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How on earth did we end up here? That’s what was running through my subconscious as I attempted to fall asleep in a hospital room on Monday, July 30, 2007, with Austin in a crib beside me. How did this happen?
An excerpt from that, you know, “book” of mine.
I won’t go all the way back, but just know that Austin was a healthy, happy and totally normal little guy for many months. In the end of June of that year, he had his nine-month check-up with his pediatrician Dr. Senders, a legend of pediatric care in our community. Mark and I sat down with this doctor when I was pregnant with Braedan and he sold me after five minutes of explaining his Daily Dose of Reading program. A doctor who spends his free time and money and energy encouraging families to read to their young children? This was my kind of guy. Then he said it wasn’t his job to tell us how to raise our kids, but to “guide and support” us, as no one would know our children better than we would. So much for interviewing three pediatricians—I signed up then and there.
So I brought Austin in for the usual well visit—a few vaccinations, his latest height and weight, and a general check-up. My little guy was in tip-top shape except that Dr. Senders thought he heard a tiny murmur when he listened to his heart. He explained that there could be a small hole in Austin’s heart which he assured me was not a huge concern as they’re relatively common and often heal on their own. I have friends whose children had holes like that which healed so I was genuinely not worried. I’m just not a nervous parent, I do not envision horrid diseases every time my kids cough or hiccup. Dr. Senders recommended Austin see a pediatric cardiologist to determine if we needed to take any further action. He referred me to Dr. Bockhoven, affiliated with Akron Children’s and not our home hospital, because I’d be able to get a quicker appointment.
“Wait a minute,” I interrupted while he wrote down the name and number. “I thought you said it was no big deal. Why do I need such a fast appointment?” I was still calm but not as calm as I’d been two minutes before.
“No, it’s not a big deal.” Reassurance. That’s all parents really need. “But I think you’d like to hear that from a specialist. This is more for you than for Austin.” More reassurance.
So, truly not fazed by this news, I went home and the issue completely slipped my mind. My girlfriend Becky asked me about it a few weeks later and I guiltily realized I hadn’t followed through; I had actually forgotten about it! Proof that I was indeed not worried about Austin’s heart, and the first of many lucky breaks. I finally called and Dr. Bockhoven could have fit me in the very next week except that I was planning to take the boys to my family’s summer house on Lake Chautauqua for two weeks. No problem, they scheduled me for the Monday after our vacation.
We spent two lovely weeks up at the lake. My parents were there, providing necessary help since Mark came only on the weekends. Every evening as I sat nursing Austin on the little second floor porch-turned-nursery, I could hear the sound of Braedan’s endless chatter wafting through the air as he and my mom worked in the yard, he pruning bushes with kid scissors and she gardening without the harsh sun. Braedan, you see, is a constant talker. He’s been narrating our every move since he was one-and-a-half, talking from the moment he wakes up until the moment he goes to bed (and sometimes even in his sleep). I have never met a three-year-old with a vocabulary like his. He uses words like “splendid” and “impressed:” “I am so impwessed you finished that puzzle, Mommy.” He also say things like, “My body is telling me it doesn’t want carrots” or “My body feels like it needs ice cream” because when he was potty-training, Mark and I used to tell him to listen to his body. Ha!
He and my mom are two peas in a pod, they’re so deeply connected. It’s not your regular love between a grandmother and her first-born grandchild; it’s like they’re buddies. They relish being together and never tire of each other’s company. So evening gardening is a sacred activity for them both.
I was struck during our Chautauqua weeks by how quickly Austin was growing: he was pulling himself up to standing and playing independently and acting like such a big boy. Every time I turned around, he’d be into something new, constantly exploring and totally fearless, unlike his cautious older brother. Classic second child, I thought, a fearless second myself. My parents took Austin and Braedan to the small-town amusement park on two (blessedly quiet) occasions and Austin did great without me, happily eating ice cream and watching his big brother enjoy the rides. Life was moving along at a fine pace with no worries.
