HuCART Boost Day 4: a whole lot of nothing

I always have big intentions to come to Philly and in all my “spare time” do so much blogging/writing that I finally feel caught up. But as it would turn out, I will never feel caught up. I could write every day for the rest of forever and still feel like there is more to tell, which I guess is the design of this calling.

But the reality is that each time I find myself in Philly, I find my ability to put any words on paper almost non-existent. The well hath run dry. I mean, surely not really, but there is a certain amount of detangling oneself form reality required to re-tell what is happening and I find that when I am here swimming in the waters, I can’t much step out to report on the storm.

I can’t see the forrest for the trees.

So, anyway, I’m here to offer some sort of update the likes of which I have debated just not doing every day since my last post. I am waiting for something more definitive to happen, and more clear path to reveal itself so that my update can make sense.

Waiting for something to reveal itself so that this can all make sense.

Anyway, what is there to tell you all before any of this makes one drop of sense? Beaudin’s got his T-cells on Monday. Per the usual, the process was uneventful and aside from the handful of extra hospital team members no different than any other clinic visit. Hundreds of thousands of dollars of science pushed in to his line like saline.

He did smell particularly of canned creamed corn the day of and following. It’s the preservative from the cells detoxing through his body. It’s terrible. Both in concept and the actual scent.

On Wednesday, Day +2, Beau casually mentioned to me around bedtime that he had a killer headache. When I asked him how long he’d had it, he said, “All day yesterday and all day today…” Good to know kid, good.to.know. Thankfully by morning it had resolved and has been coming and going, mildly, since.

At clinic yesterday all of Beaudin’s inflammation markers, used to consider cell-expansion, were normal. C-reactive protien, ferritin, and absolute lymphocyte counts, all in the normal ranges. This was a bit of a let down. We’d like to see those numbers elevated, meaning the t-cells are expanding and taking up space, doing the work we came here for them to do. I am not sure how these numbers play together since he already has some t-cells in his body from the previous infusion. Also since it’s only Day +3, those numbers could rise over the weekend. Or they could not.

It’s hard to remain hopeful. I find my mind wandering to the conversations we will have to have if this infusion is not successful. The fork in the road: continue with a ‘wait and watch’ approach and pray the cancer has been eradicated and he is healed, or continue on with treatments that include some combination of cranial radiation, bone marrow transplant, or two more years of chemotherapy in case the cancer is in fact there, and just dormant.

Everything in me wants to spill out the details of what those two paths would look like, and detail the torment of standing at the fork of that decision. But I am not going to. It’s just too much. We will get there eventually and I am sure I’ll have plenty of words for it then. But we aren’t there right now. Right now, we are on Day +4 and I am writing a blog post and Beau is sleeping and in a couple minutes I may make breakfast. That is all I know.

Our schedule here has been very funky. The weather is quite inhospitable and I am coming to find that despite living in Colorado, I am a softie to winter. Or perhaps I am just a softie to wind. It is always windy here, read: always!, and most often humid, cold, and cloudy. The Colorado sunshine has spoiled me. With this weather it is hard to convince either myself or Beaudin to go outside. Couple that with the COVID case positivity rate in the city being >30% and we aren’t super keen to be spending time in any public indoor spaces. A couple times I have thought of getting us up and moving to the Franklin Institute or Redding Terminal, just for something, anything, to do, but I can’t seem to justify the risk. It’s boring in the apartment, but it seems better to be bored than risk throwing COVID into this mess. Anyway, all that to say, we hang out at our apartment and Beau cubes, constantly, watches tv mostly, and sometimes play board games, and less often complete puzzles. It’s quite boring, no matter how you slice it.

Somehow we got on a whack a doo sleep schedule and without any activities during the day I am having a hard time justifying why to turn things around. As such, we go to sleep sometime in the 1o’clock hour and wake around 11am. It is so not who I am at home, that I am kind of just leaning in to what a different life it is. I’ll be back to my 6am, early bird, in no time.

Despite doing a whole lot of nothing during the day, I can usually go to sleep just fine. Although the past couple nights I have found myself really working to not spiraling out in “what-if’s”.

All we have is today. And today we are well.

All we have is today. And today we are well.

All we have is today. And today we are well.

We don’t have another clinic visit until Tuesday, so between now and then we will just continue doing the same old same. I will post an update if anything exciting comes to pass like Beaudin waking up before 12noon, or me stepping outside into the direct sunlight.