The Cancer Joke

The rain that poured down on Phin's second day of soccer camp as we approached the gazebo where his campmates had gathered to hide from the pelting drops could do absolutely nothing to dampen Phin's spirits. He had long anticipated his return to the pitch, spent his early relapse days watching soccer matches on the T.V. of teams he didn't even recognize, cheering for whichever caught his fancy. At the Ronald McDonald House, kicking a ball around outside was one of the safer activities we could do.

Among a group of peers, Phin is easily one of--if not the--smallest, one of the slowest, one of the least skilled. He is a boy who has been sidelined from sports and stunted of a natural progression of growth since he was four years old. He is newly-turned-eight, but he looks five or six.

This soccer camp is one of the places largely untouched by the knowledge of Phin's cancer. Only one coach knows his history; he's never played with any of these children. It's a whole new league. Despite this, Phin's not shy, discouraged, or intimidated by his size, skill, or the fact he doesn't know anyone. While we wait beneath the gazebo, rain pouring down like a curtain from its roof around us, he eats his snack of veggie straws, kicks his soccer ball back and forth with me. Kids around us start telling jokes. 

"What do you call a rock on stage?"

"A rockstar!"

Everyone giggles. The head coach settles the group, organizes the chaos, starts calling on kids to tell jokes aloud one at a time. 

"Where did the cow go on a date?"

"The moo-vies." 

Giggles.

"Why did the bald guy shave his head?"

"Because he had cancer."

Silence. The boy who told the joke looks around smiling. No one responds. Coach takes over the joke-telling, the rain stops, we wait for the lightning to join it.

In the meantime, the boy who told the Cancer Joke starts walking around to his peers, demanding: "Which would you rather have rabies or cancer?" They answer and he moves onto the next and so on.

My stomach tightens. I glance at Phin. I am calming my thoughts, contemplating how to address this child who is not my own--gently, in a way that will sensitize and stick, but not lecture or shame; what is my best tactic as a teacher? I am not the authority figure here at this camp, just a parent who got trapped by the rain during dropoff, but I feel compelled to speak, to address this wrong that no one here is either comfortable addressing or knows how to address. I am lost in these thoughts, working toward a solution when I hear it...

"Ask me."

Phin stands before him, snack in hand, chomping veggie sticks, wiping their dust on his oversized soccer shirt, half a head shorter than the boy. David and Goliath.

"OK. Which would you rather have: rabies or cancer?"

"Rabies because I've already had cancer--twice--and nothing about it is funny."

"Not uh. You didn't." The boy retorts.

"I did. For three years. I'm a two-time cancer survivor."

Another boy steps in, puts his hand on Phin's head: "It's true. I know him. He is in the other class at my school and he has had cancer. Twice."

The lightning stops; coaches begin calling for kids to head to the pitch. Phin swaps his snack for his ball and water bottle. As he's stuffing his shinguards into his socks, the boy with the Cancer Jokes approaches. 

"Are you his mom?"

I nod.

"Has he really had cancer? For three years?"

I nod again. Choke out a response: "You can't tell now, but Phin hasn't been able to do as much of what you've all been lucky to do these last few years: play soccer, go to school, swim in the summer. This is the first time Phin's been on a soccer field in two years. He spent a lot of the last few years in the hospital. Cancer isn't really something we should make jokes about. It's really not funny to anyone."

It's his turn to nod.

Phin gives me a good-bye hug; I kiss his head, tell him how proud I am of him, and he's gone, running around, kicking his ball onto the field, joining a line, listening to his coach as they work through drills and skills. I watch him for the entirety of the camp, grateful and awe-struck.

Medical Updates

Many of you have been following Phin's Phinstagram or Facebook page where we post stories regularly and try to keep all of you--our friends and family--abreast of what's happening with his recovery so this may not be a surprise to those of you who know, but it did come as quite a surprise to us to learn Phin has graft versus host disease (GVHD) in both elbow and wrist joints. My best explanation of GVHD is that his donor cells view Phin's original cells as foreign and do what all good, healthy, functioning immune systems (thank you, donor!!!) do: attack those cells. For Phin, this means he isn't able to fully straighten his elbows or wrists, something that progressed enough to be noticeable over a few week span of time between his clinic visit here in Savannah in mid-April when he could fully straighten his arms for bloodwork and his visit to the Atlanta clinic in mid-May when he could not. GVHD can affect almost any aspect of Phin, and since he came off of immunosuppressants in November, we've been watching diligently for it: the bumps on his face, the occasional stomach and nausea issues, the feeling of fullness after eating just a few bites of food...but none were verifiable GVHD until now. The crooks in his elbows are mild, but present. He cannot bend his wrists enough to do a pushup. Although there have been many times we thought Phin might be showing some signs of GVHD, none were diagnosable without more invasive testing (which none of his symptoms warranted) until now. While the other symptoms "might" have been GVHD or might not have been GVHD, the issue we're seeing with his elbows and wrists has no other explanation but GVHD, making the diagnosis easier and not invasive at all.

