Childhood Cancer Postcards: The Haunted Rooms

Phin in the hallway of the unit in April, 2022

Lights that flicker on and off, machines that reset unexpectedly, and alarms that sound at random. 

These occurrences, which we experienced while Phin was admitted, are apparently common in hospitals. Which is the likelier cause--the accumulation of many medical devices plugged in close together, each drawing current from the hospital grid and creating an electromagnetic field, or the presence of a supernatural being?

Opinions vary. 

One of Phin's nurses who has since moved on (to another hospital, not from the Earth) told me, in hushed tones, that "the ghost" was encountered most frequently in the room typically assigned to Phin. This nurse also recalled some of the strange happenings attributed to the presence of this spirit: malfunctioning equipment, tripped sensors on medical devices, the room's automatic paper towel dispenser activating without warning. I confirmed that we had also seen some of those things happen during our months-long stay in that room. 

"That would be the ghost," the nurse said, nodding.

From this and other interviews I gleaned that no one has ever actually seen or heard the ghost, as its ability to interact with the physical world appeared to be limited to interfering with electronics. Most of those to whom I spoke stopped short of speculating whose ghost it might be. 

I was grateful for that.   

These kids--the cancer patients staying in the pediatric oncology unit--already find themselves restricted, unable to leave their room, the building, the hospital complex. To think that a child's life would end in that place and that even then their spirit still would not be allowed to leave...

And what of the parents? Imagine an inner voice whispering, No, Mr. __________, you may have buried your child, but their spirit remains right here in their hospital room, where you are no longer allowed to go. You have lost them. Twice. 

We saw and felt things we could not explain while Phin was admitted, it's true. I choose to believe there must be a rational explanation for them. 

The alternative is too ghoulish to bear.   

Childhood Cancer Postcards: The Final Days of Egleston

Phin outside Egleston in August, 2024

The old Egleston Children's Hospital at Emory is a ghost town now, abandoned since patients were transferred to the new Arthur M. Blank Children's Hospital last September. Among the nurses and technicians we met while Phin was there in summer 2024, during what we called "the evacuation stage," rumors swirled about what would become of the sprawling complex. Many told us in no uncertain terms that the place was in bad shape, but as the date of the big move to the new children's hospital approached, we watched it enter a phase of accelerated crumbling. Lights would burn out and stay dark. Elevators would break and nobody would come to fix them. A collective attitude of "abandon ship" prevailed all around.   

But not everywhere.

Outside the cafeteria, there was a large forested area with strong Hundred Acre Woods vibes created by winding walkways meandering beneath looming trees and lush terraces. 

Only once was Phin able to explore this place, although he passed it many times on his way to and from the bone marrow clinic. It happened a week or so before we left for home. Phin, his grandfather, and I stopped for drinks at the cafe inside and decided to check it out before heading back to the Ronald McDonald House. 

What we found there reminded us that wonder can open up even in places that are closing down.

The tiny door Phin noticed was hidden away from everyone except those confined within the children's hospital. Now, it's hidden away from all. 

I'm glad Phin found it when he did.   

Childhood Cancer Postcards: The Healing Garden

Phin in the Healing Garden in June, 2022

Neesha calls it “an oasis.” That’s a good image, a verdant little spot where travelers can rest as they cross the vastness inhospitable, although in this case “inhospitable” and “hospital” might be a bit of an unfortunate conflation. This oasis, the Healing Garden at CHOS, served as a place where Phin could restore himself and play in sunbeams and fresh air during his long inpatient stays for chemo and count recovery. 

Nestled between the towering walls of the children’s hospital, the Heart & Vascular Institute, and the parking garage, the Healing Garden held that same kind of allure that all magical spaces hold. Like an enchanted bookshop at the bottom of the mysterious staircase, or a faerie glade beyond the thicket, or a hidden fortress just over the creek, the Healing Garden gave off a special kind of energy. Imagine the feeling of your best friend from childhood whispering a secret in your ear, only now imagine it as a place. Entering it always felt like crossing into somewhere not everybody knew about, where not everybody could go. 

