Momentarily Phree

BMT squad goals: Seth and Phin outside the RMH

Hey there Phin phans! Dustin here with an update. Here we go!

Recap

Phin was diagnosed with acute myeloid leukemia (AML) in March of 2022. He spent five months in the hospital, did four rounds of chemotherapy and count recovery, and rang the bell in August of that year.

For the next 18 months, everything looked great. Phin went back to school, traveled, went to birthday parties, played with his sisters and friends, and learned how to swim, ride a bike, and ice skate. He went to clinic checkups, his scans all came back clean, and the appointments got fewer and farther between.

In February 2024, Phin relapsed, and since then he’s completed two month-long chemo-and-recovery rounds at the children’s hospital in Savannah and then transferred to the state’s only bone marrow transplant site at Children’s Healthcare of Atlanta. He received a bone marrow transplant from a non-related donor at the end of May and spent the following weeks inpatient on the BMT unit at CHOA receiving more chemotherapy and waiting to see if the bone marrow cells he received would engraft.

On June 24, he was discharged and rang the bell for a second time.

Phin is currently staying at a Ronald McDonald House in Atlanta, where he will remain for the next several months so that he can be monitored and more easily attend his frequent clinic appointments. 

Milestones
Here’s a video of Phin ringing the bell after he completed his treatment plan on the BMT unit at CHOA:

Medical Updates
It’s 8:50 p.m. on Monday, July 1, and we’re back at the hospital. I’m writing this from a room in the ER, where Phin was told to report because at his clinic visit this morning he complained about a tooth, and the nurse practitioner poked in his mouth and made some notes, and after she consulted with his main BMT doctor it was decided that the best thing to do would be to have him come in.

They think it’s probably a puss-filled abscess under his gums, and since his new bone marrow is still setting itself up in his system and his counts are low, they don’t want to take a chance that the infection in his mouth spreads. They’re going to take some X-rays, and probably they’ll keep him here until they pull that troublesome baby tooth out. But they’re full up on the BMT unit where we were just a week ago, so we're waiting. We hope they’ll find a room for us there soon. 

Phin On the Daily

The week between when Phin left the hospital after he rang the bell and when he returned this evening is similar to the year and a half he spent in remission after he rang the bell the first time back at the hospital at home. Both times, he was pretty fragile as far as his immune system goes, which means we had to put limits where he could go, what he could do, and whom he could be around.

But that never stopped him from enjoying every day and enjoying his freedom. This last week, he went hiking and

explored the trails behind where we stay. He went to a drive-in movie. He had late-night movie parties and built blanket forts with his sister, who’s visiting this week. He drove all around on his ride-on Land Rover, which was brought to him from home by our dear friends and neighbors Bev and Seth, who stayed in the same room we’re currently in at the Ronald McDonald House here in Atlanta when Seth was doing his own bone marrow transplant several years ago. Phin did yoga and lifted weights. He played Battleship and assembled Lego sets. He even went to one of those drive-through safari places where zebras and ostriches come up right up to the vehicle, and he wasn’t even bummed when we warned him about germs for the millionth time and told him we had to keep the windows up.

All in all, he had a really full week. Phin lives hard. That’s basically how he did it the whole time he was in remission. It’s like he’s making up for the time he lost. Or, maybe he’s living as much as he can right now, in the present, because when it comes to the future, you just never know.

Hopefully...

We knew when we left the BMT unit last week that we'd probably be back sooner or later. That's kind of why I wasn't too upset that I forgot to grab our snacks out of the communal fridge when we took off. Still, we hope this tooth abscess thing is a quick and easy fix and that Phin can go back to the Ronald McDonald House, where he has a lot more freedom and room to move.

Aside from that, we're also thinking about one of our dear friends right now who is waiting on some test results to come back. We're really hoping those results are good.

Thanks for reading, pham. More soon. Stay safe until then.