Phincreasing Stamina

Hi Phin phans! Dustin here. Sorry for bogarting the Phin blog lately. Neesha's long overdue to post an update, but she's got a cold and she's resting at the moment, so you're stuck with me again. Here's what's been happening with Phin this past month. 

I want to start this post where April started, with a class field trip to the UGA Marine Education Center and Aquarium. I got to tag along, just like I did last year. It was a great time. Everybody had fun. Phin and his classmates got to hold live horseshoe crabs and get up close to all sorts of other sea creatures, like the sea horses that live in the aquarium he's inspecting in the photo. 

The last time we were here was a little over a year ago, on the exact same class field trip. Same teacher. Same grade. Same facility. Same fish, probably. Different kids, since his former classmates all advanced, but almost everything else was the same. 

That's what made it hard. 

When we were here last year, I was waiting for a call from the pediatric oncology clinic about his labs. I was trying to be present and engaged for my kid on his field trip, but inside I was gasping for hope and flailing against the undertow of the realization that he'd relapsed and that it was all about to start again, only this time with higher stakes and fewer options. 

He doesn't know it yet, I thought, as he dashed from tank to tank with his friends with me snapping photos because of the sadistic economics of cancer kid moments, where the supply chain of the future has suddenly collapsed and turned abundance into scarcity, but after today, he'll probably never be in class with these kids again. 

And of course, the call came with exactly the results we'd feared. 

Now, here we were again, the following year. At certain moments, either because of the dim light and the shadows it cast through the seawater in the tanks, I begin to feel off-balance, unmoored, adrift in time. It was as if I were seeing double--the shadow of the Phin of last year and the form of the current one. 

Watching him stare at that seahorse tank, with his reflection staring back at him, I imagined the two Phins face to face. 

"Dad, look at this seahorse trying to hide," Phin said. 

I brought my face close to the glass, not to look at the hiding seahorse, but to reassure to the Phin from year ago, who had just relapsed. And to reassure the version of myself standing next to him, underwater, sinking, afraid. 

And to reassure myself, the current version. As I stood next to Phin, staring at our reflections, I reminded myself that despite the eerie similarities, there was something different now. Small, hidden, but vitally important, the bone marrow he received from his donor was even at that very moment churning out healthy cells into his bloodstream, making it the only difference that really mattered.  

I took one last look at our pale reflections staring back at us through the aquarium glass, the versions of us I imagined from last year.  

"It's going to be so hard," I wanted to tell them, "so, so hard. But don't give up, okay? You're both going to make it back here."

I'd be lying if I said I didn't wish they saw us, our pale reflections from the past. What I would have given for them to have seen us standing on the other side. 

What I would't give to have helped them be less afraid. 

Medical Updates
Phin's counts looked good when he went to the clinic here in Savannah in the middle of the month. He'll be headed back to Atlanta for clinic in the middle of May. His CHOA team is confident enough in his progress to hand off some of his care and alternate our Atlanta visits to every-other-month now, which we interpret as a positive development.  

At clinic, he saw his OG nurse heroes Franki, Amanda, Autumn, Erinn, and Molly (via Facetime). He saw Dr. P., who's been with him since the beginning. 

He also got to play with Aspen. 

When friends ask us about Phin, the question they follow with is always, "And how's Aspen?" 

We hope to make a longer update about her in the coming days. Until then, please keep her and her family in your thoughts. 

Seeing them play together again brought my heart such joy...and such sorrow. I'll quote from the beautifully written update Aspen's mom posted from that visit:

"There was one point, just before we left, Phin said, 'Hey Aspen, how long have you had your cancer?' She shrugged and he said, 'Oh, I have had mine for 3 years.' This is their life. These appointments are their norm and these are the conversations they are having. While it will always be a part of them, I know there will be a day that they are running around outside talking about the soccer game, or naming their stuffed animals. It will come." 

Phin On the Daily
April was a busy month for our guy.

From field trips to field day, to Easter egg hunts (three of them, by my count!), to birthday parties, a showing of the Minecraft movie, a beach day, trips to Charlotte and Hilton Head, his sister's soccer games and an art show and a chilly dip in the pool, Phin has re-entered the world. Now that his stamina is higher, he's been extending his time at school from half-days to full-days.

He's living with the fierceness and vigor of a kid with almost fully restored energy who has been unleashed after many months of restrictions and confinement, coupled with the awareness of a kid who knows it can all change in an instant.