Phin Phights On

“Leukemia” to me seems more like a place than a disease. I think it has something to do with the suffix -ia. 

In English, this suffix is applied to conditions that affect the mind and body (leukemia, insomnia, thanatophobia). It is appended to the root words of subjects to suggest things of or relating to them (academia, philosophia, marginalia). It is used to denote groups of animals and plants (dinosauria, mammalia, obelia). And it is used to describe regions and territories (Umbria, Georgia, suburbia). 

We are exploring Leukemia with Phin. We have barely crossed the threshold. As far as the eye can see Leukemia stretches out before us like some miserable new continent. For all intents and purposes, that is what it is. A geologist traveling through the landscape of our past month could easily point out the subduction zone where the crust of our previous lives folds beneath the annihilating edge of the Leukemian plate. 

A biologist, on the other hand, would surely note the presence of our abandoned cocoons–telltale signs that the land of Leukemia has new inhabitants, since people don’t last long in Leukemia in their original bodies. Kafka’s tale follows a man who awakens one morning as a cockroach, but when one suddenly finds oneself in Leukemia, the metamorphosis resembles that of a moth. The word "leukemia" rings in one’s ears and then the world disappears. Dangling somewhere deep inside a dark cocoon that is in fact a husk of one's former body, one melts entirely into goo, from nose to toes, every particle, except for the one that trembles and the one that shrieks.

Eventually from this ragged shell a new thing emerges, untwists its pathetic limbs, dries its slimy wings, and flits feebly away into the sharp Leukemian wind. In every way is this creature moth-like: impossibly fragile, vulnerable to being crushed or swallowed or blown to pieces at any moment, but for this particular moment, capable of filling the niche ascribed for it in its doleful habitat. It flaps its papery wings and up it goes, fading silently away into a terrible sky full of so many perils and so many other little moths. 

But more on Leukemia’s fauna, flora, climate, and geography in a later post. 

Medical Updates 

I get the overwhelming sense that Phin’s physicians find him to be exceedingly boring lately, which is the best possible report I can give. 

They file into his room each morning to talk about his chart, and a minute and a half later, out they go. Low-but-not-lower-than-expected white blood cell counts. Predictable platelet levels. No fevers.

Boring. Boring. Boring. 

There was one exciting episode since my last entry that I will never forget, one of horror. I will not render this scene in too much detail here (for your sake, and for mine), but it happened when Phin had a reaction during an infusion of platelets. By chance, I caught the beginning of it on video. It started as Phin was receiving his weekly visit from Bailey the comfort dog.

Platelet reactions are not uncommon, I’m told. The horror of the moment was the result of the whole surpassing the sum of its parts. Something about the combination of the incessant machine beeps and bloops and the notes of sudden gravity in the nurses’ voices, the eruption of mountain ranges of hives all over Phin’s body and his screams that he couldn’t swallow, and the way he clawed at the hives on his scalp while tufts of his hair swirled like bits of a blown dandelion…. 

As I type this, it all seems kind of minor. Phin has been in far greater danger in the past four weeks, and his nurses even reminded me at the time this was all happening that his screaming meant that his airway wasn’t closing.

Still, I was shaken. Phin had a reaction, but I had an overreaction.

Anyway, within an hour, Phin was back to whatever counts as normal up in here, and he’s been boring AF to his doctors ever since.

I even made a joke about it to one of them. It wasn’t a good joke, but it still makes me really happy because it suggests something of my pre-my-kid-has-leukemia sense of humor is still in there.

The doctor said, “Looks a lot better now that the hives went away.” 

And I said, “Right? You guys got him looking like Dr. Jekyll again…instead of Mr. Hives.” 

Then the doctor was like, “Oh, I see. You made a play on words there, didn't you.” 

And I smiled and put two thumbs up. I’m not sure why. I guess for myself?

And that’s when the doctor left the room.

Phin On the Daily

If you live in a place that has lots of pine trees, you know that while the ground looks like it’s covered only in grass, closer inspection often reveals that it’s thinly blanketed by pine needles. 

That’s like the horizontal surfaces in Phin’s room, except instead of pine needles it's his hair. 

The sheets were the tipoff. Phin gets new sheets put on his bed every night, and every morning we discover the evidence of the efficacy of Phin’s chemotherapy drugs, which were designed to attack rapidly dividing cells like the ones found in cancer and, unfortunately, in hair follicles. 

If his hair was falling out prior to four days ago, we didn’t notice. But we do now. It’s like the tail of a comet as Phin zooms around the galaxy of his hospital floor. Perhaps little bugs living in the floor tiles make wishes on them as these shooting stars drift down into their worlds.  

When this is over, Phin, we're going to
have a conversation about that thumb.

Though he is noticing his hair loss, he doesn’t seem very upset about it (yet). In fact, nothing really gets Phin down lately. Now that this first round of chemo has concluded and he’s rested for a few days, Phin’s moods and energy levels are through the ceiling. To paint from Phin’s animal-themed palette, he has become a cheetah: He is capable of short bursts of incredible speed and intensity, but he has to rest between sprints. When he’s in sprint mode, he careens around the pediatric specialties unit on his bike, pummels his inflatable punching bag with impressively long combinations of strikes that all demonstrate truly poor technique, and plays pranks on his nurses with a rubber snake. When he’s in rest mode, he draws pictures, plays with toys and puzzles, looks at books, watches cartoons, and snoozes. 

In closing, I'll add that he had a really good Easter. He hunted eggs and got a surprise visit from his family, whom, with the exception of Neesha and me, he hadn't seen in almost a month.