Phin, Pheeding, and Philosophical Reconsideration

The Ronald McDonald House where Phin has spent the past two months rests on the edge of Lullwater Preserve, a wood so old, quiet, and deep that it is easy to forget its proximity to the roaring heart of Atlanta. The conversations of owls in the darkened distance and the rustle of the wind twirling the fringe of the forest through its fingers are the sole sounds that punctuate the silence. An occasional orange leaf drops the hundred or so feet from the towering treetops into the glade behind the Ronald McDonald House. Every morning, a few more leaves have gathered there. 

Autumn is close now. Phin’s sisters have been back in school for almost a month. Phin attends the same school, so he has now been absent for that long. He’s met his classmates over Zoom, though, where he patiently answered their initial questions like “Why are you bald?” and “What’s that thing in your nose?”, as well as the more important questions that came later, like “Do you have a dog?” and “What kind of Lego Star Wars do you have?” Each day, he works through the assignments his teacher emails him and does his best to keep up, although another season will pass before he’s cleared to rejoin his class in-person, if all goes well. Neesha and I are also preparing our fall quarter courses, which will begin in a couple of weeks. Gradually, we have already begun bringing things home from Atlanta. 

Still, each step we take toward leaving feels cautious, tentative, like crossing a frozen pond. That is how a lot of it has felt from the start–like the ice could split underfoot at any moment–but the feeling is worse now, and it never goes away, maybe because even though we’ve made it this far, we know better than to trust this ice. We’ve seen what it can do.

Medical Updates

For the first time since May, Phin isn’t scheduled to be in a hospital for a whole week. No clinic visit. No scans. No procedures. Nothing. He gets (fingers crossed) a week off. The oncologist described Phin’s counts as “stone cold normal” at his clinic visit last week, which was Day 80 (post BMT). If all goes well, Phin’s next big day at the hospital will be just before Day 100, when they’ll do another bone marrow aspiration, remove his CVL, and (hopefully) discharge him back to Savannah, where he’ll resume regular clinic visits again and make the trek back to Atlanta for check-ups with the BMT team only once or twice a month. Hopefully. 

His team did give him some homework, however. He needs to gain weight. That means eating more food. Otherwise, they’ll have to hook him back up to the pump that pushes nutrition through his NG tube overnight, and since they’re preparing to wean him off treatment-related things, feeding him through a tube every night is kind of the opposite of what they want to happen.

But the problem is complicated. Phin has never been a particularly good eater even in the best of times, and it’s gotten worse since chemo scrambled his sense of taste (again) and rendered many of his former favorite foods unpalatable to him. The NG tube, which runs up his nose and down his throat, also causes him to avoid foods that have certain textures. Still, there’s probably nothing that limits the food that goes into Phin more than the restrictions of the BMT diet. 

Since bone marrow transplant patients are extremely immunocompromised, they are vulnerable to all kinds of pathogens, and if you’re bacteria, virus, protozoa, or fungi trying to get into the human body, the mouth is a massive door. The BMT diet is a set of precautions presented in an attempt to protect patients recovering from bone marrow transplants from food-borne pathogens until their immune systems recover enough to defend against them. 

So when we feed Phin, we follow CHOA’s recommendations regarding food safety for BMT patients. It’s a lot. It can also be tough because getting food down Phin’s gullet often means finding a way to quickly produce whatever item he requests before his craving vanishes, except that now, with the BMT dietary restrictions in place, even if the food Phin wants actually exists and can be obtained, it might not be allowed under the BMT diet’s rubric.  

Or it may come from a restaurant that isn’t great, or one that maybe just didn’t have its act together on the day the health inspector stopped by. At his current stage in treatment, Phin can have food from restaurants if whatever it is meets all the BMT diet criteria, and if it’s made fresh, and if we don’t dine in, and also if it’s from a restaurant with a 90% or above from the Georgia Department of Public Health. Turns out, not every restaurant is pulling an A.

