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We are at that time of year, as we are so often are, that is filled with milestones and anniversaries. Some of them are good, some bad, all tinged with reminders both subtle and glaring of where we’ve been and where we might someday end up. Last Wednesday was Austin’s kindergarten musical performance, not an obvious cancer milestone in anyone’s life, but filled with significance nonetheless. It should go without saying that there is just something about watching five and six-year-olds go through a song and dance routine, all waving their arms slightly off rhythm, scrunching up their faces and waving to their parents one minute, the perfect image of mature composure the next. All coupled with their eager filing from risers to stage to recite their carefully rehearsed but poorly enunciated lines, and the whole thing is just adorable to the point of tears.
But for us, it also stood in stark contrast to Braedan’s kindergarten musical three short — and very very long — years ago. That day, way more dramatic than this, is described here. And let me tell you, it was not as easy as I made it sound in that rather upbeat review. It was instead filled with a lot of anxious clock-watching, as I wondered if I would yet again break the heart of my elder child in my desperate attempt to keep my younger child alive. So it was with enormous relief that we watched Austin sing his songs and wave his hands and recite his line (inappropriate though it was for a child who can’t pronounce his Rs): “And you would be right, with most of those terms . . . You see, ladies and gentlemen, we are the worms!” with no pending hospital visits, no Sophie’s Choice decision looming in our near future, no fear of what the next day, week, month might hold. Instead, it was all sweetness and pride, worms and snakes, and even Braedan and two other older siblings were invited to provide comic relief in the form of cheesy bat jokes.
Austin on my lap three years ago
Austin last week, ready to perform
Austin on stage, reciting his line
Braedan on stage (far right), reciting his line
And if anyone is really paying attention, you’ll notice that Austin was wearing the same shirt last week that Braedan wore to his kindergarten show. We, of course, went to the Colony for dinner that night but I have no pictures of grilled cheese-induced ecstasy.
But, if you want a real milestone, a truly significant, did-it-again milestone, here it is, hidden in the midst of this post about a school concert . . . Austin had an abdominal ultrasound today. We opted to do it back at Rainbow, even though his new oncologist is at the Clinic, because only this particular radiologist knows what to expect from his crazy misshapen kidney. So we’ll have an additional appointment in a few weeks, with a chest x-ray and labs and a physical, but for now, from today’s scan which looks at his kidney and liver and is the thing that really matters most to us, Austin is three years cancer-free. Yes, that’s right. That’s what I snuck in here at the end of this silly little post. AUSTIN IS THREE YEARS CANCER-FREE. Ka-pow.
Whatever you celebrate, wherever you are . . . be a light in the darkness.
From a recent post I wrote for St. Baldrick’s:
Lighting the Darkness
By Krissy Dietrich Gallagher, mother to Austin, 2012 Ambassador Kid
My grandfather died on December 21, 1982. The shortest – and darkest — day of the year. Cancer, of course. My brothers and I drove with our dad from Cleveland to Massachusetts for the funeral, where my mom had been for the previous week. It was the first time we’d ever not spent Christmas tin our own home, where my grandparents usually came to stay with us. After the funeral service on Christmas Eve, my grandmother went to lie down and my brothers and I ended up in her basement, one of our favorite places in her house (we’d spent many vacations roller skating around and around on that smooth concrete floor). But this time we searched through her neatly stacked boxes until we found some labeled “Christmas.” We quietly lugged everything upstairs and by the time my grandmother awoke from her nap, we had decorated a small fake tree in the living room and hung stockings over the fireplace. Just because our Grampy was gone didn’t mean we had to give up Christmas.
She talked about that day until she died, a physically broken but emotionally whole old lady, more than twenty years later.
To me, the holidays are about finding the light in the darkness. Placing candles in the window to light the way for those outside on these short winter days. Bringing the evergreen tree inside when all else is bare, to remind ourselves that life is still out there, that spring will eventually come.