His doctors--who were also surprised to see GVHD at the one-year mark from transplant--started him on a medication called Jakafi, which is an immunosuppressant. This means, he's going to be at greater risk for infections and some of his blood counts will drop. Drops in his bloodwork are triggering for leukemia parents and we've seen a little bit of it happening already, but it should (and seems to have) stopped the progression. Other issues we thought "might" be GVHD seem to be somewhat better, as well, although there's no confirming the extent of the GVHD elsewhere. Phin will also start some virtual PT when the clinic in Atlanta can work out the scheduling.

There is no way to know if this treatment will undo the progression. Only time will tell.

We've been back on a regular every other week schedule to Atlanta while they monitor and have been told to keep a careful watch on any other possible symptoms of GVHD.

Phin on the Daily

As noted, Phin attended his first soccer camp since 2023. He loved it with the exception of the oppressive Savannah heat and humidity. We used tons of cooling rags (thanks for helping us out here, Aunt Seale), poured cold water on him, got him a haircut, and he made it through the week. He wants to go back but only if he can do a shorter one, preferably, with less heat. We're working on it.

He's also been swimming every single day. Even when he had soccer for three hours, he'd come home and swim for another three. He'd been dreaming of swimming again ever since we returned from Atlanta back in September, but had been forbidden until recently. He's taking full advantage.

Phin had his first rebirthday and birthday on May 31 and June 1 of this year. He turned 1 and 8! I intended to write a bigger post about these huge milestones--one year of new blood cells, a whole new blood type, another birthday spent with his birthday twin--Pepop--surrounded by his aunts, and uncles, and cousins, and Great Aunt Patti, and so much joy and celebration, which--if I'm being honest--we have daily. Dear friends and devoted Phin Phans (Shaunna Voss and fam) sent the most incredibly handmade quilts for Phin and all fourteen rooms on the PSU floor where Phin spent eight months of the last three years of his life. We have plans for Phin to deliver them himself (something he loves to do). In celebration of these milestones,  I intended to post this Amazon list of items he thought he might like to collect and gift to the Children's Hospital of Savannah (CHOS), to commemorate his rebirthday and birthday as we've done in years past, but, as ever, with so much joy and gratefulness comes anxiety and heft.

Phin's First Rebirthday Ice Cream Cake

Phin and Pepop celebrate birthdays 8 and 83!

If you've been following Phin's story, then you've been following Aspen's. Aspen followed Phin to transplant seven months after his, but a few months post-transplant, some evidence of disease was detected in her bone marrow. She has since officially relapsed and restarted treatment to knock her cancer back into remission in hopes of getting her to a second transplant by the end of the year--when her body has had a chance to recover and the cancer has been obliterated yet again. She is currently inpatient at CHOS where she and Phin have spent countless months of their lives not knowing what it's like to have a normal childhood free of IV tethers and regimented medicine routines, where they have spent more time with nurses than their own siblings, possibly as much time living in a hospital than in their own homes.

When we initially told Phin that Aspen would have to do the transplant again, he started the Amazon list, knowing these gifts would find their way to her and all the other children who occupy the children's hospital. He and his sisters are always thinking of and asking about her, waiting for the day they will all play together again. "And Mom," he said, "When she beats this, then she'll be a three time cancer survivor." 

Yes, she will.

Phin's First Re-Birthday

Today is Phin’s first re-birth day! 

It's been one year since the bone marrow donated by a complete (and still unknown to us) stranger in Italy was collected, flown by medical courier to Atlanta, hung on an IV pole, and transplanted into our kid to save his life. 

We hope that bone marrow, which replaced his original cancer-ridden bone marrow, changed his blood type, and still lives inside him today, will always be a part of him, cranking out healthy blood cells that will fight off any threats that invade his system or emerge from within it. 