And I was moving along, already ready for the next big thing. Mark and I had been told in pretty clear terms that having another biological child was “not medically advisable.” I’ve had type 1 diabetes for twenty-one years, you see, and two pregnancies were more than enough burden on my body. I’m healthy, always have been, but I do have a serious disease … something I need to remind myself of every now and then. I love my boys, there is no doubt about that, but I’ve never been afraid to admit that I want a daughter. It’s not just the adorable little girl outfits and decorating a nursery in the colors of the moment (although admittedly that sounds pretty great); it’s the later-on stuff, the growing up, planning the wedding, watching a daughter birth a child. My mom and I are very close. We love being together, we relate and connect and talk each other’s ears off. And I want that. So Mark and I’ve been thinking about adoption. We have a lot of love to share, we can afford it, there’s no good reason not to. Or at least there wasn’t right then as I sat up in my Chautauqua room each night completely engrossed in a new book about international adoption, already envisioning bringing our future daughter home from Guatemala or China.
It wasn’t all rosy though. Austin was fussy at night after having been a fairly good sleeper, but he also grew five new teeth during those two weeks, something I ended up repeating to doctor after doctor and nurse after nurse and intern after intern when they all walked through our door and recorded our history, always including the question, “Has he been in any pain lately? Fussier than usual?” Well, as anyone with small children knows, cutting five teeth is a rather unpleasant experience (for parent and child!), so any unusual fussiness got chalked up to that.
A few days before our trip was scheduled to end, my dad commented on Austin’s belly, asking me if it was always so hard. I looked at it and felt it and agreed that it was slightly distended but it really didn’t alarm me. Babies get that look of big firm belly with skinny limbs when they’re gassy or constipated and my response was simply, “Maybe he has to poop.” Even now, now that I know the truth behind that big belly, I don’t look back and think, “God, I should have known something was wrong.” It just looked full. And I blew it off.
But there is a moment, one that I play over and over in my mind, that happened on our last night there. Mark had come for the weekend, along with our friends and their two-year old daughter, so there was much wine and laughter over Saturday night’s long dinner. It was late and Mark had fallen asleep putting Braedan to bed (shocker, right? Who’s ever heard of a husband failing to emerge from bedtime?). Austin had been up and down, asleep and awake throughout the evening and was very hard to soothe. I had finally given up on rocking him in his bedroom and had taken him outside. We were sitting on the front porch, just the two of us, and I was holding him in my arms as I sat on a swinging chair, and he just wouldn’t stop crying. And I remember so distinctly, like it was yesterday, cradling him in my arms and whispering in his ear, “Austin honey, I don’t know what’s wrong with you.” Oh, I shake my head when I picture the two of us there on that dark and starry night because if I had tried to imagine what might possibly be wrong with him, I could not have even come close. Not even close.
The next day came and as I was packing all our gear and getting everything ready for the car ride home, my mom watched Austin, since Mark and Braedan were already on the road. But my mom, who never calls when she’s babysitting an unhappy child, who never asks for help or complains when a grandchild in her care is missing his own mother, this time, this day, she brought Austin back to me and said she thought there was something wrong. She thought his stomach hurt, because he kept rubbing his side. Yes, that very side that my dad had questioned just a few days prior. So I changed him and nursed him and away we went, leaving our relaxing vacation and our normal lives in our wake.
We got home and you know how it is: there are piles of mail to go through and phone messages to return, laundry to be done and groceries to be bought. Mark stayed home Monday morning because we were about to begin a partial kitchen renovation (how’s that for great timing?) and he wanted to meet with the contractor. Another lucky break since Braedan stayed with him instead of coming to Dr. Bockhoven’s with me and Austin. I packed lunch so we could run a zillion errands afterward, and we headed off for what we thought was a regular old doctor’s appointment. And here’s where we began our dizzying descent into another, much darker, world.
In walked Dr. Bockhoven, the first of many heroes we would encounter in this great saga, who, after one glance, felt Austin’s stomach and voiced concern: “Does his belly always look like that?” He sent us for the scheduled ECHO which happened to include an abdominal ultrasound. And it lasted forever. Really, we were up on that table together for more than an hour. Austin was crying, I was lying there on my side nursing him and thinking how glad I was that Braedan wasn’t with us, and the technician, this lovely older woman, just kept checking and checking and checking. It didn’t quite occur to me until afterwards that she spent way more time looking at Austin’s side than at his heart, the original purpose of our visit. Before we walked out, she asked if I had any other children and then handed me two stuffed animals and wished me a gushing and solemn farewell. I thought she was being friendly or felt bad that it had all taken so long. I didn’t understand that she had just made a terrible discovery.