When your child has cancer, the light and the dark, the circle and the cycle of life, feel ever more important. Everything is suddenly meaningful; little things like eating dinner as a family and big things like spending Christmas at home. When my Austin relapsed at age 3 in December 2009, the dark days were upon us in more ways than one.
Relapse is scary. Scarier than the first time, for us, at least. It means that that whole army you employed, the full-on assault you launched on your child’s small body, simply wasn’t enough. It means that cancer was stronger than the strongest medicines. And that is terrifying.
But you do it again. You load a fake Christmas tree into the car and you decorate every inch of that hospital room with anything sparkly and shiny you can find. You light the darkness because there is simply no other way. You hold on to hope and you force yourself to remember that spring will come.
Even on the darkest days.
We actually went home that year, a few days before Christmas, and returned to the hospital for chemo and radiation shortly after. But we spent Christmas Eve surrounded by family and friends and we celebrated all that we had, with full hearts. We awoke in our own home, a family of four, to open presents in front of the fireplace, to snuggle and laugh and take lots and lots of pictures. Never far from our minds was the thought, that fear that is impossible for the parents of the sick to shake, that this might be the last Christmas we would spend together.
And now, here we are, three years later, a family of four, alive, intact, together. Two little boys quickly morphing into big boys. Healthy and happy and pretty darn close to normal. Lighting the darkness is their own special ways each and every day.
It never ceases to amaze me how quickly we can revert back to our old roles. Our seamlessly we become who we once were: the patient and the advocate, the comforter and the distractor. It’s as if we never left that old hospital world; it all feels so familiar, so deep in our bones, even in a brand new space.
We awoke super early Friday morning, if you can call 3:45 “morning.” Driving down the driveway at 4:30am to arrive in pre-op by 5:30 made me ever thankful that we lived so close to our hospital for all those years. (We ended up at Akron solely for insurance reasons — which will change in the new year — and, aside from follow-ups won’t be driving back there again.)
By 7:30, Austin was walking down the hallway hand-in-hand with an operating room nurse, with just one backward glance, but no tears, as he marched off to surgery. A quick hour-and-a-half later, he came to in the post-op room and we were by his side, offering popsicles and comfort. The ENT said his tonsils were enormous, but came out with no problems. And the hand surgeon was very pleased with how his finger repair went, no nerve damage despite many layers of scar tissue. He has a heavy red cast up to his elbow, only there to keep him from using his hand. The doctor wasn’t even sure he was going to give him a cast until he asked me how active Austin is. Once the words “gymnastics” and “cartwheels” passed through my lips, he knew just what to do. (And I’ve seen Austin do three cartwheels already, using the cast as a study foundation.)
We spent the afternoon mindlessly rotating between the floor playroom and his bed, trying to make the minutes pass by a little more quickly. A couple of books, wandering aimlessly through the halls, cajoling with sherbert and applesauce. Three good hours followed by the miserable half-hour leading up to the next dose of painkillers, followed by the miserable half-hour it takes to kick in. Hospitals are just plain boring, there’s no way around that. Akron was a lovely place; we went downstairs for a dramatic reading of How The Grinch Stole Christmas, and met Ronald McDonald on one of our walks. That evening as we sat on the bed eating dinner, a troupe of carolers in Renaissance costumes came singing down the halls. And a volunteer knocked on the door to read Austin a bedtime story.
So, it was fine, but still, it’s a hospital and I can’t help but feel trapped when I’m there. And they’re all amazingly the same, the colors of the cupboards to store your clothes and the placement of the buttons on the walls, the smell of the rubber couch I slept on and the feel of the sheets that have been washed ten thousand times. Austin did okay throughout the night, well, as expected, I guess. He was up at midnight and 4am needing medicine. But he ate surprisingly well Friday evening, chowing down an enormous l tray of soft foods for dinner. We were released by 10am on Saturday and safe at home an hour later.
