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For your viewing pleasure, here are the latest pictures of the boys’ treehouse.
From the outside:
And the inside:
OK, that’s all I have for you this evening. Now back to your regularly scheduled programming ….
A little piece of “news” that may have gotten lost during our vacation: Austin’s treehouse and the generous team of builders who made it happen were featured in The Real Estate section of the Cleveland Plain Dealer on Sunday, January 2. Interestingly, we had no idea it was going to be published until Mark’s mom called that morning.
Mark got up and started flipping through the piles and even opened up the Real Estate section while I, from across the kitchen, glanced up and said, “Wait. Is that Austin’s treehouse on the cover?”
And indeed it was. A lovely picture of the four of us in front of the treehouse and a great article about all the people who made it a reality. I now have a full list of the companies and professionals who donated their time and materials and can get busy writing some Thank You notes!
The second page of the article includes “Austin’s story as written by his mother Krissy,” which is, well, true. It was taken from an email I sent to some of those involved in the project who had asked for “Austin’s background.” It’s fine and accurate and all that, but I sort of wish I’d have known it was going to be in the Sunday edition of Cleveland’s major newspaper so I could’ve brought my A-game!
Wow, we thought we had a snow storm last week?
To help you imagine long lazy summer days with the sound of squealing children wafting through the neighborhood air, here’s an article that was written about Austin and his treehouse for the December edition of the Heights Observer.
Too bad the treehouse is buried right now . . .
So, yesterday was pretty good. As we’ve all had to learn (the hard way), nothing in this game is ever straightforward, there are always always nuances.
First, the good stuff: His kidney and liver are unchanged. The spot on the liver is still there; it’s still hard to see clearly (visible in some planes but not in others) and still impossible to identify but it hasn’t grown and hasn’t spread, which makes it highly unlikely that it’s a tumor. Our oncologist actually thinks we can skip a month and if that next one is also unchanged, we can move to ultrasounds every three months which would be awesome.
His bloodwork was also good. A new low for his creatinine which means that kidney is just working away. The normal range for a small child is 0.3 to 0.8. Back in April and May, when he was well on his way to full blown renal failure, his creatinine was as high as 1.75. His previous low five weeks ago was 1.03. Yesterday’s? 0.87. Yup, that’s right–almost normal, almost perfect.
His hemoglobin continues to lower but at a very slow rate. I’d been thinking he might finally need a blood transfusion, since the last was eleven weeks ago, but it looks like we’ll get at least another month before that. So again, good news.
Now for the chest CT . . . and the nuances. The official report noted two tiny nodules, less than half a centimeter in size. Tiny little spots that, of course, are impossible to identify. Nodules are harmless, tumors . . . not so much. The radiologist went back to look again at the last scan from August and determined that yes, the spots were there then too but they’re so small that she didn’t even note them in that report. Not that they’ve grown — they haven’t — but for some reason she was able to see them more clearly on this particular scan.
Most of Austin’s previous chest scans were done under sedation, which causes part of the lungs to collapse slightly, meaning that we can’t compare the two most recent scans to the many done before. So ultimately we don’t know if these little spots have been there for years or if they appeared sometime in the last six months. Dr. Auletta said that no one would call these cancer; no doctor or radiologist studying these slides would consider these spots anything worth worrying about.
So we won’t either. We’ll check again in three months and hope for news that, if not better, at least isn’t worse. We know this process will never ever be without questions and unknowns and small shadowy spots that could drive you crazy . . . if you let it.
But we won’t.
Oh, and when we pulled in the driveway at the end of our long afternoon, I discovered three women I’ve known all my life, old neighbors who are now grandmothers, sliding down the slide from Austin’s treehouse. They’d passed by on a walk and decided to come back and take a peek and then of course wanted to see the inside and once up on that platform found that it was easier to get down by slide than by ladder. They were all a little embarrassed to have been caught back there, but I love it. I’m serious when I tell you to feel free to stop by and check it out in person. I’m happy to catch any of you sliding down our slide.
Yesterday, Make-A-Wish hosted a small gathering to “reveal” the treehouse. It was such a neat day for the boys, starting with the delivery of one hundred helium balloons, which Mark placed on the top dormer of the house.
