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.
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.
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 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.
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.
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.
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
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.
Hi Phin phans! Dustin here with an update on Phin for July.
And yes, you read that title right--it's back to school time already. Phin and his sister's school starts back up in July. Phin was ready to go! Even though he's had a lot of fun this summer, he couldn't wait to see his classmates and teachers again. At time of writing, he's finishing up his first full week as a second grader. Here's hoping it's a good year for him and for all the kiddos and teachers who are headed back to the classroom in the coming days.
While Phin seems to be feeling nothing but excitement, Neesha's and my emotions regarding his return to school are a little more complicated. Filling out that First Day of School placard, it's hard not to think about our friends who aren't able to start school this year on the first day because they're currently undergoing treatment. It's hard not to think about the cancer parents who suddenly no longer get to fill out a first day of school placard. It's hard to balance the joy of Phin being currently healthy enough to start school against the guilt that people we love have not been so fortunate, and to complicate that balance with the terror that Phin's progress could reverse again at any moment. We haven't forgotten the times he started the school year in the classroom and ended it in the children's hospital. Or the times we chalked that placard deep into the school year because he hadn't been medically cleared to resume in-person instruction when classes started.
Counting pre-K and last year's redo of first grade (since he missed so much of the year the first time), this will be Phin's fifth first day of school. Of those four starts, he's never made it from the first day of school to the last day of school.
We're really hoping that second grade will be the first time.
Anyway, enough talk of school! Where did the rest of summer go?
There was the Fourth of July, which he hasn't always gotten to celebrate out in the wild, but this year he did. A bunch of our friends and neighbors (and my cousin Rachel, in town all the way from Missouri!) came over to hang out and watch fireworks. No scorched flesh or blown-off fingers, so even better!
We also got a brief surprise visit from our friend Stephanie, whom we hadn't seen since last summer when she brought us books at the Ronald McDonald House in Atlanta and served food for Cure Childhood Cancer at CHOA.
Aside from that, Phin spent a good chunk of July on the road, with another trip to Atlanta for a clinic visit, and a big family vacation to NYC. I couldn't go on either of those adventures since I'd signed up to teach this summer, but Neesha made sure to text me plenty of pics so I could see what I was missing out on. He finally got to meet his Aunt Barb! He and his sisters got to see Neesha's hometown and her college on the drive up. Once they arrived in the city, Phin and his mom, sisters, cousins, uncles, aunts, and grandparents toured landmarks and museums, watched Broadway shows, shouted "I'm walkin' here!" indiscriminately, and forged all kinds of memories they'll treasure for the rest of their lives.
Medical Updates Phin's counts looked good at his monthly clinic checkup at CHOA. His levels of white blood cells, red blood cells, hemoglobin, and platelets were, as his oncologist would say, "stone-cold normal." In fact, according to those labs, this Phin's blood is the most stone-cold normal-looking that it's been since before he was diagnosed with AML in 2022, nearly half his lifetime ago.
I knocked on wood as I typed that just now. Far be it from me to think for one second that we're in the clear. We may never be. I haven't forgotten that.
Nor have I forgotten that even though Phin's blood might look normal, it's anything but. The amounts of different blood cells swirling through his system might fall within the normal ranges at the moment, but because they were produced by another person's bone marrow, the genetic composition of those blood cells is different from that of the cells in the rest of his body.
That's why he's still dealing with the graft vs. host disease (GVHD) in his elbows and wrists. For some reason, in those specific places, his body's original cells and the cells produced by his donor's bone marrow are at war. This could have happened pretty much anywhere in Phin's body, according to his oncologist--and it still could--but the wrists and elbows are where the conflict rages right now.
Some good news, though! When the oncologist checked Phin at the clinic and then compared the results with the photos and notes from the previous clinic visit, he concluded that not only does the GVHD's advance seem like it's stopped for now, Phin appears to be regaining some of his range of motion.
We aren't sure what's causing this positive outcome, and the science on this subject is a bit spotty. Studies tend to recommend a combination of physical therapy and an exorbitantly expensive kinase inhibitor called Jakafi, which Phin takes twice a day. The physical therapy hasn't started yet due to staffing and scheduling issues, but we've done our best to keep Phin moving and using his arms as much as we can in the hope that'll do the thing physical therapy was supposed to do. He's been swimming and practicing taekwondo with me almost every day, sometimes multiple times per day. It's not clear whether these activities are helping to reduce the GVHD and the resulting joint stiffness, but we intend to have him continue doing them as much as we can just in case.
Phin On the Daily After training with me off and on at home, Phin finally joined a martial arts school this summer and started learning taekwondo with other kids as part of a class.
I have to confess, I was torn about this. My closest friends all know how great an impact taekwondo has had on my life; many of those same friends know this because we trained together.
A photo of a practice dummy sporting a Phin Phans t-shirt--one of many gestures of support sent by our friends at the Lee H. Park Martial Arts Institute in Jackson, MO.
I think anyone who's practiced martial arts can attest that the people you work out with eventually feel like family to you. That's how it was at the Lee H. Park Martial Arts Institute, the school where I learned taekwondo. Even though I moved away 20 years ago, one of the first people to reach out when I announced that my kid had cancer was the head instructor at that school. She and her students have rallied for Phin through every step of his treatment, remission, relapse, bone marrow transplant--all of it. Their love and support gave me strength and reminded me of the parts of martial arts I think are the most valuable, which all have to do with getting back up when you fall and continuing even when it's really hard--the indomitable spirit parts.
Anyway, I'm not trying to make this about me here. What I am trying to say is it was difficult for me to put Phin into a martial arts school other than the one where I trained, which is unfortunately hundreds of miles away near my hometown. But while Phin and I really love kicking and punching each other from one end of our house to the next, I finally conceded that he needs the chance to form the kinds of bonds my friends and I formed working out together. and he'll only be able to do that if he's bowing in with other kids.
So while I'm still getting used to Phin's new martial arts school and the way things are done there, I can report that Phin has no such hesitation. He trains relentlessly, doing walking drills up and down the hallways of our house and insisting that we swing a foam-covered bat at him from all angles so that he can practice blocking for hours. His balance and stamina are both noticeably better than they were just a few weeks ago. His reverse punch stings more, too.
I will admit that even though Phin's instructor was not my instructor, he is extremely effective at getting Phin to lock in and work--something I am frequently unable to do. He's also a very good martial artist. And he incorporates a little goofiness into his instruction, which...I can relate to.
Phin's about a month into his training. He gets to attend classes twice per week.
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