But one thing is clear: This beautiful boy—this son, brother, swimmer, animal advocate, reader, math problem solver, and Minecraft enthusiast—owes the past year he got to remain alive to the selflessness, heroism, and magnanimity of one woman in Italy. 

So this day, we celebrate Phin, but we really celebrate her, and every single person who joined the bone marrow registry to save the lives of people like this wild, wonderful kid of ours.

Phincreasing Stamina

Hi Phin phans! Dustin here. Sorry for bogarting the Phin blog lately. Neesha's long overdue to post an update, but she's got a cold and she's resting at the moment, so you're stuck with me again. Here's what's been happening with Phin this past month. 

I want to start this post where April started, with a class field trip to the UGA Marine Education Center and Aquarium. I got to tag along, just like I did last year. It was a great time. Everybody had fun. Phin and his classmates got to hold live horseshoe crabs and get up close to all sorts of other sea creatures, like the sea horses that live in the aquarium he's inspecting in the photo. 

The last time we were here was a little over a year ago, on the exact same class field trip. Same teacher. Same grade. Same facility. Same fish, probably. Different kids, since his former classmates all advanced, but almost everything else was the same. 

That's what made it hard. 

When we were here last year, I was waiting for a call from the pediatric oncology clinic about his labs. I was trying to be present and engaged for my kid on his field trip, but inside I was gasping for hope and flailing against the undertow of the realization that he'd relapsed and that it was all about to start again, only this time with higher stakes and fewer options. 

He doesn't know it yet, I thought, as he dashed from tank to tank with his friends with me snapping photos because of the sadistic economics of cancer kid moments, where the supply chain of the future has suddenly collapsed and turned abundance into scarcity, but after today, he'll probably never be in class with these kids again. 

And of course, the call came with exactly the results we'd feared. 

Now, here we were again, the following year. At certain moments, either because of the dim light and the shadows it cast through the seawater in the tanks, I begin to feel off-balance, unmoored, adrift in time. It was as if I were seeing double--the shadow of the Phin of last year and the form of the current one. 

Watching him stare at that seahorse tank, with his reflection staring back at him, I imagined the two Phins face to face. 

"Dad, look at this seahorse trying to hide," Phin said. 

I brought my face close to the glass, not to look at the hiding seahorse, but to reassure to the Phin from year ago, who had just relapsed. And to reassure the version of myself standing next to him, underwater, sinking, afraid. 

And to reassure myself, the current version. As I stood next to Phin, staring at our reflections, I reminded myself that despite the eerie similarities, there was something different now. Small, hidden, but vitally important, the bone marrow he received from his donor was even at that very moment churning out healthy cells into his bloodstream, making it the only difference that really mattered.  

I took one last look at our pale reflections staring back at us through the aquarium glass, the versions of us I imagined from last year.  

"It's going to be so hard," I wanted to tell them, "so, so hard. But don't give up, okay? You're both going to make it back here."

I'd be lying if I said I didn't wish they saw us, our pale reflections from the past. What I would have given for them to have seen us standing on the other side. 

What I would't give to have helped them be less afraid. 

Medical Updates
Phin's counts looked good when he went to the clinic here in Savannah in the middle of the month. He'll be headed back to Atlanta for clinic in the middle of May. His CHOA team is confident enough in his progress to hand off some of his care and alternate our Atlanta visits to every-other-month now, which we interpret as a positive development.  

At clinic, he saw his OG nurse heroes Franki, Amanda, Autumn, Erinn, and Molly (via Facetime). He saw Dr. P., who's been with him since the beginning. 

He also got to play with Aspen. 

When friends ask us about Phin, the question they follow with is always, "And how's Aspen?" 

We hope to make a longer update about her in the coming days. Until then, please keep her and her family in your thoughts. 

Seeing them play together again brought my heart such joy...and such sorrow. I'll quote from the beautifully written update Aspen's mom posted from that visit:

"There was one point, just before we left, Phin said, 'Hey Aspen, how long have you had your cancer?' She shrugged and he said, 'Oh, I have had mine for 3 years.' This is their life. These appointments are their norm and these are the conversations they are having. While it will always be a part of them, I know there will be a day that they are running around outside talking about the soccer game, or naming their stuffed animals. It will come." 

Phin On the Daily
April was a busy month for our guy.

