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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.
I was going to post about Halloween today — with pictures of the boys in their various costumes: the packaged Target variety for trick-or-treating (which has been postponed until Sunday)and the we’ll-indulge-Mommy’s-crafty-side variety for Storybook Character Day. But it all seems a little inappropriate in light of the destruction and suffering being caused by Hurricane, I mean SuperStorm, Sandy. I realized this when I opened my email Tuesday morning to find a message from a local store announcing their “Sandy Shoe Sale!” and I thought, “Really? . . . You’re drawing in customers for shoes when people have lost their homes and livelihoods. Really?” I suppose veterans must feel the same way about the inevitable sales associated with their assigned day. (I’m less worried about offending ex-presidents with February mattress sales though.) And it of course reminded me of this ever so poignant (and rather depressing) Facebook post:
So instead of writing about our long lazy day off school on Tuesday (yes, we had our first official “Hurricane Day” due to high winds, downed trees and lack of power throughout Northeast Ohio), I can’t help but think of those suffering who were already suffering. Childhood cancer is the place my mind automatically goes, regarding hurricanes and anything else. And so I find myself thinking about all those kids and their families who believed they were already dealing with their life’s hardest thing. And how much harder it suddenly got on Monday night.
All those kids and their families who’d been holed up in hospitals for chemo and surgeries and stem-cell transplants, parents traveling back and forth between home and hospital, juggling work, other children and their sanity. And suddenly, there is no home, or the other kids have nowhere to go because schools are closed and they certainly can’t come into the hospital in the middle of cold season, with their snotty noses and hacking coughs. I think of the patients who were already in isolation due to stem cell or bone marrow transplants, living in a veritable bubble, who suddenly have to be evacuated through the cold and far-from-sterile streets of New York City to another, over-crowded, unfamiliar hospital. I remember back to the days following both of Austin’s kidney-sparing surgeries, the first in early October 2007 and the second in December 2009, when he had to lie so flat on his bed during recovery that he was actually strapped down. Restrained, with velcro strips attached to the bottom of the bed. There was a medical reason for this, of course: his kidney had to “settle” after being so thoroughly manipulated. But all I can remember was the overwhelming longing I had to hold my baby while he cried out in pain. I just wanted to pick the boy up and rock him in my arms, the single place (then as now) that he feels most safe. And I was unable to do that.
So today, I think of Austin and the others like him, both young and old, who are rendered completely immobile following their complicated and risky procedures, being moved down stairs because elevators are out of order and placed in ambulances to traverse the city through puddles and bumps and twists and turns. And I wonder how much new suffering can be piled on the old suffering.
But I don’t mean for this to be such a downer. I actually mean to say that this moment, like so many others, makes me feel lucky. And on the cusp of the season of gratitude I hope we can all step back and acknowledge how deeply fortunate we are and how truly rich our lives, on most days, in most weather, are. We have friends and family, a roof over our heads, health and mobility, choices and freedom, stores with shelves full of food and gas stations with tanks full of fuel, heat and running water and electricity.
And to those who don’t have some (or any) of those things right now, I wish you this: a good sense of humor, a deep well of patience and, above all, hope.
Every once in a while, it’s nice to be reminded of all that is right in the world. We hear stories every day of death and destruction, fire and hatred and political wrangling. Incompetence and sickness, war and poverty. This is what glares from the headlines and blares from the news programs.
But there are bright spots that too often get overlooked. Of course, Thursday my faith in the inherent fairness of our system of government was “upheld.” But politics aside, here are two really great clips if you’re feeling down. Many of you have seen the first on Facebook, where it made its rounds last week. It’s so worth reading through again though because it is filled with touching and surprising acts of humanity and kindness. My favorites — although it’s hard to choose — are the man in Melbourne jumping into the water to save that woman’s dog and the old Japanese men volunteering to work in the clean-up of the nuclear power plant. Oh wait, and the letter from the three-year-old girl to the grocery store (did you notice the age of the responder?) and the man giving away his shoes, and the . . . Oh, just check it out yourself.
The second is a bit long, but I highly recommend watching it through to the end because the last minute is the best part. Kids get a bum rap these days, for being selfish, hooked on technology, obsessed with wealth and fame, ignorant of the struggles of those who came before them. But this video shows young people coming together in a way that can only be described as beautiful.
Take a few minutes. Let your faith in humanity be restored. If we look closely, we’ll see that there are acts of beauty and kindness all around us. Now go, and have a nice day.