He played hard and happily that day and I thought I’d for sure send him to school Tuesday, if not Monday. But yesterday was worse and today he took a three-hour nap in the morning, so we’re laying low. His hand is fine and he’s driven to be independent, managing to snap his jeans and write his name with both his left hand and his casted one. But his throat is very painful and he’s struggling to eat anything at all. Even popsicles hurt going down.
But we truly believe this could be our last overnight in the hospital for many, many years. We called it an Austin tune-up, just getting everything into tip-top shape for years and years ahead of normal, regular childhood. I imagine that the next time he sleeps in a hospital bed, he won’t scoot over halfway through the night and beg for me to slip in beside him. It’s sort of bittersweet, that thought, but as hard as watching my baby grow up may be, I will always take it over the alternative. Always.
Austin is having surgery this Friday at Akron Children’s. Surgeries, actually, two procedures rolled into one. They’re minor and non-cancer related. Just a long overdue tonsillectomy and finger repair. You may remember that his swollen tonsils (besides keeping us all up at night) prevented him from being sedated for his May MRI, requiring us to go through the surgical department for full-blown anesthesia. While we hope he’ll have no future reasons to be sedated, we also realize that’s pretty unlikely given his history (and his future). And the poor finger . . . well, that thing’s been bothering him for more than a year as it’s now clawed and unable to fully straighten. The lovely surgeons at Akron have coordinated their schedules so he only has to have one surgery, which I think (I lose track of these things) brings him up to eleven.
The interesting thing about this time is how nervous Austin is. He’s been so young every time in the past that all these crazy things happened to him without his full (or at times, even partial) understanding. This time, he is well aware and asking many many questions: “What day are we going again? Is tomorrow when we leave at 6 in the morning? How long will I have a cast on my hand?” I don’t think he’ll have a cast on his hand at all, more like a bandage, but he’s definitely concerned about not being able to write at school. His teacher has assured me this won’t be an issue (he is in kindergarten, after all), but Austin is a participator — he joins in to any and every activity possible with his full self, so standing on the sidelines will be tough. Especially when it comes to missing his regular Wednesday and Saturday tumbling classes. I already have to set silly rules to contain the near constant acrobatics, like no cartwheeling while crossing the street and no flips after 8pm. Of course, I think it’ll probably be his tonsils that cause the most pain, but that seems a bit too abstract for him to worry about. And I don’t exactly want to encourage him to fear something else!
Sp we go in early Friday morning and will stay over that night. Of course these are both typically out-patient procedures but since Austin is in no way typical, they want to observe his blood pressure and hydration. This will be our first overnight in the hospital in a record-breaking two-and-a-half years, since an unexpected fever in August of 2010. I just reread that old post, “Interruption,” not quite remembering the circumstances of that particular stay. Its closing lines were right on. It finally seems that, despite swollen tonsils or Franken-fingers, we have indeed made it safely to that wide-open future I could only hope for back then. We are living it.
Yesterday was our last day as patients at Rainbow. No, we haven’t magically moved to some elusive category of you’re-so-healthy-you-need-no-more-follow-up-care (but if such a category exists, I’d sure like to be placed in it someday). No, no, instead, we are switching hospitals.
I know, that one came as a shock, right? We love Rainbow, that much should be obvious. We have been thrilled with the care we’ve received there over these five long years and I can honestly say that I feel at home whenever I walk through those revolving doors. So this change is not exactly our choice, but it’s necessary nonetheless. We’ve been chasing health insurance for a while now, constantly switching carriers in order to stay at UH, with ever-dwindling options. Our most recent best option shouldn’t ever have the word “best” attached to it as we’ve been paying 80% of our care at Rainbow out-of-pocket since January. With a kid like Austin, let me just say that that ain’t cheap.
But we’ve been unwilling to leave Dr. Auletta until we felt confident that Austin was well, and reluctant to leave him even then. And now, alas, he’s leaving us. It is for the best, for him professionally and certainly for his family. And we support him in this move entirely, knowing that he can achieve greatness in a position created especially for him and his expertise at Nationwide Children’s in Columbus. Yesterday was his last day at Rainbow, hence the uncharacteristic “clinic of miracle.” There’s a reason those patients were his; he made those miracles happen. He absolutely put his heart and his mind and his energy into caring for his patients every single day, going above and beyond for all of them. For all of us.
