You are currently browsing the monthly archive for May 2012.
Friday was Austin’s last day of preschool. Ever. So, of course, here’s the obligatory playground photo, along with his previous two Last Day photos:
It’s bittersweet to leave St. Paul’s since it’s been such a major part of our lives for the past six years. Braedan’s first official day of preschool (after a good two weeks of orientation) was September 21, 2006 … the day Austin was born! So, from that moment to this moment and for every insane moment in between, we’ve been members of that school family. It has spanned all of Austin’s life so far and hopefully the entirety of his cancer, start to finish. It was only fitting that he ended two days after being declared officially and most definitely cancer-free.
As I think back over these past few weeks, I am awed, as I have been so many times before, by the kindness and intense emotional investment of all of you. Your tears and your hugs, the very thoughtful gifts (the dragon-slaying StoryPeople print from the Sweeneys and the key chain featuring my double rainbow image from Becky being my top favorites), your messages of hope and sadness, faith and joy, sustained us through this otherwise heartbreaking experience.
Knowing that you’re out there and that you care so deeply about us, about my child whom some of you have never met, means an enormous amount. I regret that I am never able to properly thank you, but know that I feel you and am fully aware of you. I read the name of each “Like” on my Facebook updates with gratitude and satisfaction (and sometimes surprise). In fact, as Mark and I sat out on the porch last Wednesday with our champagne, we both had buzzing phones in our laps, constantly updating one another with the latest messages of love and relief.
I loved that my brother told me that every time he went anywhere on Thursday or Friday, he was greeted with high fives and hugs, random people congratulating him on his nephew’s good health and even shouting it from the side of the road as he drove past. This has been such a community saga in so many ways, as you’ve followed along beside us for all these years, crying with us, wishing with us, celebrating with us.
(And speaking of celebrating with us, we are going to finally throw a big-ass party and everyone is invited. But we must gather our strength first!)
This round, if you can call it that, was interesting because it was the only time in all of our years of cancer that I felt like it was truly unfair, the first time I ever felt like, “Why me? Why us?” I know it sounds crazy that I hadn’t ever said that before, but — as much as I hate childhood cancer and as much as I’ve raged against its presence in our lives — I also know that it exists and someone has to get it. Someone has to hear those dreaded words, “Your child has cancer.” So I always sort of figured, “Why not me?” I saw no reason I should be exempt from being dealt such a hand. I’ve been given so much, am fortunate in so many ways … why shouldn’t this be my thing?
But this last time, I finally felt this just isn’t fair. We have done it. We fought, hard, and we succeeded. Austin does not, did not, deserve to have to fight this battle yet again. It would have been too much. It would have been, for the first time, completely unfair.
As my brother said, it just felt (for lack of a better term) karmically wrong. Like it just shouldn’t be. And, of course, lucky us, it wasn’t. It isn’t.
At the Family Connections benefit a few weeks ago, right in the midst of our darkest days, a friend told me that I so deserve to have the universe treat me with kindness. Of course, we know that the universe just doesn’t work that way. Bad things happen to good people (and good things happen to bad people). And suffering is not fairly or evenly distributed. But I agreed with her. I really believed at that moment (and in this moment) that the universe should treat me kindly. That I deserved it.
And most of all, more than anything, that this boy deserved it:
And this (toothless) one too:
That’s what it was. Not actually “nothing.” To be exact, “Apparent hypoechoic area described on previous ultrasonography study is likely due to echo spin shadowing from surgical clip along the left psoas muscle.” Or, in our own language, that thing we saw in the ultrasound was caused by ultrasound waves bouncing off the titanium clip that was placed in his kidney as a marker and forming a shadow. It wasn’t a mistake. There really was a shadow on the May 7 ultrasound, some new spot that measured 1.4 centimeters and that warranted further study. That was it.
The same paragraph of the official report says, “No evidence of new left renal mass lesion.” And that says it all: No new left renal mass lesion. There is nothing new in his left kidney that could possible be a tumor.
This is the report that was handed to me in person when our oncologist pulled into our driveway yesterday evening around 6:30. (The same report Austin later spilled champagne on.) I lost it. Absolutely and completely lost it (not over the spilled champagne). I don’t think I could have possibly cried harder or louder if we’d been told he had three weeks to live. I have never felt that degree of relief over any piece of news we’ve received in the past five years. Never. Except that poor Mark was upstairs while the boys were showering and heard the doorbell ring and then heard me crying and assumed the worst. As he whisked the boys into their jammies, he was able to discern laughter in our tears and bravely ventured down to hear the news.
Then it was celebration and laughter and more tears, champagne and sprinklers and more tears. And some wonderful spontaneous visits from random people who couldn’t resist giving a hug.
And I’ll say one thing for that Dom Perignon:
it doesn’t taste all that different but you sure don’t wake up with a headache!
