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The first day was a success. Both boys came home beaming, happy with their friends and thrilled with their teachers.
As we rode our bikes to the obligatory celebratory dinner at The Colony that evening, I asked Austin about the one boy I’d heard him mention by name. “So, do you think you’ll be friends with Ben?”
“I already AM friends with Ben!” he shouted back. After the bikes were locked and we walked out onto the patio to meet Mark, whose family should be seated at the very next table but Ben’s? The boys squealed and shouted and introduced each other to their families. I definitely think this little friendship is gonna work.
Unfortunately, the start of the school year for kindergartners is dragged out ever so slowly. One third of the kids go on each of the first three days. And because they started on a Thursday and because that Thursday was right before a long weekend, Austin still hasn’t been back! He did wake up in the middle of the night last week and cry about how unfair it was that Braedan got to go the next day and he didn’t. Let’s just hold on to that thought for as long as possible, kiddo. Finally, tomorrow, he’ll have his second day of school.
But school or not, we were all sure to make the most of the last official weekend of summer. Another few days in Chautauqua with friends, spent waterskiing and tubing, hiking the caverns at Panama Rocks and roasting marshmallows well past bedtime.
It has been a good summer indeed.
I’ve always loved the beginning of a new school year. The cooling down of summer signaling the start of my favorite season (which seems to have started a month ago in these parts), the excitement of the first day back to school — finding out who your teacher is (I don’t remember ever receiving that information in advance like our kids do now), seeing old friends, making new friends. My next door neighbor Jenny and I would plan our matching first day outfits well in advance of Labor Day, making sure we looked perfectly twin-like in an effort to further confuse our schoolmates.
And then as I got older, it was field hockey season and Friday night football games, when schoolwork still seemed fresh and classes still interesting. There was a what’s-gonna-happen-this-year sense in the air, a hint of possibility pervading everything you did.
And now tomorrow, my big boy Braedan will finally head off to second grade (his district has managed to schedule the latest start date of any in the city, dragging on the endless fighting between two unnamed brothers who have spent waaaaaayyyyy too much time together lately). I am super excited, Braedan slightly more subdued about the whole thing. He has a fantastic teacher and I think this will prove to be an exciting and engaging year for him.
While Braedan heads off to school, Austin and I will kick off Childhood Cancer Awareness Month by going to the hospital for a day full of labs (blood counts and renal function), abdominal ultrasound (to check his kidney and liver), chest CT (to look for possible metastasis to the lungs), ECHO (to check 1) the size of a heart already enlarged due to years of high blood pressure and 2) possible damage caused to said heart by chemo) and a visit to the oncologist. I plan to have all that completed in time to pick up Braedan at 3:15 (luckily, my mom is on standby to relieve me at the hospital if things take longer than expected, which we really should expect by now).
We’ve packed it in over the past two weeks with a last minute mid-week visit to Chautauqua, where we hiked through the stunning Panama Rocks:
A trip to the zoo yesterday (post-crowds since most schools were alreday back in session):
And today, we had our requisite end-of-summer trip downtown for lunch with Daddy, which always requires dressing “like a lawyer” (the ties didn’t last through lunch like last year):
Now the backpack is packed, lunch is ready, clothes are clean. Time for a bath and early to bed. And a new year begins ….
I feel like I’ve spent the better part of 2011 complaining about the weather. First, it was the endless snow, waking up every Friday morning to an additional twelve inches of white stuff covering our world. Then it was the endless rain, day upon day of spring spent running from one destination to another, head down and umbrella up, puddles of mud blocking your way. And now, inevitably, it’s July in Cleveland, with its requisite 90 degrees and humidity so thick you start sweating the second you get out of the shower.
I’ve wondered if maybe I’m just getting old, like now I’m grumpy and can’t tolerate what we once thought normal. But then I listen to the local meteorologists and am strangely comforted by the fact that we do indeed keep breaking new records. We all know this past winter was an extreme case, as evidenced by the five snow days. I think I had five snow days in my entire young life. They were so rare I can remember them still: One in second or third grade spent in the yard of our Swiss neighbors, the Zuberbeulers (could that really have been their name?) building snow forts and having epic snowball fights. Another (which might have been a cold day, not an actual snow day) in eleventh grade the day before winter vacation that surely wrecked havoc on the teachers’ gradebooks since many papers were due and many tests were scheduled that could hardly be repeated two weeks later. And this year … five. The state legislature actually changed the law in January to increase the allotted days from three to five. So you don’t need me to tell you that this winter was unusually awful.
