The Bell’s Toll

 

Two years ago the other day, August 17, Phin and Aspen rang the Bell. The Bell is traditionally rang to mark the end of treatment, end of cancer, the beginning of a new life as a survivor, the end of one phase of treatment and the start of the next...etc. But the Bell is controversial, too. Some patients never ring the Bell; others ring it again and again. To date, Phin has rung the cancer Bell twice: once on August 17, 2022, when we hoped his battle with cancer had been won; the second time on June 28, 2024, when he was discharged from the Children's Hospital of Atlanta with his new bone marrow engrafted and getting to work.

This image is a conglomeration of posts from August 17, 2022 and August 17, 2023: images of Phin ringing the Bell, of us celebrating his one-year anniversary of ringing that Bell, and of Phin on a field trip with me one year after ringing that Bell where we wandered downtown on a field trip with other first graders who knew nothing of Phin's battle, who knew nothing of his cancer. We were blissful, enjoying his cancer-free life of normalcy where the biggest things we had to worry about on a daily basis were whether he'd mastered his addition facts or knew all his sight words. 

I'd be lying if I said I didn't worry that day two years ago, when Phin and Aspen rang the Bell. In the furthest most reaches of my mind, I dreaded that Bell, how it felt like a temptress of Fates to be ringing it, and walking out those doors. As if Cancer stood like a vapor in the background of those cheering faces and celebratory scraps of fluttering confetti, watching us depart from the Pediatric Specialty Unit where Phin and Aspen had spent most of that year, lurking vengefully by as the doors closed behind us, watching our silhouettes grow smaller in the distance, thinking, "They'll be back."

Cancer doesn't care.

People often say that Cancer is the worst club to join with the best people. This is true. No one will ever understand Childhood Cancer, especially, like those who have walked or are walking through that trauma themselves. We've known people who came before us and people who have come after; people who have fought for months and those who have fought for years. We've heard the cries of infants who couldn't yet walk, screams of toddlers and children; angry protests of teenagers from behind closed hospital doors. We've met desperate parents in communal kitchens where we shared a tissue, bad coffee, and our fears. We've attended Bell-ringings and memorials; we've cried at both.

Today we cry for Leo. 

Eleven-years old, oldest of three siblings, neighbor to Phin on the BMT unit; ALL warrior, and so much more. When Leo moved into the room beside us, his mother and I had hoped one day the boys might play together: Roblox or Minecraft, walk a few laps around the unit, meet up "on the other side" at the Ronald McDonald House but, despite our fervent prayers, these plans will not come to fruition. Leo had fully engrafted. His transplant had worked but cancer treatment is harsh. Chemotherapy, radiation--they wreak havoc on little bodies, overwork and weaken major organs, leave our children fragile and vulnerable. We followed Leo's journey, just a few paces behind Phin, on Instagram, occasionally running into his parents in the hospital kitchen or the Ronald McDonald House, offering each other encouragement as we did. We prayed for Leo every day--every. single. day--right alongside our Phin. Fervently, desperately, just as we do for Phin.

When your child has cancer and you meet another child battling cancer, they become a symbol of hope, a symbol of possibilities; they become another source of empowerment and motivation; they inspire us to draw on reserves we didn’t know we had. When people talk about the strength cancer parents exhibit, it comes from these families, our warrior children who inspire us to forge ahead, these small people who bravely, boldly lead the way forward into that great, terrifying unknown while we trail anxiously behind. Nothing is in our control. Despite the weight of devastation you bear like the heaviest of rocks as you stagger up the hill you would willingly climb forever if it meant not having to lose your child, you offer to shoulder their weight, too, as much as you can, as much as they'll let you, and gladly. You think: we are in this together; we will climb up together; we are not alone. You can't stop yourself from loving them. All of them. Even when you think you have more than enough already, can't hold onto or spare another ounce of love, you love them anyway. 

And you mourn them in equal amounts, with a grief you've never known before and one you never want to know again. A grief that springs up like a well from your soul, burns hot like poison seething from your eyes, unstoppable and devastating in the pickup line as the dismissal bell rings and you await your own smiling 10-year-old daughter bouncing toward you after school. You think: he was 11.

Cancer doesn't care who rings the Bell or doesn't.

As a lifelong rule-follower, a person who thrives on lists and organization and schedules and plans and honoring guidelines to perfection, it's hard for me to accept that Cancer does none of those things, cares nothing of plans or how true to the letter we live our lives. Each day, we give Phin the medicines, encourage him to eat, try to keep his body limber and active in preparation for when he can enjoy his freedom again. Each week, his transplant doctor tells us what a thing of beauty it is when parents do "all the right things"; each week, I think "but Cancer doesn't care." And I worry.

