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.   

Childhood Cancer Postcards: The Healing Garden

Phin in the Healing Garden in June, 2022

Neesha calls it “an oasis.” That’s a good image, a verdant little spot where travelers can rest as they cross the vastness inhospitable, although in this case “inhospitable” and “hospital” might be a bit of an unfortunate conflation. This oasis, the Healing Garden at CHOS, served as a place where Phin could restore himself and play in sunbeams and fresh air during his long inpatient stays for chemo and count recovery. 

Nestled between the towering walls of the children’s hospital, the Heart & Vascular Institute, and the parking garage, the Healing Garden held that same kind of allure that all magical spaces hold. Like an enchanted bookshop at the bottom of the mysterious staircase, or a faerie glade beyond the thicket, or a hidden fortress just over the creek, the Healing Garden gave off a special kind of energy. Imagine the feeling of your best friend from childhood whispering a secret in your ear, only now imagine it as a place. Entering it always felt like crossing into somewhere not everybody knew about, where not everybody could go. 

Two sides of the Healing Garden are formed by the children’s hospital and the enclosed hallways that connects it to the rest of the hospital complex. One side abuts a walkway between the Heart & Vascular Ifnstitute and the parking garage with the helipad. The other side faces the parking lot, and it was from this side that visitors would approach and gather near the fence to see Phin. Standing along this fence at the Healing Garden was the only way for most of Phin’s relatives and friends to see him for the months he was in treatment. 

Plant life lines the perimeter of the Healing Garden--fescue, small bushes, ornamentals, and palms. Here lizards scurry and dragonflies dart between the lower leaves while cardinals and finches flit among the branches. The textures, colors, and smells of the leaves and petals in this hidden corner of the hospital complex remind the children being treated inside of a world that awaits their return. 

An encircling pathway provides a boundary separating the foliage and a play area in the Healing Garden’s center, at which point, anchored in a still sea of poured-in-place playground rubber, floats a sturdy ship. We spent many days aboard this vessel (which Phin usually dubbed “The Molly” after his dearest pediatric oncology nurse), and in our journeys of imagination we visited distant shores in every corner of the globe. Some of my most vivid memories from this time revolve around our daring adventures on that ship. The Healing Garden was the backdrop for all of them. 

Most days, we had the entire place to ourselves. Occasionally, we would arrive as a nurse or technician was finishing their lunch in the quiet tranquility of the picnic benches beneath the sun shade as the gentle breezes rustled the palm fronts and leaves nearby. Sometimes we would discover traces of other kids--names written in sidewalk chalk next to hearts and flowers and rainbows--but we rarely encountered any kids themselves. One time we did find another pediatric cancer patient there, and we became very close to both him and his mom. Actually, I’m still wearing a bracelet with his name on it, right now, typing this, three years later. 

We also found a bird nest with eggs in it a few weeks after we arrived. A few days later, we heard the peeping of baby cardinals. A few weeks after that, we watched the adult cardinals helping the chicks practice flying, calling to them and zipping back and forth as their offspring bounced against the low hospital windows like little fluttering balls of cotton, slid back down, and gradually learned to avoid trying to fly through glass. 

A few days after that, they were gone. 

Phin and I crept quietly toward the nest to check. It was empty, of course. When we looked inside, we saw that the cardinals had woven medical waste between the sticks and twigs. Hard to tell exactly what it was--some kind of translucent plastic, like a patient’s discarded wristband, or the discarded wrapper from a syringe. That stuff became just another part of the baby cardinals’ childhoods, too. I think about that all the time.

Could Be Worse

Hi Phin phans! Dustin here with an update on Phin for August, 2025.

Before we get into it, I just want to thank you all for continuing to follow Phin's progress, even though we're approaching the one-year anniversary of his return home after his bone marrow transplant and subsequent recovery period in Atlanta. For the most part, he's been doing well since then, although we've been through enough by now to know that could change at any time.

Sometimes as I'm writing these updates, I think, Maybe our people would rather we only bother them if something serious is happening? There are plenty of childhood cancer blogs like that--annals of diagnosis and treatment that stop with a triumphant, "Well, we sure are glad that's over! Thanks for following along, everyone!" only to resume, heartbreakingly, with an entry a few months later that begins with the line, "We hoped we'd never have to post here again...." 

In part, I still post these (usually) monthly updates on Phin out of dread of that happening.

Mostly, though, I do it because if you're reading this, there's a really good chance you've been following Phin's progress for a very long time. You've put in emotional labor through keeping tabs on how he's doing, and it hasn't always been easy. Neesha and I both know that. We haven't forgotten. You've invested in our child's life. A lot of this writing is me trying to show you how your investment is doing: This is what he's doing with the time you hoped he would have. 

(And okay fine, some of it's for me, too, because writing helps me work through things and feel better. Sometimes, anyway.)

So thanks for still being here and reading these posts. Like I said, Phin's been doing pretty well lately, other than giving us a few minor frights and his chart presenting some disappointments we've been trying to keep in perspective. I'll get into that below. He's one month into the new school year, and he likes his teacher and his classmates. He's still swimming a lot and practicing taekwondo every day (often by attacking me, Cato-from-Pink Panther-style, when I least expect it), and hanging out watching movies, riding bikes, and playing videogames with his sisters and friends. 

