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So, I should probably expand a bit on last week’s ultrasound posting. It is indeed slightly premature for me to declare that Austin is three years cancer-free when we have yet to see his new oncologist (who we met for the first time in February) or to receive an all-clear regarding his lungs. All of that will happen at the end of next week, when we visit the Clinic for labs and a chest x-ray. But, since his lungs have always been far down on the list of things we worry about and since the abdominal ultrasound is what has revealed anything and everything suspicious or dangerous over the past four years, we nonetheless feel pretty darn good with last week’s news.
It’s funny how this one crept up on us. This three-year mark. So unlike last year’s anniversary, for which there was so much anticipation and excitement, all of it dashed with that horrible May 7 appointment. And then we plunged into that surreal in-between world, filled with only fear and dread but no answers or action. I do much better when there’s action. When I can see the mountain in front of me, even if it’s absurdly steep, I’m able to gear up, draw upon my strength and plan out exactly how I’ll scale it. But when it’s only fog I see, only vague warnings about a pending cliff or a jagged slope with nothing concrete or real, then I’m paralyzed. Last May, I felt paralyzed. Terrified beyond anything in memory (and there’s been much terror to remember). I had no idea what we were facing, couldn’t even begin to plan our attack — but I felt certain something was out there. Something deadly was lurking there in the fog, waiting for us to pass, waiting for him. And I was paralyzed.
Of course, it all passed as nothing. Those sixteen days a mere post-script to our crazy story. And I find myself back again, in the very same place I was when I wrote this on May 6 of last year, the night before his faulty “something” scan.
And I’ll say it again, with a slight edit to the number: Come what may, it’s been a damn good three years.
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.
Mark and I are currently halfway through a five-day ten-year anniversary trip to Napa Valley. I know, are you just dying of jealousy yet? But do note that this little trip was five years in the making.
Five years ago, in the summer of 2007, Mark and I had the grand idea that we were going to travel to Napa in the fall, celebrating having made it through the first year of our second baby. I had done a bunch of research and had chosen a place to stay, whose name and contact information were scribbled onto my weekly To Do list, a room ready to be reserved with a single phone call.
Needless to say, that phone call never took place. And, instead of an autumn trip to Napa, we embarked on a three-year journey to the center of hell. Otherwise known as the world of pediatric cancer. I could launch into a litany of “instead of this (wine tasting), then that (chemo),” but I’ll leave it at this: this trip’s been a long time coming. (And I can only laugh to imagine having left a recently weaned Austin with my parents for a week, when I went on to nurse him til 25 months.)
But oh my, are we enjoying ourselves. Talk about indulgence! I think I’m consuming as many calories at breakfast (fresh pastries from the famed Bouchon Bakery delivered to our porch) as I usually consume in a day. And certainly drinking as much wine in an afternoon as I usually do in a week. And loving every minute of it.
Today’s tastings were part of a 30-mile bike ride, definitely the way to go (luckily the temperature had dropped from 100-plus to the mid-80s).
And we are staying in just about the most fabulous and charming place I’ve ever stayed (and I’ve stayed in lots of charming and fabulous places!). It’s eight cottages, each with its own mini-kitchen, indoor gas fireplace, outdoor wood firepit, all encircling a small grassy field perfect for croquet.
Mark and I seriously encourage seven of our favorite couples join us here for a repeat trip in the next five to ten years. Feel free to nominate yourselves!
Mere minutes after that quickie marriage ceremony, my dad waved his hand at the army of workers behind us, busily setting up tables and chairs or creating extravagant floral displays and said (only half-jokingly), “Now you guys are married. What am I paying for all this for?”
Oh dad, marriage schmarriage. That’s for the wedding.
We never had any intention of forgoing the pomp and circumstance of a great big wedding celebration, but the man we’d chosen to officiate our ceremony, our grad school professor, mentor and friend Robert Lewis, was not actually “official.” But no question he was our guy. Brilliant and hilarious, his friends booked him to speak at their funerals long before it was necessary. I actually had the honor of speaking at his funeral, after he passed away on this very date seven years ago.
Fittingly, Robert, Mark and I all met on the same day, at grad school orientation. And I was equally taken by the tiny octogenarian in low-top All Stars as I was by the tall, dark and handsome classmate who sat down beside me in the lecture hall. So we worked around the legal requirements and got married the day before our wedding.
And what a wedding it was. My photos are somewhat limited, so here’s a picture of our ceremony spot taken today:
And here are some shots from that glorious day ten years ago.
. . . on Friday, August 2, 2002, Mark and I were married by a Chautauqua County Justice of the Peace in a tiny five minute ceremony on my parents’ lawn, witnessed by our two mothers.
And today (yes, same skirt):
But just wait til you hear what we did ten years ago tomorrow . . . .
Well, my friends, it’s more than time to celebrate. When Austin first finished cancer treatment way back in the winter of 2008, I remember thinking about having a big party until my mom and I sat down with a list of registered Carepage readers and realized we simply didn’t have enough room for all those people. But now Mark and I have a huge yard with a huge porch and even more to celebrate (as that 2008 party would have obviously been a bit premature).