Then the arrival of family and friends to celebrate alongside us. I so wish I could have invited all of you, but I think when it’s finally painted and we’ve put all the finishing touches on the inside, we’ll have a little Open (Tree)House of our own and you can all come marvel at this spectacular piece of construction.
One of the builders came too, with his wife and three little girls. I wish there was something I could do besides say “Thank you” over and over, but there doesn’t seem to be. Each day as the guys were out working, I’d offer coffee or water or lunch but no, nobody would accept anything. I suppose if there’s no way to pay them back then we just have to pay it forward.
All in all, it was a really special day for all of us. Tonight, as the kids were waiting to go trick-or-treating, Mark asked them what their favorite holiday was. Braedan said he likes all of them: “I love candy so I love Halloween. And I love eating turkey and pudding [I really don't know where he got that pudding thing] so I love Thanksgiving. But I love getting presents plus it’s my birthday, so I love Christmas.” And I said, “Yeah and hunting for eggs is fun so we like Easter. And fireworks are fun so we like 4th of July.” And then he said, “Yeah and wishes-come-true are fun so we like yesterday.”
Yeah, wishes-come-true. In more ways than they will ever understand.
Finally, some photos. It’s still not done but should be by the end of this week.
First, here’s a picture of the house in Up, which it’s designed to look like:
And here are some in-progress pictures:
We gave our swingset to some friends (after all that trouble getting it to our new house!), since you can see it would have been a bit redundant (not to mention crowded back there).
So, that’s it for now (“That’s it?” Ha). More to follow this weekend.
I know I implied I’d give you a treehouse update but the entire thing is under wraps right now (literally!) so I figured I’d wait a few more days for the big reveal. Just know that it is pretty darn spectacular.
The other exciting thing that’s happened in the past week is that as we were driving to the airport last Friday I received a email from Writer’s Digest informing me that an essay I submitted in their annual writing competition had placed. Not like first place or anything, but 60th in the memoir category. Now I know 60th doesn’t sound like much but last year there were 14,000 entrants so placing at all is not too shabby.
Here it is:
Did I really just see that? It couldn’t have been. It couldn’t have been that word. Not today. Take a deep breath, keep driving, eyes on the road. Maybe it was just my imagination. I am tired after all.
The next day, I look straight ahead, trying to keep my eyes from wandering to the cars parked alongside the road. But I can’t help it, I’m almost down the hill when I peek to the right. And it’s there, clear as day: DEADBOY. In bold capital letters on somebody’s license plate. Who would do that? Don’t they know they live right by a hospital? Don’t they know somebody’s one-year-old son has a mysterious cancer, a tumor that’s grown to the size of a small watermelon, a medal-winning butternut squash bursting out of his kidney?? Don’t they know that?
I don’t mention it to anyone. Not to my husband, not to my mother. Not as I pour my heart out on my month-old cancer blog, describing each moment of fear and confusion and relief, each setback followed by small victory followed by setback. I don’t hold much back. I share it all. But I never mention the license plate, I never ever say that word aloud.
And so it takes on enormous power, it grows in my mind to something of a talisman, an omen of how the day is going to turn out . . . or how this whole journey – and the rest of our lives – is going to turn out. If it’s there, my heart beats a little faster and I drive a little quicker so I can relieve my husband and get my boy back in my arms. If it’s not there, I breathe a little deeper, my shoulders relax and I panic less when I can’t find a spot in the damn parking garage.
What else am I to use as my guidepost? What else do I have to believe in? Certainly not God, since I’m not about to start believing now, just because I have a kid with cancer. No matter how badly I may want someone or something to pray to, hypocrisy is worse in my book. Hypocrisy is always worse. My lack of belief is a belief system too, after all.
And I don’t have chemo to believe in, not anymore. That magical poison we placed so much faith in that failed us so thoroughly. I mean, whose tumors grow . . . with chemo? That’s not how it’s supposed to work. Chemo shrinks tumors, god dammit, how can his body not know that? So there goes my steadfast belief in science and medicine, shaken to the core. And doctors . . .well, I believe in our doctors but everyone makes mistakes. They’re only human, I’m wise enough and pragmatic enough to see that. They have lives and personal dramas and professional dilemmas to consume them.
