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Not bad at all.

We just completed what was undoubtedly the best year of Austin’s life. The only year of his life, so far, without hospital stays (those few overnight hours in the ER in Junein the ER were nothing). The only year of his life, so far, without surgery. The only year of his life, so far, without any significant health problems: no diagnoses, no recurrences, no major medical drama.

And the first year of his life, so far, in which he was nothing but a normal little boy . . .

Just a regular kid …

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Dancing (I think that’s what they’re doing) …

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Riding…

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Shaving …

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Celebrating …

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Skiing …

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Rescuing …

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Snuggling …

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Hunting …

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Learning …

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Snoozing …

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Fielding …

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Beaming …

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Hiking …

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Avoiding …

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Crashing …

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Big wheeling …

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Hot tubbing …

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Boating …

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Monkeying …

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Field tripping …

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Blasting off …

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Dressing up

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Living it up …

To many, many more ….

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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?

First of all, sorry about that crazy formatting in the last post.  Because I imported the speech from elsewhere from the Interweb, I have no ability to change it.  Oh well, I’m glad so many of you enjoyed it anyway.

Second of all, another month has gone by and tomorrow Austin has yet another ultrasound. He’ll get to go to school in the morning and then we’ll head straight down for labs and tests to check on the liver and, of course, our organ of choice — the kidney. I’m assuming things will be fine but I have always assumed things will be fine, even when they turn out anything but. So we’re ready, I guess, as ready as we can be, aware that our gloriously normal lives could change on a dime.

Whoosh — back and forth, from the land of the healthy and the living to the land of the deadly and the dying. It could happen on any day in any moment. When you’re deep in the dark netherworld of cancer, you can’t imagine ever finding your way out, ever emerging from that dank, futureless place as a whole person. And then when you’re out of it, you can’t imagine ever being thrust back in there; you’re just a regular person doing regular person things, with regular person worries and, cancer — real, deadly, third time around cancer — is just not on your calendar.

No room for that.  Nope, not this time.

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.

Today was Austin’s last day of school, an end to his first year of preschool that feels light years away from its beginning. I am so proud of him and he is so proud of himself, convinced that today’s ice cream party proves he has accomplished something great. And he has: he continued going, with impressive consistency, even when he’d already had radiation early the same morning or had just finished chemo the day before. He went on field trips when his low hemoglobin made him cold and stayed for Lunch Bunch when there was nothing good for me to pack him, except bland, low-sodium, low-phosphorous  sandwiches and a Tums floating around in his lunch box.

But he did it. He made friends and he made art projects, he had movement class and he had library, he proudly guided us around the building to find his paintings for the annual evening Art Walk. He belonged to something, was a welcome and valued member of that class even when he was absent for weeks on end. Nobody ever forgot him when he was gone, thanks to the daily “We wish Austin well” chant led by his teachers. And when he returned, his little classmates treated him with kindness and also, thankfully, with complete normalcy. They never tiptoed around him, afraid of what he could or couldn’t do. To them, he was just another kid, without hair and with a sock covering up the tube on his arm, but just a kid nonetheless.

So he did it. One year down, nineteen to go.

Oh, and his chest CT was clear and there were no noted changes from his last ultrasound so all’s good.  Bring on summer.

Sorry to leave you all hanging on such a bad post back there. These past few days have certainly been a series of ups and downs. We are home, released first thing on Thursday morning. Austin’s spunky self has re-emerged, he’s jumping on the mini-trampoline and playing rocket blasters with his brother (with whom he is miraculously getting along — maybe absence makes the heart grow fonder?). He’s been completely happy and seems mostly normal, despite the fact that he isn’t eating much.

We’ve gotten the hang of the PICC line, especially now that it’s covered with the “tube” part of one of Mark’s athletic socks (an “arm bra”). Yesterday we went to the clinic for labs and a dressing change which was a fairly miserable experience because the tape they’d used in surgery was much stickier than the regular one and took ten minutes to slowly and painfully peal away from his already sore arm. Then, late last night, I went to flush the line and couldn’t do it. It was stuck, nothing going through, total resistance. You’re not supposed to push too hard when this happens in case there’s a clot that you don’t want to push further into the blood stream. It was the middle of the night at this point and I figured there was nothing to do until morning, but I tossed and turned for hours convinced this PICC line wasn’t working either. Imagining my Saturday in the ER, with twelve different doctors trying to figure out what to do with this kid who clearly needs a central line and clearly rejects every one of them.

I tried to flush it this morning, again to no avail. Called the attending oncologist, who didn’t sound too alarmed and told me to call our Home Care nurse. Well, I’d spoken to this woman yesterday when she called to schedule a weekly visit to change his dressing. I told her we’d be in the clinic each week and they could do it there, so after making sure I felt comfortable with the flushes she said, “So, it sounds like you don’t need me?” “No, I guess not,” I answered, never guessing I’d need her less than twenty-four hours later. When I called her today, she listened to our predicament, and then apologized for having canceled us as her patients! Oh great. She said she could reinstate us on Monday and wished me luck (thanks a lot).

So there I was, mentally preparing for an ER visit (not exactly the place you want to bring an immuno-compromised child) when I decided to call our old nurse practitioner, a long time friend and my go-to for advice. She calmed me down, urging me to avoid the ER at all costs, and walked me through some options, one of which worked beautifully . . . and the line flushed! All was suddenly well and every minute of this almost-awful day now feels like a gift.

And the shots — oh, this kid is a trooper. On Thursday night, he screamed and cried so hard that I cried, just furious that, on top of everything else he has to go through and everything else we have to go through, now we have to add this twice daily bit of pain and suffering. But by Friday morning, he barely let out a peep. And the three shots he’s had since then have been a piece of cake. He climbs into my lap, making sure Braedan is nearby with a distracting toy, and Mark pops that needle in his skinny little leg and it’s over. “One and done,” is Daddy’s motto.

I’m totally wowed by him, by his ability to just adapt and take it and make it all okay. By his truly incredible resilience and his endless supply of strength. By the smile and the laugh and the jump that inevitably come after the shot and the prick and the poke. He keeps going and that lets us keep going. He guides us through this with a three-year old’s sense of possibility and hope and joy.

How lucky are we?

July 2018
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July 2018
M T W T F S S
« Nov    
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23242526272829
3031  
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