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Two years ago, on May 3, 2010, Austin and I had an unexpected overnight at the hospital due to high blood pressure, described here in a post aptly titled The Wrong Side of the Window. We were stuck in that god-awful limbo between choosing to remove his kidney and continue with chemo or venturing blindly into the post-treatment world never certain when the kidney would fail or when the cancer would return.

And then, three days later, I wrote this one, (also aptly titled) Never-Ending. Read it because, well, it definitely captures the mindset I was in back then: the fear, the utter exhaustion and frustration and resignation I felt. What we believed was the inevitability of kidney failure and dialysis looming over us, the desperate feeling I got as I looked toward the future, Austin’s future, our future. It just didn’t seem bright.

Yet, my god, it has been so very bright. These past two years have been wonderful, “normal,” right. He has had the chance to just be — which is all I ever wanted for him — to just be himself and be left alone by doctors, to live his life unencumbered by the burdens of disease and hospitals. And we’ve all had that chance: Braedan to be a regular kid, to fight with his little brother without worrying that he’s fragile, to be happy or sad or proud or scared or whatever, and not have any of it tinged by being the older sibling to someone we feared might die. Mark and I have had the chance to just be, be the parents we were meant to be (which is not to say that those parents are anything close to perfect — in fact, we were much more thoughtful and attentive parents when Austin was sick, but anyway …). But just to be normal parents who get annoyed with their kids and yell sometimes when they shouldn’t — and to feel lucky for that. We’re lucky for everything we’ve had in these past two years, every normal good or bad moment.

We read Sylvester and The Magic Pebble tonight and the last lines struck me, as they always do. It’s after Sylvester has been released from the rock and is reunited with his parents who lived, for almost a year, with the belief their son was dead: “When they had eventually calmed down a bit, and had gotten home, Mr. Duncan put the magic pebble in an iron safe. Some day they might want to use it, but really, for now, what more could they wish for? They all had all that they’d ever wanted.”

On the eve of tomorrow, we still have things to wish for (I sure would not be locking any kind of magic pebble in any kind of safe just yet). But it’s true to say that we all have all that we’ve ever wanted. And come what may, it’s been a damn good two years.

First things first, watch Fox News at 6 tonight to see me and Austin down at the hospital today (what is it with me and Fox News? I guess they’ve never checked my voting records!).  Thanks to his role as a St. Baldrick’s Ambassador Kid, he is becoming quite the little celebrity! As soon as I get the video clip, I’ll post it here for those of you who live out of town (or only surf the blogosphere after-hours).

And now, the real first thing first: Today’s results were all good.  Well, not exactly all good (keep reading), but good in the ways that matter most. His kidney function is holding steady, which is fabulous. His CT and ultrasound show no change to his lungs, kidney or liver . . . also fabulous. There is no indication of any cancer anywhere inside his body.  So, in terms of Wilms tumor, Austin is healthy as can be. And in terms of kidney function, he is as healthy as can be expected.

But (ah, the dreaded but), there are some other troubling issues. Only slightly troubling, mind you, especially speaking in relative terms. The radiologist thinks that the liver looks like it’s “coarser” than in the past.  Not anything inside the liver (that old spot has remained unchanged since August 2010), but the make-up of the liver itself.  He just felt like it looked . . . different.  Vague, I know. Dr. Auletta wasn’t sure what to make of this either, especially since Austin’s liver function is and has always been normal.

The other thing is that there seem to be some . . . stuff in his stomach.  It could be calcium build-up from all the Tums he takes to bind out the phosphorous in his diet or adhesions due to all the surgeries he’s had (not a terribly unusual side effect of being cut open and manhandled that many times). They did recommend doing an upper-GI test, just to see if there’s any action we need to take before an actual blockage occurs.  I’ll learn more about all of these things in the next few days after the various doctors on Austin’s team are consulted and a formal report is issued.

All in all, it’s fine. What matters most is that there’s no cancer and a still-working kidney. But, as I said to the news reporter today, two-thirds of the children who survive their cancers live with long-term health problems as a result of their treatments.  The very things that made Austin better are now the very things that can make him sick. We know that his cancer story will never be over, even if the cancer itself is gone. He will never actually be the normal kid he appears to be.

But, hey, we’ll take him, abdominal adhesions and all.

If it’s not one thing, it’s another.

Now that the hand has (mostly) healed and the kidney is (mostly) bouncing back, we’ve allowed ourselves to fully embrace our normal lives. We’ve allowed ourselves to believe that we lead normal lives.

But we don’t.

When Austin had all his scans two weeks ago, his hemoglobin was low. Not below the threshold that required an immediate blood transfusion, but on its way. His doctor recommended coming in the following week which I pushed off until this week because I didn’t want him to miss camp. And then over the weekend, he got sick. A fever, sore throat, complaining about his ear hurting, long and fussy nights. So yesterday, we had to go to the clinic anyway to match his blood for the transfusion and I asked for a doctor to see him just to be safe.

Weeeelllll: Fever, ear infection, suspected dehydration (which didn’t turn out to be the case, luckily) and most likely, anemia. So, you know what comes next, right? They placed an IV in his arm, started him on fluids and IV antibiotics, and we waited. And waited. I sat in a small chair with this big sleeping boy, sweating out his fever, in my arms. The hours ticked by until they found us a room on the over-crowded in-patient floor and over we went.

Another long and restless night, with Austin waking up every time his blood pressure was taken or every time he rolled over and became tangled in his IV line. Then he’d request that I join him in his bed, which was many times more comfortable than the rubber bouch (bed-couch) I usually sleep on. But by now he was sweating out the IV fluids and soaking the sheets underneath him, so I was back and forth, back and forth between bed and bouch, until we both finally slept soundly from 5 until 8 (Austin until 9:30 actually).

His fever has passed, and his kidney numbers look fantastic (which, of course, is all that really matters) and he is finally, just now, starting his transfusion, after a long and boring morning quarantined to our room. The blood, lest we forget, takes seven to eight hours so it may be past his bedtime but I will fight to be released as soon as he’s done.

One more night, one more time, one more brief trip down this dark road. Every time I dare think we are passed the danger zones, every time I dare imagine that we have a wide open future ahead of us, fate or bad luck or something steps in and snaps us back to reality. Not so fast, it says. You may feel normal every now and again, but you are not.

But, despite hospitalization for every little ear infection and sore throat, I hold tight to the belief that we have a wide open future ahead of us. That one I will let go of.

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