From field trips to field day, to Easter egg hunts (three of them, by my count!), to birthday parties, a showing of the Minecraft movie, a beach day, trips to Charlotte and Hilton Head, his sister's soccer games and an art show and a chilly dip in the pool, Phin has re-entered the world. Now that his stamina is higher, he's been extending his time at school from half-days to full-days.

He's living with the fierceness and vigor of a kid with almost fully restored energy who has been unleashed after many months of restrictions and confinement, coupled with the awareness of a kid who knows it can all change in an instant.  

 

Three Years In

Hi Phin phans! 

Phin visiting some of his OG nurses at Children's Hospital
 on the third anniversary of his leukemia diagnosis 

Let me try to be sunny for a change. 

It’s Dustin, by the way, writing on the third anniversary of Phin’s admittance to the children’s hospital for leukemia. We have already told the story of that day many times. We’ll probably tell it many more. I guess that’s what happens when you get blown apart. You endlessly tell the story of how you got that way.

For today, though, let me tell you about what’s going well with this boy, who, if you’re reading this, there’s a very good chance you’ve supported, prayed for, cared for, thought about, and helped. 

As of his last clinic checkup, Phin’s counts look good! His body is making plenty of the kinds of blood cells it needs–platelets, white blood cells, red blood cells, hemoglobin…

…and none of the things he doesn’t need like blast cells that would indicate that the cancer has returned. 

The donor marrow that he received through bone marrow transplant last year is a part of him now. From what we can tell, it is doing exactly what it was supposed to do, and it completely eradicated any trace of his original bone marrow as well as the leukemia that was hiding in it. From what we can tell. 

He’s back in school half days and is gradually building stamina toward staying for full days. Assessments so far show that he retained nearly all of the skills and knowledge from the 10 months he was out, so when he went back this winter he was able to pick up right about where he left off when he relapsed last February.

He’s cleared to start getting revaccinated (the BMT wiped out the antibodies from his original immunizations), and although he can’t get live-virus shots just yet, his team thinks his immune system is robust enough for the rest, and he’ll go in for some of those in the coming weeks.

Since he re-entered the world after BMT, he’s gotten sick A LOT. Just yesterday he finally shook some unidentified bug that had given him a sore throat all week, and that was only the latest in a long parade of minor illnesses that has marched through him this winter. Remember, he has the immune system of a newborn again, one that’s meeting every pathogen that gets into him for the very first time. The good news is, when he gets sick, he gets better. 

On a field trip to Oatland Island Wildlife Center with his class

His mental health seems good. He’s looking forward to things, especially his “rebirthday” (the day he received his donor’s bone marrow) and his birthday (uncannily, it’s the very next day, and he was technically still getting his BMT on his actual birthday). Phin is counting down the days until both of these events and has already started making elaborate plans for each. He’s not in soccer yet, but he still wants to play. He likes being around friends, generally wants to get out and do stuff, and is often the first one ready to go. 

He’s concerned about his friends and asks about them often, particularly Aspen, who is supposed to come home this week after her own BMT and 100 days of observation and recovery. 

He still laughs in his sleep, just like he always has.

In most of the important ways, Phin is still the same kid who shuffled into the ER of the Children's Hospital all pale and covered with bruises three years ago today. He's got a lot more scars, a few fewer teeth, a whole different blood type, and, hopefully, no leukemia. Once he got settled in his room on that first admission, he refused to take off his school uniform shirt for almost a week, such was his resolve to return to the life he loved. In the years since, with everything he's been through, many parts of that life changed. But looking back at these three years, remembering the long swaths of exquisite anguish and fathomless despair, and the many fleeting glimpses of insane hope, dizzying gratitude and ecstatic, transcendent joy, there are two really great things that haven't changed at all.

He's still here.

You're still here.

Thank you, Phin phans. Whatever happens next, you can rest assured we'll keep the updates coming. Thanks for being at our side this whole time.

Medical Updates I feel like I already covered this above when I mentioned Phin's doing well as of his last clinic appointment, so here's a timeline of what's happened so far:

Phin On the Daily 

Phin discovers the sloth exhibit

The last place we took Phin before he was diagnosed with leukemia in 2022 was the Jacksonville Zoo. Animal fanatic that he is, he loved that trip. He talked about it the whole time he was in treatment. He's been back once or twice since then, but we went again this month. They have sloths there now. Phin was thrilled to meet them. We purchased the year-long pass--an act of optimism and courage that seems like a good thing to include to match the sunny theme of this entry, and also a good note to end it on. 