Dr. Bockhoven, who had been watching on his office computer, met us at the door and led us down the hall past the room where our stroller and lunches and normal lives were waiting and into another room where he pointed to the phone and said that Dr. Senders wanted to talk to me. I sort of chuckled as I picked up, making some stupid joke about this not being routine protocol and nodded my head as he told me that my baby had a seven-by-seven centimeter mass in his belly. (We learned the next day that it was quite a bit bigger but seven-by-seven sounded plenty big to me at that moment.) That moment. The moment that sits like a big fat black smudge down the center of the page that is our lives, dividing everything into before and after. There is no real way to describe it. I cannot separate out all that came next, all that I now know, from my innocence and naiveté at that particular moment in time. I’d like to say the world stopped spinning but it was more like the world started spinning faster and I stopped. “Surreal,” though overused is the only accurate word. I remember Dr. Senders asking me how Austin was right then and I laughed and said he was eating the phone cord and wriggling to get free from my tightening grip. Totally normal Austin behavior. This child? This child has a tumor?
I have to admit, as implausible as it sounds, that I did not think cancer. Well, I’m sure I must have thought it but I did not believe at that moment that my child had cancer. Dr. Sendres had said the word “mass” actually, not tumor. And what the hell is a mass anyway? That’s not necessarily bad, right? . . . Right?
Dr. Bockhoven and I walked back to the room where we had started hours earlier, when we were different people, and he tried to explain things to me. I remained calm, nodding my head, not grasping the severity of the situation or at least not allowing myself to. Dr. Bockhoven was apologetic, sorry that he, a total stranger, was the one to break this news. And, while he no doubt has to share bad news with parents, this bad news is of a completely different nature. Tumor discovery is not his area of expertise. I thanked him time and again because, truly, he went above and beyond. He could have easily sent us back to our regular doctor with a simple, “You should probably have this looked at.” And you know me, I would have waited until Kirk and Sarah’s baby shower was over and the kitchen was finished and back in order before I would have gotten around to making another appointment.
No such pause here. Instead I’d been told by Dr. Senders to go home, pack a bag and check in at the emergency room. “No need to run red lights,” he told me so I tried to sit calmly through them but was getting increasingly anxious by my inability to reach Mark. He was not answering his cell or the home phone, and Mark is outrageously reliable, always there when you need him. I ate my peanut butter and jelly sandwich on the drive (isn’t peanut butter and jelly supposed to make everything better?) and Austin, exhausted from what we then considered a major medical procedure (oh, irony), quickly fell asleep in his car seat. I got home where there was still no sign of Mark despite his car in the driveway, and Morey, our contractor, had questions. Leaving Austin asleep outside, I brushed Morey off and started grabbing clothes out of the enormous pile of laundry to throw into my overnight bag. I was later able to laugh at the outfits I picked; you would have thought I was going on a tropical vacation with the assortment of cute summer skirts I threw in there. I was rushing around trying to remember my glasses and diabetes supplies and feeling so thankful that I actually had a charged cell phone (a total rarity for me, the queen of the dead cell phone). Morey stopped me to say he couldn’t find Mark and needed the dimensions of the fridge we’d ordered, but his words took on a Charlie-Brown’s-grandma-on-the-phone quality, so I interrupted: “Tell Mark he needs to call me. Austin has a, a thing. A mass. Something growing inside his stomach that isn’t supposed to be there.” There: I’d said it out loud. And finally, for the first time, I started to cry. But there was no time for this, so I left Morey confused and guilty as I peeled away.
And lo and behold, right as I reached the corner, Mark appeared, finishing up a run with Braedan asleep in the jogging stroller. I waved him over impatiently and it all came tumbling out, words and sobs and fear and uncertainty. He was calm (Mark is always calm), said he’d bring Braedan to his parents’ house on the other side of town and meet me at the hospital. He kissed me, told me he loved me and rushed home to find Morey running down the driveway to repeat the news.
