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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.

That can’t be a bad job, huh?

Don’t fly away


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.

Even a fire pole

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.

Fox 8 sent a cameraman and I am extremely pleased with the piece they aired on the news last night. Here’s a link to the video and here’s the less exciting news blurb on their website.

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.

Just a quick update — If you’re local, tune into Fox 8 news tonight at 6 and again at 10 to see Austin’s treehouse.

 

Braedan brought home his school pictures yesterday: images of a widely grinning boy, standing happily amidst friends and peers who adore and admire him.  He has been doing fantastically. I think his struggles in August and September may have just been about adjusting to the start of school, due in part to the strong loyalty he felt for his kindergarten teacher. I now realize he simply wasn’t ready to transfer his allegiance from one teacher to another (not to mention not being ready to end summer and get back into the swing of early mornings and daily homework!).

But things have really settled down and he seems much much happier. He’s still seeing the psychologist at UH every other week and she also thinks he’s doing fine. He’s gotten into “projects” lately — building jumps for his remote control cars out of bricks and planks of wood or cutting paper into strips and weaving together a “rug” for Mark’s birthday present because we don’t have one in our room. And reading! Wow, is he reading. He’s finally jumped that hurdle to the point of fluidity and can get fully immersed in a book without the hesitation required to sound out each individual syllable. The other night I walked into the room where Mark and Austin were snoring on the bed and Breadan was sitting up next to them thoroughly engrossed in a book, whispers of words escaping his constantly moving lips. So I brought my current favorite in with me and plopped down in the rocking chair to read alongside him; the first time we’ve actually read independently side by side . . . but not the last.

So, again, I feel mighty lucky. Two boys who are mostly happy, surprisingly healthy, remarkably normal. What more could I ask for?

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.

Aw shucks, thanks everyone.  It was a pretty incredible story, especially the fact that I first wrote about that license plate on the CarePage a full five months after the last time I’d seen it and then it was spotted again by friends within one week.  (Make sure you read the comment from Linda Yonkers on the last post.) And then it hasn’t been seen since! That was remarkable.

You know, I tend to be a very reality-based person, without much faith in, well, faith. But there have been strange — some would say mystical — happenings since all this began. The entire license plate fiasco was, without question, the most powerful of those. But there was also that moment, at least two years ago now, when I was sitting in the rocker nursing Austin and thinking about a title for my not-yet-written book. I’d been mulling the “Whoosh” idea, after the many CarePage messages sent by my friend’s mom, embodying our wishes being sent off into the universe. It also seemed to capture the idea that we had so quickly and completely gone from a happy, healthy, normal life to one anything but, and then, whoosh, back again. And as I was sitting and rocking and pondering all this, I glanced down at my boy who had fallen asleep in my arms and there, emblazoned across the chest of his pajamas, was a tiny airplane and the word, Whoosh.

Those faded pale blue pajamas are one of the few pieces of clothing I haven’t passed on to the sons of my friends, but have instead kept in a careful pile of “things to save forever.”

Oh, there were more, some tiny. Like when I once incorrectly referenced e.e. cummings in a CarePage entry that should have said Robert Frost, and the very next day as I was listening to NPR, a reporter was introduced as “Bob Frost.” And I first thought, “That’s weird. Someone really named their kid Bob Frost?” and then I suddenly gasped and hurried online to correct my non-English major gaffe.

Some were just creepy coincidences, like a few days after we learned of that new (but actually old) tumor in his left abdominal cavity, the “almost relapse” of March-April 2009, and one night Austin woke up crying in his bed. I walked into his room and he was writhing about, eyes still shut, and he mumbled, “Cut the piece out!” He’d been playing with scissors that evening, cutting paper into tiny pieces (one of his favorite activities to this day) so I’m sure it was that but still, I nearly died to hear him say those words. We hadn’t told the kids anything yet at that point. I hurried back to our room and shook Mark awake and said, “Do you think he knows? Do you think he can feel it inside of him?”

So, I guess I can just say that the world is full of mystery. And I’m okay with not having all the answers.

On another note, I do plan on writing more. I haven’t done anything to my manuscript since last summer, not like “this past” summer but last last summer. And even that was just some quick revisions in an attempt to add in the “almost relapse” weeks. So now I need to sit down with it and figure out how to include another six months of intense treatment without writing a 600-page book. Hard enough to convince agents and editors to take on the oh-so-uplifting topic of childhood cancer without making it a tome.