The weight of cancer is heavy. Almost unbearably so. It's so burdensome our girls cannot whisper its name, perk up only when their brother is mentioned to excitedly ask if he's "coming home soon". They do not talk to their friends and confidantes about their brother's battle or their fears. They can barely admit them to themselves. But Phin throws it around like that same reckless abandon of the confetti that rained down on he and Aspen at their Bell-ringing. So much of what he says begins with "When I'm done with cancer."

"When I'm done with cancer, I'll visit all the animal hotels", places you can watch animals roam by your hotel balcony as you lie in bed at night. 

"When I am done with cancer, I will visit Santa Claus at the North Pole, see his reindeer, meet his elves."

"When I am done with cancer, I will get a small black dog like Sundae, only smaller. I will name her Shadow." 

"One day, when I am done with cancer..."

As these days creep quietly forward and the number of days post transplant increases, the heft of concern does not have an inverse reaction for me. It remains, vigilant, as if to say: you won't catch me unprepared this time.

Medical Updates

In just under three weeks, Phin will, hopefully, be coming home. This will mark his 100th day post-bone marrow transplant. No one has actually mentioned or talked about this milestone, but little changes abound. His medical team is trying to wean him off his NG tube. While Phin doesn't get feeds from it any longer, it has become the Charon that ferries his liquid medicines into his belly so he doesn't have to take syringe after syringe of poison-tasting medicines by mouth. They have weaned him off of other medications that were no longer essential. 

A week and a half ago, he spent 15 hours grand total over the course of two separate visits in the ER at CHOA. The first time, we checked for blood clots in his chest since he complained of minor chest pain. While there, he downed three bags of chips and a bottle of sweet tea. He had approximately four tests conducted on him. Three days later, he was back with pain and swelling in his knee, more tests, more chips, more sweet tea. None yielded clear reasons for his discomfort and follow-up appointments cleared him of any further need for follow-up. The highlight for us was no indication of cancer, potentially just mild infections. 

This week, he followed-up with the CHOA Pediatric Dentistry doctor to determine the state of his teeth post-operation last month and to check that any other concerns are stable. They are discussing the removal of 2-3 more baby teeth, though no plans have been made as of yet.

On the home front, Phin's oldest sister Av tested positive for Covid on Friday--the traditional day for Dustin and I to swap each week. For the last month, we have divided our time between Savannah and Atlanta--one parent per grouping of child or children. Our goal has been consistency for all of them. The positive Covid test rendered it impossible for us to swap. I have been quarantining in Savannah for for the last five days. Our Covid patient seems to have turned a corner as of this writing, but cannot return to school until tomorrow--five days after her positive test. Meanwhile, Obelia had Covid symptoms, then lost them, but never tested positive despite five negative Covid tests. Both girls were quarantined to their rooms where, like prisoners, they received their meals and drinks; they each have a designated bathroom. Cancer has taught us how to play it safe. Five Covid tests might seem excessive, but the clock for me to return to Atlanta and swap out with Dustin begins all over again as soon as she tests positive. The sooner she tests positive (if she's going to), the better. 

Days in Atlanta are long. 

But as of this writing, Phin has about twenty of them left.

What happens then? How do we keep Phin safe among the viruses and sicknesses that run rampant in the fall and winter months? With two sisters in-person at school? When can he get vaccines again since the ones he had as a baby are now void with his new bone marrow? When can he safely be in crowds? Will there be another Bell?

Those and many other questions are ones we hope to learn the answers to in the next twenty days.

Please offer prayers and warmth for Leo's family. Even the greatest blanket of love cannot comfort the coldness of grief they are cloaked in.

"Each man's death diminishes me,

For I am involved in mankind.

Therefore, send not to know

For whom the bell tolls.

It tolls for thee."

-John Donne

Phearful Symmetry

When Phin went to his 45-day post-bone marrow transplant checkup recently, his counts were great. The oncologist said that his blood was more or less indistinguishable from the blood of a person who had never had leukemia. Everything in his lab report looked wonderful. 

Everything except for one note very far down the report that indicated the presence of some atypical cells: “large, mononuclear cells with prominent nucleoli and fine chromatin.” 

Neesha and I both heard the same voice when we read those words, like a cold hiss in the darkness.

“Blasts.” 

Blasts are the ill-formed cells leukemia spits into the bloodstream. They are what a physician scans for in order to diagnose a patient with leukemia in the first place. Way back in 2022 when all of this began, when we took a jaundiced, frail, bruise-bespotted Phin to the doctor and then to the ER, it was the presence of blasts that ruled out simple anemia and scrambled the oncology team to assist us. The lab report we received that day also reflected the occurrence of these atypical cells. Now, after all of the chemo and remission and a bone marrow transplant and engraftment, there we were, yet again, with blasts.

I was at the hospital with Phin after his checkup when the lab report appeared. He was sleeping off the anesthesia from his latest bone marrow aspiration procedure. The oncologist sat me down in a private room. I called Neesha and put her on speaker. 