He's really glad to still be home, and glad to still be alive.

Medical Updates

Phin's latest bloodwork found no evidence of disease, and all his counts (white blood cells, red blood cells, platelets) came back in the normal and expected ranges. The Graft vs. Host Disease (GVHD) is still a concern, but something appears to be working (either the medicine or Phin's martial arts stretching/activity) because he is regaining some of the flexibility and range of motion he lost in his elbows and wrists. His oncologist was excited by those results.

One bummer is that the scan of his lungs indicates he probably has very mild asthma. I just want to pause here and say, as a lifelong asthma sufferer who has carried an inhaler in my pocket every day since age six, that it's wild how little bothered I was by the news that Phin might also have asthma now, too. Asthma sucks. I wouldn't wish it on anybody. It's miserable, scary, and dangerous. If Phin had received that diagnosis without having spent half his life fighting leukemia, I probably would have been devastated. Keep in mind, however, all the forms that Neesha and I had to sign that acknowledged the risks required just for Phin to get the medicines to save him from cancer. They always read something like:

Do you understand that this treatment may cause heart failure? Check. 

Liver failure? Check. 

Kidney failure? Check. 

Blindness? Check. 

Paralysis? Check. 

Nerve damage? Check. 

That it might cause new cancers to form, including the very same cancer that it's being administered to treat? Check.

On and on. 

All these risks and compromises we agreed to. The possibility of death versus the absolute certainty of death.

Easy choices, when you think about it. 

Not really, though. 

Neesha texted from the clinic appointment: "The doctor says Phin looks great but maybe has asthma now."

I took a hit off my puffer and thought, Could be worse.

Phin On the Daily

Yesterday, as Phin and I were returning home after his taekwondo class, I mentioned the recent string of fox sightings our neighbors have been reporting. That's all it took to launch us on a fox safari. As we crept down cul de sacs with our windows open in the spitting rain of that early autumn afternoon, I thought of how we used to trek around our subdivision looking for different kinds of mushrooms, or for bats, or birds, or deer, or alligators, or armadillos, or insects. I remembered how we spent mornings during the pandemic looking for animal scat or footprints in the dirt that had been cleared by builders as they prepared to make our community's newest homes. I remember learning all kinds of animal facts with him. So much has happened since then. A lot of things are different now. He's different. I am, too. 

But I guess in some ways, not really. 

One of the things that's changed, since in the past seven years our little neighborhood has seen two of its youngest residents nearly snatched away by leukemia, is that there are a lot of yard flags supporting Cure Childhood Cancer. It's an organization that helped us from the moment Phin entered the hospital, and we love seeing it represented on the lawns of so many of our friends who live near us. We even saw this year's design in front of a few houses on yesterday's fox safari! No foxes sighted (yet), but we did get to see some cool Cure flags!

It's no coincidence that I'm bringing up Cure Childhood Cancer and their fundraiser yard flags now, since September is Childhood Cancer Awareness Month. As you may have guessed, I'm a proponent of childhood cancer awareness. 

And action!

Sometimes when somebody's shaking you down to donate to a cause, it helps to have a specific person in mind and to know how that person got helped by the money people donated. So, this September, if any of the following organizations hit you up, here's what they did for Phin and us. 

American Red Cross	Phin would not have survived without the platelets other blood products collected by the American Red Cross from donors like you and me
Blood Cancer United (formerly Leukemia & Lymphoma Society)	Blood Cancer United helped with expenses during Phin's initial treatment. It also provides major funding for blood cancer research
Camp Sunshine	Phin got to have fun at community-building events, excursions, and outreach programs designed for kids with cancer and their families
Cure Childhood Cancer	Cure delivered thrice-weekly meals the whole time Phin was in the hospital and provided assistance with household bills and travel expenses, as well as counseling services for our whole family. Cure also funds pediatric cancer research
National Bone Marrow Registry (formerly Be the Match)	Phin owes his life to a bone marrow donor who was identified, contacted, and shepherded through the collection process by this global nonprofit
Ronald McDonald House Charities	We stayed with Phin at the Ronald McDonald House in Atlanta for 100 days after he was discharged from the hospital. It became home to us--a safe, warm, clean, secure place to live while he recovered and continued to receive treatment

Thanks, Phin phans. 

Oh! Kind of off the subject, but I still think this is so cool. My brother Coire and I dropped in to visit the taekwondo school when I was back in Missouri earlier this month. It had been a long time since either of us had trained with that crew, and it was our first time seeing the awesome space where they work out these days. 

Anyway, it was great to be back and to spend an evening with them. It felt like being with family. Those. Guys. Go. Hard! We showed Phin the video of the workout. As a budding martial artist himself, he had to admit he was impressed! 

People who follow Lee H. Park Martial Arts - Taekwondo on social media are already long acquainted with their resident Phin Phans swag-adorned practice dummy, Bob, but it was really good to meet him, too. We really appreciate the support, fam. Thank you.