I called my mom, not expecting her to be home from Chautauqua yet but figuring I could leave a message. Well, she answered and now I had said it three times to three people, “Austin has a tumor,” and it was starting to feel real. The cloud of calm, the swirling strangeness of the morning, the fog I had inadvertently walked into, was starting to lift and I was slowly realizing that this nightmare was happening. This was actually happening. She asked a bunch of questions to which I had few answers and said she’d meet me at the hospital.
Here comes another part that I can now laugh at because it is just so me. Dr. Senders had told me to use the valet parking outside the emergency room, but I, little Miss Independent, I-refuse-to-admit-that-this-is-a-real-emergency, decided instead that I would park in the parking garage just like everyone else. Only the parking garage I chose happens to be located many a secret corridor away from the ER. So there I was, one hand pushing a stroller that held only my overnight bag, with a sleeping Austin in my arm, as I wandered around the basement hallways for a good fifteen minutes, one tunnel leading to another, every sign pointing back the way I had just come. I was down by the loading docks—maintenance guys were driving little tow-lifts around—and nobody could seem to point me in the right direction! I had fallen into the rabbit hole, Alice in my own awful wonderland.
Finally a sympathetic woman walked me from one winding hallway to another and into the back entrance of the emergency room. They whisked us right in—they’d been expecting us—and I was steered to a row of seats in the back to wait for Transport, which was basically someone to walk us back up to what would soon become “our floor” and which (of course) was where I had started out fifteen long minutes before. This is when I bumped into Marissa, a woman I knew from our community Baby & Me many years earlier. A pediatrician doing an ER fellowship, she had taken the call from Dr. Senders describing our case. But it wasn’t until she saw us that she realized she knew me. As Transport arrived and I got up to leave, she gave me a hug and said, “We can treat this. This is one we can treat.” Damn right they can treat this, they better treat it.
It had never occurred to me that it might be something they couldn’t treat.
I was led back upstairs via a much more direct route, and through two sets of doors where washed our hands in between because of “compromised immunology,” a little sign of what was to come. My mom was already there, wondering what on earth had taken me so long, and there were a zillion nurses checking us in and doctors and residents and interns coming through and taking our history and making notes and nodding reassuringly. And Austin, he was just as regular as could be, playful, wanting to get down on the ground and crawl, totally oblivious to the crisis brewing around him. My brother Kirk showed up, all too familiar with that hospital since Sarah had been released just the day before after ten inpatient days to stop pre-term labor. I hadn’t even been over to visit her yet—that was on my list for the afternoon, along with cooking them dinner. Kirk handed me a pen and a notebook and told me to write down the names of all the doctors I’d meet and any questions that popped into my mind. I took it, thanked him and, that night when they’d all gone off to their own safe beds, I started writing. And never stopped.
The rest of the afternoon was a blur. Mark arrived shortly and we stood shoulder to shoulder while a flood of doctors marched through our space, asking the same questions as the one before them. We were transported back to the basement for an abdominal ultrasound. At some point in the evening, we remembered to order sandwiches from the cafeteria. Later, after everyone else had left, Mark and I sat in the dark hospital room with Austin asleep in the crib next to us. We talked in hushed tones, not quite able to finish our thoughts, starting sentences and then trailing off into nothingness.
Dr. Senders appeared, long past the time he should have been home with his own children, for what amounted to a counseling session. But we were so not ready for all that he told us—it was so much more than we could wrap our heads around. He talked about the stages of grief and how Mark and I might each be in a different stage at any given moment and how important it would be for us to be aware of one another’s needs. He talked about Braedan and how we had the power to shape this journey for him, not by being falsely optimistic or hiding the truth, but by answering his questions and providing him with just enough information—and not too much—so he would feel safe. He talked about all the help we’d get from others and warned us not to let coordinating that help become an extra burden. He said we were about to start a marathon, one we hadn’t trained for, and that we needed to pace ourselves and rest on the rare downhill because we were bound to hit spots that would be harder than we could ever imagine. He promised us we would reach the finish line. And I, needing something concrete to hold on to, grasped at his literal words and felt optimistic—I’ve run marathons! I can do this! But I had no idea.
Before he left, he said that that particular day, July 30, 2007, was the first day of the next stage of our lives. Everything after that day would be different than everything that had come before. But we weren’t ready to know that yet.
We had no idea.