Phorecast: Sunny and Buggy

Hi Phin phans! Dustin here with an update on Phin for February, 2025. Let's go! 

We've mentioned it before, but it bears repeating that spring has become an emotionally difficult season for our family. In it, we mark the anniversaries of Phin's original AML diagnosis (March 2022) and his relapse (February 2024). Because of these two grim milestones, spring has begun to shed some of its previous symbolism for us (warmth, light, rebirth) and to take on more ominous ones. Last week, as I presented "The Rite of Spring" segment of Fantasia for analysis to my dinosaur-themed composition and rhetoric course, I watched as the shot returned again and again to the sun, with its relentless insistence, its indifference to the abject suffering below, its refusal to allow life to be restored without a sacrifice. After class, as I expanded the photos from Phin's class field trip to report the weather at the local television station, I could almost hear Stravinsky's dissonant refrain echoing softly in the background. 

Other than swarms of anxieties, springtime here in Savannah also brings for us swarms of bugs--mosquitoes and biting gnats the locals call "no-see-ums." We have begun applying the same approach to both: Don't stop moving. 

That sums up how spring has gone so far--maintaining a state of constant motion so that neither insect nor insecurity can land on us. Activities. Walks. Playing ball out in the yard. Movies. His sisters' performances. Events with our favorite cancer nonprofits. A hockey game. Keeping busy. Staying on the go. Hustling from place to place and moment to moment without pausing, like a runner plowing through a hovering bug cloud. We wipe out whatever gets stuck in our eyes without slowing down. We have to. If we slow down, that's when the rest close in.   

Medical Updates 
Phin has been cleared to space his clinic appointments out to one every three weeks. Not only that, he also gets to alternate clinic visits at CHOA with the children's hospital here at home. During his first clinic appointment in Savannah several weeks ago, we got to check out the brand new clinic building that we watched construction crews and cranes assembling from his hospital room window last spring. It's super nice, but Phin's favorite part by far was getting to hang out with his O.G. team again. 

Phin's counts looked good at that visit (Feb. 10). He goes to Atlanta so that his CHOA team can check him over this coming week, so fingers crossed for that. His stamina is still recovering, but he's finally gaining some pounds and his complexion is looking a little less ghostly and wan. His BMT team cleared him to play soccer in the coming weeks, and we're all excited about that.   

Phin On the Daily
Sometimes, lately, when we talk to Phin, it's like he's just woken up from a dream. 

"I was playing soccer," Phin has said, on several occasions, apropos of nothing. "I was goalie. You guys were mad at me because I was tired." 

Phin is referring to an incident from three years ago, one we hate to discuss because it is too painful. It was early March. Phin was dying. We didn't know that yet. He stood in the goal in his shin guards and uniform, listing slightly from side to side like a little sailboat. Ball after ball flew past. Phin only swayed and whimpered. What is wrong with him? we scowled. He was dying. We didn't know. 

Phin in March, 2022

"How long did I have cancer?" Phin asks.

We tell him he has been dealing with cancer for almost half his life. 

"You had cancer when you were four," we say, "and you beat it. Then, it came back when you were six, and you beat it again." 

"Now, I'm seven," Phin says. 

"You're seven," we assure him. "On your next birthday, you'll turn eight." 

"Do I have cancer now?"

We always pause. Pray. Gather our strength. 

"No," we say. Phin smiles.  

Often at this point the conversation veers into territory where all of our answers feel like speculative fiction writing exercises: "What would happen if...?" or "In the future, will I be...?" Neesha and I already spend our waking moments mentally drafting and redrafting manuscripts about these possible worlds in which we are all characters. We tend to share the sunnier versions with Phin. 

But lately, Phin has expressed more curiosity about what has been rather than what could be. He wants to know how old he was when various things happened--the time he was in the Child Life room and his ball disappeared, or the day he got his first CVL taken out. He's asking about the things he's seen and done on and off treatment and the litany of medical procedures he's undergone through all of it, but also these events' relation to one another in time: "How many days were between the time when we played Uno with the nurses at night and the time when we moved back home?" and "How long after we got back from India until I went back to the hospital?" That kind of thing. Fortunately, some of that history is recorded here. Much more of it is written down in my journals and notes. 

