I realize I often start conversations or pitch ideas on here but then never follow up on them. So, I’m going to take a few minutes to tie up some loose ends:

1) Thank you for your comments about why you read. Those, especially those that highlight the universal mothering/parenting aspect of my story, will help me rewrite my query letter, which I will get to one of these days . . . you know, after the walls are repainted and the closets reorganized and the house spotlessly clean and ready for the onslaught of potential buyers . . . yes, then I will have the chance to sit down and rewrite that query.

2) Thank you for the many very practical suggestions about how to help Austin gain some independence and me maintain some sanity.  There is a different language used by those of you who are professionals in the field of child development and it is helpful for me to hear my frustrations and potential solutions rephrased in your terms. I also think it’s good for us to be home (which we now are) and have our usual distractions and diversions . . . and daddy!

3) I also wanted to tell you about the Open Mic event my mom and I went to at the Chautauqua Institution. The Institution, for those of you who don’t know, well, geez, I don’t even know if I can accurately describe it but let’s just say it a learning community. It’s like a whole neighborhood, a little town enclosed behind gates dedicated to the arts and religion and academic pursuits. Anyway, my mom has taken some writing workshops there over the years and belongs to the Chautauqua Literary Arts Friends, of which I am now also a card-carrying member. So this was one of their annual events, a literary feast (to which we had to bring a food featured in a book; I brought honey cornbread from The Secret Lives of Bees) and an open mic.  Most of the people were reading poetry, some funny, some moving, and before I knew it, my name was called and up I went, ready and eager to share my story. I read an essay (which I’ve copied below) that I originally wrote for a contest by Real Simple magazine that asked readers to describe the most important day of their lives. I was really pleased with my entry and consoled myself when some other winner was announced by acknowledging that I broke the rules and wrote about eight different days over a thirteen month period. Mark rightly pointed out that if a group of editors sat around debating half a dozen of the best entries, it would be easy for them to eliminate mine on that fact alone. (It was much easier to accept this reason, over any other, for why I didn’t win.)

Back to the open mic, I surprised myself while I read with how emotional it was for me. I’ve told this story so many times, in so many forms, even in front of large groups of people, and so I thought it would be easy. I had just read the essay to myself the night before and it didn’t pull any heartstrings for me, having read these words zillions of times over. But standing up there, in front of these friendly and encouraging fellow writers, people leaning in to me, inching closer and closer as I recounted one dramatic moment after another, was very moving. I got a lot of positive feedback afterward, people coming up to hug me and tell me their own sad story and praise my writing, so all in all, it was a pretty cool experience.

And without further ado, here is The Most Important Day of My Life:

July 30, 2007: This must be the most important day of my life. It is certainly the day when everything changes. The day six tumors are discovered on the kidneys of my ten-month-old son Austin. The day that starts out like any other and ends on the pediatric oncology floor of our local children’s hospital. The day that looks like a big fat black smudge down the center of the page that is my life, separating everything into before and after.

August 1, 2007: Things are starting to come into focus, a sharpness, a clarity is replacing the fog that has lain over us for the past two days. Now it’s official, the biopsies prove it—Austin, my second son, my baby, has cancer.  But there is good news too: the pathology reveals that his tumors are favorable, a medical term that mirrors its non-medical meaning. Favorable we can treat. Unfavorable is, well, unfavorable in every sense of the word. So this day, the official day of diagnosis, must be the most important day.

September 5, 2007: After eleven days in the hospital, we’ve now been home for four weeks. We’ve started to wrap our heads around this shocking new reality; we’ve slowly begun to reconcile the idea of this dreaded, deadly disease with our lively, lovely child. The routines are falling into place, the kicked-in-the-stomach feeling we get each time we remember our child has cancer is fading. We’re excited to have completed the first four rounds of chemotherapy, eager for it to cast its evil spell on the tumors inside his small body. We are still standing and we are as optimistic as ever.

But then things change, all over again, from normal-cancer-bad to worse, way worse.

So today we’re back in the hospital, having just returned from a CT scan when a parade of doctors marches into our room. You know you’re in trouble when it takes six people to break the news. Two oncologists, a surgeon, our nurse practitioner, our floor nurse, and the beloved intern Ted who was assigned our case on the very first day. Poor Ted, who just stopped by to say hello and is suddenly stuck in the middle of this intense and intimate family drama. Mark and I are seated, Austin asleep against my chest, everyone else standing. We breathe, we look at each other. We’re ready, give us the news.

But we’re not ready, not for this news. The tumor on his right side has grown, big-time. What we already thought was huge at fourteen-by-seven-by-seven centimeters is now twenty-one-by-fifteen-by-ten centimeters. Why did I never learn the metric system? I can’t even picture how big that is! Oh god, it grew by fifty percent, fifty percent. Finally, they ask if we have any questions. Questions? Yes, we have a few, like why did this happen and what about chemo and why didn’t anyone notice and is he going to live? That’s the question, the only real question: Is Austin going to live?