“We think these are recovery blasts,” the oncologist said, “where the new bone marrow is still setting itself up and not all the cells it makes are perfect yet. But there’s a chance it’s the AML again.”

The oncologist explained that when Phin got his bone marrow transplant, they shocked his immune system down to the lowest point it had ever been in order to give the donor marrow a chance to take hold without his existing cells trying to kill it off. But if there were any surviving leukemia cells in Phin at that moment, they could have exploited the weakness in his defenses and reestablished themselves. 

“So the blasts might indicate the bone marrow transplant worked,” the oncologist said, “or they might indicate the cancer’s back.” 

No one said anything for a long time. 

“When will we know?” Neesha's voice crackled through the speaker. 

The oncologist said the bone marrow sample collected from Phin that morning would provide the answers we needed about the blasts, but–and we knew this, having already been through it twice –the sample had to be processed in a lab in a distant state, and it would take days to get the results. 

“Hopefully, we’ll know something by the weekend,” he said. 

That was last week Monday. The oncologist was very kind. He told us to try not to worry. Then he departed to continue his rounds, leaving me to wait in a hospital room with my son and a feeling of infinite smallness from having become aware, in an instant, of two diverging universes, each exactly identical to the other except that in one of them his leukemia has returned. 

Just like when Phin was first diagnosed, and just like when he relapsed, it would be days before word would arrive about which of these two universes we now live in. 

And just like before, Neesha and I did what most cancer parents do, which is to try to buck up our spirits during the day to complete our individual tasks, to smile for the sake of our kids, and to project normalcy, sanity, and calm. Hope for the best and prepare for the worst! Like we’ve always done. While there’s daylight, anyway. But in the forests of the night where insomnia invariably deposits us, we were ensnared by the vines and brambles of what could have been and stalked relentlessly by the terror of what might be. 

Finally, at the end of the week, the oncologist called. I stared at my phone. 

Perhaps, I thought, I could make a new life for myself here in this moment. 

This was, after all, the vestibule of the future. What was stopping me from unrolling my sleeping bag and making this the place where I stayed from now on? And who would blame me? Twice before I’d burst through the door of an oncologist’s call about my son and on the other side found only anguish. I remembered that we’re 0-2 for hearing anything good when a health professional calls to talk to us about blasts.

If I could stay here forever, I thought, both universes could always still be possible, but as soon as I answer this call, one universe will disappear, and we’ll be trapped in the other.    

“Hello?” I heard myself say.

“Good news!” the oncologist said. 

Medical Updates

The large, mononuclear cells with prominent nucleoli and fine chromatin that appeared in Phin’s 45-day post-BMT lab report have been confirmed to be recovery blasts. We didn’t even know that was a thing. We’ll take it, though. 

When we asked about the likelihood that those blasts could have been the product of Phin relapsing again, the oncologist said he’d been cautiously hopeful that that wasn’t the case, but he added that AML isn’t the kind of disease you underestimate. 

Throughout the week as we’ve tried not to panic and to act like the worst thing imaginable wasn’t possibly about to happen to us again, Phin had an additional follow-up appointment, and everything else looks pretty good. He’s a little more than halfway through his 100 days of observation following his transplant now. One of his lines got clogged, but that’s resolved now as well. 

Phin On the Daily

Phin’s had his mom and sisters with him at the Ronald McDonald House for more than a week now. They’ve done crafts, played soccer, had movie nights, and explored some of the parts of the Atlanta area where it’s cool enough and isolated enough for Phin to safely go. His sisters will depart to go back to school when Neesha and I swap out tomorrow. A tearful farewell is expected. 

But sometimes farewells precede reunions. I stopped by Phin's classroom at back-to-school this afternoon, and his teacher is very excited to see him back this year. We don't know when that will be. It certainly won't be when classes start at his school on Monday. It might not even be this fall. 

Nonetheless, Phin's teacher is excited to see him, whenever it is that he is able to return. 

The Storm

Phin and Aspen, Christmas 2023

Back in February, when we knew that Phin had relapsed, I looked for solace anywhere I might find some. One of the places I turned to for comfort was a dichotomy of sorts and well outside of my field of expertise: statistics. While I was never a true scholar in math and had been told time and time again that each case is different, the statistics seemed to paint a clear, unbiased picture of what we may face on our journey. Statistics wouldn't sugarcoat the grim possibilities. They'd "give it to me straight" in ways that people--complete with our compassion, love, and empathy--might not. They initially provided hope (for Phin's specific genetics, only about 20% of patients relapse after complete remission) and, also, fear (statistics had always suggested a 25-50% overall relapse rate for pediatric AML). I liked to believe that some of those numbers were big enough for Phin to fall into them; after all, someone had help make up that other percentage--the side we wanted to be on.