It's like he's finally emerging from a yearlong Groundhog Day-like loop of isolation and iPad obsession, a sanctuary he built for himself in his mind. In a way, he is waking up from a dream--one he forced himself to have because his reality was too frightening and awful. 

Imagine what it must be like for him. He was four years old, standing on a soccer field, feeling so, so tired. He blinked his eyes. Suddenly, he's thinking of playing soccer again, only three years have passed. He's roughly the same size (thanks to the chemo), but he's almost twice as old. How did that happen?

So, we believe, Phin is constructing a timeline--placing the events of his life in sequence, fixing the order, and asking questions. 

But really, underneath all of Phin's questions is one fundamental question:

"What did I miss?"

Snow Day!

 

Phin was only half a year old the last time our coastal Georgia town saw snow,
and few could remember a time it had snowed before then. When Phin told us
at Christmas that what he wanted most was to see snow, we assumed we'd have
to plan some big trip to the mountains at an indeterminate future time, provided
that he was well enough to go. Then, suddenly, a winter storm arrived and dumped
 a slick layer of sleet and a couple inches of powder overnight. Phin's wish to play
 in the snow came true. Here, he and his sisters explore the frozen neighborhood
 before their snow day online schoolwork begins.   

So many things in life attack from behind, like a little
brother with a snowball. You're minding your own

business, living your life, and next thing you know...

...splat!

What captivates Phin and his sisters here are
the icicles clinging like spiky teeth to the bottom 
of the sign, highlighting the novelty of the
naturally occurring ice for these kids through an
object that was equally novel to us when we first
moved to the area. Not an alligator to be found today!  

At the playground, a snowball disintegrates
in Phin's hands as one of his sisters tries an
extra-slippery slide and the other plays it safe.
The sycamore the community planted in Phin's
honor stands in the background, its limbs bare
except for a few tenacious leaves.   

Anticipating Spring

Spring is coming--the season of renewal and rebirth, blossoming flowers and trees, greenness springing
back into our lawns, just waiting to soak in the golden rays of sun. It's the season of jasmine floating  like an aphrodisiac in the air around us, tempting our nostrils to lead us to its origin. Bees buzzing, birds flocking, the geese returning to the lake outside our house where Phin will inevitably shout "The geese are home!" as they honk their arrival, their feet skimming across the shimmering water, their bodies a chorus of shhhhhooooshhhhing into the lake as they come to a rest atop it for the next few months, delighting us with their cackling nighttime honking. Spring is the season of hope and rebirth.

For us, Spring is also the season of trauma. The season Phin was first diagnosed and treated for cancer in 2022, and the season he relapsed in 2024. That first Spring, Phin had begun soccer season--running up and down the field, laughing and kicking, before withering as the season really got started until he could do nothing but stand in the goal, clutching onto the net, halfheartedly trying to block the ball. Soon after, he spent that first Spring in the hospital, hunting Easter eggs, celebrating his sister's First Communion from the inside of the hospital playground, hugging her in her lacy white dress through the iron bars of the newly painted black gate. He spent last Spring in the hospital, too, only this time, unable to attend preparation for his own First Communion--a setback that would deny him his own communion a year later, still hunting Easter eggs in the hallways, watching the newest addition to the Children's Hospital be built in what was once the parking lot, eventually fighting E. Coli before moving onto Atlanta for his bone marrow transplant.

When Spring comes, Dustin and I pull our collars a little tighter against the chill of our anxiety, watch Phin a little closer--are his lymph nodes swollen, are the symptoms he's displaying common for the kind of virus he seems to have caught, is he paler, eating enough, sleeping too much? We inspect his body for bruises or bumps. We wince at parallels: the baby Phin found in the King Cake on Epiphany this year, just as he did in 2022; his request to return to Mathnasium. It has been almost a year since I sat outside Mathnasium in my car, watching him through the window as he bounced up and down in his seat, excitedly earning more tickets toward a giant parrot stuffie he'd been saving for for months. I watched him through tears, holding the phone in my hand having just learned that our fears of his relapse were confirmed despite how healthy he looked, how full of life he was there before me.

If we seem distracted, on edge, snappy, cold, or aloof, just know: Spring is the season of trauma for us.

While the transplant he had is curative in nature, a transplant isn't a guaranteed cure and spring is closing in.

