August 2026

Hi Phin phans! Dustin here with an update for August, 2026. Let's get into it. 

As September and Childhood Cancer Awareness Month approaches, we consider the idea of community and what it means to be a part of it. As any parent of a kid who's faced cancer will tell you, it isn't a community any of them expected they'd ever have to join. On the contrary, it's probably the one parents fear being initiated into more than any other. We think about the people we've met since we joined, when Phin was first diagnosed with AML, almost half his lifetime ago. We think about the friends we've made, and the ones we've lost. We think about how much lonelier a place it would have been without the people who have accompanied us. We remind ourselves of the importance of accompanying others. 

In the words of this year's Cure Childhood Cancer flag, "No child fights alone."  

We also consider the organizations that support the pediatric cancer community and the people who work there. Many things impress and humble us in thinking about those people, but this especially: Out of all the possible careers they could have chosen--careers that might have paid them far more while also insulating them from the horrors of watching children suffer from cancer--they chose instead to light their candles and carry them into the darkness. 

Knowing how many of them elected to do this after having cared for a loved one who faced cancer--or after having faced cancer themselves--impresses and humbles us further still.  

Medical Updates
Phin's visit to the bone marrow transplant clinic at CHOA was positive overall. We were fortunate to be accompanied on this visit by Phin's grandfather, who provides not only his valuable medical expertise, but also his trademark wit and warmth. 

According to his lab work, Phin's counts look great. His donor's bone marrow continues to churn out the blood cells his body needs in order to carry oxygen (red blood cells), fight pathogens (white blood cells), and stymie bleeding (platelets). While graft vs. host disease (GVHD) remains (and likely will always remain) a concern, the most recent expression of the disease in his joints seems to have resolved, and he now enjoys his full range of motion again, just as he had at the previous checkup. This is all great news. 

The main issues addressed at this clinic visit had to do with the kinds of aftereffects of treatment that we knew might appear and seem like a small price to pay considering Phin is still around at all. Chiefly, he's tracking very low on the growth chart. This is in part because the chemotherapy he received might have interrupted some of his growth and limited how big he will ever be able to grow. It is also in part because the chemotherapy he received altered his sense of taste, so that he now has a harder time finding foods that he likes. His taste for sweets seems to have been nuked. He still likes savory things, but getting him to eat a balanced diet can be tricky. If only everything tasted like bacon, sausages, fried eggs, or smoked salmon! 

Still, all things considered, this was a great checkup. His next one is scheduled for October. 

Phin On the Daily
August was a busy month for Phin! He did some swimming, played a lot of soccer out in the yard with anybody he could wrangle into kicking the ball around for hours in the sweltering heat, promoted to purple belt in taekwondo, and, in an unexpected turn of events that swelled the hearts of both of his English teacher parents, discovered a new love of reading. 

Pics or it didn't happen? We got you, fam! (For some of it, anyway.)

Phin's friends Paxton and Isla read together.

Phin at Leopold's Ice Cream to try the special
Luna's Star Sundae honoring his fellow leukemia
survivor and Make-A-Wish recipient, Luna. 

 

Rain or shine, shoes or barefoot, it's soccer
all the time around here.

Phin and his oldest sister at Fun Zone, courtesy of Camp Sunshine.

That's all for now. We'll be back with another update next month. Thanks, Phin, phans.

Phin, Phlags, Phutbol

Hey Phin phans!
Dustin here with an update for July 2026. Let's plunge in! 

Phin returned to school at the end of July, entering third grade. His school starts classes earlier than most other schools (several weeks earlier than his sisters' schools), and in typical nine-year-old fashion, Phin was none too pleased to watch the final golden rays of sunlight dissolve as his abbreviated summer break faded once more into the extended twilight of classrooms and car lines.  

However, I would be remiss not to mention two important facts for which we are exceedingly grateful.

First, Phin gets to begin another school year. Not just that—he gets to go back to school with the other kids in his class at the start of classes. It may seem like a bummer to him, but we have learned not to take these things for granted. 

(Earlier this week, Phin's martial arts instructor asked when Phin's school's open house would be. I said it had already happened, and that he'd been back in class for several days. He looked at Phin and said, winking, "Your dad's happy about that," and he was right, of course. Just maybe not for the reasons he thought.)  

Second—and for some reason we didn't really acknowledge this when it happened—Phin has now successfully completed one full, complete, uninterrupted year of school! Last year, for the first time in his life, he made it all the way through. No withdrawing halfway through for treatment. No switching to online instruction to protect his rebooting immune system. No coming in late and sprinting to make up lost ground. 

He went all the way through second grade from start to finish. 

Here's hoping in third grade he can run it back and do it again. 

Phin and his sister and mom visit his 
pediatric oncology nurse friends after pickup
on his first day back at school. 

Medical Updates
A nurse friend of ours recently reminded me that you never say "the Q word." Saying that word invokes commotion, discord, and pandemonium. It jinxes everything. So, with that in mind, I'll merely report that Phin's health seems stable. His levels of energy and appetite are both robust. His color seems vibrant. His scrapes and cuts clot and close. He seems positive and upbeat in mood and outlook, and he gets excited to do activities and to play with his family members and friends. The only medical mystery we have no name or clear explanation for is Phin’s once-a-month gastrointestinal chaos. 

I know some of you may be wondering if the cyclospora outbreak raging through the U.S. might be the villain I’m talking about here, but rest-assured, Phin does not eat foods grown from the ground again (mostly, yet). Rather, about once a month, Phin is suddenly afflicted—and without warning, usually in the middle of the night—stomach bug-like symptoms. He throws up a few times with no other symptoms. The closest hint we may get at what’s coming is his inability to find anything that 1) tastes good and/or 2) satisfies his appetite. In fact, he can’t quite tell if his stomach hurts because he’s hungry or if it’s “something else.” So we keep a bucket handy and watch-and-see. It could be GVHD, but barring a stronger reason to put him through an invasive procedure under anesthesia and scope his intestinal tract, we watch-and-see, about once a month, every month.