Mark and I sat around for a long time last night trying to figure out exactly what to hope will come out of today. Wishing for everything to “be okay” doesn’t quite cut it, nor does my usual “I hope the worst is behind us.” We need some specifics here.
We’ve settled on four scenarios, two likely and two highly unlikely. Of course, there may be one or ten other possibilities that haven’t yet crossed our minds, but we do have a well of experience for how these things work.
The two most realistic possibilities are that we clearly see the lesion and 1) are able to easily reach it with a needle biopsy or 2) aren’t able to reach it. The first is obviously the most desirable. Then we could schedule a biopsy and get real information. At that point, we know exactly what to wish for: that the “thing” is not cancer. And not only not cancer, but defined with certainty as something else so we don’t even have to worry about it. Then we’d finally pop open that champagne. If we’re unable to reach it with a needle biopsy, I think the next step would be to watch and wait, with repeat scans. I don’t think any of us (parents or doctors) believe that the need to know outweighs the risk of surgery. If it grows or changes on repeat scans (probably monthly), then we could justify going in surgically since growth almost always equals cancer.
The two unlikely scenarios fall on opposite ends of the good-bad spectrum. One is that the “thing” has disappeared. I know that sounds like the best option, but it would also raise many questions, like what was it saw last week and where the hell did it go? I imagine we would also end up with more frequent repeat scans if that was the case, to make sure it doesn’t magically reappear. The worst possibility would be that it’s grown considerably since last week, forcing us into quicker action (since growth equals cancer).
So, for all of you who’ve sent me lovely messages saying you’re wishing, hoping and praying for us today, now you have a specific request to send out into the universe: That we can easily reach it with a needle biopsy and that’s it’s ultimately defined as something other than cancer.
Okay … got it? Now get busy.
I’ve ended my book three times. The first in March 2008 after Austin’s Broviac line was removed and the first time he was declared “cancer-free.” Then again in April 2009, after what we now call “the almost relapse.” And finally — or what I thought was finally — in August 2010.
I’m going to share them all here … as long as you promise to still buy the book! (I don’t exactly think I’ll be giving anything away.) But they are informative in their way. Ironic, especially the last one, but hopeful. And hope is what we’ve got right now.
Wednesday, March 19, 2008 1:29 pm
It is not lost on me that tomorrow is the first day of spring. We started this journey in the dog days of summer: a swelteringly humid August in Cleveland. Walking around the air-conditioned hospital in a hoody sweatshirt zipped right up under my neck, hands stuffed into my pockets, not aware of whether it was night or day let alone warm or cool. And then I’d have a chance to walk outside, through that revolving door, into another world complete with its own climate. Lose the sweatshirt, search for sunglasses, wander past the innocent guy selling hotdogs and university employees preparing for the onslaught of new students and their families in the weeks ahead.
Then on through the fall, a vibrant college campus, glorious autumn colors, young people blissfully unaware of the horrors that go on inside that huge building looming over their campus. Our toughest days. Dark, dark days. But it was still warm and we tried to make up for what we’d lost of summer, strolling Austin from the hospital around the pond at the Art Museum, tossing coins in every fountain we passed, wishing, always wishing.
Into winter, the holidays alive with hope and possibility. Twinkling lights and happy wishes reminding us constantly of all we have to be thankful for, of all that others have lost. The final chapter of this story dragging on much like Cleveland winters do. Learning that the Broviac would stay in for extra weeks and possibly months felt like Groundhog Day with a poor outcome—how much more (winter, cancer) can we take? How much more (snow, sickness) will come our way?
But spring is coming, at least according to the calendar. New life, rebirth, blossoming. Austin is going to sprout up like a weed in the months to come, I have no doubt. He will finally outgrow the onesies he’s been wearing since last summer, will learn to swim, will experience the freedom of running naked, will begin to forget.
We have come full circle, through the seasons of the year. We hope beyond hope that our cycle is over. But Mark and I will never forget.
Today was easy. We arrived in pre-op around 8:30 and spent a good stretch of morning just waiting (so much of this has been about just waiting). Austin was a little grouchy because he hadn’t been allowed to eat breakfast, but we managed to distract him with toys and tickles. When we changed him into the hospital gown and removed that carefully wrapped ace bandage from his chest, he nearly pulled the Broviac out all by himself! Then the docs used it one last time to administer propofol making him gleefully oblivious as masked strangers wheeled away from us. We were back in post-op holding him a mere forty minutes later, nothing like the eight-hour surgeries we’re all used to. He sports a regular little band-aid over a tiny hole, no stitches, not much of a scar. Just like that, whoosh—all better.
