On an average summer day, free from the confines of school, Phin will put on the wrong clothes for the season, often backwards, and run up and down our street (barefoot if we don't catch him before he's out the door) recruiting friends to play with...soccer, t-ball, gaga ball. He will stand in the space between the kitchen and living room while everyone is quietly focused doing work in both of those rooms and bounce a ball again...and again...and again. At night, he gathers them all--the soccer balls, gaga balls, volleyball--together and tucks them into a corner for bed so they will be well-rested for the day ahead when he will run them up and down the street again, bouncing, kicking, and hitting endlessly. He likes the idea of being famous but doesn't want the recognition or expectation that comes with fame.
He is so excited about the World Cup he assigned himself reports on the countries of all his favorite players — Mbappe, Neymar, Lamine Yamal, Messi and Ronaldo — interspersing them with encyclopedic knowledge about their flags, languages, demonyms, quizzing me in the car.
He is somewhat stubborn and can be sensitive.
He picks fights with his sisters and delights in teasing.
He will interrogate you with endless mathematical questions ("how many minutes are in twenty-four hours...?") then repeat the answer as a question ("one-thousand-four-hundred-and...what?") maybe three times in a row.
He will sit at the table for hours drawing all of the characters from Poppy Playtime to give as gifts to his sister, throw himself on the floor with the dog and roll around while hugging her madly.
Phin will ask his mom (me) not to play videogames with him because he cannot bear the thought of her dying, even in the game. He will exempt her from "last one there is a rotten egg" because he cannot allow her to be a rotten egg.
This is the life I imagined for Phin, for his sisters, when we started having children 15 years ago--the kind of life where our biggest concerns and their biggest challenges would be whether they struggled academically or had trouble making friends, whether they were kind or knew how to stand up to bullies or defend themselves when bullies came for them. I took for granted those struggles when we had them--before cancer--worrying over them as they slept soundly in their beds at night, praying over them while standing in their doorframes.
Cancer is not a gift; it's a hell I fear arriving back in full force every day, but there is giftedness in the appreciation we have for waking up in a house together under one roof where every child is healthy, no one is fighting for their life, and the air is easier to breathe because of it. Two years out from Phin's transplant means we are safer, but far from safe. There's mourning in this gratitude...mourning for the trauma-free childhood we'd worked so hard to create for our children, the carefully constructed parenting and choices made for them; the organized systems and schedules and carefully selected activities and schools, mourning for the people they don't get to be because cancer stole things from them and left them with trauma people don't know how to approach: the lack of comments on their essays about Phin, the adults in their lives who gave no grace when they visibly struggled.
After Phin's first bout with cancer, because of this lingering fear that it would return if we put our guard down, some part of me never fully returned to the world. It maintained vigilance instead. Every day past 18 months in remission is terrain we've never tread before — we are in it now, and we are proceeding as if this gets to be our life forever, because to proceed any other way would be a misery of its own kind.
It has been two years since Phin's new marrow took over, began churning out these glorious cells that give us this life we celebrate every day. Two full years of Phin complaining about schoolwork like his sisters do, running to me when I walk through the door so he can throw his arms around me in the tightest of embraces saying "I want to hug Mama all day." This summer, he's making up for the two summers he wasn't allowed to swim and last weekend at our neighborhood pool, we stumbled upon a 50th birthday party. As per usual, our neighbors embraced us into their celebration, invited the kids to their food and the adults to their drinks. Phin leapt right into the pool, began splashing and playing with friends. I stood on the deck, idly watching when a neighbor I rarely see appeared beside me.
"I love watching him, too," he said. I smiled, a little embarrassed to be caught in my reverie of delight over something as simple as a child swimming in a pool.
"It never gets old," I admitted.
"He looks amazing. Every time I see him zipping through the neighborhood, I get teary." He paused, swiped his fingers beneath his sunglasses. "I'm sorry. I'm crying now, too."
I put my arm around him, "It has that effect on me, too."
He has two children close to Phin's age, slightly older, and when Phin went into remission at four-years-old, he celebrated from the solitude of his own home several blocks away. His whole family did, he told me. The whole neighborhood celebrated triumphantly. They watched from their yards and porches when Phin came home that summer, biking past them or running barefoot, his laughter echoing wildly through their grassy lawns. For 18 whole months, their hearts leapt at that healthy boy whipping through our neighborhood. And when winter 2024 brought relapse with it, they retreated to the solitude of their homes, their altars, the darkness of an empty room and wept.