But there are no answers. No one is sure why, but the tumor obviously did not respond to chemo. We now face the very real possibility that Austin’s cancer is much worse than we first thought. That something rare and unexpected, something scary and deadly, is happening inside his little body. That the initial biopsy didn’t give us an accurate picture of the kind of cells making up his tumor. We now expect a different pathology, not so favorable.

Austin will have surgery this Friday morning to remove his right kidney and the tumor, which will then be biopsied again. The results of that will give us the answers . . . to all our questions: Why? What now? And will he survive? We will develop a new treatment regimen for him once we get the pathology report, no one is giving up. There are things we will do. We will do every thing there is. But this day, September 5, the day of diagnosis all over again, must be the most important day.

September 11, 2007: The tumor and the kidney it devoured came out last Friday, removed in a five-hour-long surgery. A six-pound weight lifted out of his twenty-one-pound body and off our shoulders, one tiny step in the right direction. But today we learn the news that matters. Today’s pathology results will define the rest of Austin’s cancer treatment. Today’s pathology results could define the rest of our lives. And, wouldn’t you know, it’s September 11. A day synonymous with tragedy. I actually consider calling our oncologist and telling him to wait, to save the results until tomorrow, a day with an ordinary date. But I know that’s silly—the facts will be the same no matter what the calendar says.

And then our oncologist shows up, five hours earlier than we expected to see him. And he is bouncing, like a kid with a secret, incapable of containing this news. This glorious glorious news. Austin is fine. The skinny boy lying in my arms with an eight-inch scar across his belly, with tubes in his nose, chest, hands, feet, with five tumors still growing on his only remaining kidney . . . this boy will be fine. The cancer is still favorable. It grew for other strange and rare reasons, a seldom-seen variation with a seldom-heard name. You don’t even need to hear it, read it. All you need to know is that this cancer is still treatable, still beatable. Austin will live. And that makes this the most important day.

October 1, 2007: Another surgery, the most complex of the bunch. A risky procedure where the surgeons will try to remove the tumors growing on the left kidney, while leaving the kidney as intact as possible. The biggest worry of today is that Austin will end up in renal failure, with a dialysis catheter inserted in his leg, just beginning something so huge and so horrible after all he’s already been through.

But eight hours later, we meet him in the PICU amidst good news. Four tumors removed, along with forty percent of his only remaining kidney. But it is working, still chugging along. He surprises us all yet again. This ought to be the last surgery, his fourth in a mere two-month span. We believe that almost all the cancer has been removed, and he’ll continue with chemotherapy for the next five months just to be safe. But this day matters, it’s a turning point; we move from the active cancer stage to the just-making-sure stage. This must be the most important day.

October 25, 2007: Wow, this was quite a day. Quite a day. For the past three weeks, we’ve been wondering and worrying about this one little lesion, this one tiny shadow that remained after the last surgery. It held a lot of power, that little blob. If it grew, like his other tumors, our oncologist wanted to go right in, yet another invasion of my poor boy’s body, and remove the entire kidney. Save the child, get rid of the cancer, kidney be damned. So we were looking ahead to dialysis, every other day hooked to some enormous machine for four hour stretches, for at least two years. And once he’d made it two years cancer-free, then and only then, would he be eligible for a transplant. Two critical years, two years that should be spent running and jumping and swinging and sliding would instead be spent sitting . . . sitting still in a hospital room.

So he had a CT scan today to see what this small but oh-so-consequential lesion was up to. We hoped beyond hope that it would have stayed the same, no growth at all and, maybe, just maybe, that the chemo we still pump through Austin’s body would be working and the lesion would even be shrinking.

But instead it was gone. Not just the same, not even just shrinking, but gone. Gone. There is no cancer inside my baby’s body, nothing foreign or dangerous, nothing scary or deadly, nothing in there that’s not supposed to be.

Austin Gallagher had cancer. And now he is getting better. We are all getting better. This must be the most important day.

February 15, 2008: The last day of chemo. We are nearing the end. This eight-month journey is coming to a close, and normal life is peeking out at us from around the bend. This day is victorious. This day, which was marked in my datebook with stars and exclamation points, toward which we have been counting down, this day might be the most important of all.

August 31, 2008: And now, the months have passed. Summer is coming to a close, my big boy Breadan about to head off to school, already planning his Halloween costume. Austin is growing, hair covering his head, scars fading. The cloud of cancer lifts and the truth is revealed: It is this day. This day, when I woke up in my own bed in my own house, husband beside me, children healthy in their rooms. This day, when we play in the backyard, yet another rousing game of chase, and eat fresh tomatoes from our garden. This day, when we sit down to dinner together, a family intact. Today is, as yesterday was, as tomorrow will be, the best day, the most important day of our lives.

Advertisements