A few months ago, I happened to catch part of an interview on the radio with Willie Nelson. Must have been NPR or something, I don’t completely remember, but I do know that he was asked if he could recall the single greatest moment of his life. He hemmed and hawed a bit and eventually settled on something great with a lower-case g, a relatively mundane and everyday activity like playing with his kids or walking with his wife or performing on a stage (everyday for him, at least). Now, it’s likely that Willie Nelson simply can’t remember every hazy, blurred-by-pot moment of his life. But it’s also possible that sometimes the “best” moments are just moments, the simple every day interactions we have with those we love: sitting on the porch with great friends eating delicious food, drinking wine and laughing til your stomach hurts. Or snuggling up in bed with your two sweet boys on a lazy Sunday morning. Or knowing, in a quiet, easy sort of way, that you picked the right man with whom to spend the rest of your life.
My best moments, for the most part, are small: Austin dashing out the kindergarten door every afternoon and literally jumping into my arms, half big boy with his backpack slung over his shoulders and half sweet baby who just can’t wait to get back with his mommy again. Or Braedan leaning over after a particularly long chapter of Harry Potter to kiss me on the check and say, “Thanks, Mom. You do great voices.”
But every once in a while, there is a moment. A “The Moment” kind of moment, great with a capital G. I had one of those one year ago today. I was exhausted and worried, more worried than I had ever been. I was trudging through each day, living by the motions only, trying with minimal effort to enjoy those beautiful spring days, the last before the storm of relapsed cancer and kidney failure that I felt certain was about to come. I still held on to a tiny shred of hope, planted in me by a double rainbow that appeared right when I needed it most. But it was tiny, that shred, so small I could barely grasp it.
The day, Wednesday, May 23, was long — as hospital days are wont to be. Following Austin’s MRI, we had returned home mid-afternoon and, when he seemed fully recovered, actually thought we might make it to his 6 ‘clock baseball practice. So we ate a super early dinner and I sent him up to change into his gear. When he returned instead in footie pajamas, shivering from the after-effects of anesthesia, I knew practice was unlikely. Now I have a funny sense about needing to fulfill obligations and still thought we should go. Mark, on the other hand, is a bit more relaxed about such things and can see that a 5-year-old’s tee-ball practice falls pretty low on the must-do list in life, especially when you think said five-year-old might be dying, so our plans quickly changed and home we stayed. And good thing. Because mere minutes after the boys had trooped upstairs for baths, I went to check, yet again, for either voicemail or email containing some kind of news from our day’s tests. As soon as I walked into the office, the home phone rang and, glancing at our doctor’s cell number I picked up with a pithy, “Well, I’ve been waiting for you to call.”
“I’m on my way over,” he said, without introduction. Oh. Oh. This man has come over before. And let me tell you, it’s never been for anything good. So all I could manage was sarcasm: “Oh, you must have good news to share, huh?”
“Yes,” he said in a voice both earnest and urgent. “The best news. I’m about to pull in your driveway.” And that’s the thing that gets me now when I look back at that day and can’t help but think, What if we’d gone to baseball practice? What if we were suffering through pop fly drills on the playground at Boulevard instead of at home when he pulled into our driveway?
I yelled up to Mark but the bath water was running and god knows the boys are never quiet, so he heard nothing until the doorbell rang two seconds later. I was right there, Jeff didn’t need to ring the doorbell at all; I’d been watching out the window for his car. And he walked in the door waving the official results in his hand and I couldn’t quite hear what he said beyond, “He’s fine; it’s nothing” and I cried and cried and cried in his arms like I’d never cried before. And Mark, hearing the doorbell, had come to the top of the stairs and could only see us down there both crying and his poor heart stopped but only until he heard laughter in our tears. Laughter in our tears because this was the best news. The best news.
And that will remain forever as my Willie Nelson moment, my best ever, stands-above-all-the-rest kind of moment. But now, as this month of dwelling and reminiscing comes to a close, I look forward to much smaller moments. If I get nothing greater for the rest of my life than swinging on the swings alongside my family at our small Point Chautauqua playground with my feet hitting the sky as the sun sets brilliant purple and pink and orange over the lake, I’m okay with that. That’s plenty big for me. I’ve had enough big moments for one lifetime.
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.
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 days 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 to 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.