After the initial shock and devastation of his relapse wore off, I looked to our friends whose children had not relapsed, our friends who'd fallen into the percentages I'd hoped Phin had been in. I reasoned that we could muster up the strength to fight this battle again, to trudge through the trenches of trauma, despite the relentless torrents barraging down on us, holding onto whatever support and strength we could find, if it meant the others who'd walked beside us could stay put safely on the other side, waiting to help us back out when we finally returned to the light.

 

And how they've cheered at each victory, cried at each blow, prayed at every uncertainty. I've said in many ways and many times that throughout this stormy season of heartbreak, we've been able to keep our heads high and our walk steady, our spirits and lives afloat because of the endless, gentle sea of love and support our village has rocked us on, sheltering us from so many hard things, like so many steadying hands holding fast to our boat despite the storm battering us around.

Phin and Aspen, Pediatric Specialty Unit, 2022

If you followed Phin's story through the first part of his journey beginning in March 2022 when he was just four years old, then you know another one of the sources I sought solace: one of his--and our--closest friends Aspen Shaw and her family. Aspen had been diagnosed with AML a mere two months before Phin so when we arrived, full of fear and overwhelmed by the monstrous enemy we found ourselves facing, Brandi and Michael enveloped us in hope, certainty that despite the enormity of the Goliath before us, our 3 and 4 year old Davids would overcome. During those dark early days after Phin's initial diagnosis and again when he relapsed, I could hear Brandi's words echo in my mind: "One day this will all just be a blip in the story of their lives". I found comfort, renewed energy in her optimistic perspective that each new cycle took us closer to the end. 

And then, after months of isolation, we finally reached the end, at opposite corners of the Pediatric Special Unit where Phin and Aspen counted down to the day they would ring the bell--together. One right after the next, they walked alongside their Beads of Courage, a chronologically organized chain of beads Brandi and I had helped them string together that told the story of their fight against cancer. The entire unit celebrated--residents and attending doctors, nurses, environmental services, nutritionists, other patients, family and friends. How the confetti showered down! The world--all of you--celebrated with us. Tears of joy and relief, our babies came home to their waiting families and we waded quietly back into our lives--gratefully, cautiously. 

Phin and Aspen after they rang the bell, Aug. 17, 2022

For the last two years, we've relished in their health, each new milestone, each clean complete blood count (CBC). In some way, during the terrible season we'd weathered together, Phin and Aspen had become all of ours--the Michaels, the Shaws--united. It was hard to envision any medical victory without both of them winning together, hard to even say one's name without the other in the context of clinic or cancer. With each visit to the hospital, we'd text to update one another. When Phin relapsed, the Shaws were some of the first to know. They mourned, prayed desperately, cried along with us. Our pain has been theirs. Despite this, we knew--and were glad--that this part of Phin's journey we'd have to go alone. The path has been lonelier, harder this time, but the Shaws have been here cheering, waiting to help pull us back into the light behind the storm.

Phin and Aspen, Dec. 2023

Two weeks ago, Obelia came to Atlanta to be with Phin, two of our three children had reunited, and it really felt like the storm around us had begun to subside; we basked in our children's joyous laughter, piercing like rays of sunshine through the darkened clouds. I remembered Phin's words, what seemed like ages ago as we drove away from his school for the last time before he was admitted to the hospital, a tempest raging around us as we crossed the bridge leaving Tybee and his little voice--full of so much hope and innocence saying: "Mama, look! Behind the storm there is light!" And it really felt, for the first time in a long time, like I could see that golden aura ahead, peeking like a halo around the edges of those blackened clouds that hung over us for months.

Oct. 2023, LLS Heroes

But the text message on my phone, like a flash of lightning, said: "Relapse."

The bolt of a text message said: "Aspen."

And the thunder rumbled darker around us.

And the tears, like torrents of rain, began to pour down again.

And, just when we thought it might end, the storm picked up speed, and fury, and treachery with a vengeance.

And we start this journey again, the light still there, just farther.

Aspen needs us. All of us. Phin said, at his worst, he felt "scared and weak". He does not want any of this for Aspen. He knows, we must now be their hope, be their strength, inch back into the blackness and shine our light for her to follow through this storm where we will stand waiting to guide her out of the trenches, out of the darkness, to pull her back into the light where they will emerge. Phin and Aspen: together.

Phin and Aspen, Dec. 2022

I publish this on the eve of a big day for both of our families. Tomorrow, Monday, April 16, Aspen's twin siblings will be HLA tested in their search for a bone marrow match. In the morning, Phin will undergo his day +45 bone marrow biopsy to determine how much percentage of his marrow is his donor's. We are hoping--praying--in both cases, the statistics stack in their favor; we are hoping for nothing but 100% from here on out.

On Anesthesia

There are some things that you get used to when your child has cancer. 

