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. 

The Bell’s Toll

 

Two years ago the other day, August 17, Phin and Aspen rang the Bell. The Bell is traditionally rang to mark the end of treatment, end of cancer, the beginning of a new life as a survivor, the end of one phase of treatment and the start of the next...etc. But the Bell is controversial, too. Some patients never ring the Bell; others ring it again and again. To date, Phin has rung the cancer Bell twice: once on August 17, 2022, when we hoped his battle with cancer had been won; the second time on June 28, 2024, when he was discharged from the Children's Hospital of Atlanta with his new bone marrow engrafted and getting to work.

This image is a conglomeration of posts from August 17, 2022 and August 17, 2023: images of Phin ringing the Bell, of us celebrating his one-year anniversary of ringing that Bell, and of Phin on a field trip with me one year after ringing that Bell where we wandered downtown on a field trip with other first graders who knew nothing of Phin's battle, who knew nothing of his cancer. We were blissful, enjoying his cancer-free life of normalcy where the biggest things we had to worry about on a daily basis were whether he'd mastered his addition facts or knew all his sight words. 

I'd be lying if I said I didn't worry that day two years ago, when Phin and Aspen rang the Bell. In the furthest most reaches of my mind, I dreaded that Bell, how it felt like a temptress of Fates to be ringing it, and walking out those doors. As if Cancer stood like a vapor in the background of those cheering faces and celebratory scraps of fluttering confetti, watching us depart from the Pediatric Specialty Unit where Phin and Aspen had spent most of that year, lurking vengefully by as the doors closed behind us, watching our silhouettes grow smaller in the distance, thinking, "They'll be back."

Cancer doesn't care.

People often say that Cancer is the worst club to join with the best people. This is true. No one will ever understand Childhood Cancer, especially, like those who have walked or are walking through that trauma themselves. We've known people who came before us and people who have come after; people who have fought for months and those who have fought for years. We've heard the cries of infants who couldn't yet walk, screams of toddlers and children; angry protests of teenagers from behind closed hospital doors. We've met desperate parents in communal kitchens where we shared a tissue, bad coffee, and our fears. We've attended Bell-ringings and memorials; we've cried at both.

Today we cry for Leo. 

Eleven-years old, oldest of three siblings, neighbor to Phin on the BMT unit; ALL warrior, and so much more. When Leo moved into the room beside us, his mother and I had hoped one day the boys might play together: Roblox or Minecraft, walk a few laps around the unit, meet up "on the other side" at the Ronald McDonald House but, despite our fervent prayers, these plans will not come to fruition. Leo had fully engrafted. His transplant had worked but cancer treatment is harsh. Chemotherapy, radiation--they wreak havoc on little bodies, overwork and weaken major organs, leave our children fragile and vulnerable. We followed Leo's journey, just a few paces behind Phin, on Instagram, occasionally running into his parents in the hospital kitchen or the Ronald McDonald House, offering each other encouragement as we did. We prayed for Leo every day--every. single. day--right alongside our Phin. Fervently, desperately, just as we do for Phin.

When your child has cancer and you meet another child battling cancer, they become a symbol of hope, a symbol of possibilities; they become another source of empowerment and motivation; they inspire us to draw on reserves we didn’t know we had. When people talk about the strength cancer parents exhibit, it comes from these families, our warrior children who inspire us to forge ahead, these small people who bravely, boldly lead the way forward into that great, terrifying unknown while we trail anxiously behind. Nothing is in our control. Despite the weight of devastation you bear like the heaviest of rocks as you stagger up the hill you would willingly climb forever if it meant not having to lose your child, you offer to shoulder their weight, too, as much as you can, as much as they'll let you, and gladly. You think: we are in this together; we will climb up together; we are not alone. You can't stop yourself from loving them. All of them. Even when you think you have more than enough already, can't hold onto or spare another ounce of love, you love them anyway. 

And you mourn them in equal amounts, with a grief you've never known before and one you never want to know again. A grief that springs up like a well from your soul, burns hot like poison seething from your eyes, unstoppable and devastating in the pickup line as the dismissal bell rings and you await your own smiling 10-year-old daughter bouncing toward you after school. You think: he was 11.

Cancer doesn't care who rings the Bell or doesn't.

