Three Years In

Hi Phin phans! 

Phin visiting some of his OG nurses at Children's Hospital
 on the third anniversary of his leukemia diagnosis 

Let me try to be sunny for a change. 

It’s Dustin, by the way, writing on the third anniversary of Phin’s admittance to the children’s hospital for leukemia. We have already told the story of that day many times. We’ll probably tell it many more. I guess that’s what happens when you get blown apart. You endlessly tell the story of how you got that way.

For today, though, let me tell you about what’s going well with this boy, who, if you’re reading this, there’s a very good chance you’ve supported, prayed for, cared for, thought about, and helped. 

As of his last clinic checkup, Phin’s counts look good! His body is making plenty of the kinds of blood cells it needs–platelets, white blood cells, red blood cells, hemoglobin…

…and none of the things he doesn’t need like blast cells that would indicate that the cancer has returned. 

The donor marrow that he received through bone marrow transplant last year is a part of him now. From what we can tell, it is doing exactly what it was supposed to do, and it completely eradicated any trace of his original bone marrow as well as the leukemia that was hiding in it. From what we can tell. 

He’s back in school half days and is gradually building stamina toward staying for full days. Assessments so far show that he retained nearly all of the skills and knowledge from the 10 months he was out, so when he went back this winter he was able to pick up right about where he left off when he relapsed last February.

He’s cleared to start getting revaccinated (the BMT wiped out the antibodies from his original immunizations), and although he can’t get live-virus shots just yet, his team thinks his immune system is robust enough for the rest, and he’ll go in for some of those in the coming weeks.

Since he re-entered the world after BMT, he’s gotten sick A LOT. Just yesterday he finally shook some unidentified bug that had given him a sore throat all week, and that was only the latest in a long parade of minor illnesses that has marched through him this winter. Remember, he has the immune system of a newborn again, one that’s meeting every pathogen that gets into him for the very first time. The good news is, when he gets sick, he gets better. 

On a field trip to Oatland Island Wildlife Center with his class

His mental health seems good. He’s looking forward to things, especially his “rebirthday” (the day he received his donor’s bone marrow) and his birthday (uncannily, it’s the very next day, and he was technically still getting his BMT on his actual birthday). Phin is counting down the days until both of these events and has already started making elaborate plans for each. He’s not in soccer yet, but he still wants to play. He likes being around friends, generally wants to get out and do stuff, and is often the first one ready to go. 

He’s concerned about his friends and asks about them often, particularly Aspen, who is supposed to come home this week after her own BMT and 100 days of observation and recovery. 

He still laughs in his sleep, just like he always has.

In most of the important ways, Phin is still the same kid who shuffled into the ER of the Children's Hospital all pale and covered with bruises three years ago today. He's got a lot more scars, a few fewer teeth, a whole different blood type, and, hopefully, no leukemia. Once he got settled in his room on that first admission, he refused to take off his school uniform shirt for almost a week, such was his resolve to return to the life he loved. In the years since, with everything he's been through, many parts of that life changed. But looking back at these three years, remembering the long swaths of exquisite anguish and fathomless despair, and the many fleeting glimpses of insane hope, dizzying gratitude and ecstatic, transcendent joy, there are two really great things that haven't changed at all.

He's still here.

You're still here.

Thank you, Phin phans. Whatever happens next, you can rest assured we'll keep the updates coming. Thanks for being at our side this whole time.

Medical Updates I feel like I already covered this above when I mentioned Phin's doing well as of his last clinic appointment, so here's a timeline of what's happened so far:

Phin On the Daily 

Phin discovers the sloth exhibit

The last place we took Phin before he was diagnosed with leukemia in 2022 was the Jacksonville Zoo. Animal fanatic that he is, he loved that trip. He talked about it the whole time he was in treatment. He's been back once or twice since then, but we went again this month. They have sloths there now. Phin was thrilled to meet them. We purchased the year-long pass--an act of optimism and courage that seems like a good thing to include to match the sunny theme of this entry, and also a good note to end it on.