The Gift

Twenty-one months. 

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.

A Long Awaited Wish Come True

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. 

Leaping Into 2026

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.  

November, 2025

Hi there, Phin phans. Dustin here. We just got back from Phin's Make-a-Wish trip. It was very special, joyous in many ways, hard in others. I'll do my best to unpack it through a series of posts in the coming days. I think that if I try to do it all at once right now, it'll either be too long to read, or it'll come out so summarized and generalized that a lot of important stuff will get glossed over. 

So more on that later. What I can say is, we're grateful that we got to go, that Phin was healthy and strong enough to finally see his long-delayed wish granted, and that we all arrived home again safely. 

Medical Updates
Not much to report. Another respiratory bug fell to the warrior cells deployed by Phin's donor's bone marrow. The blood draw from this month's clinic visit produced the boring kinds of counts we love. GVHD in his joints appears to be arrested for now. We're thankful for this. 

Phin On the Daily 
Like his mother, sisters and me, Phin is grieving over the loss of Aspen, his oldest and closest friend, who fell asleep for the last time in her mother's arms eight days ago. Unlike the physical anguish and suffering Phin endured through his many rounds of chemo, it is difficult to gauge the extent of the devastation on him. Aspen and Phin shared a connection few of us can appreciate, and no blood test or LP or MRI can reveal this type of damage, just as no medicine or surgical procedure can repair it. 

Also unlike any pain Phin has so far faced, he doesn't have Aspen here to face it with him. 

In the obituary, Aspen's family requests that, in lieu of flowers, those wishing to honor Aspen instead donate to Cure Childhood Cancer. I'm copying that donation link here. 

Halloween 2025

Happy Halloween, Phin phans!

It's Dustin, just back from trick-or-treating with Phin and some of his friends, and ready to dump a sweet little update for October into your attention sack. 

That...didn't come out right. 

Anyway, here we go!

Medical Updates

There isn't much to report, and that's awesome! 

Several times this month, minor upper respiratory infections and other sicknesses crept up on Phin, but thanks to his donor's bone marrow, his immune system rolled right over them and he barely noticed. He's still getting sick a lot because he's had the pathogen exposure of a wee baby (in fact, even today he's been coughing and complaining that his throat feels scratchy since he woke up this morning), but so far his system has been able to fight off all the germs it's seen.

As of his last clinic visit on Oct. 10, his counts looked great, his donor's bone marrow was still cranking out blood cells, and he remained in remission with no evidence of disease. He is scheduled to return to CHOA for another clinic visit on Nov. 4. 

We're still waiting on clearance to redo his measles, mumps, and rubella vaccinations since all of those were wiped out when his old bone marrow got nuked. He took this year's flu shot like a champ, though.

Graft-versus-Host Disease (GVHD) symptoms persist in terms of joint-stiffness, but they don't seem to be advancing. He might be keeping the stiffness at bay by staying active. Two thing have recently helped with this--losing most of his iPad privileges and cooler temperatures that allow him to play outdoors for longer. Another factor: He learned how to throw and catch a football this month, spurred by a desire to play catch with his classmates at recess. When he's not practicing his taekwondo techniques and forms inside, he's out in the yard tossing the football with Neesha, his sisters, and me. 

Phin On the Daily

A reader of this blog suggested recently that I try to express a little more of the joy I feel at how well Phin is doing right now. I'm trying to do that, just like I'm trying to open myself to feeling it while I'm wide awake. 

What I mean is, every morning--every single morning--when I wake up and discover that I'm at home, and that Neesha is at home, and that Phin is still alive and at home with us, I feel the purest, most transcendent, most luminous joy. I float for a few ecstatic moments, detached, like a falling leaf slowly spinning toward the forest floor as golden sunlight spills through its tissues from above. Soon, my waking mind engages, and the leaf flutters and settles into the shadows of frustration, fear, sadness, grief, and guilt that darken my experience of consciousness, but for those first fleeting seconds, I am brilliant, weightless, ablaze with the euphoric knowledge that my son, for the moment, is safe. 

But wait, I'm supposed to be talking about Phin and what he's been up to this month. I've digressed. 