As a lifelong rule-follower, a person who thrives on lists and organization and schedules and plans and honoring guidelines to perfection, it's hard for me to accept that Cancer does none of those things, cares nothing of plans or how true to the letter we live our lives. Each day, we give Phin the medicines, encourage him to eat, try to keep his body limber and active in preparation for when he can enjoy his freedom again. Each week, his transplant doctor tells us what a thing of beauty it is when parents do "all the right things"; each week, I think "but Cancer doesn't care." And I worry.

The weight of cancer is heavy. Almost unbearably so. It's so burdensome our girls cannot whisper its name, perk up only when their brother is mentioned to excitedly ask if he's "coming home soon". They do not talk to their friends and confidantes about their brother's battle or their fears. They can barely admit them to themselves. But Phin throws it around like that same reckless abandon of the confetti that rained down on he and Aspen at their Bell-ringing. So much of what he says begins with "When I'm done with cancer."

"When I'm done with cancer, I'll visit all the animal hotels", places you can watch animals roam by your hotel balcony as you lie in bed at night. 

"When I am done with cancer, I will visit Santa Claus at the North Pole, see his reindeer, meet his elves."

"When I am done with cancer, I will get a small black dog like Sundae, only smaller. I will name her Shadow." 

"One day, when I am done with cancer..."

As these days creep quietly forward and the number of days post transplant increases, the heft of concern does not have an inverse reaction for me. It remains, vigilant, as if to say: you won't catch me unprepared this time.

Medical Updates

In just under three weeks, Phin will, hopefully, be coming home. This will mark his 100th day post-bone marrow transplant. No one has actually mentioned or talked about this milestone, but little changes abound. His medical team is trying to wean him off his NG tube. While Phin doesn't get feeds from it any longer, it has become the Charon that ferries his liquid medicines into his belly so he doesn't have to take syringe after syringe of poison-tasting medicines by mouth. They have weaned him off of other medications that were no longer essential. 

A week and a half ago, he spent 15 hours grand total over the course of two separate visits in the ER at CHOA. The first time, we checked for blood clots in his chest since he complained of minor chest pain. While there, he downed three bags of chips and a bottle of sweet tea. He had approximately four tests conducted on him. Three days later, he was back with pain and swelling in his knee, more tests, more chips, more sweet tea. None yielded clear reasons for his discomfort and follow-up appointments cleared him of any further need for follow-up. The highlight for us was no indication of cancer, potentially just mild infections. 

This week, he followed-up with the CHOA Pediatric Dentistry doctor to determine the state of his teeth post-operation last month and to check that any other concerns are stable. They are discussing the removal of 2-3 more baby teeth, though no plans have been made as of yet.

On the home front, Phin's oldest sister Av tested positive for Covid on Friday--the traditional day for Dustin and I to swap each week. For the last month, we have divided our time between Savannah and Atlanta--one parent per grouping of child or children. Our goal has been consistency for all of them. The positive Covid test rendered it impossible for us to swap. I have been quarantining in Savannah for for the last five days. Our Covid patient seems to have turned a corner as of this writing, but cannot return to school until tomorrow--five days after her positive test. Meanwhile, Obelia had Covid symptoms, then lost them, but never tested positive despite five negative Covid tests. Both girls were quarantined to their rooms where, like prisoners, they received their meals and drinks; they each have a designated bathroom. Cancer has taught us how to play it safe. Five Covid tests might seem excessive, but the clock for me to return to Atlanta and swap out with Dustin begins all over again as soon as she tests positive. The sooner she tests positive (if she's going to), the better. 

Days in Atlanta are long. 

But as of this writing, Phin has about twenty of them left.

What happens then? How do we keep Phin safe among the viruses and sicknesses that run rampant in the fall and winter months? With two sisters in-person at school? When can he get vaccines again since the ones he had as a baby are now void with his new bone marrow? When can he safely be in crowds? Will there be another Bell?

Those and many other questions are ones we hope to learn the answers to in the next twenty days.

Please offer prayers and warmth for Leo's family. Even the greatest blanket of love cannot comfort the coldness of grief they are cloaked in.

"Each man's death diminishes me,

For I am involved in mankind.

Therefore, send not to know

For whom the bell tolls.

It tolls for thee."

-John Donne