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Mark said that it took him about ten days before the bad news about Austin really sunk in and he could fully grasp the possibility of what lay ahead. Now it’s taken him another ten days for the good news about Austin to truly sink in so he can fully grasp the possibilities that lie ahead.

It is a fascinating process, how your mind can so quickly and completely adapt from one reality to the next. I was so there — in that worst place — so quickly, already figuring out the weekly schedule for dialysis, planning the activities we’d engage in for those four hour stretches. My mom was too — she had a mental list of books they’d read together and games they’d play. Mark and I discussed getting a Lego table that could fit nicely on Austin’s lap so he could contentedly build while his blood was being removed and cleaned by the machine whirring next to him. It’s a classic example of Whoosh … one minute your life is normal, the next it isn’t. And the next, it is again.

We’re still adjusting mentally. Still feeling a jolt of relief and giddiness when we remember some summer plan that we’d canceled in our minds. I feel like we’ve come back from the dead. Like a scene from a movie or book when a beloved character dies and you’re left there thinking, “No! This can’t be . . .” and then lo and behold, the heart monitor jerks back to life after flatlining or the hero rushes in with the magic serum or the character claws their way out of the shallow grave and voila! All is better. And you, as reader or viewer, are both thrilled and also disbelieving — “Oh, come on! As if that could actually happen”

But it actually happened.

There were a few reasons the possibility of cancer seemed so bad this time. I think, for one, it was simply that we’d gotten so close to our goal, just inches away from the finish line, almost touching the two-year trophy before it was ripped from our hands. It somehow seems like it might have been easier if it had happened at the 18-month or 21-month marks, like not such a tease.

There was also this terrible reality hovering in the back of our minds, which neither of us wanted to voice aloud, that we were somehow responsible. That our decision two years ago to keep his kidney was wrong and now we had to do it all again. Mark and I both said back in 2010 that we would take whatever consequences came our way. And of course, we knew in our heads what those consequences were. But that doesn’t make it any easier when they actually occur. I couldn’t help but think that we’d be almost done by now if we had taken the kidney. His two years of dialysis would be coming to an end and we’d be spending this summer dealing with his transplant — lots of time in the hospital, absurd amounts of daily medications, worry and more worry. But we’d still feel like we’d accomplished something. So I was left wondering if it would be worse for him to have dialysis now that he was older, now that he’d be missing so much “real” school (I would have had to pick him up at 11:30 three days a week). With all the new friends he’d be meeting for the first time, he’d be known as the sick kid, the one who never feels well, who misses all the fun stuff. How long would that identity have stuck with him before he could replace that image in the minds of his peers with the strong, vibrant child we all know?

And then, of course, the big one: the intense and overwhelming fear that this was it. I mean, how many times can you beat the same cancer? We’d done radiation and chemo and surgeries and it just kept coming back. How smart is it? How powerful? Back in December 2009, when we were trying to determine a plan of action to treat that relapse, Mark and I asked our oncologist what chemo drugs would be available in the future if the three we used for those six months didn’t work. (You don’t give the same drugs for more than one protocol; Austin had three drugs during his first eight months of chemo and then three completely different drugs during his last six months of chemo.) The response? “Palliative chemo.” Uuuuummmmm, okay, I know what that means: “Cure” is no longer the goal, palliative chemo is simply about reliving symptoms and prolonging life . . . by a little bit. A few extra months. So, cancer again would not have been good. To say the least.

But now I’m dwelling and I don’t need to. We’ve come back from the brink, no longer dangling over the edge of the cliff. I feel a thorough and deep sense of calm, like nothing really matters beyond my two healthy children bouncing on the trampoline and my pretty awesome husband mowing the lawn.

I must be the luckiest.

I could get used to this.  Days that feel long and lazy like the middle of August.  Barbeques and family cookouts and marshmellows roasting over the open fire. Hospital visits that happen only once a week.  Reserving rooms for actual weekends away and getting pool passes that will actually be used.

Yeah, I could get used to this.

Of course, the weight of the world still sits on our shoulders, a decision looming near with consequences that could last forever. But for right now, for this long weekend, for yesterday and today and tomorrow, we are letting the kids be kids and just sitting back and enjoying it all.

Austin has recovered over the past ten days in ways we didn’t even know he needed to. Despite the fact that he’s been happy and energetic all along, he is suddenly that much more happy and energetic, bounding about with a fine fuzz of hair growing on his head. We are counting down the days until the removal of his PICC line, which will happen this Thursday after another eight-hour blood transfusion. He has plans to go swimming the very next day (if not that very day) in my parents’ pool even though I don’t yet know how long a “recovery” period the docs will insist upon.

Mark and I continue to go back and forth between keeping the kidney until it completely peters out and removing it preemptively. Well, no, Mark continues to sit squarely in the middle while I continue to thoroughly endorse one choice one day and the opposite the next. (Typical behavior for both of us.) We return over and over to “First, do no harm.” And while removing the kidney might (might) be safest in the long run, it will no doubt (no doubt) do harm.

There are so many little (and not so little) side effects that trip me up.  Kidneys are necessary for growth and children on dialysis do not grow much, if at all, which I find very upsetting. I mean, we’re talking about the years between four and six — that’s some important growing time! Of course, he ought to experience some “catch up” growth in the years after transplant but that won’t make up for all of it.  The sheer number of medications he would be dependent on for the rest of his life is another barrier for me. I hate the idea of pumping his body full of drugs day in and day out that will impact every aspect of his development. The anti-rejection drugs cause, among other things, early osteoporosis and brittle bone disease (come on, can you imagine Austin with brittle bone disease? He’ll spend his life in a body cast!). They cause high blood pressure too, something we’d been hoping we’d be able to fix before it took too huge a toll on his overall health. Steroids and antibiotics and human growth hormone and the list goes on and on and on.

But then we look at the other side, the other possible outcome and we think. “Sure, bring on the drugs. We’ll trade taking 42 medications each day to keep our bright boy.” We’ll trade anything, we know that; that part is not up for debate. It’s the big “What if” that we constantly debate: What if we’ve already done it? What if we’ve already rid his body of his cancer and taking that kidney out would only harm him? I mean, what did we do the last five months of chemo and radiation for if not to get rid of the cancer?

Ugh! No easy answer. But here are the things that lull me into my happy-mommy, I-love-summer mood:

My beautiful boys squealing with delight as they get pushed higher and higher in the tire swing their daddy built for them:

This one was taken a few weeks ago, hence Austin’s hat and mittens!


My sweet boys attempting to sleep out on Braedan’s back porch now that the railings have finally been installed, until they decided they were scared of “dogs and owls.” Really? Dogs and owls?

My smart boys enjoying the gift of a summer evening rainstorm that finally cut through the thick humidity of the day:

Yeah, I could get used to this.

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