"I understand," I said. "He's not just ours anymore. He hasn't been just ours for years."
He nodded in agreement: "He's all of ours now."
We stood together, watching Phin splash and squeal like an ordinary kid living an ordinary life with the whole careful, watchful world--divine providence--covering him in gratitude and love.
Hi Phin phans! Dustin here with a quick update on Phin for April. Here we go!
Medical Updates Just to recap, Phin's coming up on the second anniversary of his bone marrow transplant. That means for the past twenty-three months or so, the bone marrow donation he received has remained inside him, replenishing itself, churning out red blood cells and white blood cells and platelets, hopefully destroying any remnant of his original leukemia-producing bone marrow, and generally managing the hematopoietic factory of his circulatory system exactly how his oncologists had hoped.
(An absolute miracle of science, when you think about it.)
There's a period of observation (clinic checkups) that accompanies any medical treatment like the one Phin received. The schedule starts with visits really frequently and then gradually spaces them out if things look good. Phin is on bi-monthly clinic visits now. Patients who are two years post-BMT normally only have to go in for clinic checkups once every six months--or once per year--but last summer Phin developed graft-vs.-host disease (GVHD) in his joints and began taking medication to try to arrest the condition from advancing.
His doctors are now confident that this medication and Phin's own strength and flexibility training (taekwondo, soccer) have not only stopped the disease from getting worse, but have completely erased its effects and restored Phin's normal range of motion. It's really good news.
The gist: They're stopping the meds and they want him to keep coming to clinic every couple of months through the summer to see if the GVHD stays gone with the meds discontinued. After that, they want to talk about spacing out his checkups to once or twice per year.
Everything else looks great, they said.
Phin On the Daily
Phin's clinic visit was accompanied by a stay in the Atlanta Ronald McDonald House, which is so new and so vast that even on his second visit he still hasn't fully explored all of its play areas. We briefly caught up with several of our friends on staff (as well as one of the brightest students I ever taught, whom we were surprised to meet with her son during our previous visit in February. She told me she has been there with him ever since we saw her the last time, all those weeks ago). Each time we stay at this place, we are reminded of how helpful it has been to our family, how it (and its previous location) were our home away from home the entire time Phin required treatment at this distant hospital, and how many families with children who need medical care depend on the shelter and comfort it provides.
We also go to check out Zoo Atlanta after Phin's appointments. The sloths were nowhere to be found, sadly, but the giraffes were hungry and the splash pad was open, so it was still a win.
The neighborhood swimming pool opened for the season while we were out of town, but we hit it up the very next day. Phin returned to the water as if he'd never left it. He's excited for summer to begin so that he can swim every single day.
The biggest milestone, though, was Phin's first communion, which he celebrated last weekend. It was a big day! His family gathered at the church to watch him do the sacrament with his other communicants, then he rushed off to play a soccer match (his team is so small that they forfeit if anyone is missing), and then back home he went to celebrate with his family and friends.
Every celebration feels extra-special now. The last time we had one of these first communions in our immediate family, Phin was inpatient recovering from chemo, and he had to make due with sitting in his hospital room looking at the photos of his sister all dressed up in the church, and of course he missed her party. But this time, everyone was together.
There is really nothing quite like having everyone together.
For the past four years, Neesha and I have tried to tell Phin's story here. We’ve drawn on our own writing interests and backgrounds, sprinkling in medical updates and day-to-day tidbits on Phin's progress in an attempt to portray this individual, our son, in a way that seemed accurate and true, knowing that many readers had never met him (and, in some of the darkest moments, it seemed, might never meet him) in real life.
Occasionally, we've brought in other voices, too--quotes from his sisters, nurses, doctors, friends--and the result, we think, is a fairly functional trail of breadcrumbs through the twisting and often terrifying terrain of pediatric acute myeloid leukemia treatment, recovery, relapse, bone marrow transplant, recovery, and ongoing outpatient care. We intend to keep dropping breadcrumbs, too.
Through all of this, however, the one voice that's been conspicuously missing is the most important voice of all.
Phin's voice.
So with his permission, we are sharing this assignment he completed, which came home in his school folder today: Phin's life story, in his own words.