Two sides of the Healing Garden are formed by the children’s hospital and the enclosed hallways that connects it to the rest of the hospital complex. One side abuts a walkway between the Heart & Vascular Ifnstitute and the parking garage with the helipad. The other side faces the parking lot, and it was from this side that visitors would approach and gather near the fence to see Phin. Standing along this fence at the Healing Garden was the only way for most of Phin’s relatives and friends to see him for the months he was in treatment. 

Plant life lines the perimeter of the Healing Garden--fescue, small bushes, ornamentals, and palms. Here lizards scurry and dragonflies dart between the lower leaves while cardinals and finches flit among the branches. The textures, colors, and smells of the leaves and petals in this hidden corner of the hospital complex remind the children being treated inside of a world that awaits their return. 

An encircling pathway provides a boundary separating the foliage and a play area in the Healing Garden’s center, at which point, anchored in a still sea of poured-in-place playground rubber, floats a sturdy ship. We spent many days aboard this vessel (which Phin usually dubbed “The Molly” after his dearest pediatric oncology nurse), and in our journeys of imagination we visited distant shores in every corner of the globe. Some of my most vivid memories from this time revolve around our daring adventures on that ship. The Healing Garden was the backdrop for all of them. 

Most days, we had the entire place to ourselves. Occasionally, we would arrive as a nurse or technician was finishing their lunch in the quiet tranquility of the picnic benches beneath the sun shade as the gentle breezes rustled the palm fronts and leaves nearby. Sometimes we would discover traces of other kids--names written in sidewalk chalk next to hearts and flowers and rainbows--but we rarely encountered any kids themselves. One time we did find another pediatric cancer patient there, and we became very close to both him and his mom. Actually, I’m still wearing a bracelet with his name on it, right now, typing this, three years later. 

We also found a bird nest with eggs in it a few weeks after we arrived. A few days later, we heard the peeping of baby cardinals. A few weeks after that, we watched the adult cardinals helping the chicks practice flying, calling to them and zipping back and forth as their offspring bounced against the low hospital windows like little fluttering balls of cotton, slid back down, and gradually learned to avoid trying to fly through glass. 

A few days after that, they were gone. 

Phin and I crept quietly toward the nest to check. It was empty, of course. When we looked inside, we saw that the cardinals had woven medical waste between the sticks and twigs. Hard to tell exactly what it was--some kind of translucent plastic, like a patient’s discarded wristband, or the discarded wrapper from a syringe. That stuff became just another part of the baby cardinals’ childhoods, too. I think about that all the time.

Could Be Worse

Hi Phin phans! Dustin here with an update on Phin for August, 2025.

Before we get into it, I just want to thank you all for continuing to follow Phin's progress, even though we're approaching the one-year anniversary of his return home after his bone marrow transplant and subsequent recovery period in Atlanta. For the most part, he's been doing well since then, although we've been through enough by now to know that could change at any time.

Sometimes as I'm writing these updates, I think, Maybe our people would rather we only bother them if something serious is happening? There are plenty of childhood cancer blogs like that--annals of diagnosis and treatment that stop with a triumphant, "Well, we sure are glad that's over! Thanks for following along, everyone!" only to resume, heartbreakingly, with an entry a few months later that begins with the line, "We hoped we'd never have to post here again...." 

In part, I still post these (usually) monthly updates on Phin out of dread of that happening.

Mostly, though, I do it because if you're reading this, there's a really good chance you've been following Phin's progress for a very long time. You've put in emotional labor through keeping tabs on how he's doing, and it hasn't always been easy. Neesha and I both know that. We haven't forgotten. You've invested in our child's life. A lot of this writing is me trying to show you how your investment is doing: This is what he's doing with the time you hoped he would have. 

(And okay fine, some of it's for me, too, because writing helps me work through things and feel better. Sometimes, anyway.)

