Wednesday, December 14, 2022

To phace unafraid the plans that we made


Happy holidays, Phin phans! 

Dustin here with a quick update. Let's get it. 

Here's a shot of Phin from last weekend, the slanting light of a late autumn sun glinting gold in his fuzzy brown hair as he tears around a leaf-strewn playground with Neesha hot on his heels. We've been so worried about him lately. When he falls asleep in the car after school, when his lunchbox comes home still full, we make our notes and wring our hands. "Does he look pale again?" we ask ourselves, then each other. 

But then, this is fall, and the days are shorter and darker. These are the kinds of days that make everyone feel a little tired and look a little pale. And maybe the lunches I pack for him are gross sometimes? Who knows. When I look at photos like this one, though, where he looks to be a picture of happiness and health--just a regular kid having fun on a regular autumn afternoon--I feel my own body relax a little. 

Just a little. Just for a moment. 

Medical Updates
Phin had his fourth clinic visit on December 2, and what made it awesome (other than pretty boring bloodwork) was getting to hang out with his buddy, Aspen, who was there for her monthly visit as well.   

Here they are together once more, three and a half months after ringing the bell. We'll see Aspen again in this post momentarily.  

As I mentioned up top, Neesha and I were both anxious about this clinic visit, after a rogue myelocyte turned up on Phin's bloodwork last month. Normally, those stay in the bone marrow until they turn into a kind of white blood cell called a neutrophil. The oncologist explained finding them in the bloodstream like taking cookies out of the oven before they're done baking. Clearly he knew how to connect with me. There were a lot of metaphors he could have gone with in that moment, but he looked at me and thought, This is a person who has a deep appreciation of baked goods. So he deployed a cookie reference and it was absolutely the right decision on every level. 

I imagined Phin's immune system as kind of like an industrial bakery, like the one at Byrd's Cookie Company here in Savannah. The cookies are the white blood cells, just like in the oncologist's image, and the oven is the bone marrow. Visitors to Byrd's Cookie Company can attest that there are cookies aplenty in there. It's a healthy system that has abundant stores of reserves ready to go if some sudden demand should arise. Lots of little cookies all cooled and packaged, and humongous ovens in the back making more all the time. 

But for a bakery like the one in post-chemo Phin, there wasn't a lot of inventory sitting around. He had some cookies ready to go, but not tons of cookies. So whenever a busload of pathogens would unexpectedly roll up and start demanding cookies (I feel like this is where the metaphor starts to groan under the strain a little), Phin's stores would get cleaned out pretty quickly. I just picture this frantic baker tossing half-baked wads of molten cookie dough down a conveyor belt in a desperate effort to crank out enough product to meet the need. 

So, there you have it--myelocytes. 

If there'd been more myelocytes in his lab results this month--or worse, blasts (I don't have a cookie analogy for those and I refuse to think too hard about it for fear of inadvertently putting myself off cookies for life)--we would have wondered what exactly is going on with this bakery. But no. All good, the oncologist said. Plenty of different cookies, er, white blood cells, all fully baked, in all the familiar flavors. 

Oh! Speaking of blood (and leaving cookies behind, which, to be honest, is not my custom), big props to Neesha, who successfully donated blood yesterday! She got it done through The Blood Connection at a mobile drive at Memorial Hospital. The next one through them here in Savannah is at Enmarket Arena on 12/21 from 12-5 p.m. 

It will take the two of us years to replace just the amount of donated blood products Phin used from March to August, but we're committed. We intend to give back every drop and then some. We're in this blood donation game for life.

Also, we just want to say again, thank you to everybody who donates. You guys are all straight up saving people's lives.  

Phin On the Daily
Listen. All the anxiety and the worry, the walking-on-eggshells feeling, the waiting for the floor to fall out...that's all us. Phin is not about that at all. Phin is fearless. Phin’s out there living deep and sucking out the marrow of life, Henry David Thoreau-style. This holiday season, from the second his eyes open, he's checking on the elves, doing the advent calendar, making the train go around the tree, and doing all manner of Christmasy things. When he gets home from school, he's drinking hot chocolate, playing with toys, running crazy around the neighborhood, riding all kinds of vehicles. He's always laughing, always moving, always ready for whatever. He's excited about his sisters being in a Christmas play and excited about his friend Joseph's football team winning the state championship and excited about his school's Christmas program later this week. Phin is into it all. 

"It's like he's taking back every minute he lost," Neesha said. "He lives with gusto. It's infectious, and it's a good reminder for all of us to spend every minute and not to waste a single one." 

That doesn't mean Phin has forgotten. At times, he's reflective about his time in the hospital. He tells us sometimes, cautiously, that his cancer is gone. He talks about his nurse friends, his Child Life friends, all the hospital friends and helpers who came to visit and play with him. He talks about the hospital playroom and playground. He talks about Henry, his I.V. He remembers everything. He says he liked the people there but that he missed his class and his sisters, and that he didn't like having to stay away from home for so long. That is also what he said at the time. Nothing has changed. 

Actually, that's not quite true. Some things have changed. 

The side-by-side below is courtesy of Kelley, the mother of Miles, who joined our childhood cancer family when Phin and Aspen were in the middle of their final round. The photo on the left is from that time, over the summer. The photo on the right is from the Cure holiday party last week, when the band got back together. 

 

Miles has since begun another grueling round of chemo. Phin and Aspen are off treatment. 

When I look at the three of them in their Cure shirts, standing together outside under a dappled December sky, I'm so proud. So proud to know these three people. So proud and so honored.  

Look at their smiles. Look at how far they've come. Look at who they are.      

Phevers

Hi Phin phans. It's Dustin, popping in with an update on Phin. Here goes. So much about Phin's current experience with leukemia rese...