April Showers

April has been a month that saw the return of holiday traditions and the continual effort to transpose new memories over old ones. 

We spent Easter in Charlotte with my (Neesha here!) brother Kiran and cousin Sri. Many Easters over the years have been spent at this heavenly bachelor pad to our north where “the uncles” delight their nieces and nephews with a hundred (almost, some years) egg hunt in the backyard, a brunch with a menu of their choosing and s’mores every evening. This year, we celebrated Obelia’s birthday by seeing a touring production of Aladdin ahead of the Easter festivities, as well, and got hooked on the show Ted Lasso. 

Phin and I had a simultaneous spring break the week after Easter, so we took an impromptu trip down to the Jacksonville Zoo where we spent the hours from 9:40 a.m. to 4:40 p.m. exploring every inch of the zoo as if we’d never been there before when, really, the amount of times we’ve gone are uncountable. I intricately documented this trip through photos and sent them to Dustin along the way. 

You may remember the last time Phin visited the zoo was with Dustin mere days before his AML diagnosis. This is one of the most painful memories for us to think

back on from last year. When we map out Phin’s progression of symptoms this and a birthday party three days before his admission are the most telling ones: fatigue, lack of appetite, pallor, increased whininess…they’d come to a head and even though he wanted to enjoy—and did, as much as he was able—his experiences, the cancer had caused too much discomfort for him to really love the time he had there. Dustin remembers carrying Phin through most of the zoo, getting him a snow cone he never ate. But this year he ran through most of the zoo, ate everything I handed him as he went, only stopping three times: once to ride the train, once to eat a full lunch and once more to sit in the water at the splash pad (if that even counts since he spent a whole hour playing in the water there, too). The photos worked like a salve over the painful, guilt-ridden memories from last year. In time, I believe, there will barely be a metaphorical scar where last year’s memory resides.

April has been a month that brought us insurmountable joy in every moment we have our family at home living a prototypical “normal” life. It has been a month of continued gratefulness.

But April has also been a month of loss. Cancer claimed the lives of two people we loved—our neighbor Tim and a three-year-old patient, Ace, who was sometimes inpatient with us while Phin went through treatment.

Tim was diagnosed with cancer about four months before Phin. When he heard about Phin’s diagnosis he was angry alongside so many of us, but celebrated his victories as if they were his own. I vividly recall Tim passing by our house one rare day between treatments when Phin was home and outside in the front yard playing. “It’s so good to see him running and playing. Kicking cancer’s ass,” he’d said, as if Phin’s fight were truly his, too. Tim had the most incredible spirit of generosity—buying our girls out of Girl Scout cookies and taking orders from his whole office to increase their sales. And the most beautiful flowers cascading down the second story balcony of his porch. There is not a resident in our neighborhood who won’t miss him.

We met Ace during one of Phin’s month-long admissions. When he wasn’t feeling well, Ace traveled in a wagon, but when he was feeling well, Ace traveled in his dancing shoes, often stopping in the middle of the hall to get down and, boy, could this little cutie get down. Phin always wanted to play with Ace or get his attention with some crazy antic so he could hear him giggle. When he’d arrive back at the hospital for an admission he’d say “Do you think Ace is here, too?” Often, they’d have a dance party at the nurse’s station to whatever music an obliging nurse would put on. Phin loved Ace. It was impossible not to love Ace. It is impossible to imagine him gone.

Ace and Phin at the Camp Sunshine Christmas party November 20, 2022.

We’ve talked to Phin about these losses—gently and delicately. He remembers Mr. Tim and
following around Mr. Tim’s dog one afternoon when we swung by to help with something. He remembers Ace and the snowball party, and dancing, and when I told him Ace had gone to heaven now he said,
“He was just a baby.” 

Here is a link to the GoFundMe page Ace's aunt set up to help his family cover funeral costs.

April has been a month of showers.

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.

Phebruary Update

Finally an easy title! It's like I didn't even have to try on that one.

Anyway, hey there, Phin phans! Dustin here with a quick check-in for February. Let’s get it. 

Medical Updates

Phin’s latest clinic visit was a big one for several reasons. First, it was his six-month checkup after he left the hospital–a kind of milestone in itself. The oncologist who spoke to us at the visit told us that everything looks great, that his numbers are awesome, and that at this point Phin basically has a normal-functioning immune system again. Hooray! 

That’s not to say … actually, no. I’m just going to leave it at “Hooray!” It’s a win. 

Another reason this was a big one is that Phin can now graduate to every-other-month clinic visits instead of every month. 

“We’re confident, based on what we’re seeing, that it’s safe to see him a little less often now,” the oncologist said, explaining that Phin will come every sixty days for a while, and if his numbers continue to look good, he will eventually move to a clinic visit every six months, and, then, hopefully, one per year. 

This clinic visit also signaled the end of his weekly doses of antibiotics–one of the last remaining medical vestiges from his in-patient days at the children’s hospital. I can report that Phin was happy to say goodbye to that.  

The oncologist also tried to talk to me about the immediate post-chemo period Phin just left behind–the first six months after treatment–and specifically about what that period had to do with the risk level that was assigned to Phin’s based on his leukemia type and all of the genetics associated with it. This quiet chat went down moments after Phin got the needle for his blood draw, so he was in full angry Hulk mode while I was trying to learn this important information. Essentially, the doctor reminded me that Phin was diagnosed as “low-risk,” which has nothing to do with the lethality of the cancer but instead indicates how likely the cancer is to return assuming that the initial chemo inductions wiped it out in the first place. 