So thanks for still being here and reading these posts. Like I said, Phin's been doing pretty well lately, other than giving us a few minor frights and his chart presenting some disappointments we've been trying to keep in perspective. I'll get into that below. He's one month into the new school year, and he likes his teacher and his classmates. He's still swimming a lot and practicing taekwondo every day (often by attacking me, Cato-from-Pink Panther-style, when I least expect it), and hanging out watching movies, riding bikes, and playing videogames with his sisters and friends. 

He's really glad to still be home, and glad to still be alive.

Medical Updates

Phin's latest bloodwork found no evidence of disease, and all his counts (white blood cells, red blood cells, platelets) came back in the normal and expected ranges. The Graft vs. Host Disease (GVHD) is still a concern, but something appears to be working (either the medicine or Phin's martial arts stretching/activity) because he is regaining some of the flexibility and range of motion he lost in his elbows and wrists. His oncologist was excited by those results.

One bummer is that the scan of his lungs indicates he probably has very mild asthma. I just want to pause here and say, as a lifelong asthma sufferer who has carried an inhaler in my pocket every day since age six, that it's wild how little bothered I was by the news that Phin might also have asthma now, too. Asthma sucks. I wouldn't wish it on anybody. It's miserable, scary, and dangerous. If Phin had received that diagnosis without having spent half his life fighting leukemia, I probably would have been devastated. Keep in mind, however, all the forms that Neesha and I had to sign that acknowledged the risks required just for Phin to get the medicines to save him from cancer. They always read something like:

Do you understand that this treatment may cause heart failure? Check. 

Liver failure? Check. 

Kidney failure? Check. 

Blindness? Check. 

Paralysis? Check. 

Nerve damage? Check. 

That it might cause new cancers to form, including the very same cancer that it's being administered to treat? Check.

On and on. 

All these risks and compromises we agreed to. The possibility of death versus the absolute certainty of death.

Easy choices, when you think about it. 

Not really, though. 

Neesha texted from the clinic appointment: "The doctor says Phin looks great but maybe has asthma now."

I took a hit off my puffer and thought, Could be worse.

Phin On the Daily

Yesterday, as Phin and I were returning home after his taekwondo class, I mentioned the recent string of fox sightings our neighbors have been reporting. That's all it took to launch us on a fox safari. As we crept down cul de sacs with our windows open in the spitting rain of that early autumn afternoon, I thought of how we used to trek around our subdivision looking for different kinds of mushrooms, or for bats, or birds, or deer, or alligators, or armadillos, or insects. I remembered how we spent mornings during the pandemic looking for animal scat or footprints in the dirt that had been cleared by builders as they prepared to make our community's newest homes. I remember learning all kinds of animal facts with him. So much has happened since then. A lot of things are different now. He's different. I am, too. 

But I guess in some ways, not really. 

One of the things that's changed, since in the past seven years our little neighborhood has seen two of its youngest residents nearly snatched away by leukemia, is that there are a lot of yard flags supporting Cure Childhood Cancer. It's an organization that helped us from the moment Phin entered the hospital, and we love seeing it represented on the lawns of so many of our friends who live near us. We even saw this year's design in front of a few houses on yesterday's fox safari! No foxes sighted (yet), but we did get to see some cool Cure flags!

It's no coincidence that I'm bringing up Cure Childhood Cancer and their fundraiser yard flags now, since September is Childhood Cancer Awareness Month. As you may have guessed, I'm a proponent of childhood cancer awareness. 

And action!

Sometimes when somebody's shaking you down to donate to a cause, it helps to have a specific person in mind and to know how that person got helped by the money people donated. So, this September, if any of the following organizations hit you up, here's what they did for Phin and us. 

