think about. During rounds, the PICU docs agreed it could be removed but then needed approval by both the surgeons and the nephrologist (kidney doctor). So, after a few hours of calls back and forth, that too was finally removed. They are now measuring his diapers to record urine output, which has been slowly but steadily increasing. The other measures of kidney function look pretty good; one has risen but seems to be leveling off, as we’d hoped.

But now there’s something else bothering him. He’d been complaining all morning about his right eye. At first, I thought it was just gunky from being crusted shut but nothing seemed to ease his discomfort. I casually mentioned it to the PICU attending when she saw me sitting there with a warm washcloth held to his face: “His right eye seems to hurt a bit,” and she stopped what she was doing and said, “What? His eye hurts? He must have an abrasion!”

I briefly imagined them whisking him off to eye specialists for yet another procedure but quickly learned it’s not uncommon to get an abrasion during surgery. I don’t really understand why especially because they tape his eyes shut the entire time (never knew that before either; they sure don’t do that on Grey’s). Anyway, all he needs is some Bacitracin and then they’ll tape it shut while it heals. Now he’ll have an eye patch too!

He hasn’t smiled yet but I am hoping that once the eye is taken care of and he gets the popsicle he’s been given permission to eat, he’ll grant us one of those beauties. We expect to move back to our room by the end of today which is great news. We’ll all be much happier there and he’ll be thrilled with the additional stars that have appeared in his sky over the past two days.

So now we keep moving slowly forward, healing physically and emotionally. We still feel generally positive about yesterday but also have that sense (yet again) that there is no one simple answer, no single magical procedure that is going to make it all okay. For twenty-seven months now, we’ve been awaiting the day when we can say, “All better” and have it ring true. We’ve said it a few times prematurely of course. With radiation looming on the horizon and the risks that accompany it (kidney failure, secondary cancers), I wonder if we’ll ever really reach the end of this journey.

But we carry on. And right now, all we really need is a smile.

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, who think that would be premature until we have the 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 3 am 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 junk 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 tough little body: a nose tube (finally inserted when he was under) 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 form 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?

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.

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