Austin is not keen on being the center of attention, so we’re wrapping many milestones into this one bash, and … on Saturday, July 28 we are hosting a great, big, long, loud and late party to celebrate all that is right in our lives: Mark is turning 40 in November (if you can count that as something that is “right” in our lives….), our 10th anniversary is in early August, our house projects are pretty much/almost/really close to done and, of course, last but far from least, Austin is two-years cancer-free.
Our fun and fabulous (and tree-friendly) invitation can be found here. Please know that even if you don’t receive an official invitation delivered to your email, you are indeed invited. Yes, all of you. Of course, I have no idea who or how many “all of you” are, but if you’ve ever gone to bed at night with fear and sadness in your heart after reading my updates or with relief and joy in your heart after reading my updates, then I’m talking to you. Leave your computer behind and come celebrate with us in person. But you must let me know that you’re coming! We really need a head count if we’re going to be even the slightest bit prepared. Of course, there are a few of you who may want to plan a surprise visit, but you better really be worth it. No fair “surprising” me with your presence if you live ten minutes away.
And note, Austin’s good health may be at the core of this party, but Austin himself will only be here until about 9pm and then he and Braedan will be shipped off somewhere quieter. In other words, call your babysitters, people, this is a grown-up party.
See you in a few weeks . . .
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.
Here’s a little more “feel-good magic” for you, this time closer to home.
Austin had an appointment with his nephrologist last week and that little kidney is holding steady. His creatinine was .75, one of his lowest measures yet. Well, not “yet” like forever, but at least since the kidney failure scare of March and April 2010. All other numbers have held steady, which means that, while still officially in Stage 3 renal failure, this child’s half-kidney is still kickin’.
Which effectively removes one of our life’s greatest fears: years of kidney dialysis, being hooked to a machine every other day for four hour stretches, all in a windowless room. Nope, that’s not likely to ever ever happen — ever — because my child’s two-year scans are scheduled for May 3.
That’s right. Two weeks from now, Austin will have an abdominal ultrasound and a chest CT that could and should mark him two-years cancer-free. Two years cancer-free. TWO YEARS CANCER-FREE. Something we’ve been waiting for for nearly five years.
I, more than anyone, should know not to count my chickens before the hatch, but really, . . . we have no reason not to expect that these scans will be as clear as the others have been for the past twenty-three months.
And, of course, I’m also well aware that clear scans that day guarantee nothing. They certainly don’t mean that new cancer couldn’t start growing the next day. Or that old cancer couldn’t return the day after that.
But — and it’s a big ol’ but — the odds are enormously in our favor once we make it past the two-year mark. Enormously. The chances of his Wilms tumor ever returning will be very very slim once we’ve hit that milestone. And, as important in our minds right now, if his kidney should fail he’d finally be eligible for transplant.
Seventeen days. And we’ll finally get to pop open that fancy bottle of champagne my dad’s been saving for us for years. Seventeen days.
Yesterday was an anniversary I will never manage to overlook: nine years since I married someone who is pretty much the best guy in the universe.
Over the weekend at my reunion, I spoke with a couple different people who made comments like, “I don’t know how you did what you were able to do,” or “I never would have had the strength to handle childhood cancer like that.” I’ve heard these things before, since the very beginning of our journey four years ago. And I have continually insisted that I don’t believe them. I think that most of us have a well of strength deep within that rises to the top only when needed. None of us walks around with our full force on display, in an I-can-handle-anything-that’s-thrown-at-me kind of way. But we step up when needed, taking the worst of life and making it through. Because we have no other choice.
But I will admit that I do have something unique, one extra benefit that made handling such a massive trauma many times easier. And that is Mark. Having a steady partner by my side, one who never kept score (how many hours have I spent at the hospital versus how many hours have you), one who reminded me, without judgment, to focus on Braedan when necessary, one who was quietly realistic, forcing me to look at ugly truths while holding an acceptable amount of hope at the same time, … it made all the difference. There is no way I could have done this without him. And I’m not just saying there’s no way I could have done this alone; that’s obvious. But Mark is not interchangeable with any other good-enough husband. There is no way I could have done this without Mark.
Of all the strength I showed, and continue to show as the public face of Austin’s sickness, only half is mine. The other half was handed to me by the man I love most.
Happy nine years, honey. May the next nine be a heck of a lot easier.
I celebrated my twentieth high school reunion this weekend. It was so so fun, great to spend time with my current friends, my oldest friends, and even some new friends. I’m not going to dwell too much on the weekend’s events (some of them are a little blurry) but here is a picture of me and my girlfriends before heading out on Friday.
The really remarkable thing about the weekend is that Saturday, July 30 was the four year anniversary of Austin’s diagnosis and I just now remembered that! Just minutes ago as I was standing in the kitchen washing dishes and I thought briefly about how quickly summer’s going by, can’t believe it’s August 1st and all that, and suddenly I was like, “Oh my god! August 1 … July 30 completely passed me by!” It was nowhere on my radar screen, overlooked amidst the celebration. Which I think is really really awesome.
So, now we just look ahead. Another year and then another, filled this time with health and normalcy instead of hospitals and sickness, happiness and hope over fear and misery. And one day, Austin and Braedan (and Toni) will be celebrating their twentieth Heights High reunions.
