Thankphul

Hey there Phin phans! Dustin here. No new medical updates on Phin right now (he goes back for his monthly clinic visit next week), but here are some photos and stuff he's been up to as we plow into the holiday season. Let's get it. 

Phin and his sisters made cards for the nurses on the pediatric specialty unit at the Children's Hospital. We wanted them to know we're thinking of them this Thanksgiving, even though no amount of thanks will ever be sufficient for the debt that we owe them and his physicians and the rest of the crew there. 

We spent part of Thanksgiving Break decorating for the holidays. That includes busting out the village. 

Phin and one of his sisters also attended Camp Sunshine's holiday party at the Children's Hospital and enjoyed hot chocolate after a snowball fight. Phin isn't old enough to remember the time it snowed here for real, but he's seen pictures of himself as a baby with the flakes coming down. Still, he took to this pile of trucked-in snow outside the Children's Hospital playground like a frosty warrior from the frozen north. 

The captain returns to the ship. 

Something about this photo (every photo in this post, to be honest) feels a bit unreal to me. It was taken moments after the one above. Here's Phin, bundled up in late November, guzzling hot chocolate on the deck of the vessel that we sailed to the edge of our imaginations all spring and summer, when the weather was so hot and his constitution was so frail that we had to time every voyage carefully.

Have we really arrived here? Is this real?

I just realized the reason these photos seem surreal to me. It is because while Phin was hospitalized, on the rare occasions I would allow my mind wander the misty corridors of possible futures, it always found its way to the same door and crept into the same small room of hope. These are the images that decorated the walls of that room.

It was a dangerous place to visit then, especially because the mind remembers the way to that room through the labyrinth of nightmare possibilities. It would sometimes sneak back there while I slept.  

That is my fear--that none of it's real, that I'm curled up again right now in that room in my mind, a dust mite of consciousness nestled snugly inside a blanket fort of prayers. In an instant that room and these images might all turn to vapor and it will no longer be November, but April. 

I'm terrified that this is all a dream.  

Phin and pham before the Turkey Trot 5k and fun run. It's unclear when it happened, but at some point in the last decade we became a turkey trot family. We've made a showing at this race in previous years with a half dozen or so of us participating, but this year we turned out in force. 

Phin and Neesha slice through the pack near the starting line of the Turkey Trot 1-mile fun run.  The course for the fun run and the 5k diverged after about a half a mile, and while Phin and Neesha made the turn for the 1-mile course, Phin's sister Obi shot right past it. I caught up with her around a mile and a quarter in.  "Where is everybody?" Obi said. "They're all up ahead," I said, "or they made the turn for the mile race. Unfortunately, you're doing the long race now, kiddo."  "I don't want to do the long race!" Obi said. "I'm not ready for that!"  I knew that feeling. So often we find ourselves in the middle of things we haven't adequately prepared for.  "Sorry, Obs, but at this point I think the only way out is through."  "I want Momma," Obi said. I knew that feeling, too.  "Momma's doing a different race. This is your race."  "Ugh!" Obi shouted. And then she poured on the speed and left me for dead.

Phin and Neesha slice through the pack near the starting line of the Turkey Trot 1-mile fun run. 

The course for the fun run and the 5k diverged after about a half a mile, and while Phin and Neesha made the turn for the 1-mile course, Phin's sister Obi shot right past it. I caught up with her around a mile and a quarter in. 

"Where is everybody?" Obi said.

"They're all up ahead," I said, "or they made the turn for the mile race. Unfortunately, you're doing the long race now, kiddo." 

"I don't want to do the long race!" Obi said. "I'm not ready for that!" 

I knew that feeling. So often we find ourselves in the middle of things we haven't adequately prepared for. 

"Sorry, Obs, but at this point I think the only way out is through." 

"I want Momma," Obi said.

I knew that feeling, too. 

"Momma's doing a different race. This is your race." 

"Ugh!" Obi shouted. And then she poured on the speed and left me for dead.

We all made it to the phinish line. 

This family has a lot to be thankful for. Many were the moments this year when it wasn't clear how many chairs we'd need at the table when we gathered. To be in the room with Phin and his grandfather now...to remember everything that has happened...it is enough to burst the heart. 

Thank you for reading this. 

Thank you for being a part of this.

Thank you for everything you've done. 

Thank you. 