So I don’t know how to account for all this craziness. Was it just me overreacting? Was it the power of positive energy, good wishes, prayer? Was it the healing oil a colleague of Mark’s dropped off, which we rubbed on Austin’s belly Wednesday night? The double rainbows, the wishing stars, an act of God? Good luck … a miracle? Or just plain echo spin shadowing? Call it what you will, my child is two years cancer-free, a fact made extra clear by the extra clear images of the MRI. This milestone, which we’ve been so eagerly awaiting for the past five years, means several things: The chances of Wilms tumor coming back after two years are extremely extremely slim. And if, at any point in the future, his kidney should start to fail, we can set the wheels in motion for transplantation while hopefully avoiding dialysis altogether.
In non-medical terms it means this: We made it. Austin made it. We have done what we hope is our life’s hardest thing. We have done our life’s hardest thing.
Why, what on Earth makes you think I’ve had too much sugar?
A smudge on the ultrasound. Possibly the shadow of the titanium clip they placed there years ago to mark the exact spot where a tumor was removed. A mistake. A fluke. Whatever you call it, don’t call it cancer. Because it’s not. It’s nothing.
Oh my god. I am so exhausted. I will give you the details tomorrow but a picture is worth a thousand words, so here are a few:
Anesthesia makes you cold, hence the footie jammies, but not so cold you can’t jump through the sprinkler.
Worth the wait
And no, you can’t stop typing, people. Keep typing, keep typing!
Here we go again. There’s something about having a procedure postponed that takes away a bit of the nervousness surrounding it and replaces it with a feeling of let’s do this already. It happened to us back in September/October of 2007 when Austin went in for a major surgery to remove tumors off his left kidney and we were all so worried, but after they put him under and opened him up, they discovered an infection inside him and delayed the whole thing by a week. By the time that long in-patient week had passed, we had forgotten much of what scared us about that risky surgery and just wanted to get it over and done with.
So, I think that’s how we feel about today’s MRI. Let’s do this. Give us some information already, point out the path ahead.
Just in case you felt stupid after reading last week’s post about anesthesia versus sedation, know that I had to google the official difference between the two. I should know, because Austin’s done both many times over, but when I tried to explain it to anyone I realized I couldn’t do it accurately. All I could have told you for sure was that anesthesia takes place in Peed Surge (pediatric surgery) on the 2nd floor and sedation takes place on the 4th floor in the let’s-be-very-clear-here Sedation Unit. I do know that Austin has more trouble coming out of anesthesia than he does coming out of sedation. After being sedated, he usually feels groggy and disoriented for about five minutes. With anesthesia, that grogginess and the nausea that accompanies it, can last for an hour or more.
He will also have a breathing tube inserted as is common practice with anesthesia. This is the crux of why they’ve opted for this route over sedation. With both, your airway can partially collapse, which caused the worry over Austin’s breathing last week. Being intubated will obviously take care of that worry (and give him a very sore throat afterwards). So, needless to say, we’re in for a long day today.
But not quite as long as it was going to be. He was originally scheduled to begin at 2:30, after going on his field trip, which his class happily changed to a popsicle-and-jello-only event. But just yesterday, I got the call that we should now arrive at 10:30 (you should’ve seen my face as I was listening to my doctor’s message that started with the words, “Austin’s MRI has been rescheduled again…”). So I’ll shortly be waking the boys for an above-mentioned healthy breakfast (yes, they’ll both be eating popsicles and jello for breakfast) which must be safely consumed before 8am. Then Austin will head off to the playground for one hour, with no food or drink in sight, before Mark and I bring him down.
And then, well, then it will be a long day of waiting, I’m sure. I’ll be bringing a laptop to type more stories from the Fairfax students, which is what I’ve been doing nonstop for the past few days. Sixteen volunteers came to the Typing Party on Monday night at Lake Erie Ink and we plowed through at least half in three hours. But that leaves an enormous half stacked here on my couch, which I’ve been foisting on innocent bystanders who are too guilty to say no to me.
And hopefully, some answers. Please go back here to remember exactly what to wish for. Being in a state of limbo has been, as you might imagine, exhausting. But I stand by the fact that if the news is bad, I’d rather it be delayed as long as possible. I mean, think about what limbo actually means: you’re stuck between heaven and hell, not sure yet which one you’ll be condemned to for eternity. I’ll take limbo over being condemned to hell, that’s for sure.
But if the news is good, bring it. I’m ready for that.
Austin has fully embraced our fill-every-moment attitude. The other day when we were bouncing on the trampoline, he shouted from mid-air, “Let’s have the most fun ever!” And then proceeded to berate me if I wasn’t laughing loud enough. “Let’s laugh, Mom … you too, Braedan! You’re not laughing enough,” like the drill seargent of joy.
On Saturday, we took them biking on the Towpath after first riding the Cuyahoga Valley Scenic Railway, as part of their Bike Aboard program. The kids were thrilled, although twelve miles proved to be a bit much for Austin. Luckily Daddy was nearby to lend a hand — literally, reaching out and holding Austin’s hand on every slight uphill. That night at dinner when Mark asked him if he’d liked our surprise adventure on the Towpath, the clever boy replied, “I liked the tow part.”