"This path," my social worker friend told me, "leads to madness."
It was sometime in the spring of 2024, in the children's hospital in Savannah. Phin was inpatient doing chemo. We were praying he would go into remission again and waiting to hear if someone in the worldwide bone marrow database matched his particular type. It was a dark, uncertain time.
My friend had only popped in to visit. She wasn't assigned to our case, but she made it a point to stop by each day and check on us. Her kid had already beaten cancer when Phin was first diagnosed. Her family and ours had become friends and hung out at events in the pediatric cancer community before Phin had relapsed.
The "path" that "leads to madness" that she was referring to was the thing I was in the habit of doing a lot during that time, which was to spiral into searching for missed signs, hidden patterns, and unrecognized causes regarding my kid's cancer. It's a common thing for parents of sick children to do. She probably did it herself when her child was in treatment.
Because, I remember telling her, there had to be a reason this nightmare was happening again, just like there had to be a reason it had happened in the first place. Something hidden in plain sight. Something we missed. Some clue.
She shook her head.
Academically, I understood then--just as I do now--that this kind of thinking isn't healthy or productive. It does lead to madness. Even if it were possible to identify a cause, the effect would still be the same. Still, when faced with the cruelty of pediatric cancer, which shatters logic and understanding, the mind spins wildly, attempting to reassemble the shards of reality back into a coherent, recognizable shape. It tries to sift order from chaos.
Anyway, I've been thinking about what she told me a lot lately, even though things have been quiet, because there's always that whisper in my mind that asks if things have been maybe a little too quiet. Once that happens, it's only a matter of time before I work myself up over something like this:
Spring 2022: leukemia Spring 2023: remission Spring 2024: leukemia Spring 2025: remission Spring 2026: ...
It's still true. This path leads to madness.
Medical Updates At Phin's clinic checkup in February, his lead bone marrow transplant oncologist told us we wouldn't need to return to CHOA for more labs until April.
"There's no reason we'd need to see him sooner," the oncologist said, "and if everything looks good next time, we can talk about spacing his visits out even more."
Actually, at more than 600 days post-bone marrow transplant, Phin would already have been scheduled for more infrequent visits, had it not been for the graft-versus-host disease (GvHD) that appeared in his elbows and wrists, requiring him to take an immunosuppressant. At the February clinic, the doctor evaluated Phin's progress, concluded that his original flexibility and range of motion had been restored, and backed off the dosage of that drug.
Since then, in addition to being on high alert because we haven't seen what's happening in Phin's blood in a few weeks, we've been watching to see if he stiffens back up now that he's taking a lower dose of the medicine that restored his ability to bend his arms. So far, so good.
As for his blood, it's always a big question mark without the labs. We carefully track his appetite, his sleep, his levels of energy, his moods, his temperature. We look at the hue of his skin and how quickly his cuts and scrapes close and heal. We obsessively check him for bruises. All of this feels a bit ... folksy, like searching for a subterranean spring with an old-timey divining rod. In lieu of the scientific instruments that report with precision and reliability, we resort to cruder methods that require constant vigilance. Which is fine. We've got vigilance to spare, having already resigned ourselves to a lifetime of it. What's frustrating is that sometimes kids just aren't hungry, or they fall asleep in the car, or they're a little more sluggish than usual in the morning, or they come home from the school playground with a bruise. That stuff's all normal.
We try to treat normal stuff like what it is.
It's hard, though.
Phin On the Daily
This month Phin celebrated St. Patrick's Day with a trip to the Jacksonville zoo with his sisters. He loved the new manatee pavilion, and loved seeing all the animal exhibits he's become familiar with from his many visits there. Back home, he took green-iced St. Patrick's Day donuts to his nurses on the pediatric specialties unit and volunteered at P.A.C.K. during his spring break. He also got to meet a new friend from out of town, Andrew, and to show him around Oatland Island Wildlife Center. Phin promoted to the next belt rank in taekwondo, and he joined a new soccer class. He went to the beach with his classmates from school. He had a playdate at his friend's house. He hunted Easter eggs at the neighborhood Easter egg hunt.
Last year at the neighborhood Easter egg hunt, Phin did his best to keep up. He had just barely returned to school back then, and he didn't have the stamina to attend for full days yet. The year before that, he was home from the hospital for a few days, having just been given the strongest doses of chemotherapy medications he'd ever received. The Easter egg hunt organizers set up a special quarantine area for him to hunt eggs in alone.
