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I guess that last one should have been titled The Year in Picture. This one can be the Year in Pictures.
2012 started with a family trip to Jamaica, with requisite swimming, horseback riding and playing with cousins:
Once back at school, Braedan was the youngest kid in the district to join Ski Club. He enjoyed it immensely despite record little snowfall:
At the end of February, Mark and I went to Charleston, South Carolina with friends. A wonderful weekend in a beautiful and charming city:
March was dedicated almost entirely to St. Baldrick’s events, from the Bluffton Basebald trip to our Cleveland Heights event to the always fun downtown head-shaving. I was surrounded by bald people all spring long, which could not have made me more proud:
Then we ventured off to Colorado for a spring skiing adventure, complete with an ambulance ride to the medical center for Austin’s low oxygen levels:
We fully expected May to kick off the grand two-year cancer-free celebration, only to instead plunge into sixteen days of darkness and despair upon believing Austin’s cancer had returned yet again. A lucky double rainbow and a long overdue MRI provided intense relief at the end of the month and our good-year-gone-bad reverted to great.
Then it was summer and all the joyous relaxation that comes along with it, including endless hours of baseball. baseball, baseball, swimming and waterskiing in Chautauqua and biking through Europe:
And of course, our tenth wedding anniversary and our super celebration-of-everything party:
Fall meant back to school for Braedan and off to school for Austin:
More travel, this time for Mommy and Daddy on their own:
Plus birthdays and fall sports, school events and some “little” surgeries, a lot of lost teeth and holidays, holidays, holidays. Of course, this was all interspersed with fighting, crying, whining, random ailments and injuries, complaints about school and battles over homework, boredom, sibling rivalry and the like. But I suppose that’s what makes it all worth it. The year ended with a few days of skiing in Chautauqua in near magical conditions:
It was definitely a year to remember, filled with significant milestones and an awful lot of globe trotting. But what matters most is what remains: health, happiness, family, friends, luck, love, laughter. We’ve got it all.
We’ve just spent two weeks in Chautauqua and the boys are now finally at an age where vacationing with them feels like, well, a vacation. Even when my husband is back in Cleveland.
They made some new friends up there who happen to live just two doors away and it was play, play, play from morning til night. I love that kind of freedom, reminiscent of the 70s and 80s (and surely earlier) where the kids can just wander off to knock on someone’s door: “Can Taylor and Amanda come out to play?” The unplanned, unstructured playdate is not dead, I assure you!
So much of being there feels like stepping back in time. From the rocking chairs on the front porches to the unique thrill of sparklers to the carnival-like amusement parks.
Remember these old school rides?
Of course, they’ve been modernized with the addition of a rock climbing wall:
We even got Braedan up on water skis, which brings me further back into my childhood. Hours and hours out on the boat, circling around as the latest water skier masters their craft. He was fabulous and so so proud of himself.
So, now I dig my way out from the piles of mail and laundry … and the stifling heat of Cleveland in July. With images like this in my mind:
We’ve been in Chautauqua for the past ten days. Each day I think I’ll go brrow my dad’s laptop and dash out a quick update but somehow my days are filled and by the time the kids are tucked into their bunks at night, I am done. Mark was here for 4th of July weekend and then it’s been a steady stream of my girlfriends and their children. At one point, we had seven kids in the house, all younger than Braedan. Between waterskiing and tubing, running and biking, shopping for, preparing and cleaning up after the never-ending mealtimes, we are all plenty busy … and plenty tired.
The kids are at such a better age for a trip like this without Daddy. They’ve got friends to entertain them day and night and, with Gram and Gramp right next door, there is always someone willing to go fishing off the dock or give an extra push on the swing. It’s really been quite nice and, according to Mark, we are very lucky to not be home since the painters are going full force, resulting in the entire house’s worth of windows being covered with plastic (not so nice when it’s 90-plus degrees out … and no, those hundred-year-old houses do not have air conditioning!).
But I am super excited to go home and see firsthand the progress that’s been made. The pictures Mark texts me at the end of each day are pretty fabulous. The painting should be done by week’s end and I promise that as soon as I’ve seen it in person, I’ll post photos here.
But for now, I’ll fall asleep yet again with the waves crashing outside my window and I’ll have my morning cup of coffee out on the porch and then the kids and I will plan another day of chock full of relaxing.
I know it’s been a while, but there’s really nothing much to write about these days. Bad for the blog stats maybe, but good for our lives!