And then we walked together down that hall leading away from Pediatric Surgery one last time. Feeling lighter, satisfied, content. We stood at the elevator, waiting for our chariot to arrive and whisk us far far away. The elevator stopped, door opened, another family got off as we got on. We didn’t know them and yet we knew them all too well. For one it ends and for another it begins, this cancer roller coaster does not stop for long. Mark shot me a knowing glance and we squeezed hands and vowed once again to never forget:
We were, we are, and we will remain the luckiest.
And then, one year and thirty pages later, this ending:
Mark and I step out on to the back porch and see the boys on the swingset. Braedan is pumping ever higher on the swing, feet reaching for the treetops. Austin is trying yet again to master climbing up the rockwall. He secures one foot and makes it a few inches up, only to lose his balance and slip back down again. But he doesn’t quit, doesn’t give up. He just brushes the wood chips off his hands and tries again. Nothing will keep this kid down.
He climbs, one small step after another, and I start to head in that direction, fearful he may fall too far and get hurt, but Mark pulls me gently by my sleeve. “Let him do it,” he whispers. And he’s right. We’ve held him this far. Let him do it.
And he does. Of course. He makes it to the top, scrambles to his feet and sees us watching. “Awtin do it all by de-self!” he shouts with pride.
So we clap, like normal parents do when their normal kids achieve some normal new skill.
I start again across the yard and Austin zooms down the slide, skidding to stop at the bottom before picking himself back up and bounding through the grass, little feet trying to keep up with his smiling face and head lunging forward, and he dives into my arms.
I swing him around, holding him tight while he laughs. And on one spin, I see Mark, my solid steadfast partner, watching us happily. And on another spin, I see Braedan, my capable, confident child, swinging happily.
We are a family of four. We are alive, intact, together.
And we will be okay.
And finally — I still hope, finally — this one:
I’ve ended this book twice already. Once with the words, “We are the luckiest,” and once with, “We will be okay.” I don’t suppose I can repeat with any credibility that we’re the luckiest. We’re lucky, I’ll give you that, definitely lucky. With all the horribly unlucky things that have happened to us, we’ve once again come out the other side. We have avoided the worst fate. And the second worst fate, kidney failure, which falls quite a few rungs down on the ladder-of-the-unbearable from the first worst fate. I’m optimistic, always hopeful. But not stupid. We’re not the luckiest.
But we will be okay. I know that. We’re not done, I know that too; the future holds many perils yet. His cancer could return, in his kidney or liver or lungs. Next week, next month or next year. Or a secondary cancer could catch us off guard ten years down the road when we’re more worried about our boys, suddenly young men, driving too fast or drinking too much than about shadows and lesions. And then there’s that kidney. We’d always believed he’d lose it during the years of puberty. Now that seems a luxury. It will not last forever, that would be too much to ask, but I do hope he can avoid dialysis entirely, move straight from kidney failure to transplant, only allowed if he’s two years cancer free. That’s the hope I’ll hold onto.
So it’s not over. Maybe we’ll get one good year, maybe five, maybe more. And then we’ll be driving right back down that hill, searching again for a parking spot, surely there’ll be more construction, maybe even a new parking garage? Faces will have changed, more wrinkles, graying hair. People will peer at us and wonder where they’ve seen us before. “Austin Gallagher, bilateral Wilms,” that’s how I’ll introduce us. “We were here back in the 00’s” (is that what we’ll call them?). Somehow that most unnatural thing—a sick child—will become our normal again. But for every moment until that moment, we will live. We will live and we will laugh and we will love a whole heck of a lot. And when that moment arrives, we’ll hunker down and come together and rise up and we’ll get through it. Again.
Because we will be okay.
You know I’m not big on religion or “signs” or anything like that, but in moments like these, I inevitably grasp at straws and find meaning everywhere. In songs on the radio, in stories on the news, in typical childlike queries. Sometimes in places I wish I didn’t.
Like yesterday when one of Braedan’s classmates, who knows us, who knows Austin, asked me if Braedan was an only child. Uuuuuummmmm, no.
Or how many times in the past few days, I’ve had to listen to Austin say, “I’m dying.” After racing laps around the house, he gulped big breaths and gasped, “I’m dyin’ here.” Then today, he showed off an enormous paper cut earned crafting a Mother’s Day project at school, and said, “I thought I was gonna die.” Okay, too much hyperbole around here.
Sometimes the messages — though equally random — aren’t necessarily bad, like when I got in the car the other day and there was a story on NPR about St George, the dragon-slayer. They were interviewing people who made pilgrimages to some statue of St George, asking for miracles or thanking him for whatever grace they’d been granted. One grandmother said she’d been visiting every year since her young grandson was cured of some terrible, but unnamed, disease.