Sooner or later, the beeps and gurgles of the machines become like ambient background noise. After a while, you barely notice them. The same applies to the tangle of attached tubes and lines that at first are so viscerally disconcerting, but which gradually begin to seem like extensions of the child’s body. Even the hospital room, as unnatural as it is with its clinical surfaces, drop ceilings, and tyrannical fluorescent lighting–even that space eventually feels a little bit like home. 

But there are also things that as a cancer parent you never get used to. Things that never get any easier, no matter how many times they happen. I’m sure it varies from one cancer parent to another, but for me, it’s when they take him away for surgery.

Phin on his way to surgery yesterday

The worst part by far is the anesthesia, even though I am grateful that we live in a place and time when it is so available and safe. I am never prepared for the way his voice softens and fades away, or for the vanishing firmness of his grip on my hand or my sleeve as his body goes limp. No matter how I steel myself, I am never ready. Never. 

“Daddy, please don’t leave me!” Phin pleads.

Going.

“Please don’t leave me.”

Going.

“Please…don’t…” 

Gone.

And then I leave him. A nurse gently places a hand on my shoulder and escorts me out to a waiting area, and I sit there alone, thinking about this child, my son, whom I swore I would never leave. Under the fluorescent lights and the silent weight of my broken promise, I sit.  

But that recurring betrayal is only part of what makes it hard. Again, I cannot speak for every cancer parent, but I have noticed that something has changed in me since Phin’s diagnosis, where now certain situations feel like grim rehearsals for the unthinkable worst case scenario. No surprise. Most parents, upon learning their child has a potentially deadly condition, start taking tons of photos, stockpiling evidence that this child was here, was alive, was happy. We become hoarders of our child’s moments since one of those moments might be their last. I think this kind of mindset has contributed to the change I’m talking about.

For instance, last Christmas Eve, as we were getting ready to leave for church, I noticed Neesha stop outside the bathroom to adjust Phin’s little bowtie. I pulled out my phone, and the photo I snapped turned out pretty well–a tender moment between son and mother. Later, someone even grabbed it from wherever we posted it and had it framed for us. But when I looked at the screen after I snapped the

Phin and Neesha, Christmas Eve 2023

photo, my blood ran cold and I audibly gasped. I stood for several moments, frozen in terror in the hallway. It was something about the light, the tilt of Phin’s face, the peacefulness of his expression. No, I reassured myself. No, he’s alive, he’s alive. This is a happy time. He’s alive and he’s healthy and we’re okay. 

And he is, and he was, and we were. Still, even now, when I see that photo framed in our home, I have to reassure myself, to force myself to see the moment that it captured instead of the dark possible future it portends. 

I bring this up to provide some insight into how haunted your mind can become after your child gets cancer, and for context into why even ordinary things like scheduled procedures with anesthesia can feel so hard. 

For me, it isn’t just the climactic moment when the anesthesia takes hold and Phin falls asleep. Even the act of accompanying him to the surgical unit is a trek through a landscape of dread. I feel a deadening cold creep into my arm each time I walk beside his rolling hospital bed and guide it down the twisting corridors. How many caskets have I borne this same way at the quiet little cemetery on the edge of my hometown? I’ve lost count, but enough. Enough that now, walking beside Phin’s bed as it rolls, my hand slips into the grips on the side, muscle memory snaps my elbow rigidly into place, and my mind is dragged back to the site of those somber funereal walks. The double doors open to receive my son’s bed. This is where I will have to tell him goodbye. I choke down shrieks. 

It’s so hard because it feels like it’s practice for losing him forever. But it isn’t supposed to be like this. I once had a professor tell me that losing our grandparents helps us rehearse for losing our parents. That, she said, is the normal progression of it.

Not this, though. This isn't how it's supposed to go.

No parent should have to rehearse for losing a child.

Medical Updates

Phin woke up from the anesthesia yesterday with two fewer primary teeth, which were successfully extracted. He's got some stitches in his mouth and it's kind of sore in there, but otherwise, he's doing well and hoping to get discharged later today. Three more unsalvageable primary teeth need still need to be taken out, but his team has chosen to wait on those so as not to put too great a strain on his fledgling, post-BMT immune system.

Speaking of his immune system, this is Day +35 and we have some results from last week's chimerism (think chimera, from Greek mythology) test: Phin's Myeloid Cells are 100% donor. His T-Cells are 85% donor. This means the bone marrow he received from his donor is engrafted and cranking out cells, and the good news is all of his myeloid cells are now coming from the donated marrow. Still 15% to go on the T-Cells, but excellent progress.

Thanks for reading and following, Phin phans. It means so much to us.

Momentarily Phree

BMT squad goals: Seth and Phin outside the RMH

Hey there Phin phans! Dustin here with an update. Here we go!

Recap

Phin was diagnosed with acute myeloid leukemia (AML) in March of 2022. He spent five months in the hospital, did four rounds of chemotherapy and count recovery, and rang the bell in August of that year.

