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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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Perhaps you may be wondering how my little guy is . . . you know, the reason you all started reading in the first place.  Well, right now, he’s trying out a variety of brooms and mops and swiffers on the kitchen floor (not exactly helpful) while naked.  So, all in all, he’s great. 

We have his first post-surgery scan scheduled for the last week in June, which will involve the usual one-night stay in the hospital for hydration. It’s hard to know what to expect from this one; we will be hopeful, as always, that it comes back clear. They did place a titanium clip inside his belly at the spot where the tumor was removed so they’ll at least know where to focus their attention. The entire “episode” (which is a lovely way of describing those insanely scary three weeks) does indeed seem like a blip on the road to a full recovery. He acts like he always did and always does — silly and wild and full of life.

I took Braedan and Austin swimming on Monday, the first time since before the surgery. Austin knew he had to wait until his scar had healed so as we were packing our bags, he excitedly asked, “Awtin no have canther in tummy? Awtin all better?” Yes, sweetie, Austin is all better.

Mark and I are obviously willing to go forward as if things are as they’ll always be, as evidenced by the idea of moving to a big house and new neighborhood filled with lively friends for the boys.  Of course, we’re not fooling ourselves and know the possibility of another (or a first?) recurrence exists; we know we could be saddling ourselves with one house on the market and another huge one to take care of while also taking care of a sick child. But we just don’ t think it’s worth it to live life waiting for the worst thing to happen; it is not how we operate. We see a golden opportunity in front of us, and the harsh reality is that if Austin’s cancer recurs that’s gonna be awful no matter where we live and no matter what other stresses exist in our life. 

I think a lot abot the way we lived our year between the end of treatment and the “blip”: we lived it to the fullest. We absolutely celebrated what we believed was the end for Austin and for us. We were wrong, of course, and that was crushing. But it wouldn’t have been any easier if we had sat around all year admonishing ourselves, “No, we can’t go to Disney World; he’s not really cured yet,” “No, we shouldn’t laugh too loud, what if it comes back?” That wouldn’t have been right or good or fair, not for us and certainly not for the boys. So we laughed loudly and celebrated fully, we lived as much as we could.

And that is exactly what we’re going to keep doing every single day moving forward.

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