And yes, you read that title right--it's back to school time already. Phin and his sister's school starts back up in July. Phin was ready to go! Even though he's had a lot of fun this summer, he couldn't wait to see his classmates and teachers again. At time of writing, he's finishing up his first full week as a second grader. Here's hoping it's a good year for him and for all the kiddos and teachers who are headed back to the classroom in the coming days.
While Phin seems to be feeling nothing but excitement, Neesha's and my emotions regarding his return to school are a little more complicated. Filling out that First Day of School placard, it's hard not to think about our friends who aren't able to start school this year on the first day because they're currently undergoing treatment. It's hard not to think about the cancer parents who suddenly no longer get to fill out a first day of school placard. It's hard to balance the joy of Phin being currently healthy enough to start school against the guilt that people we love have not been so fortunate, and to complicate that balance with the terror that Phin's progress could reverse again at any moment. We haven't forgotten the times he started the school year in the classroom and ended it in the children's hospital. Or the times we chalked that placard deep into the school year because he hadn't been medically cleared to resume in-person instruction when classes started.
Counting pre-K and last year's redo of first grade (since he missed so much of the year the first time), this will be Phin's fifth first day of school. Of those four starts, he's never made it from the first day of school to the last day of school.
We're really hoping that second grade will be the first time.
Anyway, enough talk of school! Where did the rest of summer go?
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There was the Fourth of July, which he hasn't always gotten to celebrate out in the wild, but this year he did. A bunch of our friends and neighbors (and my cousin Rachel, in town all the way from Missouri!) came over to hang out and watch fireworks. No scorched flesh or blown-off fingers, so even better!
We also got a brief surprise visit from our friend Stephanie, whom we hadn't seen since last summer when she brought us books at the Ronald McDonald House in Atlanta and served food for Cure Childhood Cancer at CHOA.
Aside from that, Phin spent a good chunk of July on the road, with another trip to Atlanta for a clinic visit, and a big family vacation to NYC. I couldn't go on either of those adventures since I'd signed up to teach this summer, but Neesha made sure to text me plenty of pics so I could see what I was missing out on. He finally got to meet his Aunt Barb! He and his sisters got to see Neesha's hometown and her college on the drive up. Once they arrived in the city, Phin and his mom, sisters, cousins, uncles, aunts, and grandparents toured landmarks and museums, watched Broadway shows, shouted "I'm walkin' here!" indiscriminately, and forged all kinds of memories they'll treasure for the rest of their lives.
Medical Updates
Phin's counts looked good at his monthly clinic checkup at CHOA. His levels of white blood cells, red blood cells, hemoglobin, and platelets were, as his oncologist would say, "stone-cold normal." In fact, according to those labs, this Phin's blood is the most stone-cold normal-looking that it's been since before he was diagnosed with AML in 2022, nearly half his lifetime ago.
I knocked on wood as I typed that just now. Far be it from me to think for one second that we're in the clear. We may never be. I haven't forgotten that.
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That's why he's still dealing with the graft vs. host disease (GVHD) in his elbows and wrists. For some reason, in those specific places, his body's original cells and the cells produced by his donor's bone marrow are at war. This could have happened pretty much anywhere in Phin's body, according to his oncologist--and it still could--but the wrists and elbows are where the conflict rages right now.
Some good news, though! When the oncologist checked Phin at the clinic and then compared the results with the photos and notes from the previous clinic visit, he concluded that not only does the GVHD's advance seem like it's stopped for now, Phin appears to be regaining some of his range of motion.
We aren't sure what's causing this positive outcome, and the science on this subject is a bit spotty. Studies tend to recommend a combination of physical therapy and an exorbitantly expensive kinase inhibitor called Jakafi, which Phin takes twice a day. The physical therapy hasn't started yet due to staffing and scheduling issues, but we've done our best to keep Phin moving and using his arms as much as we can in the hope that'll do the thing physical therapy was supposed to do. He's been swimming and practicing taekwondo with me almost every day, sometimes multiple times per day. It's not clear whether these activities are helping to reduce the GVHD and the resulting joint stiffness, but we intend to have him continue doing them as much as we can just in case.
Phin On the Daily
After training with me off and on at home, Phin finally joined a martial arts school this summer and started learning taekwondo with other kids as part of a class.
I have to confess, I was torn about this. My closest friends all know how great an impact taekwondo has had on my life; many of those same friends know this because we trained together.
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| A photo of a practice dummy sporting a Phin Phans t-shirt--one of many gestures of support sent by our friends at the Lee H. Park Martial Arts Institute in Jackson, MO. |
I think anyone who's practiced martial arts can attest that the people you work out with eventually feel like family to you. That's how it was at the Lee H. Park Martial Arts Institute, the school where I learned taekwondo. Even though I moved away 20 years ago, one of the first people to reach out when I announced that my kid had cancer was the head instructor at that school. She and her students have rallied for Phin through every step of his treatment, remission, relapse, bone marrow transplant--all of it. Their love and support gave me strength and reminded me of the parts of martial arts I think are the most valuable, which all have to do with getting back up when you fall and continuing even when it's really hard--the indomitable spirit parts.
Anyway, I'm not trying to make this about me here. What I am trying to say is it was difficult for me to put Phin into a martial arts school other than the one where I trained, which is unfortunately hundreds of miles away near my hometown. But while Phin and I really love kicking and punching each other from one end of our house to the next, I finally conceded that he needs the chance to form the kinds of bonds my friends and I formed working out together. and he'll only be able to do that if he's bowing in with other kids.
I will admit that even though Phin's instructor was not my instructor, he is extremely effective at getting Phin to lock in and work--something I am frequently unable to do. He's also a very good martial artist. And he incorporates a little goofiness into his instruction, which...I can relate to.
Phin's about a month into his training. He gets to attend classes twice per week.
He would go every day if he could.