We’ve seen a statue of St George before, back on our trip to Maine nearly two years ago. After each day’s outing, as we drove the winding roads back to our neighbors’ farmhouse, we’d pass through the tiny village of St. George, and there, out in front of the fire station, was a huge metal statue of him slaying a dragon. The kids loved that.
It says (in case you don’t have super microscopic vision): “Anyone can slay a dragon, he told me, but try waking each morning and loving the world all over again. That’s what takes a real hero.” Ah, a real hero. Who has to slay dragons each and every day but still wakes up to love the world.
I was thinking about that story as I was out walking last night. As I approached a decision-making intersection, I noticed the sky was threatening rain and almost turned toward home. But I kept on and as I headed toward Horseshoe Lake, the sky in front of me was perfectly blue and the sky behind me held a shining sun while the sky directly over my head was grey and raining. And I thought, “Oh, of course. I have my own personal little rain cloud, following me wherever I go, raining on only me.” And in the midst of my feeling sorry for myself, something clicked in my brain, something about the sun behind and the rain overhead. And I looked up ever so slowly, wishing and hoping like my child’s life depended on it.
And there it was:
I hope you can see in that last image that there is not one, but two rainbows. And for the few minutes that it took me to hurry home, all felt right in the world.
I’ll take what I can get.
You know how this goes. First I’m in disbelief, then I’m angry and sad and scared, then I grasp at something to hope for. Then there comes (or not) a reluctant acceptance of the ugly truth, followed by that well of strength that has been tapped too many times. Back and forth, up and down, over and over. The roller coaster ride has begun.
Thank you, all of you, for yet again stepping up and offering to walk this tortured path with us. Today was an emotional day as at every drop-off and pick-up and at several places in between, there were long hugs and inevitable tears and many many f-words. I hear and appreciate every offer of help (and I hear and appreciate every f-word). At this moment, there is nothing we need (save that magic pebble), but the time may come when we will accept all the meals and playdates and everything you’ve all given so many times before.
Nothing is certain. This is not yet the worst news. It is simply not the good news we had so fervently hoped for and so completely believed we’d receive. But we have many more steps before we can say for sure that this is cancer and before we know at all what any of this means for Austin’s future.
His oncologist is taking a surprisingly calm approach, considering he usually wants to do more and do it faster. After discussing the situation with Austin’s nephrologist, they now say we can skip the GFR. The fact that his kidney function has remained steady for two years pretty much guarantees a GFR result of 60 or greater. So that’s one small thing off the table. We will instead do an MRI in the next two weeks, perhaps Wednesday, May 16. Mark and I had been thinking we’d do it the week after that, but everyone I mentioned that to gasped in horror and said, “Why can’t they do it sooner?!” I think they probably can do it sooner (they’re working on scheduling it right now), but the truth is that Mark and I don’t really want to deal with the results any sooner than we have to. Usually I’m the one who believes everything will be alright and this time, I feel fairly certain that the next step will involve removing his kidney and I just don’t want to get to that step one single second sooner than we have to. Then there’ll be the chemo issue — which could push the start of the two-year countdown clock back by several months. Of course, none of this is certain, but I can’t stop it from going through my mind.
So, first things first and that’s the MRI, which poses no danger to his kidney and is expected to give us at least a good look at what’s there. Of course, a clear image is not the same as a biopsy, so even that won’t define the “thing” with certainty. But we’ll just take things one day at a time and make the next decision when it comes.
I feel an incredible sadness and a huge weight upon my shoulders. I look at this vibrant boy zooming ahead of me on his bike down the street and it seems impossible. But it’s seemed impossible before. Not ever, not for one minute of one day did having a child with cancer ever seem possible or normal or expected. I feel like we’re piecing his life together, buying snippets of time here and there. Trading in one surgery for three good months. Or twelve rounds of chemo for half a good year. Stitching together these ridiculous pieces, in-treatment time with non-treatment time, a bit of sickness here with a bit of health there, mixing the living in with the dying. Or the dying in with the living. A patchwork quilt of life, held together by a thread of hope so thin that it at times appears invisible, and yet so strong that it proves unbreakable.
It must be unbreakable.
Tuesday was the six month mark since I sent out my samples to the agents I met at the Writer’s Digest Pitch Slam. Of those five, I got three rejections, one remarkably personal and complimentary and two standard form letters. There was one woman who simply refused to respond, despite two separate follow-up inquiries. And then there’s the last, my holdout, and favorite of the bunch.
