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No, I’m not talking about LeBron James (again). And I’m not talking about whether or not we should build our own treehouse. I’m talking about our big decision. The decision. And we’ve made it.

Mark and I both feel comfortable leaving Austin’s kidney in until we have a real reason to take it out. We will continue to do abdominal ultrasounds once a month to watch for potential growth. And if anything shows up, we will obviously remove that kidney without hesitation. But it simply does not seem right to us to do something that will cause such immediate and long-lasting harm if we don’t absolutely have to.

Without doubt, we’ve given this great and careful consideration. We have the backing of Austin’s doctors, who have promised that if they believed we were doing something dangerous or too risky, they would intervene.  We know that, in addition to the obvious risk of cancer returning, there is also the possibility that the kidney will simply fail on its own before April 2012 (when Austin will finally be eligible for transplant). And of course, if that happens, we will remove the kidney without hesitation and start dialysis. In fact, we expect that. We’d both be surprised (and thrilled) if his kidney lasted for the next twenty months.  And if it doesn’t, well, yeah, we’ll be devastated but at least we’ll know that we’re doing these awful things because we have to.

The research and facts had us split down the middle so we relied heavily on our gut instincts to help solidify this decision. One key moment was imagining myself during the actual kidney-removing surgery.  I have paced those hospital hallways many a time while my child was laying on a sterile operating table with strangers in face masks opening up his small body. Six-hour, eight-hour, even ten-hour separations while Mark and I were filled with fear and anxiety. But every single time, I knew it had to be done. Not one of those surgeries was an option. For some of them, I was even excited: Go on, get that obscenely enormous tumor out of him. Or Come on now, good or bad, find us some solid information so we know what to do next.

But this? For this, I imagine myself second-guessing, triple-guessing, our decision every step of the way. I imagine myself at that moment of no return, racing back down the hallway and bursting through the doors through which no parent is welcome and insisting they stop. Stop, stop, you can’t do this to my child!

That is no way to think.

And then I imagine being at home the night before, climbing into bed with my boys and telling Austin what was set to take place the following day. How on earth could we explain such a decision to our happy, healthy, normal child? A boy who, despite all the extraordinary things he’s been through, still has completely ordinary expectations: He will go to school and have playdates, he’ll swim and learn to ride a bike, his body will function like everyone else’s. How could we look into his big brown eyes, again bordered by long dark lashes, and say, “Well, honey, this just seems like the right time to remove a part of you that you absolutely require in order to live a good life?”

No, no, that’s just not right. We will do what we have to do when we have to do it. And not one moment sooner.

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?

We could tell Austin’s life story through his hair.

At birth, he, like his brother before him, had a head full of dark bushy hair. (And yes, for what it’s worth, I did have heartburn.)

At about six months he, like his brother before him, exhibited classic signs of male pattern baldness:

It slowly grew back and by the time he was diagnosed, he had these two spectacular sprouts of hair caused by a double cowlick.  We called them his horns:

Then of course, he was rendered completely bald during his first rounds of chemo. Innocent bystanders used to comment about how their children had also been bald as babies and I could just never let it go and instead had to say something like, “Oh, he wasn’t bald as a baby. This is because of chemo.” I always said it in a cheerful voice so as not to make them feel too bad, but they rarely knew how to respond after that.

Early chemo days

Still smiling even though he had to bathe in a shirt
thanks to that damn Broviac line!

And then, by the spring of 2008, my cancer-free toddler grew new hair. And, whaddya know, that trademark Gallagher black grew in blond!

As time went by, it darkened but the first growth was still lighter than the rest prompting an amazing number of people to ask if I “did his tips.” Really? He wasn’t even two. Who would even think to color a two-year-old’s hair?

By last summer, it was mousy brown and extremely long. Here he is getting his shaggy rock star locks trimmed by Grandma Gallagher:

Then winter arrived and with it that brutal rogue that is cancer. On the verge of losing all his hair again, Austin helped out with shaving Braedan’s and Daddy’s:

Shortly after starting chemo, I was coming away with clumps every time I ran my fingers through his hair. Look closely at the sheets behind him in this pic taken while he was sedated for radiation:

Lintbrushing the sheets just wasn’t enough any more, so a shearing was in order:

Then a very strange thing happened. His hair began to fall out. No, that’s not the strange part, we were expecting that. The strange part is  that it began falling out in bits and pieces with these bizarre patches left behind.

Each day, the patch changed slightly as a few more random hairs fell out. It reminded me of a computer generated image of the polar ice caps shrinking over time due to global warming. Day by day getting smaller and smaller until there was simply nothing left.

And then, within a few short weeks, it was gone, with only the eyelashes and eyebrows remaining. Another six weeks of chemo and those too had vanished.

Until one morning last week, when he woke up, felt his head and announced, “I think I have more hair today. I need to look in the mirror.” Which brings us to today (yes, he’s wearing a cape — and why shouldn’t he?):

And somehow, through it all, what remains is that smile.

and a little paint on his nose

Today was fine. Long and boring and exhausting the way that standing around an airport doing absolutely nothing all day can be exhausting. And that’s what we did: nothing really, except roll spirals of Play-Doh and paint with watercolors (I on paper, Austin on his legs).

But he was a trooper. Not a single peep out of him when the IV was placed in his hand. I’m pretty amazed by how he handles these physical invasions, minor though they may be. He doesn’t even squeak when he gets his weekly blood draw, and the IV, which I was nervous for, was quick and easy. Funny how his brother screams every time I get near him with nail clippers. Oh well, to each his own.