So yesterday, we said goodbye to Dr Jeff. And with his departure and Austin’s good health and our ever-changing health coverage, we said goodbye to everyone else too. To the nurses and receptionists, to the ultrasound technicians and coffee baristas. Most of the goodbyes were silent, in my head only, as it would have been too hard to verbalize all that I felt. There were a lot of “It’s not goodbye, we’ll come back to visit.” And we will.
As we meandered the hallways moving from one department to another, I was keenly aware of the days and weeks and months and years we spent inside that hospital. Over many seasons, from one hot humid summer through several seemingly endless winters. A couple of springs and even more falls. For holidays and birthdays, Austin morphing from a nursing babe-in-arms to a toddler in a stroller to my current tumbling schoolboy cartwheeling down the hallways (yes, he did that). He entered that hospital not yet knowing how to walk and he leaves it having just learned how to read.
He grew up in that building. We all did.
And when we walk into the Cleveland Clinic next year, there will be no familiar faces, no exclamations of “Look at him! Is that really our little Austin?” No friendly waves as we pass by no-longer-needed departments, no hugs as we step onto the elevator to find a friend, no chance for Austin to say, “Hey I remember that fountain. I love it there!” I’m sure the Clinic will be fine. I’m certain we’ll receive good care there.
But there’s only one Rainbow.
Austin had his two-and-a-half year scans today.
He went briefly to school to partake in the Grands Day celebrations, but I picked him up at 10:30 and we headed down to Rainbow for a long day of procedures. First an EKG and ECHO, because he needs clearance from cardiology before his December 7th surgeries (tonsillectomy and finger repair — more on those next week). Results from both were fine: The VSD that marked our first step towards diagnosis more than five years ago still exists but is so tiny that it poses no threat at all. The enlargement that caused concern during his second round of treatment is less pronounced, probably because his blood pressure is as normal as it’s ever been. His heart is functioning fine and, while we need to continue monitoring it well into the future, there is no current worry or need for action or cause for concern.
Then it was time for abdominal ultrasound, always the most significant test of the day. But that too was normal, no changes from last time, the ol’ inappropriately labeled “unremarkable” exam. Then a chest x-ray, which I haven’t actually seen results for but we’ve never had any real reason to worry about cancer metastasizing to his lungs.
And then it was off to see Dr. Auletta in the out-patient clinic. After labs and a quick physical exam, he sat talking with us and reflecting on the day he’d had so far (more on that tomorrow). Ever conscious of respecting patient privacy, he nonetheless commented that today he’d seen the “clinic of miracles.” The kids and their parents who happened to walk through the doors today were the remarkable one, the lucky ones, whose stories could have ended quite another way.
You know, a lot of children diagnosed with cancer in the twenty-first century have excellent prognoses right from the very beginning. Of course, it’s still a big deal and still terrifying for their families (all you hear on Day One is “Your child has cancer” and nothing else quite makes it through). But the doctors who see those kids on their very first days know, that as long as nothing goes horribly wrong, as long as science works as it’s supposed to, they’ll be alright. (Austin was actually in that category for about one day.) And then there are others who the doctors know, despite all they may hope and despite how hard they end up trying, that they won’t be alright. And then there are the kids in the middle, whose cases are tricky, whose cancers are unpredictable, but who still present with a shred of hope. They need a hell of a lot of work, they need vicious medicines and endless care and a ferocious internal fight. But those are the kids who can become miracles. And Dr. Auletta saw them today.
Austin among them.
. . . another hospital. A new hospital this time, too.
