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.