Medical Updates
Phin has been cleared to space his clinic appointments out to one every three weeks. Not only that, he also gets to alternate clinic visits at CHOA with the children's hospital here at home. During his first clinic appointment in Savannah several weeks ago, we got to check out the brand new clinic building that we watched construction crews and cranes assembling from his hospital room window last spring. It's super nice, but Phin's favorite part by far was getting to hang out with his O.G. team again.
Phin's counts looked good at that visit (Feb. 10). He goes to Atlanta so that his CHOA team can check him over this coming week, so fingers crossed for that. His stamina is still recovering, but he's finally gaining some pounds and his complexion is looking a little less ghostly and wan. His BMT team cleared him to play soccer in the coming weeks, and we're all excited about that.
Phin On the Daily
Sometimes, lately, when we talk to Phin, it's like he's just woken up from a dream.
"I was playing soccer," Phin has said, on several occasions, apropos of nothing. "I was goalie. You guys were mad at me because I was tired."
Phin is referring to an incident from three years ago, one we hate to discuss because it is too painful. It was early March. Phin was dying. We didn't know that yet. He stood in the goal in his shin guards and uniform, listing slightly from side to side like a little sailboat. Ball after ball flew past. Phin only swayed and whimpered. What is wrong with him? we scowled. He was dying. We didn't know.
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| Phin in March, 2022 |
We tell him he has been dealing with cancer for almost half his life.
"You had cancer when you were four," we say, "and you beat it. Then, it came back when you were six, and you beat it again."
"Now, I'm seven," Phin says.
"You're seven," we assure him. "On your next birthday, you'll turn eight."
"Do I have cancer now?"
We always pause. Pray. Gather our strength.
"No," we say. Phin smiles.
Often at this point the conversation veers into territory where all of our answers feel like speculative fiction writing exercises: "What would happen if...?" or "In the future, will I be...?" Neesha and I already spend our waking moments mentally drafting and redrafting manuscripts about these possible worlds in which we are all characters. We tend to share the sunnier versions with Phin.
But lately, Phin has expressed more curiosity about what has been rather than what could be. He wants to know how old he was when various things happened--the time he was in the Child Life room and his ball disappeared, or the day he got his first CVL taken out. He's asking about the things he's seen and done on and off treatment and the litany of medical procedures he's undergone through all of it, but also these events' relation to one another in time: "How many days were between the time when we played Uno with the nurses at night and the time when we moved back home?" and "How long after we got back from India until I went back to the hospital?" That kind of thing. Fortunately, some of that history is recorded here. Much more of it is written down in my journals and notes.
It's like he's finally emerging from a yearlong Groundhog Day-like loop of isolation and iPad obsession, a sanctuary he built for himself in his mind. In a way, he is waking up from a dream--one he forced himself to have because his reality was too frightening and awful.
Imagine what it must be like for him. He was four years old, standing on a soccer field, feeling so, so tired. He blinked his eyes. Suddenly, he's thinking of playing soccer again, only three years have passed. He's roughly the same size (thanks to the chemo), but he's almost twice as old. How did that happen?
So, we believe, Phin is constructing a timeline--placing the events of his life in sequence, fixing the order, and asking questions.
But really, underneath all of Phin's questions is one fundamental question:
"What did I miss?"