And then on the first day of May, all the news contained the delightful little fact that we had accumulated more inches of rain in April than in any previous month on record. And then yesterday was the hottest day in sixteen years, since another 98-degree day in July of 1995 (which I spent in the even hotter city of Houston, Texas).
I’m relieved when I hear these reports because I feel vindicated, like at least it’s not me. At least the weather really is as bad as it feels. And I’m not the guy climbing up ladders to install windows or paint the exterior of houses, working six or seven days a week to make up for the lost jobs of springtime. Nor am I the child (i.e. Braedan) off at camp with the distinct privilege of horseback riding for an hour each day, which requires wearing jeans and a helmet. So I really shouldn’t complain. But I still do.
But now the storm has come through and cooled things down a good twenty degrees, so it’s out to sit on the front porch swings with my sweetie(s) to enjoy a cool summer evening.
We are indeed home. There were no additional delays yesterday, despite a worrisome IV line that required some tiresome arm positioning, and blood was finished by ten past one. I woke up my sleeping boy, who aroused himself long enough to scream bloody murder in my arms as said IV was finally removed, spurting blood all over both of us. We quickly departed and were home in bed by 1:30.
Today we were right back in the swing of things, playdates and a hike along the creek at Squaw Rock followed by a picnic dinner and much wrestling in the grass with friends at Wade Oval. Tomorrow is our annual end-of-summer trip downtown to meet Daddy at his office and go out to lunch, for which Austin is most excited.
So, as quickly and deeply as we plunge into that dreaded world of the sick, we likewise fully re-embrace the world of the living. Here we are, here I am, shouts Austin in his every move, let’s make the most of it.
Well, a few stitches can’t slow this boy down. Aside from missing his last week of swim lessons (much to his dismay — not), he’s doing everything normally: running, playing, climbing. Here he is at Horseshoe Lake Park a few days ago climbing higher on the rope structure than he ever has before.
The boys even went to Chautauqua with my parents from Saturday to Sunday, while Mark and I hit the eastern Ohio wineries with some friends, a nice and much-needed break for us. Because, did I happen to mention, that last Tuesday, the day of “the incident,” was also our 8th wedding anniversary? I know, just our luck, right? We had celebrated on Monday by going out for a nice dinner, knowing that we’d be in Kalahari on the actual day. And then were thinking we might get to go out for a drink that night after Mark’s parents came back from their dinner to watch the boys in our hotel room. But no, instead we spent another anniversary in a hospital, three years after “celebrating” our 5th as newly minted parents of a child with cancer. The 8th, while bloodier, was definitely better.
And in the never-slowing-down category, tomorrow we head to the hospital for a whopping five doctors’ appointments. Yuck. First we have follow-up with the radiation oncologist which is no big deal. Then a chest CT, which he gets every three months to check for possible cancer in his lungs. After that, an abdominal ultrasound to check for cancer in his kidney. Then it’s vascular mapping, a procedure done for the surgeon who would eventually place a dialysis catheter, if and when such a thing becomes necessary. This is not pending, as you know, but in the case of either new growth (cancer) or worsening kidney function, we might need to move quickly to remove the kidney and start dialysis. This mapping of Austin’s veins will help the surgeon decide whether to place a fistula or graft, which really means nothing to you (or even us) until it happens.
And finally we end our day by visiting the out-patient oncology clinic for a check-up and labs. My big worry (well, besides the big worry) is that he lost so much blood last week that he’ll need his next transfusion sooner than we’d expected. I’m just hoping it’s not next week because the boys are headed back to camp and I’m planning to complete (I mean, start) all the organizing, filing, unpacking, and cleaning that I’ve had all summer to do.
It never does slow down . . .
Some of you have asked recently about the progress of Austin’s treehouse. Weeeelllll, there’s a reason I haven’t mentioned it. And that’s because it isn’t happening. Or isn’t happening yet.
A few weeks ago, we heard from Make-A-Wish that his project can’t be covered by this year’s budget and would have to be moved to the next fiscal year which starts in September. Which means that, by the time it goes through their approval process and the weather has turned, it won’t be built until next spring.