This year, it would have been impossible to have known that any of that had ever happened. He was fully back in the hunt, just like he's back in the world.
It has been 21 months since Phin's Italian donor selflessly offered her healthy bone marrow up to replace his vulnerable marrow. For 21 months, I have started every day rising before the rest of our home in the early morning darkness, placing my hand on our sleeping boy, his small body rising and falling beneath it, whispering a silent simultaneous prayer of gratitude and continued safety into the still morning air for Phin, for his donor, for my girls. In addition to my prayers, she has become a part of my daydreams...imagining her walking through piazzas, past Il Duomo, stopping for a cioccolato cornetto and espresso on her walk to work, just as I did as a young student in Italy 25 years ago. I can hear her voice in the Italian music I stream for my classes as they write. I imagine her dark-haired, wide-eyed, and joyful around a table full of family, surrounded by love. I dream for her of a long, healthy life, fulfilling and free of trauma, where she knows she is loved far and wide, but gets to feel that same love every day. I pray she has love for the days that are dark, the days that are hard, the days when it all feels so heavy.
A few weeks ago, we learned that, contrary to what we'd initially believed--that two years following Phin's transplant, anonymity would be lifted if both parties (the donor and the donee) agreed--Italy is one of several countries who forbid the veil of anonymity to be lifted for the donor and the life they saved. We are forbidden to ever know this selfless human.
This news sat heavy for all of us. Dustin and I felt sorrow and disappointment. We'd been looking forward to welcoming her into our family. Av felt outraged. Obelia, too. Phin, in disbelief, said "You mean we won't get to meet her...EVER?" Av proclaimed defiantly, "Then we will write letters. She will know of us and the difference she has made."
Who knows, really, what her life is like? I only know I pray for her and think about her--a total stranger--every day. She occupies a very real place in my heart, in our family, her blood pumping through our son, fighting every illness or foreign cell it sees in ways his own could not. Every day past 18 months in remission is terrain we've never tread before and it's all because of her.
Medical Updates
If you've been following the Phinstagram, you may have seen that Phin is being weaned off from his GVHD medication. When he initially began taking them, his doctor answered most of my questions by telling me "we just don't really know; each kid's GVHD behaves differently; there's no roadmap or protocol because this drug was only recently approved for pediatric use...at best, he'll regain his mobility in his joints; at the least, we can hope it will stop the progression." It was hard to imagine an active little boy like Phin might be stunted in his ability to play all the sports he wanted to play because GVHD had stopped him from being able to bend his wrists fully, spread his arms flat, bend his ankles in a running motion. But because we didn't know, we accepted that these were the challenges we knew might come and we were prepared to accept them happily, even, in exchange for having our son. We put Phin in taekwondo as a form of physical therapy, diligently watched him take the medication twice a day (and a myriad of new ones that accompanied it to serve as extra protection against all types of possible infections) and hoped that the progression would pause. And within a few months, something miraculous happened: it did. It not only stopped, but began improving month-by-month. His doctor took photos, cautiously said he thought the medication was working, but remained tight-lipped about the possibility of weaning...until this month.
Exactly two years from the date of Phin's relapse in 2024, his doctor recommended we begin the weaning process.
We can be blind to progress when we are too close to it, but when I pulled these photos to make side-by-side images, to celebrate Phin's progress, the success was undeniable.
The pictures above on the left side of each pair are from almost a year ago when Phin was first diagnosed, the ones on the right are this month as we begin weaning from the medication that paused his GVHD. The top picture to the right shows Phin's inability to unfurl his hands, bend his wrists and do a true push up a year ago. I remember watching him struggle in taekwondo class that day, the other kids counting ahead while it pained him to manage even one. Of course, I teared up, thinking of his struggles, all he'd overcome and all that was still left to tackle--what we knew and what we didn't know that might be waiting somewhere ahead. The photo of him in the tie-dye shirt was last week. Now he's one of the first students to twenty--deliberate, painless.
Yesterday, I shared a "Phin Medicine Reset" video on restocking his weekly medications into a pill keeper.