She’s the one who, according to online lore, takes an awful long time to get back to queries. The agency website says to resubmit after six months, so that is what I did late Tuesday night, six months to the day since I sent my original, with a friendly, “I know you’re really busy, but …” letter.
No word yet, but now I’m more nervous than ever. As tedious as all these months of waiting are, at least they hold hope. That whisper of hope is always there, simmering below the surface: this is gonna be The One, she’s gonna ask to read the entire manuscript and then love it and then sign up to represent me and then sell the book to a major publishing house — oooh, maybe there’ll be a bidding war and a six-figure advance, and then it’s interviews and New York Times bestseller lists and book signings and then, oh yeah, someone is obviously gonna want to make it into a big Hollywood production, and then ….
Or at least the beginning part: She’ll like it enough to ask to read the rest! That’s all I really want at this point — for something to read the whole damn thing.
If this doesn’t pan out, then I’ll have to take a long hard look at my work and possibly revamp the beginning, which is of course the hardest part to change. If someone asked me to rework ten or twenty pages in the middle, I could do it in a flash. But the opening sentences are just so so hard. But I’m afraid it’s falling a little flat and that it takes too long for me to really get my groove. Oh, I don’t know, hopefully this won’t be an issue at all. Hopefully, I’ll get that positive response and then, and then, and then …. You know the rest.
Tomorrow are Austin’s one-year scans. He’ll have his usual procedures: labs drawn, followed by an abdominal ultrasound to look at the liver and kidney, followed by a chest CT, followed by a visit with his oncology team. And we’ll follow our regular schedule: a normal morning at school, then lunch at the fountain outside the hospital, then many hours of roaming back and forth through the underground maze from one appointment to another.
The radiologist usually gives me a basic rundown on his findings during the ultrasound, so that information I’ll have before we even walk out the door. The CT scan takes longer to read (or longer to be read, is more like it), so we might not have official results from that until Friday. Some of the labs are quick and we’ll have those back by the time we return to the cancer center after scans, but the kidney numbers — which we await with bated breath — won’t come until after we’ve gone home.
Of course, we hope for no changes to his liver, kidney or lungs and either an improvement or maintenance in terms of kidney function. We feel good, hopeful, optimistic, but we’ve always felt that way, even when we were way off base. He seems so normal and vibrant — but he’s always seemed that way, on the outside at least, even when things were going horribly wrong on the inside.
So, we take this one step at a time. And potentially, hopefully, as tomorrow comes to a close, we will find ourselves one step closer to an end. Not the end, because that will never come. But an end. Which would be good enough.
So what is happening with that book of mine, you ask. Well . . . nothing much.
There are still two agents from the Pitch Slam who I haven’t heard back from, one of whom I’ve pretty much given up on. From what I’ve read of her online, she usually responds fairly quickly and in one interview, she welcomed follow-up emails if she hadn’t responded to a query within five or six weeks. So I sent her one a few weeks ago and still, nothing. She’s the one I mentioned who I would have been shocked if she’d asked to read my full manuscript, so I guess it’s to be excepted. Still, it seems extraordinarily rude to ask to read someone’s work and then to even give them the courtesy of a rejection. I mean, it’s only a measly form letter — it would take thirty seconds to paste it into the body of an email and hit send. Oh well.
The other agent who still hasn’t responded happens to be my favorite of the five. Her agency’s website says right up front that it takes them up to three months to review initial submissions and only to follow-up if we haven’t heard back in six months. Six months! And I thought I’d already done my share of waiting.
That agency did have a very thorough submission form that asked for all sorts of information, from the last book I read to the author who’s most inspired my writing to a single line, one sentence, culled from my submitted pages (not easy!). They also required a synopsis, which is harder than writing a full-length manuscript! Really, in the past, I’ve steered clear of agents who request a synopsis just because I didn’t want to have to write one. This is a two-page summary of the entire book, devoid of any exposition — just straight up, “This happens, then that happens, blah blah blah.” Ugh. Double ugh.
But I do trust that, by requesting all that information, and by warning ahead of time how long it takes her to review it all, that she really will indeed review it all, and that she really will indeed respond. I’ve also read some interviews with writers who’ve signed with her and they all say that she’s much much quicker to respond once she officially represents you and that she spends most of her work day acting on behalf of her current clients and their books, which is a good sign.
So, more waiting and more hoping. If there are only a few things I’ve learned since Austin was diagnosed with cancer, it’s how to wait and how to hope.