American Red Cross	Phin would not have survived without the platelets other blood products collected by the American Red Cross from donors like you and me
Blood Cancer United (formerly Leukemia & Lymphoma Society)	Blood Cancer United helped with expenses during Phin's initial treatment. It also provides major funding for blood cancer research
Camp Sunshine	Phin got to have fun at community-building events, excursions, and outreach programs designed for kids with cancer and their families
Cure Childhood Cancer	Cure delivered thrice-weekly meals the whole time Phin was in the hospital and provided assistance with household bills and travel expenses, as well as counseling services for our whole family. Cure also funds pediatric cancer research
National Bone Marrow Registry (formerly Be the Match)	Phin owes his life to a bone marrow donor who was identified, contacted, and shepherded through the collection process by this global nonprofit
Ronald McDonald House Charities	We stayed with Phin at the Ronald McDonald House in Atlanta for 100 days after he was discharged from the hospital. It became home to us--a safe, warm, clean, secure place to live while he recovered and continued to receive treatment

Thanks, Phin phans. 

Oh! Kind of off the subject, but I still think this is so cool. My brother Coire and I dropped in to visit the taekwondo school when I was back in Missouri earlier this month. It had been a long time since either of us had trained with that crew, and it was our first time seeing the awesome space where they work out these days. 

Anyway, it was great to be back and to spend an evening with them. It felt like being with family. Those. Guys. Go. Hard! We showed Phin the video of the workout. As a budding martial artist himself, he had to admit he was impressed! 

People who follow Lee H. Park Martial Arts - Taekwondo on social media are already long acquainted with their resident Phin Phans swag-adorned practice dummy, Bob, but it was really good to meet him, too. We really appreciate the support, fam. Thank you. 

 

Back to School!

Hi Phin phans! Dustin here with an update on Phin for July. 

And yes, you read that title right--it's back to school time already. Phin and his sister's school starts back up in July. Phin was ready to go! Even though he's had a lot of fun this summer, he couldn't wait to see his classmates and teachers again. At time of writing, he's finishing up his first full week as a second grader. Here's hoping it's a good year for him and for all the kiddos and teachers who are headed back to the classroom in the coming days. 

While Phin seems to be feeling nothing but excitement, Neesha's and my emotions regarding his return to school are a little more complicated. Filling out that First Day of School placard, it's hard not to think about our friends who aren't able to start school this year on the first day because they're currently undergoing treatment. It's hard not to think about the cancer parents who suddenly no longer get to fill out a first day of school placard. It's hard to balance the joy of Phin being currently healthy enough to start school against the guilt that people we love have not been so fortunate, and to complicate that balance with the terror that Phin's progress could reverse again at any moment. We haven't forgotten the times he started the school year in the classroom and ended it in the children's hospital. Or the times we chalked that placard deep into the school year because he hadn't been medically cleared to resume in-person instruction when classes started.  

Counting pre-K and last year's redo of first grade (since he missed so much of the year the first time), this will be Phin's fifth first day of school. Of those four starts, he's never made it from the first day of school to the last day of school. 

We're really hoping that second grade will be the first time. 

Anyway, enough talk of school! Where did the rest of summer go? 

There was the Fourth of July, which he hasn't always gotten to celebrate out in the wild, but this year he did. A bunch of our friends and neighbors (and my cousin Rachel, in town all the way from Missouri!) came over to hang out and watch fireworks. No scorched flesh or blown-off fingers, so even better!

We also got a brief surprise visit from our friend Stephanie, whom we hadn't seen since last summer when she brought us books at the Ronald McDonald House in Atlanta and served food for Cure Childhood Cancer at CHOA. 

Aside from that, Phin spent a good chunk of July on the road, with another trip to Atlanta for a clinic visit, and a big family vacation to NYC. I couldn't go on either of those adventures since I'd signed up to teach this summer, but Neesha made sure to text me plenty of pics so I could see what I was missing out on. He finally got to meet his Aunt Barb! He and his sisters got to see Neesha's hometown and her college on the drive up. Once they arrived in the city, Phin and his mom, sisters, cousins, uncles, aunts, and grandparents toured landmarks and museums, watched Broadway shows, shouted "I'm walkin' here!" indiscriminately, and forged all kinds of memories they'll treasure for the rest of their lives.   