“The ‘low-risk’ is about relapse,” he said, “as in, if we hit this cancer with a bunch of chemo and it goes away, how likely is it to come back? Phin’s type is less likely to do that. You should feel a little relief today because he's six months out, and if it were going to come back, it was more likely to do that during the first six months after he stopped getting treatment.” 

Phin On the Daily

Phin got his first post-”haircut party” haircut, and he cleans up kind of nicely! He's also much more fearless about getting a haircut than he used to be. He's been through kind of a lot since his last barber experience, back when he was a preschooler. This one wasn't bad, but not as good as Mr. Nate from Child Life, though.

He got to travel with his fam to see his cousins in Florida for two of their birthday parties. He liked painting pottery at his cousin Benny's party and splashing around in the pool at his cousin Caroline's party. Always good to see this crew get back together.

He got to be student of the week for his class. He also got to have Grandparents' Day there. This photo is actually from that day, taken by Neesha's mom, who made a special trip to be there for him.

He was happy that he got to see his big buddy Joseph sign to play for Georgia Tech next year. We're all proud of you, Joseph! Way to go!

And he got to do a bunch of playing and running around with his sisters and friends.

This next thing, Phin didn't so much do, but he was kind of a part of it nonetheless.

At the end of the month was Catie's Gathering, a gala to support CURE Childhood Cancer and all the important work they do. Beverly Rousch aka our lifeline through much of this past year--the beacon that shined our way through those first difficult weeks, especially, and then continued to guide as all the way through until the end--of Phin's treatment, hosted a table for her son Seth and her honorary nephew Phin this year. The Birches (Neesha's best neighbor friends) did a Lady Gaga-themed table that did not disappoint. It's hard to overstate how much CURE did for our family while Phin was in the hospital. They are phenomenal. In addition to the many ways they help families locally in our city and state, they fund significant portions of research for childhood cancer--research that helps literally cure our children, a dear friend's child--a schoolmate of Phin's, specifically, who was diagnosed with a brain tumor mere months after Phin's diagnosis.

I wasn't at the event, but Neesha did send me a link to a video slideshow that was shown there. We know a lot of the kids who were featured in that slideshow. The title said "We fight in honor of" for the kids who are still undergoing treatment or are in remission. It said "We fight in memory of" for the kids who have moved beyond the power of this disease.

Phin greets 2023, depheats Covid-19

Hey there, Phin phans! Dustin here with a quick check-in. Let's get it! 

A common lament of parents of childhood cancer survivors–and maybe for all those who live with trauma–is that we must endlessly pass these milestones like riders trapped on a merry-go-round, and while we fixate on them, the rest of the world dissolves into nothing but a blur of motion and color. 

"We are approaching the one-year mark," a friend messages me regarding her daughter's illness. "I still get teary eyed."

Perhaps if we could re-order Creation, we might trade this cyclical course for a more linear one, maybe with an Earth that rotates on its axis but doesn't revolve around the sun, so that the race would become point to point instead of lap after lap after lap. An infinite line of days, one after the next, like the beads on our son’s cancer string–an never ending thread stretching on forever–but no more years. No more wheel of grim anniversaries. No more bundling up against the gray winters of observance. No more reliving. 

The easier thing might just be to cure this insufferable disease. But, should we fail in that, may we find the power to reshape the cosmos to escape the reminders of our suffering.

Here's another year --a small thing among the stars yet memories loom

Medical Updates
Boring bloodwork at the January clinic visit! Everything popped in the normal range for once. A huge relief!

Aside from that report, Phin's rebooted immune system really earned its keep this month. He caught Covid in early January–something we'd tried hard to prevent. He had a good run. (So did I.) This time around, everyone here got it except for Av, and while it took Neesha and me out of commission for a couple of days (mercifully, not at the same time), it barely slowed Phin down at all. A low fever. A sniffle. He was back at full strength by the time Neesha, Obi, or I even felt bad enough to test...which of course became its own challenge. (Phin's has more energy when he's at 10% than I do when I'm at full strength.) 

Then, once the Covid cloud lifted, some other unidentified respiratory virus arrived and wormed its way through our ranks, this one taking up residence in Obi's lungs and necessitating a late-night ER visit for her.  

With that sickness, just like with Covid, Phin sailed over the pothole while his sisters bottomed out in it. As unpleasant as it was, it's kind of nice now that the kids getting sick is just miserable for a change and not catastrophic. Or at least, in Obi's case, serious, but still pretty run-of-the-mill and manageable. Obi went to the pediatrician today to follow up after her ER visit, got another steroid dose and another breathing treatment, and is resting and taking it easy. Like sick kiddos do.

Phin On the Daily 
One day that Phin was really looking forward to was his kindergarten class's celebration of 100 days of school. Students in the lower grades get to dress up like they're 100 years old. For those who haven't been in grade school for a while, it's why you may have noticed tons of photos of your friends' kids cosplaying as senior citizens peppering your social media feeds each January.

(Also for those who haven't been in grade school for a while, I've got news for you about the number of oceans there are.) 

Anyway, even though Phin only got to be present for about 55 of those first 100 days (he wasn't cleared to return to school until early October), he still got in on the action. As you can see, his old man game is strong. 

Behold the dream of my heart–of most parents' hearts, I think...that we would get to see them transformed into a silly old person version of the child we knew, worn and bent by the weight of all the time we fought to give them, but somehow, underneath the frumpy clothes and wrinkles, still the same little kid we remember.

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.      

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.