This is majorly disappointing for a few reasons. First, we of course want the kids to have it, especially after having talked it up for so long. They’ve actually stopped asking recently, which strikes me as sort of sad. But more than anything, I feel really bad that our wish is turning out to be a burden to the organization, which is so not what I had intended. I had been under the impression that this was the sort of wish they wanted people to ask for, since it would be done primarily with donated materials and volunteer labor, but now I’m not sure that’s the case. I asked our wish coordinator if we should make a donation to Make-A-Wish that could go directly toward Austin’s treehouse and she said, No no no, let them worry about the details; we should just enjoy ourselves. Part of me wants to cancel the entire thing and just build it on our own but then I’d feel bad towards them, especially the two women who are in charge of Austin’s wish and repeatedly tell me how excited they are to make this a wonderful experience for the whole family.
What to do, what to do? I guess if this is my big worry, then I can’t really complain, right?
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.
Well. Listen to this one.
We went in early this morning for repeat labs, mostly to draw blood so they could do the necessary “type and cross” matching in the blood bank for tomorrow’s transfusion, before heading to the ultrasound. Everything went fine with the ultrasound; before we even left, the radiologist (who usually waits to report to our oncologist before giving us any indication of how things look) said everything appeared stable since the last time — he just wanted to double check the specific measurements against previous images before issuing the final report.
So we left feeling good, we’d made it through yet another month with no new growths, ready to plod through tomorrow and then bring on the weekend. Around 4:30, I got a phone call from the hospital and I picked it up hoping it wasn’t Austin’s oncologist wanting to talk. (Whenever he starts with, “Is this a good time? Can you talk?” I get nervous.) No, it was instead his nurse practitioner, which immediately put me at ease because I know she’s not gonna be the one charged with breaking bad news.
And the very first thing out of her mouth was, “Krissy! You don’t have to come tomorrow.” Turns out our routine labs from this morning showed that Austin’s hemoglobin has started to rise on its own, barely squeaking past the threshold that requires blood. So, no transfusion, no IV, no shuffling a sick Braedan from one playdate to another, no eight to nine-hour day in the hospital. All of a sudden (did someone say, “Whoosh”?), we were handed a gift of a day. And not just any day, but a gorgeous sunny-but-not-humid 80-degree Friday before a holiday weekend.
Maybe the small-but-significant difference in hemoglobin was a fluke of the lab — one day’s blood tests looking slightly different from another day’s — or maybe, just maybe, that kidney is indeed picking up and truly beginning to heal. Maybe we don’t need donated blood products every week or month any more. Maybe his body can do this on its own.
The final results from the ultrasound were just what we’d hoped for: no changes since the last time. And Austin’s nurse practitioner ended our conversation with a reminder to come in for labs in two weeks. Two weeks! Finally.
Interestingly, Austin’s creatinine (one of the key kidney numbers we wait for each week when we get his labs done) has been slowly going down. Which is good. It means that his kidney function is, if not returning to normal, at least improving.
Of course, for us, this makes any future decision even more difficult. I mean, it’s considerably easier to justify removing a kidney that looks bound to fail, that’s hanging on by a mere thread and about to die off on its own anyway. It’s another story altogether to take out an organ that seems to be doing just fine — or, in Austin’s case, fine enough.
It’s not a huge jump or anything, and is still in the too-high range, but much closer to normal than it was three weeks ago, or than it’s been for the past few months. This is no guarantee of anything so we’ll just watch and see if this trend continues. His potassium and phosphorous levels have also been “great” (doctor’s words) which means that we are doing a good (enough) job with his diet. That comes as huge relief to me as the primary feeder of my children since this diet has been nothing but a source of stress and frustration.
But other than that, we are simply enjoying our summer: hanging out with friends, swimming — at least daily, if not twice daily — in the pool, picking mulberries from a tree at Braedan’s school and making them into waffles and pancakes. Although we certainly think about Austin’s kidney and although I certainly write about it, we are content not making any decision for a while. Someone asked the other day what would finally change, how we would go from our current wavering to a steadfast choice. Mark’s reply was that it’s simply a matter of time. Now is not the time for making that decision. Now is the time for resting and relaxing and recovering. When the time for the decision comes, we’ll just make it.