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Those life moments, the ones you remember in great detail for all their spectacular-ness, like my fifteen minutes in the Blue Grotto, are not always the ones you’d expect. For me, at least, it was not my wedding day, which was incredibly special and incredibly spectacular, but it wasn’t one moment. And it was definitely not the birth of my children, which gave me the most spectacular gifts in my life, but were moments filled almost exclusively with fear and confusion (stories for another day … or maybe not!).

The few moments that stand out for me are random, like when my friend Jenny and I convinced the security guards at the Los Angeles Coliseum to let us down from our lousy seats high in the stadium to the front row for U2’s Zooropa concert. Jenny’s midriff baring top and supreme hotness had a lot to do with it (I think I was wearing a midriff baring top too, actually — it’s a good thing I don’t have digital copies of those photos!). Not a life-altering moment or anything, but being able to reach my arm out and practically touch Bono was pretty cool.

Scoring the tie-breaking goal against our arch-rival Shaker in a sectional field hockey game my junior year of high school is definitely up there in my top moments. I wasn’t a goal-scorer and in fact was playing sweep (as defensive a position as you can get short of being the goalie) when I was switched up to left wing in double overtime. My goal wasn’t even any good; not some act of superior athleticism, but a deflection off my stick that happened to land in the net. But it meant everything to me and my team and was a moment I will never forget.

Finishing the Chicago Marathon, my third of four, in under four hours ranks up there too. I had always wanted to run a sub-four and, throughout that race, I was continuously updating my mental calculations. Realizing I was on track to do it and then realizing I could be under 3:55 and then realizing I’d be under 3:50 and finally crossing the finish line at 3:46 was super super cool.

None of the cancer moments are in my top list. Even when we received the best possibly news, better than anything we had known to hope for, there was always something else. Our joy was tempered by whatever lay ahead of us, but the next big procedure, the unanswered question, the knowledge that no good news was ever quite enough. Instead of a joyous jumping up-and-down celebration, we would fall backward on the hospital bed and say, “Thank god,” an exhale of relief.

Maybe our big moment still lies ahead.

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.

Another thing to check off the list, another accomplishment made, another fear overcome.

Austin had his last radiation treatment today and, just like that, one big thing’s done. Radiation had seemed so scary to me; I’d imagined his skin burning or, at the very least, itching in the spot where it was zapped. This is a kid who gets red and patchy from bathing too long, after all. But no, he had no side effects, nothing at all. Aside from those two Mondays of throwing up, it was as if all they did to him each morning was sedate him and then wheel him through the maze of hallways and elevators from the fourth floor to the basement and back again. Certainly nothing as scary as radiation could have happened to this child who has been running happy circles around me all day.

We did have a long day at the hospital (in between — and mostly before — that happy circle running). He needed another nuclear scan which, rest assured, involves nothing nuclear. It’s just a dye that’s injected into his blood stream that is then filtered through the kidney, offering a good assessment of kidney function by drawing blood on a set schedule over five hours.  We did this test again so soon to determine whether his recent chemo and radiation have had any immediate effects on the kidney and also whether we need to adjust the dose of the next chemo, which includes a new drug (also dialyzed by the kidney, of course — couldn’t some of these things be filtered through the darn liver already?).

But he was a champ and when Mark came home and asked Austin what he’d done all day, he cocked his head to the side and said, “Oh, jumping. Just jumping,” which was a pretty accurate account.

The other thing he did, however, was start to lose his hair. When I woke him early this morning (for the last time!), you could see it was thinner right at the spot where he’d been lying on the pillow. Then, as we arrived in sedation and I pulled off his Spiderman hat, it was obvious — this boy’s hair was falling out. I could run my fingers through it and pull out handfuls at a time. All day, it was all over both of us, covering our clothes, getting stuck in our mouths, everywhere.  I commented to my mom this afternoon that I wish he’d let us buzz it short and she said, “Oh no, but won’t that make you sad?”

Well, yeah, of course it’ll make me sad, but it’s going to happen. This child will be bald, whether we like it or not.  Better we trim it now than spend the next five days with hair falling in his eyes and getting stuck on his snotty nose. So tonight, Mark took my wild-haired boy up for a bath and brought down another bald child. Almost bald at least, with lots of random patches because he wouldn’t sit still (shocking). Looks sort of funny now, but it’ll even out soon enough.

That smile hasn’t gone anywhere though.

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February 2020
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