Back from the brink

Mark said that it took him about ten days before the bad news about Austin really sunk in and he could fully grasp the possibility of what lay ahead. Now it’s taken him another ten days for the good news about Austin to truly sink in so he can fully grasp the possibilities that lie ahead.

It is a fascinating process, how your mind can so quickly and completely adapt from one reality to the next. I was so there — in that worst place — so quickly, already figuring out the weekly schedule for dialysis, planning the activities we’d engage in for those four hour stretches. My mom was too — she had a mental list of books they’d read together and games they’d play. Mark and I discussed getting a Lego table that could fit nicely on Austin’s lap so he could contentedly build while his blood was being removed and cleaned by the machine whirring next to him. It’s a classic example of Whoosh … one minute your life is normal, the next it isn’t. And the next, it is again.

We’re still adjusting mentally. Still feeling a jolt of relief and giddiness when we remember some summer plan that we’d canceled in our minds. I feel like we’ve come back from the dead. Like a scene from a movie or book when a beloved character dies and you’re left there thinking, “No! This can’t be . . .” and then lo and behold, the heart monitor jerks back to life after flatlining or the hero rushes in with the magic serum or the character claws their way out of the shallow grave and voila! All is better. And you, as reader or viewer, are both thrilled and also disbelieving — “Oh, come on! As if that could actually happen”

But it actually happened.

There were a few reasons the possibility of cancer seemed so bad this time. I think, for one, it was simply that we’d gotten so close to our goal, just inches away from the finish line, almost touching the two-year trophy before it was ripped from our hands. It somehow seems like it might have been easier if it had happened at the 18-month or 21-month marks, like not such a tease.

There was also this terrible reality hovering in the back of our minds, which neither of us wanted to voice aloud, that we were somehow responsible. That our decision two years ago to keep his kidney was wrong and now we had to do it all again. Mark and I both said back in 2010 that we would take whatever consequences came our way. And of course, we knew in our heads what those consequences were. But that doesn’t make it any easier when they actually occur. I couldn’t help but think that we’d be almost done by now if we had taken the kidney. His two years of dialysis would be coming to an end and we’d be spending this summer dealing with his transplant — lots of time in the hospital, absurd amounts of daily medications, worry and more worry. But we’d still feel like we’d accomplished something. So I was left wondering if it would be worse for him to have dialysis now that he was older, now that he’d be missing so much “real” school (I would have had to pick him up at 11:30 three days a week). With all the new friends he’d be meeting for the first time, he’d be known as the sick kid, the one who never feels well, who misses all the fun stuff. How long would that identity have stuck with him before he could replace that image in the minds of his peers with the strong, vibrant child we all know?

And then, of course, the big one: the intense and overwhelming fear that this was it. I mean, how many times can you beat the same cancer? We’d done radiation and chemo and surgeries and it just kept coming back. How smart is it? How powerful? Back in December 2009, when we were trying to determine a plan of action to treat that relapse, Mark and I asked our oncologist what chemo drugs would be available in the future if the three we used for those six months didn’t work. (You don’t give the same drugs for more than one protocol; Austin had three drugs during his first eight months of chemo and then three completely different drugs during his last six months of chemo.) The response? “Palliative chemo.” Uuuuummmmm, okay, I know what that means: “Cure” is no longer the goal, palliative chemo is simply about reliving symptoms and prolonging life . . . by a little bit. A few extra months. So, cancer again would not have been good. To say the least.

But now I’m dwelling and I don’t need to. We’ve come back from the brink, no longer dangling over the edge of the cliff. I feel a thorough and deep sense of calm, like nothing really matters beyond my two healthy children bouncing on the trampoline and my pretty awesome husband mowing the lawn.

I must be the luckiest.

So many endings

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.