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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 . . .
It’s not all fireworks and ice cream cones around here, you know. Austin’s health, current and future, continues to be paramount in our minds and in our lives.
At his appointment last week, his oncologist said that as long as his renal numbers remain fairly steady, we could go two weeks before our next visit. That seemed like a huge vacation — two full weeks with no trips to the hospital! We haven’t had such a significant break since last November. Well, lo and behold, his creatinine was the same as it’s been for several months but his phosphorous level was up enough to warrant a visit to the nephrologist today. She did a series of labs to check for many of the complications that befall patients with chronic kidney failure, like brittle bone disease (caused in part by excess phosphorous in the blood). And, of course, because she switched him to a new blood pressure medication, we’re due back next Wednesday for another visit.
Then there’s that pesky issue of what to do about Austin’s kidney, which we have yet to resolve. We go through periods where we feel fairly certain that we’ll remove it at the end of the summer, and then we think of a zillion reasons why we shouldn’t.
In terms of his general health (not counting that small issue of his cancer returning), he is much better off now than he would be on dialysis. I forget if I explained that the GFR score is equivalent to percentage of kidney function, but we can basically say that right now Austin’s kidney is functioning at between 25 and 30% of full kidney capacity. Dialysis only replaces about 11% of kidney function (yeah, how’s that for bad news? All that hassle for 11%?), which is why patients with regular kidney disease don’t start dialysis until they have a GFR below 15. So you can see that in that regard, he is much better off as is, chugging along with his defective partial kidney, than with no kidney at all.
It’s a pretty significant distinction after all. Here’s a child, in his prime years of physical, emotional and academic development, with a major organ functioning at thirty percent versus ten percent. Removing that kidney has implications across the board for him and his longterm health. Not good implications either.
Except for the one good thing that can come out of it. Except for the flipside of our constant dilemma: What if there are tiny invisible cancer cells lying in wait inside that precious kidney? And what if, given this current reprieve from chemo and radiation, they gain strength and gather together, forming a new army ready to wage war on his small body yet again? What if we wait one month, one week, one day too long before making this critical decision? What then?
So we fill our days with ice cream and fireworks, big underdog pushes on the tire swing and extra chapters of the latest favorite (The Trumpet of the Swan) at bedtime. It hovers there, our reality, even when we’re dancing in the crowd to raggae music, Austin spinning in circles around us to the beat of Carlos Jones. Our reality remains. But while Mark and I can not escape the weight of this decision, our children can.
I know it sounds cliched and a little bit trite to hear people go on and on about how cancer makes you appreciate every moment, how you learn to live life to the fullest and feel thankful for each small thing. But it’s really true.
Everything we do seems to be tinged with a heightened sense of importance, which often leads to a heightened sense of fun. We have filled our past three days of official “summer” with lots and lots of swimming and friends and backyard fires and bike rides and fireworks and even a baseball game.
Friday night we went to Austin’s first Indians game and Braedan’s second (both in a loge — I don’t know what that boy’s gonna think when he goes to a “real” game!). They thoroughly enojoyed themselves, mostly climbing around on the seats and coloring pictures of Slider the mascot. The night ended with a massive fireworks display, worthy of any town’s official Fourth of July show.
As I sat under the dark summer sky with Austin in my lap and Braedan behind me screeching with delight at the fireworks exploding in front of us, I couldn’t help but think how very very lucky I am for now. Six months ago, we didn’t know if we’d get to now. I am so so thankful for now.