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 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. 

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.