Although he's weaned ever-so-slightly from the GVHD medication, the optics of that are really just removing one of two doses he takes a day. All the prophylactic (medication to build defenses against possible infections) medication is still in tact. Plus, we added some Zinc and a nutritional gummy supplement, both because of his poor eating habits. Before cancer, Phin was our best eater. If you asked his favorite food, he'd tell you "broccoli", avocados and tuna were close seconds. Since cancer, it can be a struggle to get him to eat consistently, with no clear obstruction: is it the taste? are you not hungry? does your stomach feel bad? do you think you're sick? The answer is always the same: a shrug as we try putting food after food in front of him until we find something he likes again. The Zinc is intended to help of its a tastebud issue; the supplement is to make up for the nutrients he's not getting due to the pickiness. On the topic of taste, his current favorite foods are mini ham and cheese sandwiches with mayo (I cut one sandwich into four pieces) and mini Chips Ahoy cookies.
In reality, he's taking at least 5 pills on the weekends and 4 throughout the week, twice a day. Every day. Often with steamed oatmilk and vanilla syrup, decaf coffee with caramel oatmilk creamer, or decaf blueberry tea with honey.
Phin also had the flu earlier this month. And he definitely got it from me. Have you ever had one of those moments where you can see something happening but it's just not within your human power to stop it? That's how the flu happened. A student of mine had been unwell. When she returned, she wore a mask and asked if she could speak to me on our break. I stood a solid four feet away in the hall as we spoke, but I had no mask to protect me when she stepped closer so as not to yell, then proceeded to cough right in my face, through her mask without covering her mouth. It was like I could feel the flu particles spraying like glitter in the air, and like glitter, I knew it was too late for me to wash it off. It would linger for weeks. Four days later, I had the flu. Phin and Obelia fell next.
But, Phin's pediatricians at Coastal Pediatrics are continuously outstanding. Despite testing negative for flu, they (with CHOA's blessing and encouragement and knowing I had flu and they had vaccinated him at his last appointment) prescribed him Tamiflu and the same day his fever popped is the last day we saw it.
Phin on the Daily
We are still holding our breath through this season of Spring, tightened chests and cautious steps, but Phin is plugging along, smashing boards at taekwondo, belting up every few months, working on his footwork for soccer, and working out daily. Yes, really. Phin likes doing a weight-lifting session with some dumbbells almost every night right before going to bed.
Academically, he's doing well. Something that still surprises me when I say it. For a child who's never had a full year of formal educational instruction, I honestly don't know how he's doing as well as he does. This is not to say that he's adapted to the consistency of school like most children do by second grade. In fact, most days he asks "Do I really have to go? I can do that stuff at home. It's just such a long day." He's not wrong. It is a long day, especially for a kid who's barely had any long days at school, but most kids seem to get it by now: we go to school all day to learn, and then we come home. Phin does not understand the why of this.
The new immune system his donor gifted him is strong. The fever he had with the flu is the only one we've seen so far this season (knock on wood). That's not to say he hasn't been sick. He's had colds, but his immune system fights each sickness well and Phin doesn't say that he feels bad. This is the tricky part. When our other children have been sick, they've told us: "I feel bad. My throat hurts. Can I stay home? Can you give me something for it?" Phin never learned this. The same year he started school was the year he was diagnosed with cancer. He didn't have time then to realize how long and boring a full day of school could be, to actually want to use sickness as an escape. But Phin knows what it's like to feel really bad so instead of saying this, he simply states: "I'm sick."
It's always true. I can hear congestion in his voice, see the redness above his lip where he rubs his runny nose, but sans fever or specific complaint, it's hard to know what's wrong, how sick he really might be, or where the infection might be located. "Does your throat hurt? Ears? Head? Belly?" He shrugs and just says: "I'm sick."
It's hard to know what to do in these moments: send him to school? He has no fever. Keep him home? He doesn't seem in distress or discomfort. This was our exchange the morning we sent him to school before the onset of the flu. Later that same day, when we went to pick him up because he'd spiked a 102.7 fever, we learned his teacher only discovered his fever because he went to her and said, "Mrs. C, can I take a nap?" This was the same in the hospital when he was beginning to come down with an infection. Had his temperature not been monitored regularly, his glossy eyes, sick breath, and sudden sleepiness were the only other clues we had, the only clues we still have. I sometimes think he only says "I'm sick" because he realizes it's relative; I think--and hope--I guess, compared to what he's been through, nothing will ever feel that bad again.