My mom and I have signed up to go to a big writing conference in New York City in the end of January, so I have three months to really pull this together. My mom, you may remember, has been working on a  young adult/middle grades novel for more than a decade and she just finished it last week. It’s about a girl who is diagnosed with diabetes, based, of course, on me , complete with a Jenny character and a Sarah/Dallas/Keila composite character and the requisite “Zach,” better known to anyone who attended Roxboro in the mid-eighties as Josh.  (Check out this old post to see what those days were like.) My mother had to assure me fifty times over that it wasn’t actually me and my life and my conflicts that she was writing about and when I read the first few chapters, I was finally convinced of that. The framework of my family and social (and medical) life is certainly recognizable but it is definitely fiction. I’m eager to read the rest though and to share it with those of you who were along for the ride.

Anyway, I know you logged on to see those darn treehouse pictures but I’ve been waiting and hoping for them to finish before I “reveal” it. Doesn’t look likely before Friday so I promise (really!) that I’ll post some tomorrow.

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:

DEADBOY.

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.

Aaaaahhhhh, now that was nice.

All in all, the trip was wonderful. Good slow family time, lots of hours spent playing Monopoly (Braedan’s new favorite) and doing puzzles (my obsession). The house was classic rustic Maine, with spectacular views of the water:

Our first full day started out dreary and overcast so we visited the nearby transportation museum and then had lunch in Rockland.  A quick walk around town and the harbor and then we were back home for football watching (Mark), a good hilly run (me) and model car building (boys).

Sunday was gorgeous, sunny and in the high 50s, a perfect leaf-peeping Maine day. We drove to the Camden Hills for a hike, one hour and fifteen minutes up Mt. Megunticook, with Braedan in the lead and Austin on Mark’s shoulders (well, partway at least).

Water break

We made it!

Love this shot

With the whole world in front of them

Almost done

The following day we dragged the boys all the way back to Freeport for some outlet shopping. They didn’t mind a bit because the minivan had a DVD player — a definite trip highlight — plus we had burgers at Johnny Rockets which they loved.

No time for views, just movies

Two thumbs up, baby!

Another kid favorite was the trapdoor in the back bedroom complete with a ladder down. This was the only way they went up to the second floor the entire trip:

On our last day, we visited the Marshall Point Lighthouse, located just three miles from our house and famous for being in the final scene of Forrest Gump, as he runs across the country.

Run, Forrest, run!

Searching for seashells

As we were driving back to Portland yesterday, I dared to say that everything had gone remarkably smoothly for the entire trip.  Of course we then arrived at the airport to find our flight to Newark was so delayed that we’d miss our connecting flight so they instead routed us through Charlotte, NC (not quite along the direct path from Maine to Cleveland). That flight then sat on the runway for an hour and we arrived in Charlotte a mere ten minutes before our second flight took off. Luckily we were only one gate away and made it just in the nick of time. The kids were troopers, having eaten nothing for dinner but NutriGrain bars, and we arrived in Cleveland safe and sound by about 8pm.

Twenty-five minutes later, we pulled into our driveway and all started squealing and screaming, “Oh my god!” when we saw . . . well, I’ve gotta save something for tomorrow.

 

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 gina2491@aol.com.

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!

Like I said, we’ve got no time for cancer.  Everything went well yesterday. The ultrasound showed no changes to his kidney or liver. Sigh of relief for that.

We are almost six months out from the end of treatment, if you can believe it. One quarter of the way there. There — that magic date of April 2012, when we can actually use sacred words like “cured” and “survivor,” words we’ve never before allowed ourselves to utter.

His lab results came back great too.  I’d been expecting his hemoglobin to drop since it’s been at least six weeks since his last blood transfusion. Well, it has dropped but only slightly and, at this rate, he won’t require another transfusion until November or December. Not only is it nice not to have to dedicate an entire day to that tediously long procedure, but it means that his kidney is producing more red blood cells, or at least losing them less quickly.  All in all, it’s very good news.

His kidney numbers all look good too, with his creatinine even lower than before.  Seems like every month now, we hit a new low (which is really a new high!). We’ve become increasingly lenient with his diet lately and I’d been worried that his phosphorous might levels might have crept upwards. But no, they’re still in the normal range, which means, of course, that his kidney is processing out all that extra phosphorous (cheese, cheese and more cheese) on its own.

Ah, the little kidney that could. And could and could and could.

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