Don’t worry — nothing bad happened. I just finally got around to making appointments for the non-essential, non-emergency, non-cancer-related issues that have been bothering Austin for the past six months. First, those pesky tonsils. Which don’t actually bother Austin at all. I mean, he snores, loudly, but that doesn’t bother him. But we simply have to make sure he’s able to be safely sedated for any future procedures so today we visited an ear, nose and throat specialist at Akron Children’s (long story there, related to annoying health insurance issues, but I must say that even with an hour drive, Akron Children’s was very pleasant to deal with).
Then it was off down the hall to see the “plastics” guy. No, Austin’s not getting a new nose (his current one will have to do). Remember the dreaded finger injury? (God, how could we forget the dreaded finger?) It’s turned into quite a claw lately, which we’ve labeled the Franken-finger, and which causes him a lot of pain and discomfort. It’s always the little things . . .
Both doctors agreed that “quick” surgeries are in the books. Luckily, they will coordinate their schedules so we can wrap both procedures up into one surgery, likely over winter vacation (since, you know, kindergarten is the new first grade and the kid’s gotta be able to hold a pencil!).
It was relatively easy, but there’s something about hospital days that exhausts me. I think I’ve finally accepted that it’s not the actual day or anything in it that’s tiring (I mean, today was mostly spent on the freeway) but something much more psychological for me. Maybe it’s the reliving I’m forced through (multiple times) as I recount the date of each and every surgery and list the names of all the current and past medications and check the damn Yes box next to so many of the “Has your child ever….” questions, complete with the wide-eyed amazement of the nurse who unsuspectingly asked our medical history. I inevitably come home and feel completely wiped, like I’ve done something so stressful, and then have to, ugh, make dinner and, ugh, oversee homework. It’s a bit silly, I guess, but also completely logical. Ah, it’s always the little things. . .
But tomorrow really IS another day . . .
Two years ago, on May 3, 2010, Austin and I had an unexpected overnight at the hospital due to high blood pressure, described here in a post aptly titled The Wrong Side of the Window. We were stuck in that god-awful limbo between choosing to remove his kidney and continue with chemo or venturing blindly into the post-treatment world never certain when the kidney would fail or when the cancer would return.
And then, three day later, I wrote this one, (also aptly titled) Never-Ending. Read it because, well, it definitely captures the mindset I was in back then: the fear, the utter exhaustion and frustration and resignation I felt. What we believed was the inevitability of kidney failure and dialysis looming over us, the desperate feeling I got as I looked toward the future, Austin’s future, our future. It just didn’t seem bright. Yet, my god, it has been so very bright. These past two years have been wonderful, “normal,” right. He has had the chance the just be — which is all I ever wanted for him — to just be himself and be left alone by doctors, to live his life unencumbered by the burdens of disease and hospitals. And we’ve all had that chance: Braedan to be a regular kid, to fight with his little brother without worrying that he’s fragile, to be happy or sad or proud or scared or whatever, and not have any of it tinged by being the older sibling to someone we feared might die. Mark and I have had the chance to just be, be the parents we were meant to be (which is not to say that those parents are anything close to perfect — in fact, we were much more thoughtful and attentive parents when Austin was sick, but anyway …). But just to be normal parents who get annoyed with their kids and yell sometimes when they shouldn’t — and to feel lucky for that. We’re lucky for everything we’ve had in these past two years, every normal good or bad moment.
We read Sylvester and The Magic Pebble tonight and the last lines struck me, as they always do. It’s after Sylvester has been released from the rock and is reunited with his parents who lived, for almost a year, with the belief their son was dead: “When they had eventually calmed down a bit, and had gotten home, Mr. Duncan put the magic pebble in an iron safe. Some day they might want to use it, but really, for now, what more could they wish for? They all had all that they’d ever wanted.”
On the eve of tomorrow, we still have things to wish for (I sure would not be locking any kind of magic pebble in any kind of safe just yet). But it’s true to say that we all have all that we’ve ever wanted. And come what may, it’s been a damn good two years.
The boys’ hair is growing back. They both have nice coverings of dark fuzz and a few of their friends are almost back to their regular pre-shave haircuts. By now, everyone should have moved safely beyond the stage of questioning looks and sympathetic glances.