Not long after Phin rang the bell in August of 2022, we were contacted by the Make-a-Wish Foundation telling us Phin had been nominated for a wish and they wanted to have a discovery meeting, if we were interested. At the time, it felt precarious to be planning something outside of the very near future--clinic visits, an upcoming return to church, then school, maybe a playdate when his immune system had recovered from what we believed would be his final round of chemotherapy. The prospect of planning anything more than a few weeks out felt like we were daring fate and left us uneasy and worried. On the other hand, how could we deny this little boy a wish after all he'd been through?
Between Covid and cancer, Phin had spent more time avoiding people in his five years of life than interacting with them. His experiences outside of our home were limited, his exposure to potential wish possibilities even less. All he'd wished for in the months he'd spent confined to the corridors of the Pediatric Specialty Unit were days outside, time with his family, playing with friends, riding his bike, kicking a ball around the soccer field, energy, his dog. What could this little boy wish for that hadn't already come true?
They invited us all to come to the meeting so all five of us went down the street to our local Starbucks, sat around the largest table they had, and answered a series of questions for the kind volunteer who met us there to discover what Phin's greatest wish might be. And then, he built up the courage to say it:
"I want to be a zookeeper at Animal Kingdom."
Could there be a more perfect wish for our animal-loving boy? The volunteer said she'd never heard of anyone asking for this wish, but he deserved it and if it was possible, they'd make it happen. He left that meeting beaming, cautiously hopeful but before the real planning could commence, Phin relapsed and his wish was put on "Pause".
If you've spent much time in a hospital with someone you love and the future feels very uncertain, you are well-acquainted with the barrage of regrets that come cascading in: "I should have said 'yes' more", "I should've been more patient," "I never should've made a big deal about grades or studying or lost shoes, or discarded toys all over the living room floor," "I should've set aside my work more", "we should have traveled", "we should have pushed to have his wish come true sooner." The regrets are nearly as loud as the "What-ifs" that echo through a dark hospital room at night, beeping in time with the monitors and IV machine pumping toxins or nutrition through the witching hours until dawn. The regrets and the what-ifs tangle into an anguish of guilt, the foundation of so many waking moments, the parent of a newfound well of endless patience. All the while you pray: "God, please don't let it be too late."
More than three years after Phin began his battle with cancer, the Make-a-Wish foundation made sure we would never feel the regret of a wish unfulfilled and in November 2025, we received the following email:
And before we could believe it, we were sent off to Orlando to fulfill Phin's wish to be a zookeeper at Animal Kingdom.
Zookeeper Phin
Animal Kingdom with our honorary zookeeper
You may have noticed that there are no behind-the-scenes photos of Phin as a zookeeper. We were not allowed to take them, nor share the ones the zookeepers took and sent to us, in a public forum. A small price to pay for the wish of a lifetime being granted, but rest-assured, on day three of our trip, we were met at Animal Kingdom by a guide who drove us out "beyond the magic" to meet the zookeepers. Phin was able to care for some elderly female cheetahs by making enrichment activities for them, and learned how to train a rhinoceros. He met and spent time with five zookeepers who seemed as excited to meet and have Phin alongside of them as we all felt. They told us that they had never, in all their time there, recalled another wish to be a zookeeper. "We've had people wish to go on the Wild Africa Trek, but none to be a zookeeper." We wrapped his wish up with a personal escort and guide on the Kilimanjaro Safari. They gifted him his own animal training tools and a water bottle with carabiner. I daresay they were wistful, posing for photos and talking about how they once dreamed of being zookeepers here, too--it was as if they were snapping each photo with future photos of Phin as a certified Animal Kingdom zookeeper in mind. If I let myself get hopeful, I can almost see the photo of 8 year-old Phin beside the one of his first day on the job at Animal Kingdom--his sandy shirt and shorts, a floppy hat and sunglasses, his training tools in hand, and the same group of zookeepers unable to contain their joy at Phin's much anticipated arrival, their reunion.
We would be remiss not to mention our stay at Give Kids the World Village, a resort dedicated solely to wish kids. Some of Phin's most favorite people are his cousins and three of them happen to live in Kissimmee, a mere few miles from the Village. On the day we arrived, the cousins, Aunt Sara, Uncle Anthony, Granny, and Pepop were able to join us to explore everything it had to offer: all day ice cream, a huge game room, mini golf, characters, amusement park rides, and a Halloween party that night.
