Diagnosiversary

Hey there, Phin phans! Neesha and Dustin are both coming at you with this month's update. Let's get it!

Phin with his classmates watching the
fountain turn green for St. Patrick's Day

Neesha: March 29th marked one year since Phin's first chemo treatment. The day before that was one year since his central line placement. March 25 was a year since they named his leukemia: AML and March 23 was the day "leukemia" was spoken into existence. 

Dustin: The day that Phin was diagnosed and the days that led up to it last spring have been discussed already in this blog (which just had its first birthday–wild!) here and here, as well as elsewhere here and here. That period has been pretty well documented, I think. 

Neesha: As the anniversary of Phin's diagnosis neared, so many little things reminded us of last year before he was diagnosed: Phin got a bruise; Phin got untraceably sick; Phin was more tired one day, more lethargic another, not hungry... All the little things that added up to his unlucky diagnosis last year seemed to be piling up again, though, admittedly, on a much smaller, much more scrutinized scale. I dragged him to Dr. Behm and, although I was substituted in for Dustin’s role last year as the attending parent, the date and visit felt familiar to us both, I’m sure. I suspect we both felt a similar kind of relief when his finger-prick blood work revealed a series of “healthy, normal” numbers.

Dustin: [Narrator voice] They did.

Neesha and Phin at bedtime

Neesha: But the reality of his one year diagnosis anniversary loomed large. For at least one day, a week before the actual anniversary, I couldn’t shake the sense that some riptide awaited us just ahead on March 23. I couldn’t stop thinking about how innocently we’d lived our lives before the worst happened, and the anniversary of that worst was inching closer with each day of March. I sat on the couch in our living room, sent Dustin and the kids off ahead of me on a camping trip with our friends and watched the entire fourth season of You on Netflix, only leaving the couch to begrudgingly let the dog out or shuffle myself across the living room, still in my fuzzy pink bathrobe and flannel PJs, to the bathroom, until I’d seen it all. If you’ve seen season 4 of You, you know this was an intentional act of desperation. It was good, but none of the You seasons is good enough to sit through 7.5 hours at once. If you know me at all, you know 1-I never actually watch TV much (this is why I leave the movie and TV references to Dustin), and 2-Sit? For 7.5 hours? Me? Bwahahahahaha.  

Dustin: Phin’s Uncle Coire put this feeling in terms I could understand with a Back to the Future reference. So much of what’s happening right now feels eerily familiar, like we’ve been here before. It's just because the air and the light at this time of year remind us of the most horrific scene of our lives. We wake up like Marty McFly in a world that seems familiar but changed--hopefully for the better, but it may still be too soon to tell. When little things like the ones Neesha mentioned started happening again–and even stuff like Phin joining a soccer team like he did just before he got diagnosed last spring–it really started to creep us out, like we were Marty, running to that mall parking lot just in time to watch Doc get gunned down again. We spent this whole month hoping it’d go differently this time around, like we’d get the reveal of the taped-together note and the bulletproof vest. 

Neesha: Switching back to You, I guess watching Joe murder off (SPOILER ALERT) a series of unsuspecting, largely elitist (why is it always the rich?) Londoners worked its magic, though, cus, by day two, my (and the dog’s) bags were packed and we were off. Camping with our friends, it turned out, was exactly what I needed. When we came back, Dustin decided to make it donut-rain on the pediatric oncology nurses to commemorate Phin’s diagnosiversary.

Dustin: The evening before we did that, Phin and I were walking to the field to see his sister Av play soccer. 

“Tomorrow is kind of a special day,” I said. “It’s one whole year since the day you first went to the hospital for cancer. One year since you met all your friends there. Can you believe it?”

Phin didn’t say anything. 

“Since it’s a special day, maybe we could go and visit your hospital friends before school. Maybe bring them some donuts. I bet they’d like that. What do you think?”

“So, then I’ll have to do it all again?” Phin asked quietly.

“What? No! No, buddy, no. No, you’re better now. We’re just going there to say hi. You don’t have to stay this time. Don’t worry.”

Phin still looked worried.

“Dadda?” he said. “Will I get to have a donut, too?”

“Definitely.” 