Here’s an example. Before Neesha swapped me out, I thought about grabbing us lunch from a place with a sign that read “Killer Burgers.” I popped the name in the GDPH search field and hit submit. The results returned instantly–an 89% health inspection score. One point shy of “safe” for Phin. Thus, Killer Burgers was denied an opportunity to live up to its name. 

So every restaurant where we order food for Phin first has to get background checked using the GDPH searchable inspections page. The process is arduous, but very enlightening. Next time you find yourself at an impasse with someone over where to eat, start popping the names of restaurants into your state’s department of public health search page. 

You might decide it would be a better idea to just go with whatever’s in the fridge.   

Phin On the Daily

Before Neesha tagged me out to return to Savannah last week, we had an interesting configuration of teams going on, with Phin, Neesha’s father, and me in Atlanta, and the girls, my mom, and Neesha in Savannah. Scripted narratives often do things like that, shuffling the established characters into different groupings and scattering them all over the map. It makes for good storytelling. The Savannah gang dealt with a COVID subplot, while the boys and I knocked out another ER visit and a couple more doctor appointments in Atlanta, and along the way everybody learned to overcome their differences, trust each other, and believe in themselves. Or at least that’s how it’ll go in the movie version. Hopefully, the production team will cut a lot of the stuff where Phin mainlines videos of YouTube bros playing Minecraft, not that it diminishes his main character energy or anything. 

Actually, there’s been an unexpected twist on that. About a month ago, Phin’s favorite Minecraft-playing YouTube bro announced that he had cancer. 

My thoughts on the phenomenon of these YouTube gamers and their popularity, influence, and wealth are far too numerous to discuss here. I suspect, ultimately, that my opinions on them are part of an ancient cycle in which old people tend to think the things kids like are dumb. But for months, as he’s binged these channels, I have listened. This is what I have heard:

“Bro!”
“Bro!”
“Bro! Where are you?”
“Bro! I'm over here! Let’s go!”

Endlessly. 

Maybe the problem exists in me. Perhaps, instead of looking at these Youtube gamer bros and lamenting my son’s glorification of their absolutely staggering mediocrity, I should instead cast my gaze inward. Could the annoyance I feel simply be the lameness in me acknowledging the lameness in them? How long has the universe whispered, “Bro! Where are you?” to me?

Perhaps it merely awaits my reply: “Bro! I'm over here! Let’s go!” 

Anyway, this YouTube gamer getting cancer–of the tongue, no less–hit Phin hard. This is a little kid who knows a lot about people getting cancer. Both his grandmothers are cancer survivors. His grandfather is fighting cancer right now. Many of his closest friends either have cancer or have beaten it. He’s played with kids who have been killed by cancer. He knows that cancer may kill him. But in Phin’s world, this Youtuber is the first celebrity* who’s gotten cancer. The announcement he posted rattled us both. Phin went on a kind of cancer update vigil because he admires this person, despite my constant grumbling reminders that this shrieking man-child is contributing nothing of value to society and in fact is probably making it even worse. 

And I, on the other hand, had to reverse my stance. Previously, having been subjected to this individual and his brother and friend yelling at each other while playing video games for multiple hours a day for months like a man trapped in an apartment with three roommates who are all slightly different cloned versions of the same dumbass, I had wished wholeheartedly to never–never–have to hear his bro-y voice again. 

But now my son saw in this person’s misfortune a reflection of his own, which opened up, unexpectedly, a new reason to hope, and an opportunity to empathize. So where before I had wanted this gamer bro to disappear from our lives forever, I now found myself publicly rooting for him. 

And he beat it. 

A few days ago, the gamer bro posted a video of himself triumphantly celebrating his victory over cancer and thanking his fans for their outpouring of support. Phin called me so we could watch it together. He played the YouTube video for me. Then he played it again. And again. And then it occurred to me that instead of Minecraft, Phin was watching him do a walkthrough of beating cancer and all the things you feel: kindness, relief, gratitude, joy.

The gamer bro was demonstrating what it looks like when you win.