For the next 18 months, everything looked great. Phin went back to school, traveled, went to birthday parties, played with his sisters and friends, and learned how to swim, ride a bike, and ice skate. He went to clinic checkups, his scans all came back clean, and the appointments got fewer and farther between.

In February 2024, Phin relapsed, and since then he’s completed two month-long chemo-and-recovery rounds at the children’s hospital in Savannah and then transferred to the state’s only bone marrow transplant site at Children’s Healthcare of Atlanta. He received a bone marrow transplant from a non-related donor at the end of May and spent the following weeks inpatient on the BMT unit at CHOA receiving more chemotherapy and waiting to see if the bone marrow cells he received would engraft.

On June 24, he was discharged and rang the bell for a second time.

Phin is currently staying at a Ronald McDonald House in Atlanta, where he will remain for the next several months so that he can be monitored and more easily attend his frequent clinic appointments. 

Milestones
Here’s a video of Phin ringing the bell after he completed his treatment plan on the BMT unit at CHOA:

Medical Updates
It’s 8:50 p.m. on Monday, July 1, and we’re back at the hospital. I’m writing this from a room in the ER, where Phin was told to report because at his clinic visit this morning he complained about a tooth, and the nurse practitioner poked in his mouth and made some notes, and after she consulted with his main BMT doctor it was decided that the best thing to do would be to have him come in.

They think it’s probably a puss-filled abscess under his gums, and since his new bone marrow is still setting itself up in his system and his counts are low, they don’t want to take a chance that the infection in his mouth spreads. They’re going to take some X-rays, and probably they’ll keep him here until they pull that troublesome baby tooth out. But they’re full up on the BMT unit where we were just a week ago, so we're waiting. We hope they’ll find a room for us there soon. 

Phin On the Daily

The week between when Phin left the hospital after he rang the bell and when he returned this evening is similar to the year and a half he spent in remission after he rang the bell the first time back at the hospital at home. Both times, he was pretty fragile as far as his immune system goes, which means we had to put limits where he could go, what he could do, and whom he could be around.

But that never stopped him from enjoying every day and enjoying his freedom. This last week, he went hiking and

explored the trails behind where we stay. He went to a drive-in movie. He had late-night movie parties and built blanket forts with his sister, who’s visiting this week. He drove all around on his ride-on Land Rover, which was brought to him from home by our dear friends and neighbors Bev and Seth, who stayed in the same room we’re currently in at the Ronald McDonald House here in Atlanta when Seth was doing his own bone marrow transplant several years ago. Phin did yoga and lifted weights. He played Battleship and assembled Lego sets. He even went to one of those drive-through safari places where zebras and ostriches come up right up to the vehicle, and he wasn’t even bummed when we warned him about germs for the millionth time and told him we had to keep the windows up.

All in all, he had a really full week. Phin lives hard. That’s basically how he did it the whole time he was in remission. It’s like he’s making up for the time he lost. Or, maybe he’s living as much as he can right now, in the present, because when it comes to the future, you just never know.

Hopefully...

We knew when we left the BMT unit last week that we'd probably be back sooner or later. That's kind of why I wasn't too upset that I forgot to grab our snacks out of the communal fridge when we took off. Still, we hope this tooth abscess thing is a quick and easy fix and that Phin can go back to the Ronald McDonald House, where he has a lot more freedom and room to move.

Aside from that, we're also thinking about one of our dear friends right now who is waiting on some test results to come back. We're really hoping those results are good.

Thanks for reading, pham. More soon. Stay safe until then.

Twelve Days Post BMT

Hi Phin phans! It's Dustin with a quick update. Let's get it!

Milestones

It isn’t really a milestone for Phin, but it’s Neesha’s and my fifteenth anniversary this week. It's been interesting for us to reflect on the life we've shared. From this vista, looking back at the path that brought us here and the way it has twisted and turned, we see the point at which our boy appeared, at almost exactly the midway mark. Roughly half of the path we've walked together as a married couple has been one with Phin at our side, and roughly half of that stretch of trail has wound through places that all parents dread. I suspect more of the same terrain lies before us as well.

But what about before? What were those early years like, before Phin and before Phin's cancer? That seems so long ago. As anyone who has cared for a sick loved one before will attest, not all years are the same in terms of length or weight. Sometimes it turns out that a single year can contain many lifetimes. Neesha says she remembers having thought until Phin fell ill that we had achieved the kind of success and happiness that she had hoped for when we said our vows, and from this vantage point I can see that she was right.

My journals for those years tell a much different story--one of absolutely manic trepidation. The accounts seem so pitifully small now. This awful thing had happened at work. This landlord had suggested something about our lease. This petty coworker had ranted in a meeting. This whisper of coming change had made its way to my ears. On and on, page after page. Always a looming darkness. Always an existential threat. Always the scratching of wolves at the door.

This was my constant fear, expressed in some form on each page of my daily journals, year after year--that we would face a threat too fearsome to overcome, that we had brought children into this world who would depend on us, and that we would fail them. 

