Phinally, Some Good News

Hey there Phin phans! Dustin here with an update. This one’s pretty good! I love it when I get to deliver good news, and I’m sure if you’re reading this, you’re probably ready for some, so let’s get into it.

Phin’s in remission again! The results of the bone marrow aspiration he got before he left the hospital on March 20 show that there’s no detectable disease in his bone marrow, which is where this kind of cancer lives. 

Here’s what it means: 

• The cancer responded to the chemotherapy like it did the first time. Over the past four weeks, we’d seen the withering effects of the chemo on Phin’s body, but we had no way of knowing for sure what it was doing to the disease itself. Among our greatest fears since Phin relapsed was that the drugs wouldn’t work on it a second time because his cancer had “learned” or mutated or developed a resistance to it. According to the lab report, it doesn’t seem like this has happened. 
• Phin can advance to the next phase of treatment–bridging chemotherapy, or BT. My understanding of this phase is that it’s like a “bridge” from the reinduction phase he just completed to the bone marrow transplant phase that comes next. It will involve more chemotherapy to maintain his current state of having no detectable sign of disease. Again, I’m not a medical professional and my comprehension of this stuff relies almost entirely on metaphors, so when I tell you I think this is the part of the MMA match right after a fighter falls, when the other one immediately climbs on top and starts pummeling their head into the mat, take it for what it is; the cancer just took a devastating hit and went down, but it will almost certainly pop right back up unless Phin and his doctors keep hitting it. 
• Reaching the bone marrow transplant phase is more likely now. For relapsed AML patients like Phin, there’s only one treatment option–get into remission again and do a bone marrow transplant. However, the patient can’t get a bone marrow transplant unless they have organ function above a certain threshold, and the longer it takes to get back into remission, and the more chemo it takes to do it, the lower the patient’s organ function drops, and the more unlikely it is they ever make it to the bone marrow transplant. Without the bone marrow transplant, it’s game over. That’s why it’s extremely good news that Phin went back into remission so quickly. 

Phin’s enjoying a few days at home between rounds right now. He entered the children’s hospital on February 15 and left on March 20. If all goes well, he’ll have another week home before he goes back in. He spent his first couple days of freedom running around outside, going out for ice cream with his sisters after they got out of school, riding his bike, and hanging out with Sundae, our family dog. Today–March 23–is the second anniversary of the day Phin entered the hospital in 2022, and Phin, Neesha, and I spent it with two of our favorite organizations: Camp Sunshine and Oatland Island Wildlife Center. We all had an amazing time today.

   

You can expect another update soon with some more info, but for now, let's just enjoy the win. I'll wrap this one up with a thing I used to do last time Phin was inpatient for chemo and recovery–a kind of roundup of each phase by the numbers, heavily inspired by the Harper's Index. So I'll leave you with that. Thanks as always for being a part of this.

[February-March, 2024]

The Phindex

Units Phin received of blood: 4

Of platelets: 6

Consecutive days of chemotherapy: 6

Length of inpatient hospital stay in days: 34

Bandage changes: 7

Sedations: 3

Bone marrow aspirations: 2

Spinal taps: 1

X-rays: 1

CT Scans: 1

MRIs: 1

Hospital leprechauns caught in St. Patrick’s Day leprechaun trap: 1

Factor by which visits from leprechauns outnumbered visits from the tooth fairy: 2

Completed laps around the pediatric specialties unit floor in ride-on SUV: >20

Friends’ end-of-treatment bell ringing ceremonies attended: 2

Ratio of visits from ponies to visits from dogs: 1:4

Ratio of visits from martial arts senseis to visits from magicians: 1:1

Hospital room sleepover parties with his sisters while they were on their spring break: 5

Percent increase from 2022 in visits from his sisters now that hospital COVID restrictions have lifted: 100%

Approximate percentage of Phin's total lifespan spent in the hospital: 6.7%

Lists or Phin's BMT: What we know right now

A week and a half ago on a Tuesday, we had a teleconference with Phin's Future Bone Marrow Transplant team. Even though I had ransacked online medical journals and read everything I could find on BMTs, and interrogated willing parents of transplant recipients, it still felt hard to hear the potential side effects and consequences of undergoing such a dangerous, yet potentially life-saving procedure, out loud. Sobering, really.

For Phin's kind of cancer--AML--there are two options: chemotherapy for what is deemed "low risk" (his cytogenetics, how the cancer presented, and how he handled treatment dictated this at first diagnosis); chemo AND potential bone marrow transplant for what is deemed "intermediate" (depending on patient cytogenetics, how and where the cancer presents, patient response to treatment), and "high risk", which is always intended for transplant because the genetics of this particular kind of AML do not respond long term to chemotherapy treatment only. When someone with AML relapses, there is only chemo and BMT for a cure.