On the train
Too cool for athletic gear
The it was off to our niece’s princess birthday party, complete with swimming in the pool.
Look at those pipes
We are feeling a bit desperate, like we need to fit in as much summer and swimming and bike rides and, yes, laughter as we can before . . . , well, before. So we’ll head to Chautauqua after this weekend’s baseball games. And we’ll just keep having Austin’s versions of “really much fun” as long as we can.
But I feel beat down, so much more pessimistic than I have in the past. Every other time we were on the verge of cancer, I felt certain it would turn out fine, certain that it wouldn’t end up being cancer after all. And every time, it was. And this time, I feel the opposite; like I don’t see how this could possibly be anything but cancer. But there’s still a tiny glimmer of optimism in that I hope that, since I was wrong in the past, I’m wrong this time too. That maybe my instincts just suck and whatever my gut says is way off base. That would be awesome.
Didn’t expect to hear from me so quickly, huh?
Have I ever told you that Austin is a snorer? Like a hear-him-from downstairs-snorer? He’s loud, all night long, snargling and snuffling and waking anyone around him. This is relevant because sedation can be dangerous for those at risk of respiratory failure. We’ve run into this problem before over the years, but he usually needs to be sedated for only a short period of time. For radiation or CTs with contrast, it’s a half hour maximum that he’s actually sedated and only a few minutes in the machine and out of the range of the doctor’s watchful eyes. MRIs can take up to two hours.
We went to sedation today around 12:30, after steering Austin away from food all morning. We had packed a good “lunch” for him to eat around 4pm when he would finally wake up. The nurse went through her procedures and then the doctor arrived. He looked in Austin’s mouth and quickly left the room, returning a minute later with a tongue depressor. He called me over to show me Austin’s huge and swollen tonsils, explaining how this is a problem, and all along I’m thinking he’s just pointing them out, advising me kindly to see an ENT, sharing tangential information. But no. Then he drops the bomb. “We can’t sedate him; it’s too dangerous.”
He has to go through anesthesia instead, which doesn’t hold these same respiratory risks (although is a bigger deal in other ways that I can’t quite explain). Of course, anesthesia couldn’t fit us in today and the MRI has now been rescheduled for next Wednesday. In the afternoon. On a day when his class is going on an end-of-the-year field trip to Beachwood playground that will inevitably include many delicious snacks. Uuuuuuugggggghhhhhhhhh. I will bring him anyway that day, convince the class to hold off as long as possible on putting out the food, offer more popsicles and leave early.
I guess we weren’t quite specific enough with our wishes. Next time, we have to include the date.
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.
Austin will have an MRI on Thursday afternoon. It took some juggling to get this scheduled because we were initially hoping for a morning slot, since he can’t eat before being sedated. But the next available morning slot was on May 31 and none of us (neither Mark and I, nor Austin’s doctors) were comfortable waiting that long. Turns out he can have clear liquids until noon and, lucky boy, popsicles count as a “clear liquid,” so the snack at school that day is settled and I’m not dreading the slow ticking by of the hours that morning.
We’ll see his oncologist after the scan and I imagine we’ll have some results to discuss before we leave that day. But it’s important to note that we don’t expect to get either good news or bad news out of Thursday. We simply expect to get more information. I know, now you’re all going, “Whhhhaaaaaattttt??” But here’s the deal: the MRI cannot tell us if what’s inside him is cancer. It also can’t tell us if it’s not cancer. The purpose is solely to get a good, clear image of the “thing,” its size and, especially, its location. We may be able to see if it’s filled with fluid or not (both of which could be Wilms tumor, so that isn’t terribly relevant either). Barring some bizarre turn of events, like if the thing has doubled in size since last Monday (which would obviously be very very bad) or if it has disappeared completely (which would be good, but confusing), we hope to walk away from Thursday with enough information to help us determine what to do next.
If we want to know definitively what the thing is — and, as of this moment at least, we most certainly do — then we have to biopsy it. The MRI will let us know if the radiologist can attempt a needle biopsy instead of having to do a surgical biopsy. If the thing is located in a spot that’s easy to reach with a needle, without having to go through too many other tissues or organs or what-have-you, then that will be considered good news. If it’s not reachable, then we’ll have to decide whether we move ahead and do a surgical biopsy, which is the more aggressive approach because it poses many risks to the kidney and his insides, due to the excessive amount of scar tissue they’d have to cut through to get there. Or if we take the dramatically less aggressive approach and “watch and wait,” by doing repeat scans more frequently to monitor the “thing,” without taking any action until it grows or changes.
It’s confusing, I know (as so much of this has been), but the MRI is really just a first step toward what will ultimately be either good news or bad news. Like we’ve done so many times before, this is a take-one-tiny-inch-at-a-time kind of deal. One tiny inch is about all I can handle right now.