It is not just in hindsight that the challenges our family has faced seem small, but in comparison to the towering threat of leukemia. But in any case, Neesha's perspective from our time before Phin's diagnosis seems the more focused and accurate, the confident, well-adjusted mindset of a wife who appreciated that things were good before they got bad. It is even possible that being with her for this many years has even begun to change my perspective as well. The same anxieties about failing our children still plague me, but I am at least a little more capable now of sifting big, deadly threats from small, annoying ones.

Medical Updates

This is Day +12--twelve days post bone marrow transplant. We continue waiting to see whether the bone marrow Phin received has successfully engrafted. It’s in him, but will it do what it’s supposed to? Too soon to tell. 

Phin got transfusions of blood yesterday and platelets the day before. His counts (white blood cells, red blood cells, platelets) continue to crater, but that's expected. He received his final dose of chemotherapy this week. We hope it's the last one he'll ever have to get. 

Mucositis has been Phin's main issue since the previous update, tanking his thirst and appetite. He's on both IV nutrition and feeds through his NG tube since it's uncomfortable for him to eat or drink much. If he's experiencing actual pain, however, he's kind of shrugging it off. He's got a button that lets him take morphine hits, but so far he's only touched it once to test it out. He was concerned that pressing it would summon his still mostly unfamiliar CHOA BMT nurses to his room and that they'd start messing with him, and we had him press it to show him that no, instead it just sends pain meds through his line. Even after that demonstration, he hasn't touched the button since. 

Other than that, he's been getting some pretty powerful antibiotics to fight off any bacteria that might try to make a move on his system now that his counts are so far down. His doctors are particularly watchful for the drug-resistant E.coli that knocked him flat before we left Savannah. His diarrhea-causing C.diff (not to be confused with CDFF, which is a dating app, apparently. Did they seriously not even Google that name before they launched? Like, how does that happen? I'm being for real here because I just Googled the disease and the dating app pooped popped up. And is it like, "Hey you guys are a really cute couple but how'd you meet?" "Oh, you know, we both had CDFF and one thing led to another." "Uhhhh. Ew.") appears to have resolved, which is awesome because 1) no more diarrhea and 2) no more being confined to his room in quarantine. 

Phin On the Daily

Phin couldn't go outside his room for the past couple of weeks, and he's spent most of that time in bed feeling kind of wilted. His iPad screentime is way up, and most of it comes from him endlessly mainlining these stupid Youtube videos of the same two adult idiots narrating themselves playing Minecraft.

Here is a sample transcript:

"Bro! Where are you?"

"Bro! I'm over here!"

"Bro! I can't find you!"

"Bro! Go this way!"

"Bro! There's a creeper!" "Bro! What the heck, bro!" "Bro!" "Bro!" "Broooooo!"

It has been ... difficult ... for me. One of many tests.

But Phin has had a little more energy these past couple of days, and with that renewed vigor a little of his light has returned. He's back on the BMT unit floor walking his laps again. AND thanks to a yoga mat Neesha got him that has illustrations of poses printed on it, Phin has gotten really into yoga and makes time to practice. He's also been doing his physical therapy and playing games like Trouble, Uno, and Memory. All of this is good, in my opinion. He's slowly clawing his way back out of the abyss of Bro! Bro. Brooooooo.....

As for how the girls, Neesha, and I are doing, I guess we're okay. The girls are back home with Neesha's folks. My brother will give them a well-earned week off starting Saturday. They've each started summer theater camp and they're excited about it. They look forward to that every summer. Neesha and I are pulling our tag in/tag out relay act here in Atlanta, with one of us always at the hospital and the other at the Ronald McDonald House. We have everything we need, but we're tired. Neither of us sleeps very well these days. The hospital is comfortable enough, although there is a pervasive sense of ... impending doom? That isn't quite it. It's more like the vibe people in a scifi movie have when they're trying to escape a planet that's breaking apart. There are signs everywhere about the new hospital complex that's opening this fall, and often these signs appear very close to others that read "out of order." The prevailing ethos seems to be, if it breaks at this point, it isn't worth fixing. Not super reassuring for parents of children with serious illnesses.

The RMH is very peaceful, however, nestled as it is against the edge of Emory's Lullwater Preserve. I often cut through the woods on my way to and from my shifts with Phin at the hospital, even though I'm fairly sure it's trespassing. There's a little waterfall back there, a giant lake, all kinds of trails, and a bouncy suspension bridge over a creek. The forest is deep and full of shadows. Neesha thinks it's creepy and probably full of bodies. I fell off a log I was walking across like a balance beam yesterday as I was dissociating and doing Christopher Robin stuff back there on my way home. I'm okay though. Just got my clothes a little muddy is all.