So what do I have left to believe in? A license plate, apparently. I quietly place my faith in that damn license plate.
And for eight weeks, I am haunted and taunted by that single word. From the day we learn of the inexplicable and shocking growth of his tumor until the massive eight-hour surgery that removes his destroyed right kidney through the miserable recovery period when he’s forbidden to consume anything by mouth – no food, no water, no breastmilk — for ten days. From the long wait for pathology results until the next CT scan reveals growing tumors on the left side as well until the next surgery, quickly aborted because an infection is growing inside his surgical site. Through the surprisingly relaxing week-long stay during which he is pumped full of IV antibiotics trying to clear up his MRSA (isn’t that what I just read about in the paper? Doesn’t that kill people?) and his c-diff (it would be another year before I’d read about that one in the paper which, yes, also kills people) and into the next eight-hour long surgery where they remove four smaller tumors and forty percent of his left kidney. And then through the torturously long days and nights in the PICU as he recovers, a sweet one-year-old boy with tubes in his nose, hands, feet, chest, with an eight-inch scar across his belly, with so few answers as to why, how, what next. Through all of that, I am haunted and taunted by a single word boldly displayed on someone’s license plate. A word I can not bring myself to repeat, that my rational mind insists is just a word, some sick joke on some sick person’s part, nothing to do with me and my child.
But my non-rational mind thinks otherwise. And when you spend your nights standing up holding your baby in your arms, your non-rational mind tends to hold sway. It’s so in my face, so very blatant, mocking my fear. If it said something more benign or vague like WATCH OUT or BAD LUCK, I still might feel a tinge of worry. If it said DEAD GIRL or DEAD MAN, I still might have looked twice and shaken my head and thought about it later as I tried to sleep against the green glow of the IV pole. But no, this is not vague or benign. This is serious. As clear as day, it says the one thing I can not bear, the single outcome I refuse to accept.
And then, incredibly (some would say miraculously) everything calms down. We spend more nights at home in our own beds than we do at the hospital. Austin crawls and plays and laughs and even grows. And by the end of October, a mere three months after the storm that is pediatric cancer blew into our lives, he has another CT scan. And it reveals . . . nothing. No tumors, no growths, no visible signs of cancer. Nothing suspicious or scary or deadly inside the small body of my beloved boy.
We continue to drive down that hill for months to come, once or twice a week for chemo or bloodwork or scans. My eyes are still open, still darting back and forth between the road ahead of me and the cars parked alongside it. I’m always ready, on edge, but I’m afraid to see it, so I don’t look carefully. I’m not actually searching. So a few weeks pass before I really notice that it’s gone, before it sinks in. Could it be? Suddenly I’m emboldened, slowing down, scanning driveways, really searching. And it’s not there. It’s gone.
It takes another six months before I mention it to anyone. And when I do, I mention it big. I describe it on my blog to the hundreds of people who’ve been biting their nails and crossing their fingers and crying and praying and cheering for Austin since this story began. And then I wait. One day, then two, thinking for sure someone else will step forward and say they saw it too. Maybe my mom, who walked down that hill almost every day we were in the hospital to take a shift so I could go for a run, shower at home, see my other boy and remind him that he was still loved. Surely she must have seen it but been understandably reluctant to bring it up. Surely someone must have seen it.
But no one has. It never caught anyone else’s eye. And now I have something new to worry about (great, just what I need): Am I crazy? Was I actually losing my mind? Could I have been that stressed, that exhausted, that my imagination invented it, made it up out of the clear blue sky? I’ve always been an extremely rational person, a normal person with a normal mind that functions in normal and predictable ways. I don’t make things up, child with cancer or not. I don’t hallucinate, for crying out loud.
And then, less than a week later, my friend’s mother posts a comment. She and her husband saw the car. They were driving on the freeway in a snowstorm, creeping along at well below the speed limit, on the opposite side of the city from where they live, when they pulled up behind it. It was real.
