Well, we are still doing this thing. Kicking pigs and such. I swear the whole history of the Universe could have occurred between May 3 and today. May 3 was so long ago there were cro-magnon families in our neighborhood back then. But we are still doing this thing.
Payson is three treatments through his five total treatments during Interim Maintenance. He’s 59 days into his treatment. Things have gone pretty much according to plan.
For this phase of treatment, he gets blood taken and tested the day before his actual treatments, to make sure his body can tolerate what they are gonna shoot him up with. Home health. Home is where the health is. Home health is not just for your grandma anymore. And for some reason, when I hear “home health” I think of tasty white breads.
But anyway, last week his labs from the home health visit were low. When I say low, I mean his immune system was suppressed. He was “neutropenic,” which is Greek for “super duper Hawtt but unable to fight off even the mildest of infections without outlandishly expensive hospital stays.” So they delayed his treatment two days. He went in Friday, and his numbers were back up, he was “unneutropenic,” which is Greek for “word I just made up,” so he got the full chemo special – vincristine and methotrexate out the wazoo. Or in the wazoo. Whatever. Took it like a champ, as always.
Next treatment is on August 7th. It’s a lumbar puncture (back poke) day, so they’ll put him under and treat his spinal fluid with medicine again. This will be the eigtth time he will be put all the way under in the last 60 days. They keep treating and testing his spinal fluid because Leukemia sometimes shows up there and the medicine he takes orally or gets through his Iron Man port doesn’t reach there. So they keep putting him under. Like masters of the Vulcan neck pinch.
He’s still taking all of this like a total rock star, maybe even like Meatloaf or something. But, full disclosure, he’s learning that it’s not fun. This weighs on him more than I realize. He’s tough and resilient and amazing, but we are starting to see it wear on him. He woke up sad on treatment day. He understands what’s coming at appointments and there’s parts he dreads. If he told us more of what he thinks, I’m guessing he’d be wondering why so much of this, why for so long, especially when he feels pretty good.
So, it’s the Dog Days right now. The treatments aren’t bad. He’s not tired. He’s a pretty normal seven year old. Sure, he’s weak, and he’s slow, and he walks funny. He hasn’t spent a single night away from home, other than in the hospital, all summer long. He’s not a glowing specimen or childhood vigor, but he’s doing ok. And every day is another day done, another step forward.
This all reminds me of the old Sunday School lesson about forgiveness, where you hold something not heavy out in front of you with one hand, and for a while you don’t even feel it. And then it starts to get uncomfortable. And after a few minutes you break into a sweat and your whole body hurts and it’s excruciatingly and you start to wonder why the hell you go to Sunday School anyway. I think it’s a little like that. Very few overwhelmingly hard days. Like, cancer itself bites the big one, this whole thing sucks, but individual days, individual treatments, individual challenges, even the super sticky stuff they have to put on his skin, nothing is too hard.
But it’s all so freaking hard.
Thing is, there’s not a damn thing you can do about it. Like, once Payson was diagnosed, this was the road. This is it. You want a healthy kid again? Here’s the road. Walk it.
But thinking in reverse and living in envy of other people and other kids and other summers is totally stupid. Like the philosopher Jerry Sloan said, “You can’t play the game backwards.” I’m sure when he said it there were at least two offensive punctuations included, but you get the drift.
This is one of my favorite quotes, by Richard L Evans:
Life moves in one direction only – and each day we are faced with an actual set of circumstances, not with what might have been, not with what we might have done, but with what is, and with where we are now- and from this point we must proceed; not from where we were, not from where we wish we were – but from where we are.
So, you walk the road. It’s heavy, it feels eternal, and there’s absolutely no end in sight. Just keep going, even though it’s heavy, because what else can you do? And you add to that weight an increased sensitivity to the people around you who are struggling, and an authentic empathy that’s earned only through real adversity, and a fear of new words like neutropenia and old words like fever, and you end up with the longest summer in the history of humans. Such lessons, so terribly unwanted but so appreciated.
So anyway, here’s Payson when Mac wanted to lick whipped cream off his head:
And here he is partying on Pioneer Day at Snowbird, enjoying the Alpine Slide and the Bungee Trampoline just like our Mormon pioneer ancestors:
And here he is ripping down the bowling alley slip ‘n slide:
And chilling with besties:
And schlepping shave ice to vulnerable neighbors who don’t understand how healthy he is:
And schmoozing Bella on her birthday:
And with that, my training is complete. I’ve now officially become a Mormon Mommy Blogger. A bunch of pictures with a on sentence description. It’s over. Put a fork in me. I can already feel your attention waning like when you try to read a novel by Charles Dickens. I’m sorry. I’ll do better.
It’s the Dog Days.