Mark, Austin, Krissy & Braedan, August 2008

Mark, Austin, Krissy & Braedan, August 2008

I am the luckiest.

I have a family who stands beside me, backs me up and cheers me on. I have a rock solid relationship with my rock solid husband Mark. I have friends who encircle and enrich me. I have a strong and healthy and able body, despite having had type 1 diabetes for twenty-three years. I have everything I need and most of what I want. And I have two little boys, Braedan and Austin, who fill me with delight and wonder every single day.

But Austin is not the luckiest. Diagnosed with bilateral Wilms’ tumor, cancer in both kidneys, in July 2007 when he was just ten months old, Austin has been forced to endure more horrors in his short life than most of us ever will. But he is a survivor. After eight months of treatment, Austin has been in remission since March 2008.

The months, and now years, following his diagnosis have taught us a lot . . . about fear, hope and strength, about each other, ourselves and our boys, about life, luck and love.

And I’m ready to share.

Updated in March 2010, because that above one is way outdated: Here is the Cliff’s Notes version of the past eight-plus years, divided into three rounds.

Round One began on July 30, 2007 when Austin was diagnosed with bilateral Wilms’ tumor, cancer in both his kidneys. His treatment lasted eight months and included four abdominal surgeries, the removal of his entire right kidney and 40% of his left, and twenty weeks of chemotherapy. The details of that round are summarized on the Austin’s Story page, which is a seriously shortened version of what I wrote on his Carepage between August 2007 and March 2008. Excerpts from those months can be found interspersed throughout this blog as well, especially in this post.

Round Two coincided with the launch of this blog and took place in March and April of 2009. After thirteen glorious cancer-free months, a CT scan revealed a new mass floating in his left abdominal cavity (not in the kidney itself). A biopsy confirmed that it was indeed a Wilms’ tumor and we were left reeling, certain that his cancer had recurred.  The tumor was removed in yet another major surgery after which we learned that it was actually an old tumor, and instead of a dreaded recurrence, this episode was labeled the much vaguer (but much better) “residual cancer.” The whole thing lasted a mere three weeks and we suddenly found ourselves back where we’d started.

There was another intermittent event between Rounds Two and Three: In October and November of 2009, we began watching yet another shadow, worried that it might be cancer and necessitate the removal of that left kidney. We thought we had resolved the issue when, lo and behold, the shadow changed drastically which brings us to the present, Round Three.

Round Three officially began in December with the decision to go in and attempt to remove this new tumor while also hoping to salvage what remained of the kidney. I won’t go into all the nitty gritties because they’re posted here throughout December, but the surgery was successful in terms of the kidney but not so much in terms of what it showed us about the cancer. Austin had indeed relapsed, his cancer was back and more vicious than ever. After some gut-wrenching back and forth decisions about whether or not keep the kidney, Austin began another protocol of chemo and radiation, which he finished in May 2010.

But (and a big but, at that), after all those months of sledgehammering Austin’s body, he was in stage 4 renal failure. Which meant, that as we neared the end of one journey, we seemed just about to begin another: four hour stretches of hemodialysis every other day for two years. Followed by a kidney transplant.

We had toured the dialysis clinic, we were about to schedule the surgery to remove the kidney and place the necessary catheters when Mark, with Dr Auletta ‘s blessing, suggested that we take the summer off, give everyone a break — Austin, Braedan, us – let us rest for a moment, and just see what happened.

And what happened was miraculous.

Every week when we went in for labs, Austin’s kidney function improved. A little bit here and a little more there. Numbers that were supposed to be high went up, numbers that were supposed to be low, went down. We decided one more time to keep that kidney and see just how long it could last.

It’s all here, in a crazy and jumbled fashion. These posts are filled with good news and great news, bad news and horrible news. There is hope and laughter and tears and fear and love and lots and lots of living.

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