Ah, phew, well thank god for that. It exists and I’m not crazy. But relief passes into anger. Who would do that? Why would they choose that word? And then the pieces of the puzzle start falling into place. Another friend tells me there was a punk rock band in the 70s named The Deadboys who originated in, you guessed it, Cleveland. Of course.
If only I’d told someone sooner, if I had showed up at the hospital after the very first sighting and said, “Oh my god, guys, you will not believe what I just saw.” It would have diffused all the power. It would have made it just another silly thing to have to bear, a minor distraction. But, who knows, I probably walked into some medical chaos, a new storm swirling, and didn’t have a chance to tell my story. And then one day passed and then another and its importance grew, fed by silence and fear, way out of proportion to what it really was. A vanity plate. Some old rocker pining for the past, wanting to relive his glory days. Come on.
So I did what any typical twenty-first century girl would do and got back online for another search. I had already, months prior, typed “Deadboy” (singular) coupled with “Ohio license plate” into my search engine. You know what I got? An article about how the Columbus Police Department was trying to find the identity of the dead boy using the license plate number of the submerged car in which he was found at the bottom of some river. Armed with new knowledge (Deadboys plural), new answers appeared. Yes, a 70s era punk band who found their fame in Cleveland before heading off to New York. This went out for a page or two of Google-generated responses, old albums on eBay and concert reviews from the Agora, and then, something interesting, something new: One of the band members was struck by a car while walking in Paris in the 80s. And killed. Hence the singular dead boy. Well, now. That changes things.
This was not some aging rocker trying to recapture his youth. And it was not some cruel sociopath who got his jollys torturing the mothers of sick children. This was a tribute to a fallen friend. Sad, yes, but also positive in a strange way, done out of love, I suppose.
I look for it still, we’re not done at that hospital yet even though years have passed. It’s never returned. I have never seen it again.
But it was there. In my very worst days, in my most terrifying moments, that word was there, reaching out through the fog, taunting me from the side of the road right when I thought my child might die.
And then he got better.
And it was gone.
So, I couldn’t wait to show you the pictures (and know I’ll have so many more by next week) that I figured I’d post these before we left.
Here is the treehouse, after a mere two days of work (one — today! — that involved hail):
It’s more of a house built on a platform than an actual treehouse, but either way, it’s very cool. It’s designed to look like the house from Up and will be tilted slightly as if it’s taking off. The Amish guys were joking today that they’d get fired from most jobs for building a crooked house!
Turns out there might be some volunteer opportunities, like painting and other finishing touches, available to friends. If you’re interested (and you certainly should feel NO pressure, but some of you have asked and offered), you can contact our wish coordinator Virginia at firstname.lastname@example.org.
And now . . . to sleep and then . . . to pack (oops, haven’t started that yet!) and then . . . to Maine.
Well, the work has begun. And my, what a lot of work it is!
We woke up yesterday morning to an army of Amish carpenters in the backyard, laying the foundation for Austin’s treehouse. I mean, his tree-village. It is enormous. I can’t quite picture how it’s going to end up but I can definitely tell that it is going to be very very large.
The boys are thrilled, of course, and eager for it to be finished. Looks to me like it should take weeks and weeks but the men said they’d be done in another four days. Which works out perfectly because we leave for Maine tomorrow (yay, finally!) until Tuesday evening, so there will be quite a sight awaiting us upon our return.
I spoke with the workers yesterday and introduced them to Austin, who smiled shyly from my arms but refused to speak or make eye contact. They asked about his story and after giving them a brief version, one man said to another, “That sounds just like your son.” Turns out one of the carpenters has a son who was diagnosed with neuroblastoma in his kidney when he was nine months old. He said for the first day or two (which happened to be Christmas Eve and Christmas), the doctors thought he had Wilms. He lost one kidney and had a full year of chemotherapy and is now a healthy and normal third grader.
One of the three brothers from the contractor company also had leukemia as a teenager and his family was sent to Disney World as a gift from Make-A-Wish. So you see how this all comes full circle. I can’t wait for the day, well into the future, when Austin or Braedan make a wish come true for some sick child and get to tell the story of their own dream treehouse and all the magical childhood memories they made in it.
Pictures to follow, I promise . . . when we return!