Later in the week, Phin got to visit with Stella the fairy to make his star. Every child who stays at the village is invited to make a star. Once they do, Stella and her giant friend (he's legitimately a giant--the only one who can reach to the rooftop to adhere the stars to its sky) find a home for it in the castle of the Village. A few days later, you are invited back to view your star.
Phin with Stella the Fairy
The star viewing for us was particularly meaningful. Our family was in deep mourning over the loss of our beloved Aspen mere days before this trip. We all struggled to stay cheerful in the face of the immense grief overtaking us. But Aspen sent sign after sign that she was with us, including the placement of her star in the exact same room as Phin's, just a few wall panels away, at the same exact height. We took small comfort in knowing they would remain there, united, forever.
When the Make-a-Wish (MAW) foundation grants a wish, they really go all out. A day at Animal Kingdom for Phin to be a zookeeper would've been all the wish we could've hoped for, but MAW gave us tickets to Universal Studios and every Disney World park. In all, we had five days worth of tickets that included parkhopper passes and unlimited lightning pass access to every ride. Every child in the Michael family's dreams came true. Phin and Obelia got to meet all the characters they could find (see Johnny from the Sing movies who is responsible for two of his favorite songs--"I'm Still Standing" and "A Sky Full of Stars"). Av discovered her love for rollercoasters and introduced Phin to his favorite ride (The Avatar Flight of Passage), which he then rode a million times over. We watched the fireworks show at Epcot while Phin sipped hot cocoa flights--twice. We pet a baby velociraptor and saw the newly opened Zootopia attraction in Animal Kingdom. We rode the monorail, and made a robot. We faced fears and made memories we will never forget.
In my heart, I dream and pray that this trip was the culmination of his cancer journey. That it is the bookend experience of a battle hard fought, one he will never have to endure again, and that these were the spoils that went to our victor. After years of dreaming about this wish--a wish that sustained him through some of the darkest days, a wish I prayed he'd get to see to fruition in the depths of so many hospital nights--it came true.
Happy NYE, Phin phans! Dustin here with a very quick post about Phin's progress and health. Before I get into that, I just want to wish everyone the best for 2026. May the coming year be filled with warmth, light, good health, and prosperity for all of you.
Medical Updates: The counts from Phin's clinic checkup earlier this month were nice and boring--maybe the most normal-looking labs we've seen for him since 2021, and certainly since BMT. Always a huge relief for us. His clinic appointments are getting spaced-out again, meaning the occasions where we get a peek into his circulatory system to see what's swirling around in his veins are becoming fewer and farther between. On one hand, it's cool, because 1) it suggests things are going according to plan with his recovery and 2) nobody likes having their kid get poked with even more needles.
But on the other hand, it's scary. Not knowing, I mean. Every time he gets a cold, falls asleep in the car, or doesn't feel like eating breakfast, our thoughts fly right to the darkest place. How could they not?
Anyway, this month his counts look great. Not only that, he got to check in with physical therapy for the first time since June and retake some of the assessments for strength, balance, and stamina. Six(ish) months ago, he was a year out from BMT, and he'd only just barely resumed attending school for the full day, and his flexibility and range of motion was declining rapidly due to GVHD. Now, after half a year of martial arts classes, soccer, swimming, and regular schooldays since late July, he's basically doubled his scores on the strength, balance, and stamina tests. Phin was super proud of himself. You can see him in the gif above, doing the standing long jump assessment in full Hulk out mode, sans shirt. Smashing it.
Phin On the Daily: I haven't forgotten about my promise to report on Phin's Make-A-Wish trip. It's overdue, and I'm sorry for not getting it out yet. Still processing. Honestly, these last few weeks have been tough. Phin's health is looking great, but for our dear friends, and for our pediatric cancer community in general, it's been a very dark time. Bear with me a bit longer. We had a really exciting and fun trip, and I'll tell all about it and share some special moments soon.
In the meantime, rest assured that Phin and his sisters and cousins had a good Christmas together. We spent it largely with Neesha's family, staying up way past our bedtimes, eating far too many sweets, and having a holiday that felt kind of happy, kind of sad, and, for a change, blessedly, kind of oddly normal.