I imagine that for some of the shavees from our event, especially those with blond hair and nearly invisible eyebrows and eyelashes, the experience of being bald, at least in that first week or so, was quite similar to the experience of a real cancer patient. My kids both have dark enough hair (and eyelashes to die for) that they don’t warrant anything beyond a quick double-take. But for some, I’m certain they got quite a bit more than that as they wound their way through the grocery store with mom.
It must have been an interesting experience for the mothers of those kids too — to be on the receiving end of those looks. I know a thing or two about that. It’s not necessarily offensive; I mean, people are naturally curious and often mean well when they cast those big sad eyes on a sick child and his mother. But I spent months dodging sympathetic glances, back in the spring of 2010. Most of these took place at the hospital, because that’s where we spent most of our time during those months and because that’s where it was most obvious why my child was bald. My reaction to people’s stares was dramatically different depending on whether Austin was awake or asleep.
When he was awake, which usually meant he was tearing through the hospital hallways, skipping over tiles on the floor or climbing the low wall in the cafeteria like a balance beam, he did not look sick. Well, he looked sick, but he did not seem sick. In those moments, I always felt a strange pride when people stared in wonder and confusion at this obviously cancer-stricken child who was nonetheless cartwheeling his way through University Hospitals. I would shrug and smile, as they gave me these looks that turned from sadness to bewilderment to pure delight.
But when he was sleeping, which he often was, slouched over in the stroller as I pushed him from one ridiculously long appointment to another, I got completely different looks. These were quieter looks that people tried to hide from me, sideways glances and quick nudges of the person they were walking next to. “Look,” they seemed to be whispering to their companions. “Look at that kid.” My reaction then was to stare straight ahead, shoulders high, chin jutted forward. “We’re fine,” I was silently announcing back (even when we weren’t). “Don’t feel sorry for me.”
But look at us now. No sympathetic glances for this kid.
I know I promised links to the media coverage of our event but they are impossible to find! Strange, because I was under the impression the internet was just one big archive of everything that’s ever happened to anyone, anywhere, especially video news coverage from just a few days ago. But I’ve sent messages to Fox 8 and 19 Action News, which both covered the event on their 10pm news Sunday and again Monday morning. In fact, when I went through the line at the grocery store Monday, the cashier took one look at Austin’s bald head and said, “So that was you on the news this morning!” I have both shows DVRed on my TV but can’t for the life of me locate a link online.
But here are a few other options: Cleveland Heights Patch did a great video, found here, that makes me cry every single time I watch it. It’s a follow-up to the article about Austin featured on the site last week, which those of you on Facebook have already seen.
Bob Rosenbaum, whose son shaved on Sunday, wrote a post for the Heights Observer that can be found here. He’s right: the threads that connect us are many and they are strong.
I also promised that I’d upload all of Dallas’ photos to a public site, but I just haven’t managed to do it yet. Among the regular busi-ness of everyday life, Austin had his upper GI exam this morning. Remember this little bump in the road? It actually turned out to be nothing — all the potential problems were ruled out and his stomach seems perfectly fine. Which is pretty lucky, because had there indeed been adhesions or an intestinal blockage caused by an old surgery, he might have required a new surgery. Of course, I’ve learned to take all the “maybes” and “mights” with a grain of salt and worry only about what is really and truly happening.
The test itself (a series of x-rays and images taken over several hours, after drinking a Barium “milkshake”) was also no big deal, although he sure didn’t like not being allowed to eat this morning (even though most mornings he refuses breakfast!). Just another few hours wasted wandering the basement hallways, killing twenty minutes here and twenty minutes there between procedures. Austin was a trooper as always, finding fun in the oddest places. But there’s something about being in that building — it just sucks the life out of you. I always come away feeling completely exhausted, even when we didn’t actually do anything.
But we were home in time to enjoy most of this summer-like day outdoors, riding bikes and getting muddy. Like any regular five-year-old should.