Phin and his buddy passed their promotion test at taekwondo and belted up. He was very excited and proud of himself, and he ought to be. He's worked harder at taekwondo than at anything else I've ever seen him try, drilling his techniques and the movements of his form tirelessly on the days between classes. 

I'm very proud of him, too. 

He traveled to CHOA for his clinic checkup, and then he went to Florida for his cousin's birthday party, where he got to play laser tag and do a ropes course. He went to North Carolina to celebrate Diwali. A lot of traveling for one month! All of it's pretty normal, kids-doing-life kinds of stuff, but it's noteworthy. A year ago, during his long post-BMT convalescence, he had to miss out on everything except the CHOA visits. 

It was at his cousin's birthday party that the person told me to show a little more of the positive stuff and how it feels, and she had a point. It's appropriate to share how lovely it feels to watch Phin have a good month. I can only guess that it’s refreshing for others to see him thriving. After all, childhood cancer makes for grim reading, and the wins, when they happen, are always conditional. 

Always conditional, and never clean. 

It's also good to leave a record of the positive stuff. Dark days may be coming. When they arrive, may the memories of the brighter moments carry us. Let us preserve those happy memories so that, when we need them, they in turn might preserve us. 

Childhood Cancer Postcards: The Haunted Rooms

Phin in the hallway of the unit in April, 2022

Lights that flicker on and off, machines that reset unexpectedly, and alarms that sound at random. 

These occurrences, which we experienced while Phin was admitted, are apparently common in hospitals. Which is the likelier cause--the accumulation of many medical devices plugged in close together, each drawing current from the hospital grid and creating an electromagnetic field, or the presence of a supernatural being?

Opinions vary. 

One of Phin's nurses who has since moved on (to another hospital, not from the Earth) told me, in hushed tones, that "the ghost" was encountered most frequently in the room typically assigned to Phin. This nurse also recalled some of the strange happenings attributed to the presence of this spirit: malfunctioning equipment, tripped sensors on medical devices, the room's automatic paper towel dispenser activating without warning. I confirmed that we had also seen some of those things happen during our months-long stay in that room. 

"That would be the ghost," the nurse said, nodding.

From this and other interviews I gleaned that no one has ever actually seen or heard the ghost, as its ability to interact with the physical world appeared to be limited to interfering with electronics. Most of those to whom I spoke stopped short of speculating whose ghost it might be. 

I was grateful for that.   

These kids--the cancer patients staying in the pediatric oncology unit--already find themselves restricted, unable to leave their room, the building, the hospital complex. To think that a child's life would end in that place and that even then their spirit still would not be allowed to leave...

And what of the parents? Imagine an inner voice whispering, No, Mr. __________, you may have buried your child, but their spirit remains right here in their hospital room, where you are no longer allowed to go. You have lost them. Twice. 

We saw and felt things we could not explain while Phin was admitted, it's true. I choose to believe there must be a rational explanation for them. 

The alternative is too ghoulish to bear.   

Childhood Cancer Postcards: The Final Days of Egleston

Phin outside Egleston in August, 2024

The old Egleston Children's Hospital at Emory is a ghost town now, abandoned since patients were transferred to the new Arthur M. Blank Children's Hospital last September. Among the nurses and technicians we met while Phin was there in summer 2024, during what we called "the evacuation stage," rumors swirled about what would become of the sprawling complex. Many told us in no uncertain terms that the place was in bad shape, but as the date of the big move to the new children's hospital approached, we watched it enter a phase of accelerated crumbling. Lights would burn out and stay dark. Elevators would break and nobody would come to fix them. A collective attitude of "abandon ship" prevailed all around.   

But not everywhere.

Outside the cafeteria, there was a large forested area with strong Hundred Acre Woods vibes created by winding walkways meandering beneath looming trees and lush terraces. 

Only once was Phin able to explore this place, although he passed it many times on his way to and from the bone marrow clinic. It happened a week or so before we left for home. Phin, his grandfather, and I stopped for drinks at the cafe inside and decided to check it out before heading back to the Ronald McDonald House. 

What we found there reminded us that wonder can open up even in places that are closing down.

The tiny door Phin noticed was hidden away from everyone except those confined within the children's hospital. Now, it's hidden away from all. 

I'm glad Phin found it when he did.