The blood took seven-and-a-half hours and will hopefully last us six weeks. It blows me away to think we used to have to be there almost every day, sitting through transfusion after transfusion. When you’re so deep in the trenches of cancer warfare, it doesn’t seem as if you’ll ever emerge, as if you’ll ever again live like a normal human being. And then, sometimes without warning, you come out the other side and return to the land of the living, and it’s almost as if it never happened. That way of life that you were forced to adopt as your own suddenly feels completely foreign.

Life once was normal and then, whoosh, it was anything but. And then whoosh, by an incredible stroke of luck or strength or something, life is suddenly normal again.

We’ll take it.

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.

Austin has a Witness t-shirt. Long-sleeved, black with the Nike swoosh and those stark white capital letters. He’ll keep wearing it. He’s a witness after all. As are we all.

I’ve witnessed greatness and heroism and bravery many times over. Every time a teacher stays late to help that struggling child. Every time a nurse cries with a family. Every time a doctor takes a middle of the night call from scared parents. Every time someone gives a little more than they can afford. Every time someone makes the right choice instead of the easy choice.

I saw it when my lifelong friend lost his leg from the knee down and, instead of giving up and sitting in front of the TV, he became a triathlete. I see it every day when Austin wakes up and, even though he has a thousand reasons to hate the world and another thousand to fear the world, he chooses to love it instead.

I witness them everyday: Small bits of greatness. Quiet acts of heroism. Ordinary miracles. And you know what? So do you.

Let’s celebrate that.

I have a few suggestions for replacement images.

I have never been to a Cavs game. Ever. And boy, am I regretting that now.

So, yeah, I’m disappointed. Just like very other sports fan in Cleveland. And almost every other living, breathing human being in Cleveland. This definitely sets us back about a decade in our never-ending, never-satisfying quest for a championship.

But — and no, I’m not going to say, “But there are two wars going on and there’s an oil spill and children have cancer,” (even though there are and there is and they do) — but simply that it’s his life and his choice. So maybe he’s chasing money and glory and a high-rolling life? That’s his right. Many of us have left our hometowns for higher salaries, more glamorous zip codes, more exciting lifestyles.  That doesn’t make us traitors.

Now I agree that this sucks, that Cleveland deserves a break and definitely definitely deserves a championship. And I also agree that he owed this city the courtesy to not make that announcement in such a grandiose fashion. He had to know that people would take it personally and he should have shown more respect and foresight than that. But ultimately, it’s his life. And he gets to do with it whatever he wants.

And I thought Mark and I were making The Decision of 2010. Geez.

Le Braedan, 2004

Going . . .

Gone

One of the things I like about WordPress is that it tells me how readers found my blog. When I view my “Stats” page, there’s a list that shows the words people entered into their search engines that led them here.

Many people are searching specifically for me and this story; they’ll type in words like “Krissy Dietrich,” “Krissy Gallagher,” “Krissy Dietrich Gallagher” (with every imaginable spelling) or they’ll search for “little boy on the news with Wilms” or “Rainbow letter Austin Wilms.”

Then there are all sorts of people who find me by accident, such as the almost daily hits I get from those searching for “Kraftmaid warehouse” or “dark kitchen cabinets” or “pictures of mudroom.” Luckily they get directed to the specific appropriate posts or they’d wonder what one earth they’d gotten themselves into!

My most-visited blog post of all time is one I titled “Kissing Your Best Friend.” It actually has nothing at all to do with kissing anyone let alone a friend. It was simply my way of describing the vulnerability I felt upon sharing my query letters with my readers. But, oh my god, that post has been hit constantly for more than a year now. The searches vary from the not too surprising: “What should I do now that I’ve kissed my best friend?” and “got drunk and kissed my friend” (often on a Saturday or Sunday morning) to the shocking (and especially shocking because of the sheer number of times I’ve seen it): “Mother kisses son’s best friend.” Many many times, people. Way more times than should be representative of the number of mothers kissing their sons’ friends. And I’ve even seen searches from the mothers themselves, as in “I kissed my son’s friend,” and I can’t help but think “Really? And you’re seeking answers online? You gotta look a lot farther than Google to solve that one, honey.”

Maybe if I really wanted to drum up visitors to my blog, I would come up with racy titles for all my posts. Or I could just stick strings of timely keywords in my tags like “Megan Fox beach photos” or “Lindsey Lohan jail time.” (I just checked MSN for their hottest searches — I don’t have time to be that hip to the latest celebrity gossip.)

But then there are the medical ones, which I get every single day.  I can just see these people sitting alone at their computers typing scary and foreign words into search engines: can a child get chemo while on dialysis?, what does it mean when a doctor sees a “shadow” on your kidney?, pictures of PICC line, PICC line versus Broviac versus Mediport, cystic kidney lesions, “jump start” a kidney, kidney donors and cancer risk, and the one I got just last week that really struck home:why wilms’ tumor not going down in size. “Why wilms’ tumor not going down in size.” Oh, why indeed.

They go on and on, day in and day out. New people starting this terrifying journey, seeking some answers, some insight, some comfort from the box of wires on their desk. I wish I could climb into my computer and follow the lines back to them. I wish I could sit down next to them and hold their hands and share any small bit of knowledge I’ve gained along the way.

But I have no way of locating them, no reverse search option. I can only hope they get something useful from me; that they leave breathing easier and not doubly terrified. That they find that comfort from the box of wires on their desk.

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.

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