Novem-bear with me while I explain what myelocites are

Phin has been incredibly busy. Both of his sisters are performing in shows at the Savannah Children's Theatre and with a whole lot of enthusiasm he said: "I get to GO this time!?!" when we walked him toward the entrance. I think he liked Annie Kids, but may have actually enjoyed the pre-show watching the popcorn pop even more.

Phin on popcorn patrol

Excited to watch Obelia in Annie Kids

Phin had his third outpatient/off treatment clinic visit this past week and he was truly a rock star. We learned that he has gained six pounds since August and has grown a quarter of an inch. His oncologist referred to it as "catching up," which he said happens frequently in AML patients. Despite hating to have his blood drawn, he explained to the nurse how he wanted it done ("Count down from three to one, then go") and even though the tears came before the needle punctured his little arm, he kept himself perfectly still and wailed as still as a statue. He had selected a unicorn with a belly that unzips to reveal shiny, metallic unicorn babies inside. I ordered it from Amazon and it waited until this clinic visit to finally break free from the package it came in just as the needle was removed from his arm. It may have been the fastest recovery we've seen yet!

Reunited with Henry at the clinic

Phin, his Mama Unicorn and her babies

The blood work didn't pop up in the MyChart app as quickly as usual so by the time we received the information that his levels had all dropped (just a little and still well within the normal range), we couldn't do much but wait and remind ourselves that fluctuation is normal. The CBC is a snapshot of health at that very moment and not a definitive picture. Phin had been cushioned from every and any outside viruses from March until August. Even from August until October, when he returned to school, he'd been largely sheltered from ailment...but once he returned to the classroom, we knew all bets were off. He has since had the upper respiratory virus we wrote about here and cold or allergy symptoms in varying degrees of severity on and off for weeks. His eosinophils have been elevated since discharge, which directly correlates with the allergies he's been battling. And these were the explanations we were given when we spoke to oncology the next day about the .9% myelocyte that appeared in his blood work.

A myelocyte is an immature neutrophil cell that is typically found in the bone marrow, not in the blood. The last time I noticed any number of myelocytes in Phin's blood work was back in April when he was first being treated for AML. I'm not a medical expert and I only have a cursory understanding of how this works, but bear with me as I try to explain why this matters.

The life cycle of a neutrophil begins in the bone marrow with myeloblasts that, in turn, progress in the following stages until becoming neutrophils and entering the peripheral blood that courses through our body.

Image from Labpedia.net

Myelocytes don't typically make it into the blood stream since they've not fully matured. When Phin was diagnosed with AML, you may recall, he had 30% myeloblasts in his CBC. Let's say they took about 115 blood cells at diagnosis. At least 34 of the cells they collected were myeloblasts--the most immature of the neutrophil life cycle. Those blasts are and have been at zero since Phin's first round of chemotherapy. Now, three months following his discharge, out of 115 blood cells, one of them was a myelocyte. It's not a blast. It can happen with inflammation and sickness that a myelocyte finds its way into the bloodstream rather than completing its progression into a neutrophil. It has happened (now that I've gone back and reexamined all of the labs ever drawn on our son) that a metamyelocyte once appeared in Phin's blood following or between treatments. It didn't amount to anything more. Knowing all of the above is very sobering, despite all of the reassurance we've been given (which I am, of course, grateful for; I would be a lot more anxious without it). So if you catch me in public looking anxious, worried or distant; if I seem dismissive, oblivious or lost any time in the next 21 days, just know that this is the reason why.

One of the highlights of our monthly clinic visits is stopping in to see our favorite nurses and Child Life friends. When Phin returns, he runs laps around the special unit, helps himself to a spot at a computer, engages in hide-n-seek, and gives so many hugs. This time, though, he discovered he could make a paper airplane and actually send it through a tube to another unit on the floor, then run wildly to the unit to retrieve it, and, hopefully, beat it to its destination. 

Hugs

Sending his plane to another unit

And just so all his nurses know, there is never a time we pass the hospital on the Truman that Phin doesn't wave and yell out: "Hi, hospital! Hi, nurses!" He tells me that you are his "favorite community helpers." The whole Michael family agrees!

Checking things out with his nurses

Keep those prayers, good thoughts, juju, vibes and whatever other goodness you can send Phin's way coming. These next twenty-one days are sure to feel like an eternity. Phin lives each day with reckless abandon, enthusiasm, gusto and vitality from the moment his eyes open until we coax him to sleep at night, and, honestly, we wouldn't have it any other way.