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.