 

Medical Updates
Phin's counts looked good at his monthly clinic checkup at CHOA. His levels of white blood cells, red blood cells, hemoglobin, and platelets were, as his oncologist would say, "stone-cold normal." In fact, according to those labs, this Phin's blood is the most stone-cold normal-looking that it's been since before he was diagnosed with AML in 2022, nearly half his lifetime ago.

I knocked on wood as I typed that just now. Far be it from me to think for one second that we're in the clear. We may never be. I haven't forgotten that. 

Nor have I forgotten that even though Phin's blood might look normal, it's anything but. The amounts of different blood cells swirling through his system might fall within the normal ranges at the moment, but because they were produced by another person's bone marrow, the genetic composition of those blood cells is different from that of the cells in the rest of his body. 

That's why he's still dealing with the graft vs. host disease (GVHD) in his elbows and wrists. For some reason, in those specific places, his body's original cells and the cells produced by his donor's bone marrow are at war. This could have happened pretty much anywhere in Phin's body, according to his oncologist--and it still could--but the wrists and elbows are where the conflict rages right now. 

Some good news, though! When the oncologist checked Phin at the clinic and then compared the results with the photos and notes from the previous clinic visit, he concluded that not only does the GVHD's advance seem like it's stopped for now, Phin appears to be regaining some of his range of motion. 

We aren't sure what's causing this positive outcome, and the science on this subject is a bit spotty. Studies tend to recommend a combination of physical therapy and an exorbitantly expensive kinase inhibitor called Jakafi, which Phin takes twice a day. The physical therapy hasn't started yet due to staffing and scheduling issues, but we've done our best to keep Phin moving and using his arms as much as we can in the hope that'll do the thing physical therapy was supposed to do. He's been swimming and practicing taekwondo with me almost every day, sometimes multiple times per day. It's not clear whether these activities are helping to reduce the GVHD and the resulting joint stiffness, but we intend to have him continue doing them as much as we can just in case.  

Phin On the Daily
After training with me off and on at home, Phin finally joined a martial arts school this summer and started learning taekwondo with other kids as part of a class. 

I have to confess, I was torn about this. My closest friends all know how great an impact taekwondo has had on my life; many of those same friends know this because we trained together. 

A photo of a practice dummy sporting a Phin Phans
t-shirt--one of many gestures of support sent by our
friends at the Lee H. Park Martial Arts Institute in
Jackson, MO. 
  

I think anyone who's practiced martial arts can attest that the people you work out with eventually feel like family to you. That's how it was at the Lee H. Park Martial Arts Institute, the school where I learned taekwondo. Even though I moved away 20 years ago, one of the first people to reach out when I announced that my kid had cancer was the head instructor at that school. She and her students have rallied for Phin through every step of his treatment, remission, relapse, bone marrow transplant--all of it. Their love and support gave me strength and reminded me of the parts of martial arts I think are the most valuable, which all have to do with getting back up when you fall and continuing even when it's really hard--the indomitable spirit parts. 

Anyway, I'm not trying to make this about me here. What I am trying to say is it was difficult for me to put Phin into a martial arts school other than the one where I trained, which is unfortunately hundreds of miles away near my hometown. But while Phin and I really love kicking and punching each other from one end of our house to the next, I finally conceded that he needs the chance to form the kinds of bonds my friends and I formed working out together. and he'll only be able to do that if he's bowing in with other kids. 

So while I'm still getting used to Phin's new martial arts school and the way things are done there, I can report that Phin has no such hesitation. He trains relentlessly, doing walking drills up and down the hallways of our house and insisting that we swing a foam-covered bat at him from all angles so that he can practice blocking for hours. His balance and stamina are both noticeably better than they were just a few weeks ago. His reverse punch stings more, too. 

I will admit that even though Phin's instructor was not my instructor, he is extremely effective at getting Phin to lock in and work--something I am frequently unable to do. He's also a very good martial artist. And he incorporates a little goofiness into his instruction, which...I can relate to. 

Phin's about a month into his training. He gets to attend classes twice per week. 

He would go every day if he could. 

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.