Everything changes on July 30, 2007.  A once ordinary life, a once happy family of four, is flipped upside down with the discovery of six tumors on the kidneys of my ten-month-old son Austin.   The devastating reality slowly penetrates—our child is sick, our child has cancer.  Bilateral Wilms’ tumor to be exact, a treatable and beatable pediatric cancer that affects a mere twenty children nationwide each year.  After an initial eleven-day hospital stay at Rainbow Babies’ & Children’s, during which time Austin is held in our arms nearly every second, we head home, ready to adapt, to create a new routine, to beat this beast.  We are as optimistic as ever, excited for chemo to begin working its evil magic inside our small boy’s body.  We remind ourselves to focus on the more subtle needs of our healthy son as well as the more obvious needs of our sick one.  We feel the strength of family and friends around us.  And we know, despite this stunning new development in our lives, we know how very lucky we are.

And then suddenly, everything changes again, from normal-cancer-bad to way way worse.  Cancer that was once predictable and curable morphs into something no one expected, something scarier and more dangerous, when Austin’s primary tumor grows by 50% after five weeks of chemo. Two weeks before his first birthday, his entire right kidney and a 21-by-15-by-10-centimeter tumor is removed in an eight-hour surgery. And then we wait, six long days for pathology results that will determine whether our child will live or die.

And on September 11, a day synonymous with tragedy, we learn the incredible news that he’ll be fine. The pathology of the cancer is still favorable, still one we can beat. And this skinny child, lying in my arms with an eight-inch scar across his belly, with tubes in his nose, hands, feet, chest, with five tumors still growing on his one remaining kidney, this child will be fine.

 

Austin's first birthday, September 2007

Austin's first birthday, September 2007

After a painfully difficult recovery from the surgery, we’re sent home for five days to celebrate Austin’s first birthday. We go to the zoo and on picnics, we take pictures and visit with family, we make the most of every moment we have. Then we’re right back in there for another sugery, this time removing four smaller tumors and 40% of the left kidney, followed by days and nights in the PICU, temporary kidney dialysis, life-threatening hospital infections.

Out of this tangled mess of medical procedures and mysterious complications emerges an intimate portrait of a family: Austin, the baby with wounded body but intact spirit; Braedan, the wide-eyed big brother who embodies that childlike ability to find beauty in life’s ugliest moments; Mark, the steadfast husband and father, as committed to protecting his healthy son as his sick one; and me, the mother lion, sniffing out the danger lurking near my family, clawing desperately at the faceless beast that stalks my child.

But we are not the only players in this cancer drama.  Over time others are revealed: the young oncologist, cautious and gentle with the patient but unflinching and aggressive against the disease; the comforting nurse practitioner who happens to be a childhood playmate; our friends, those already close to our hearts and those pushed much closer in the intensity of the moment; the small heroes we meet and mourn during our months on the oncology floor; and our parents and siblings who find room in their already busy lives to help and to hold—both our mothers springing into action, existing in overdrive with little room for sadness while both our fathers shake their heads in disbelief and cry, angry and frustrated at their inability to protect their children and their children’s children.

As I detail our daily struggles on Austin’s Carepage, another layer of characters joins the story.  From my former teachers to my former students, from our nearest neighbors to our farthest-flung friends, from those we’ve known our entire lives to total strangers, the readers of Austin’s Carepage become a supporting cast in the truest sense of the word.  A grand give-and-take ensues with both sides teaching and learning, giving and receiving, strengthening and being made strong.

The seasons pass, from summer, to fall, and on through the long slow winter.  For every step forward, there is one back.  On the cusp of spring, we near the end.  And eight months after that fateful day when everything changed, chemo is over and scans are clear and we find ourselves where we began: a family of four, alive, intact, together.  The scars remain, some visible, some not.  They may never fade, but we know, after all we’ve been through, after what we almost lost, we know we are the luckiest.

That’s what we thought. For an entire year, we believed every single day that we were the luckiest. I wrote a book, a 250-page memoir with a beginning, a middle and an end. The god-damned last page was typed up, edited and saved. A happy ending.

And then it came back.

Updated March 22, 2010:

Here is the Cliff’s Notes version of the past two-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 2009 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 we are currently partway through.

And now, another update in September 2011, Austin is sixteen months cancer-free and on the verge of celebrating his fifth birthday. He has half of one kidney and is officially in Stage 3 renal failure, but it’s functioning, chugging along, and every day with a working kidney is a good day in our book.  Life, indeed, goes on.

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.