Dear Donor

May 31, 2024

Dear Donor,

At this moment, your carefully packaged and stored cells are making their way across the ocean and have been en route since approximately 5 a.m. They will arrive in Atlanta around 4 p.m. our time, be transported by the same courier who has accompanied them since they left you in Italy, and be delivered here to Phin in the hospital where I type this letter; in this same room where he sleeps soundly with only the humming of his IV machine, the same machine that hums away in the background of my morning will disseminate your cells into his body around 9 p.m.

When I gave birth to this little boy, exactly seven years ago tomorrow, I thought I had seen all the miracle there was to giving life. I have been humbled now to learn the extent to which miracles of birth and life are happening every day through divinity, through science, through you and your gracious sacrifice to offer up the very core of what churns your own healthy blood to try and save the life of my only son, a stranger. Across all disciplines, one thing we can agree on is that "the life of the creature is in the blood." Your selfless donation will take over the role of giving Phin viable life--producing new, healthy blood to replace the tarnished, fatal kind his body has learned to make. 

It has not escaped me that you were willing to donate without knowing anything about my child, the life you are donating to, and I have wondered what brought you to this place of selflessness, what made you get on the registry at all? Was it someone you loved who needed a donor that inspired you to swab your cheek? Was it a case of happening upon a Bone Marrow drive, shrugging your shoulders, and thinking "why not"? At twenty-six years-old--the age you are now--Dustin--Phin's dad--and I were graduate students whose days were filled with the works of Montaigne, St. Augustine, Sei Shonagon. We spent all of our time consumed by writing and reading and teaching. I was working toward becoming someone who I thought would have something more to offer the world, not realizing at all what you already know: that deep within the spongy parts of my bones, we all already have something to offer the world, a potential cure for at least one life. At twenty-six, by donating your marrow, you have already done something so many of us will never do--saved a life.

Dustin at 26 years old

Neesha at 26 years old

I want to share with you about the life you're saving. Yes, Phin is a six-year old (seven tomorrow!) boy from Georgia in the United States, this is true, but Phin is also a humble lover of animals. Just yesterday, we spent hours watching live cams of any animal he could think of. "Pandas!" He'd shout enthusiastically, and we'd Google search a live cam. Time would pass and his eyes stayed fixed to the squooshy black and white bears, wandering around their enclosure, eating leaves and climbing. Phin--a silent observer of their meanderings. To know Phin is an animal-lover is key because he will not produce animal facts for you like some children who are enthusiastic about their interests do, rattling off everything they know about their beloved. He is humble; his knowledge must be coaxed. If you ask Phin about animals, he will just say he likes them. But if you engage him with conversation, say "The Atlanta Zoo is home to one of the smallest bear species..." he cannot contain himself from exclaiming "the sun bear!?!" Which is correct. Which I also didn't know until this very exchange happened yesterday between Phin and someone who had once worked at the zoo.

Phin observing animals at the zoo

Phin is insightful and keenly observant. I have shared before now some of the fantastic, wise things Phin says--among them that "Life may not be fair, but it's good" and that "behind the storm, there is light"--but his daily observations are keen and witty. When I once asked about whether he'd like me to procure contact information so he could talk to more of his classmates at school, he said "I don't know if you know this, Mom, but a lot of six-year-olds are not good at conversation." When he came home from playing with a group of neighbor kids, he declared one had a crush on another; days later, his 13-year-old sister, with amazement in her eyes, confirmed his observation, declaring "Phinny was right! I don't know how he knew, but he was right!" 

He is confident, cooperative and able to compromise and self-regulate. Like many little boys, he likes sports and video games, but he's willing to take turns choosing the game, to allow others to take the lead, but to take charge himself, if necessary. He recognizes kindness in others and holds those friends in the highest of esteem. He is kind--if you fall, Phin will always stop to help pull you back up, even if you are three feet taller, even if you yourself are a stranger to him.

He is a little brother to two big sisters who dote on him, the definite spoiled baby of our family and our only boy; the fifth member of our clan, who loves things like smoked salmon, avocado, steak, green eggs and ham, chicken tikka masala, and Thin Mint Girl Scout cookies. He is the only one of the group of us with a dimple. It's hidden in the right lower side of his cheek, so close to the fold of his smile, you might miss it if you're not looking closely enough. He laughs with his whole heart, sometimes collapsing down by the strength of his joy. He is oh so loving. At this very moment, he is saving all his Tooth Fairy money up so I can quit my job and spend every moment he's home just playing and hanging out with and loving him with nothing else to worry about.

We have given Phin to the world, and you have made it possible for the world to continue having him. I think of you every day as if you were one of my own children, pray for you every night, thank the universe for your selflessness, willingness, for your heart and goodness, for your "yes". I promise you now to mold this little boy into a man who is selfless, full of love and goodness, a person who will be willing to say "yes" when it matters, who recognizes his worth and ability to make a difference in the world by taking time to love and care for others any way he can...a person, who I imagine, will be just like you.