Phin and his hospital pham 

“Yay!” he said, and he raced ahead with excitement and joy.

Neesha: Then we decided not to just spread the donut wealth on our favorite oncology nurses, but to turn the day into a celebration of Phin and his incredible spirit, and in celebration of everyone we encountered that day because getting through this past year has been a communal act, not a solitary one. We showered donuts on Phin’s unexpecting classmates and teachers, the front office staff at his school, our SVA family (who welcomed me back to the classroom this January, which I’m now realizing I may not have mentioned yet)...if we didn’t see you that day, please know you were–and continue to be–thought of and celebrated in our home every day, with or without the receipt of a celebratory donut.

Dustin: Phin was super happy when he came outside at pickup time that day.

“How did it go?” I asked.

 “Great!” Phin said. He said that everyone liked the donuts, but also that his teachers let him announce that they were doing morning recess (I suspect because we kind of upended that morning’s curriculum with those donuts–sorry!). 

He continued. “I said, ‘MORNING RECESS!’ and everyone came up and hugged me! I felt really proud of myself!”

I’ve thought about that a lot. Sometimes through all of this, it’s been hard to find words to convey our emotions. When I’ve talked to Phin again about how it felt when his classmates came up and hugged him last week, he’s used that same phrase–proud of himself. But I don’t think he means it like we typically think. He isn’t proud of himself because he’s accomplished something. It’s not about anything he thinks he’s done. Phin doesn’t really think in those terms, and certainly not about his cancer. What he means is that when his classmates came up to hug him, he felt proud to be Phin. It made him feel accepted. He felt like he belonged. 

Phin chilling with his oncologist

Medical Updates: Phin hit the seven month mark. He has been officially off-treatment since mid-August, which–one oncologist told me–is actually when they begin to count his remission date from, as well. So he is officially seven months in remission. Early March, Phin had a bout of the stomach bug, which we were unable to find a source of transmission from and no one else in our home got it, which, of course, was the reason I dragged him back to the pediatrician for a look-see. I covered it above, but he’s good and we did end up discovering a classmate also had the same affliction within the same time period. Redemption for my anxious mind that now needs to have a reason for why my cancer child is sick instead of just rolling with it, like we usually would.

Phin’s blood work is a thing of beauty, despite his allergies messing with his eosinophils. 

Phin preparing to get blood drawn

One striking new reality we have is how relatively unphased Phin is by sickness now. I don’t know about you or the kids in your life, but for the kids in mine–vomiting is a pretty traumatizing experience filled with crying and drama and sometimes misses that need to be cleaned up. This is true of all kids in my personal mental history, but for Phin, when he was sick this month, it was just like another part of life that happens and you deal with it before wiping your face off and asking for some toast while heading to the sink to clean out your mouth. His experience with vomiting is vast. He’s kind of an accomplished puker and could probably give classes on it, but it’s striking to see his level of expertise in such a small child. It’s a fragment from his experience that he’ll carry with him. Artifacts like this litter our lives, Phin’s especially, like stark reminders that the past is not buried that deeply and can emerge again at any moment.

Phin On the Daily: Phin brings up his time in the hospital frequently. He hasn't forgotten the friends he made there and the many people who cared for him and helped save his life. He wishes he could still play with his nurses and Child Life buds every day, and occasionally, when we cut him off on popsicles or tell him to shut off his shows because it's past his bedtime, he tells us how much he'd love to be living in the hospital again instead. And sometimes we try, as gently as we can, to remind him that he was gravely ill and in mortal danger then, and also that he wasn't allowed to leave. But most of the time, we let it slide. His memories of the ordeal that began a year ago are bathed in rays of golden sunlight, and the pain, the tears, the blood, and the terror are fading away.

Training wheels–disengaged!

On our camping trip with our friends, the Talarcyzks, we took the training wheels off Phin's bike–something inconceivable to us half a year ago, when his platelet count was so low that a scraped knee might have led to horror-movie levels of bleeding and left him prone to infections he couldn't fight off. Phin has normal platelets now, and he's been putting them to work! He crashed his bike over and over, but now, instead of bleeding out, he got banged up, slapped on some bandaids, and rode on.