We spent another lovely weekend in Chautauqua with friends, the only photo of which is below (if you look real closely, you can just spy the kids marching out on the dock to throw rocks):
Oh, there’s also this photo, which is too good not to post, of the pie made by Christie and enjoyed by all:
Then home this evening to steamy hot Cleveland, where the kids went for a swim at my parents’. Here’s Austin in his life jacket . . . and nothing else:
Tomorrow the boys start a week of SuperHero Science Camp at the Children’s Museum (and I swear I haven’t been this excited for camp since I was 12). Unfortunately, Austin’s hemoglobin is low again (or perhaps I should say, low still) and he does indeed need that blood transfusion we managed to get out of a few weeks ago. So he’ll miss camp on Tuesday for a lovely eight-hour transfusion instead. Oh well. He’ll be back to superhero status by Wednesday. No doubt.
It had been almost a full year since we’d last been to Chautauqua. And that’s a very long time for us. We left in a hurry one Friday last July when our friend’s mother was in the hospital, shortening our vacation by a few days to be with them.
And then August came and our house was newly on the market so we felt pressure to spend every Saturday mowing and mopping to prepare for Sunday’s open house. Then September, and we got the keys to the new house and wanted nothing more than to delve into cleaning and painting and wallpaper-stripping. Suddenly it was October and unexpectedly cool and rainy, forcing the cancellation of a possible weekend or two at the lake. And before we knew it, all hell broke loose and we found ourselves hospital-bound for the following six months.
So a year goes by and we’re somehow older and somehow wiser and everything seems different and everything feels so, so the same. We arrive late Friday night and the boys go scurrying off to revisit their bunk beds, where they sleep squashed together on that oh-so-sacred top. The next three days are filled with trips to the waterfront to throw rocks, boat rides to Bemus Point for ice cream cones, and endless firework displays from all corners of the lake. We eat breakfast, lunch and dinner out on the porch, usually before a spectacular sunset. We venture indoors only long enough to watch some equally spectacular soccer matches. And everything is as it’s always been.
We are a family of four, alive, together and ever hopeful for the future.
Of course, all this hemming and hawing about what to do next could be quickly rendered null and void if something suspicious shows up on that kidney. Austin has an abdominal ultrasound this Thursday morning, which, as you may or may not remember, is all we’re allowed to do with a GFR under 30.
His kidney isn’t functioning well enough to filter out the contrast he’d need to drink for a CT scan or the gadolinium needed for an MRI. In fact, for patients in end-stage renal failure — which is several steps beyond where Austin is — MRIs are associated with this horrific condition that causes thickening of the skin and organs . . . and has no treatment. Basically, your organs keep thickening, leaving you completely debilitated, until you just die. Not something I’m prepared to sign my okay to on a routine consent form. So that leaves only ultrasounds which are good because they don’t expose him to unnecessary radiation but aren’t quite as precise in finding small or hard-to-detect growths. We’ve arranged for all of our ultrasounds to be done by the best doctor possible, one who knows Austin’s kidney very well, so that makes us feel confident that this method of “watching” is good enough.
That will take place this Thursday and then Friday Austin needs yet another eight-hour blood transfusion. His kidney is not making something called erythropoietin which stimulates the production of red blood cells, so his hemoglobin can’t fully recover from the effects of chemo. (Anybody have to consult an online dictionary to get through this post? I did, to triple-check my spelling!) This will be the first time he’s had blood since the removal of his PICC line so we’ll see how he does with a peripheral IV in his hand. Hopefully one will do the trick and not be “blown” by the heavy volume over the course of the day. Inserting a second IV halfway through might just be too much for the little guy.
So, we’ve got a few days that will feel like we’re back on the hamster wheel of treatment. And then it’s off to Chautauqua for a weekend of boating and fireworks. Start countdown now . . .
I know why Austin enjoys the hospital so much. He has my complete attention when we’re there. All the usual distractions are erased: laundry to fold, computer to check, big brother to care for. Nope, when we’re there, even just for our twice-weekly clinic visits, I have nothing but occasional phone-surfing to draw me away from painting, reading, playing with the little man.
This past Thursday, while Austin received a blood transfusion over three-and-a-half hours, we sat next to each other on a bed in front of an eight-foot window looking down on the construction site six floors below us. We must have sat there “in the sun” for at least an hour, gazing at the forklift and bulldozer driving back and forth across the dirt. Then he sat in my lap on a chair and reminisced about last summer at Chautauqua: “Remember when . . .” he’d start each sentence, recalling boat rides and fireworks and trips to the mini-amusement park down the road.
“We’ll do that again,” I kept saying over and over, already looking forward to our upcoming summer, when cancer could be well behind us. But I know that boat rides and fireworks and trips to the amusement park might not happen too quickly. We might still be in the midst of cancer when summer arrives. We are indeed halfway through the mandatory eightteen weeks of treatment. But those extra twelve weeks loom large on the horizon. The fact that Austin is doing so well, tolerating chemo and bouncing back after each dose, will probably bite us in the ass in the end. As long as his bone marrow hasn’t been totally depleted, we really have no good excuse for stopping treatment in April and will almost certainly continue through July. Ugh.