Medical Updates
Phin's liver enzymes continue to improve, leading his medical team to believe it was a viral spike that caused them to rise so drastically.

However, he has also been working through a virus for the last two weeks. The first week started with a sore throat, followed by a fever. The fever seemed to dissipate. He was tested for strep (negative) and we were told not to give him any OTC meds unless it climbed to above 102.5. It did rear up again and brought with it a cough, but never broached the 102.5 degree threshold. After a full week of varied temps, he was finally better, but the cough persists. His bloodwork this Friday (Jan. 17), despite the cough, looked great and Phin was given full clearance to return to school (I'll get back to that part).

His Atlanta team has also suggested weaning us down to once-a-month visits with one visit being in Savannah and then the next being in Atlanta. This would put Phin's first Savannah visit in February--a triggering scenario since he was diagnosed with relapse here in Savannah in February of last year. Dustin says he has prepared his spirit for this, and that he will do that which needs to be done; simultaneously sparing me and gifting me time to get ready to eventually do the same.

Phin on the Daily
Phin made his triumphant return to the ice skating rink this year (he was taking lessons when he relapsed last year; it's also probably where he caught whatever virus he's (hopefully) nearing the end of), AND he got to spend three glorious hours playing with his friends, lovingly referred to in our home as The Playground Six. The Playground Six is the group of friends from school last year who Phin used to play with every day at recess. He'd often come home and tell me about the group and their antics--what they'd played, who agreed to play, who broke off to play something else. One friend has truly been a touchstone for Phin this entire last year--FaceTiming him and playing video games whenever they both were able. I once asked him if he wanted to call other friends to talk with them as well, and he responded "I don't know if you know this, Mama, but not all first graders are good at conversation." We have been grateful for the friend who FaceTimes, plays video games, and offers "great conversation" all year, and are grateful for his mom for setting up the three-hour playdate.

Phin has also been given medical clearance to return to school this week. Yes, you read that correctly: THIS WEEK. As in, the possible Snowmageddon in the Lowcountry Week! His return date will be determined by the weather, but if it's good--he'll be back in the classroom on Tuesday, just in time for the 101st Day Celebration! He noted the irony of this--"It's their one-hundred-and-first day and my FIRST day at the SAME TIME!" He will begin with half days—some mornings, some afternoons—as he builds his stamina back up. He returns armed with a flu vaccination. The rest of his childhood vaccines will be repeated in the coming months.

I would be remiss not to give CHOA's Education Advocate (and hospital teacher), along with Phin's team at Tybee Island Maritime Academy (TIMA) a LOT of credit here for navigating an impossible situation. CHOA is phenomenal. They are practiced, precise, and incredibly organized. They sent medical clearance, suggested re-entry information, and accommodations that made planning for his transition almost like following a blueprint. TIMA--who does not require the same kind of expertise in transitioning medically fragile children back to the classroom--has been equally proficient. One of the most endearing parts of Phin's plan this year has been TIMA's determination to find a way to connect Phin to his new classmates (he will enter back into school as a first grader, which is also where he left off; it is my hope that this decision allows him to enter back in as a high-achieving first grader rather than a struggling second grader) by FaceTiming him twice a week in small groups to establish a social-emotional connection. Special shout out and thanks to the principal, assistant principal, counselor, and--most importantly--his first grade teacher for bending over backwards to include him and make sure he had everything he needed--from an academic, social, and emotional standpoint. 

Winter was beginning to transition to Spring when Phin was abruptly removed last year, and will be preparing for Spring again when he returns. Phin's re-entry doesn't just mark his transition back to school, but his return to his actual classroom with the same teacher who, when asked what supplies I should send when he comes back, responded by telling me: "I have his seat sack on his chair still and a morning journal, supply pouch..." While the underline and bold on the word "still" are mine, with that word emerged a vision of her first grade classroom, his chair untouched through the end of last school year; her classroom dark and emptied out over the summer save for his lone chair with a blue seat sack still heavy with the nubs of Phin's half-used crayons, stale pencils shaved and blunt, once-pink erasers smeared dull by lead--reminders of the unfinished year; I envisioned that same room filling up again in July with bright new faces, unwrapped seat sacks stretched over all the empty chairs, the smell of fresh wax from unused crayons wafting from their boxes, children bustling around the one desk that remained, that empty seat waiting vigilantly almost an entire year for Phin to return and rummage through its pouch yet again.

And this week, he finally will.