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It was a good thing we squeezed in those two normal days, sandwiched as they were between much longer hospital visits. Yesterday, he had clinic after radiation, which isn’t bad except that there is so much waiting involved. Waiting for lab work to return, waiting for doctors to be paged, waiting for decisions to be made. It’s just tedious, especially with a three-year old to drag around, feed and entertain. And then today he needed a blood transfusion so this turned into another seven hour day (too bad I don’t get paid for this!). It’s sad when every department I leave, people call out, “Bye, see you Monday!”

But Austin is the constant trooper, managing to find fun wherever he goes.  He’s been a little less energetic (which, in Austin, goes virtually unnoticed) and hasn’t had quite the same appetite as usual, but is still feeling generally fine. His blood counts have dropped significantly since Monday so no more school for a while, but right now he’s sledding with Daddy and Braedan, so who cares about blood counts?

We’ve made it through the first week of Nuepogen shots but I haven’t gotten any better at it. I am extremely slow going in, as I’ve always been on myself (much to the horror and disbelief of those watching me). So when I say we’ve made it through the first week, that’s only because he’s been sedated!  A few of you who are nurses have offered to come over and give him his shots and I will shamelessly take you up on those very kind offers. Better he fear you than me. Plus I trust you’ll be a little quicker at it. He needs one tomorrow and Sunday, around 9 am (which I’m sure we can tweak by a little if necessary).  Let me know if you’re interested — first come first serve!

He had his mediport de-accessed this afternoon before we left. I’m not sure if that’s the right word to describe it but they pulled the needle out so all that’s left is the button safely tucked under his skin. And seeing how happy this made him almost made all those access pokes worth it. He jumped up and down as he announced to Mark, “They taked my dangly thing out! Look, look, no dangly thing!” and then proceeded to roll around on the floor to show how free he was.

That’s my boy.

We’ve had two very regular, average, normal days in a row. Radiation has gone smoothly (audible sigh) and Austin has even put in two appearances at school. Yesterday, he was all excited about it at the hospital, naming his classmates for the curious doctor and eagerly guessing what they’d do for an art project. Then, true to form, about two blocks from school, he suddenly decided he didn’t want to go. But I put my cancer-mother fears aside and treated this like the almost normal day that it was: I brought him into his room, held him in my lap while they finished the story already in progress, and left shortly thereafter. I did linger in the hallway for a few extra minutes, chatting with the other teachers, trying to get over my own anxiety about leaving him there without me. But I peeked in the window and he was busily working on a puzzle, so off I went to my pilates class.

Today was even better, “more smiles” reported by his teacher. Two days in a row at school, missing only the first half hour due to radiation. Not many kids have that as their tardy excuse! He put on his new snowpants all by himself, climbed the mounds of white stuff to play on the playground, went to Movement class and the library, ate his snack and played with Play-Doh. Just like any other kid. Just like any other day.

Things have been so normal, in fact, that he refused to take a nap, even when I offered to lie down with him (these early mornings on top of his not-so-great nights are killing me). So normal that, after I slaved away all yesterday afternoon making soup from my new cancer-fighting cookbook, both boys ended up eating leftover spaghetti while Mark and I loaded up on powerful antioxidants.

So normal that this afternoon when they asked for the thousandth time if we could go sledding, I came up with my thousandth excuse; really convincing ones like that I hadn’t started dinner yet or needed to go through the pile of mail putting down roots on the dining room table. As the (so normal) whining reached a feverish pitch, I stopped saying no long enough to wonder what sort of memories I’d want them to have of their mother. Should they look back years from now and remember a woman who always managed to organize the mail? (Not likely, trust me.) Who did nothing but feed them, clothe them and drive them to the hospital?

So we bundled up, Braedan out the door in record speed (funny, he’s not nearly that fast in the morning before school . . .), Austin resembling a Michelin man in all his layers of gear. I dragged them in a sled over to the park, which conveniently closes at “Dusk.” Thus ensued a conversation about what “dusk” means, which I initially described as “sunset” until I realized how hard it is to pinpoint when the sun sets if the sun hasn’t come out all day (or week). We settled on that moment when the sky turned from light gray to dark gray and headed home. But before that, both boys and their mom zipped down the hill, squealing as the snow sprayed up into our faces, fear and accomplishment blending into one. It was a quite a rush: sledding on a hill all our own, tears streaming down our cheeks from both the cold wind and the spreading laughter. This is the mom they should have memories of; this is the childhood they deserve.

So normal.

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February 2020
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