Phin at his second home
down the street

Phin's next visit to CHOA for bone marrow clinic is in a couple weeks. As has been noted many times before, the period just before clinic visits is one of great apprehension for us (and, I suspect, for many other cancer parents). Everything might look healthy and normal on the outside, while in its ancient tongue, the blood might be quietly telling another story. We can only read that tale in translation through his lab work.  

So, as always, we wait. We watch for subtle signs that the plot might be about to twist. We steel ourselves to receive the story the blood tells. 

Phin On the Daily
Granny gave Phin a 2026 FIFA World Cup blanket with the flags of the 48 teams' countries printed on it. We couldn't have predicted it, but that seed found fertile soil in Phin's mind and has sprouted into a thriving obsession with world geography. He wants to know about borders, histories, wars, and alliances. He's interested in the rise and fall of empires, about the consequences of colonization, and the struggles that resulted in liberation. He constantly asks about different groups of people, their cultures, their languages, the lands in which they dwell and the customs they keep. 

No geographical minutiae seems too granular or obscure for his fascination, including (to bring this back to where it began), country flags. 

Of course, this newfound academic pursuit has only buttressed his adoration of the world's most beautiful game. He completed another soccer camp this month, focusing mostly on striker skills. 

Phin practices attacking at soccer camp.

It's been a pretty seamless soccer experience for him this month, honestly. 

Phin's grandfather takes him to school.

 

Phin and friends play soccer.

I'll leave it here for now. 

As always, thanks for following along. Thanks for reading these updates, and for thinking about our kid and other kids who have to face cancer and other terrifying illnesses. Thanks for encouraging our family and the families of kids in your communities who are going through it, or who have gone through it.

Thanks for doing cool stuff like this.   

These things you're out there doing, these acts of kindness—they matter. 

They all matter. 

The Month Phin Turned Nine

Hey there Phin phans! Dustin here with a quick update for June. I'll start with the medical updates, then do a kind of photo recap thing like we've done a couple of times on this blog to illustrate what he's been up to this month. Let's get into it!

Medical Updates
At Phin's latest clinic checkup in Atlanta, we learned he appears to be completely cured of his joint GVHD. That's the condition that was stiffening his elbows, wrists, and ankles, and reducing his flexibility and range of motion. After a year of treatment, it looks like there's no trace of it. This is beyond the hopes and expectations of the BMT team, which was already looking for alternatives for when the treatment plan they tried didn't work. 

But it did work. 

That's the main news. His doctor and he chatted about the World Cup (both are following it closely) and sung the praises of Phin's progress to Neesha. Phin's counts look good. His donor's bone marrow continues to do exactly what it was supposed to. All in all, a great checkup.

He got one vaccine at this visit, which he much preferred to the four or five he got the last two times. No more vaccines for six months. However, he still can't receive MMRI vaccines. That means it'll be another school year for him with his 504 at the ready to yank him back to remote school in the event that anyone rolls up with measles, which, sadly, seems less far-fetched than it once did.

Phin On the Daily

Phin's first camp of the summer was an all-sports camp he attended with his 

friend, Grant. Mostly he played soccer. This photo, taken by someone else,

was originally posted to the camp's host's social media page. 

Level green belt unlocked! Phin concluded his first year of martial arts classes with his promotion to green belt under the guidance of Mr. Murray (pictured here) and the other instructors at Savannah Black Belt Academy. 

Phin and his buddy kick a light-up soccer ball at dusk in the neighborhood. Soccer has become an almost constant preoccupation in our house (and yard), with Phin working on his dribbling and shooting from sunrise to sunset almost every day he's home. 

After his clinic appointment, our favorite World Cup fanatic stopped by FIFA Fan Festival in Atlanta. While he didn't get to catch Morocco's 4 - 2 victory over Haiti that evening, he did immerse himself in the joyous atmosphere of the World Cup by checking out the stations around the venue and partying and playing with other fans from around the world. 

Phin checks out his latest haircut--a modified version of the hairstyle worn by Phin's favorite soccer star, Neymar da Silva Santos Jr., commonly known as Neymar. A bit disappointed that it wasn't shaved to the skin on the sides and curly and bleached blond on top like Neymar's current cut seems to be, Phin was nonetheless satisfied with the results. 

Obelia (left) and Phin wade through crashing waves at Spash In the Boro, a waterpark in nearby Statesboro, GA. Phin, his sisters, parents, and Uncle Coire spent the day zipping down slides, floating the lazy river, braving the peaks and troughs of the wave pool, and soaking up as many summer vibes as they could. This easy day trip for the family had been on Neesha's to-do list for years. Now, in this moment of relative--and, hopefully, lasting--calm,, in which Phin's body can once again handle prolonged exposure to heat, sun, water, and crowds, what would have been completely out of the question even a year ago finally became a reality. 

Thanks to a dolphin cruise gift certificate we acquired at a Cure Childhood Cancer fundraiser earlier this year, Phin, Obelia, Uncle Coire, and I got to spend a sunny afternoon watching dolphins swimming around feeding and occasionally leaping through the wake behind the boat of the coast of Tybee Island. None of us had ever seen a baby dolphin before, but the tour guide spotted one for us, and we watched it cleave to its mother as the two of them searched for fish in the briny waves. 

All of Ours: Two Years

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.

-N

April 2026

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. 

The Life of Phin, by Phin

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. 

March 2026

"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.