This protocol, the one designed for relapsed Wilms, actually calls for up to six rounds of the twelve-week maintenance cycle we’re currently in. As I explained a while back, few children are able to withstand the full ninety-week protocol (six 12-week maintenance cycles after one 12-week induction cycle and one 6-week consolidation cycle) because their bone marrow is so completely destroyed. When we signed on for this treatment plan, we committed to at least one of these six-week cycles and two if Austin was able.
And, of course, as of now at least, he is able. So strong, little Austin, too strong. If he breezes through the next three doses as he has through the past three, we will definitely be in for the long haul. There’s a part of me that hopes he isn’t strong enough just so we can be done. But, as his oncologist has reminded me too many times, our ultimate goal is not an easy few months or a pleasant summer but survival.
Survival. There’s just no arguing with that.
I’m in self-imposed exile here, ensconsed in Chautauqua with my boys for two weeks. My dad asked me the other day if I was going through withdrawal from the blogosphere and I said, “Oh no, I’m still connected, I’ll still update every few days,” but somehow the days pass by and I never turn on the computer. It’s nice for me to wake up each morning (late, by the way — my boys have been sleeping in, today Austin got up at 9:40 and Breadan at 10:20!) and have nothing to do, no daily list to adhere to. We hang out, walk to the playground, the boys went fishing with their grampy today, the first day that actually feels like summer after a week of cool windy weather. I go for runs, tried out our new kayak yesterday, am repainting the porch furniture with Sarah. But no list of people to call, meetings to attend, blog posts to write.
So, life is good.
I’m ready to start thinking about my queries again and wanted to thank you for the comments and encouragement following my last posting. It was interesting to hear from so many people with experience in one or another of the arts, about rejection and success and luck and perserverence and all that. I mentioned one of the messages to my dad and he said that the same thing is true in all aspects of life, from business to school to the literary world. Everyone is out there working and waiting and hoping for someone to recognize their talent and hard work and sometimes the right people get overlooked and sometimes the right people get rewarded. I am certainly not giving up and will rework my query and send out many in the following weeks. My mom and I are going to an open mic and “literary feast” over at the Institution this Sunday, so we’ll see if that provides some inspiration (or connections!).
A small request, and I don’t mean to sound as if I’m fishing for compliments, but some of you have sent messages that describe what Austin’s story, or my rendering of it, has meant to you over the past year or two. Now I know you haven’t read the actual book, but those of you who’ve followed the Carepage for all this time have a good sense of the framework on which it’s built, so if you wouldn’t mind sending me a quick line or two, a little gem, that distills for you why you’ve kept reading . . . that would really help me define the value of the book to the outside world. This is particularly helpful coming from people I don’t know or don’t know well (or didn’t know well before all of this), since you would more closely represent the general book-buying public. In essence, why would someone who doesn’t know me and doesn’t have any reason to care about Austin’s well-being, enjoy this book? Thanks, guys . . . I like that I’m comfortable enough to even ask for such a thing. You are, as always, appreciated.
For now, the boys and I are eagerly awaiting “Daddy Day,” which is tomorrow (and can’t come soon enough). As I left them in their bunk beds tonight, I could hear Austin say, “Bay-den, when Daddy be Chautauqua?” and, from his coveted perch in the top bunk, Braedan replied, “Tomorrow . . . do you want me to come snuggle with you?”
Like I said, life is good.
Do bloggers get time off for summer vacation? Maybe where readers are allowed a break too but are mandated to return to regular reading on a set date in the fall? I know there was a time not too long ago when everyone would get mighty worried if they didn’t hear from me for more than 48 hours. Rest assured we are fine and healthy and just busy, busy, busy (and not yet willing — or skilled enough– to blog from my iPhone).
Spent a long lazy weekend at Chautauqua with some of Mark’s old Peace Corps friends, two couples and a little boy who we haven’t seen in six years. It was lots of fun, even for the one other wife and I who have never set foot in Ukraine (and don’t really plan to despite our husbands’ insistance we’d “love it”).
Braedan and Austin immortalized in the Michigan gear brought to them by our
Ann Arbor friends (much to Mark’s dismay!)
We’ve been home for two days and are off again tomorrow for a cold and rainy weekend in Cape Cod (sans daddy!) for my mom’s family reunion. Hmmm, sure seems like fun to be stuck in a hotel room with two active little boys for two days . . . I wonder if Austin is old enough to sit through an entire movie yet? I’ve heard Up is appealing to all. Maybe that will be our authentic Atlantic Coast experience.
Back to our regular schedule next week with some pretty exciting news to report . . .