A BMT requires wiping out Phin's own bone marrow (the stuff that makes all of the blood products and cells throughout his body: immune system, all of it) and infusing someone else's bone marrow to take over and replace it. It's like firing the original guy in there because he's seriously messing things up and replacing him with someone equally as capable but, hopefully, better at doing what he's supposed to do. 

When we were early-learners in this field of cancer-patient-parenting, I naively misunderstood how "last resort" a bone marrow transplant actually was. I assumed that pediatric cancer patients moved to BMT when/if chemotherapy alone did not cure the child of leukemia or lymphoma. Imagine my astonishment when another parent of a leukemia child emphatically "no no no no nooooo-ed" me when I asked if a BMT was the next step in the journey to cure her child's ALL. "A bone marrow transplant is the very last ditch effort at a cure for him," she'd said. "Thankfully, we have a list of other options first." 

Thankfully we do have a list of other options for ALL and other kinds of pediatric cancer. Unfortunately, because about 500 children are diagnosed with AML a year in the United States, and only a few thousand globally, not much research into other options to save these AML-afflicted babies has been done, leaving us with a list of only two: chemotherapy OR BMT. Unfortunately, we do not have other options for AML.

Phin has no other options. This is it. 

We knew going into this relapse that some of the BMT dangers are the following:

Infections, 

Graft vs. host disease (this is, basically, the original guy in charge of operating Phin's bone marrow and the new guy duking it out in there to decide who gets rule over Phin's bone marrow; the results of this can wreak havoc on Phin's body, collateral damage, they might say), 

Organ damage, 

Graft failure (aka: it didn't work and the new guy did not gain control and was, instead, kicked out by the old), 

Relapse despite transplant, 

Sterility, 

Future physical and mental health ailments,

Death.

On paper, this is a list. One of many lists we've read in the course of Phin's treatment journey. Each time he gets a new chemotherapy, we request the list on the treatment he's having. The list is an information sheet that gives us a general rundown of the drug, what it looks like, how frequently it's given, what the most common side effects are...etc. For example, this round, Phin had a chemotherapy called mitoxantrone. It's a bluish color. It causes his blood counts to recover more slowly than past chemos he's taken. It has a series of potential side effects, including yellow eyes, irregular heartbeat (they gave Phin a second drug to protect his heart while he had this one), mucositis and mouth sores (we've also been using Magic Mouthwash as a prophylactic to ward this off), hair loss... Our favorite of the side effects was green pee (Dr. Pendleton, if this blog finds its way to you, Phin wants you to know: "Yes, it's green!").

Phin with Bri, an AML/BMT survivor/hero

                                        

The list for the BMT was also a list until we spoke to the team and it became a hard, sobering reality. Among the many things we were told, these were the ones that were hardest for me to hear out loud: 

Phin will most likely not be able to have his own children after this. They have no way to preserve fertility in pre-pubescent boys yet. Studies are being conducted, but science hasn't gotten here yet.

Phin may still relapse again after this. In fact, about 40-45% of those who survive a BMT relapse.

BMTs are 65-70% effective, given the historical data we have to work with. 

Phin might not survive this. 

When we got off the Zoom call with the Atlanta team, my father and Dustin and I, we hadn't heard anything we didn't already know, but the weight of these words coming off the page and lingering in the air around us clung like a weighted-blanket of a shroud.

It's taken almost two weeks for me to write this post, to find the hopefulness and good again, to commit words to a page, but I can tell you this: these are the things I keep reminding myself when the BMT team's words echo in my mind:

Phin is young and has, so far, had minor repercussions from treatment. He's had time to recover from his first battle with AML. He's in as good of shape as we can hope for facing down a BMT.

If this BMT doesn't work, and as long as his body can fight, Phin can have another, and another, and another. I have read about and talked with people whose children have had 2, 3 and, even, 4.

We personally know at least two young adults who underwent successful BMTs, one of which had AML just like Phin

As of today, the girls' HLA tests are back and in Atlanta being analyzed against his HLA markers to see if either one of them is a match.

Despite not knowing about his sisters yet, Phin has TEN good matches in the National Marrow Donor Program registry right now. Stop. Go back and read that again. Phin has TEN good matches in the National Marrow Donor Program registry RIGHT NOW! By "good", I mean they've culled a list of potential matches (we're told there were about 30-40 actual matches) down to these ten and have asked them to take part in more testing. They have willing participants from this list. In addition to the HLA markers (they look for ten markers--proteins found on cells in a person's body) that they need to match as many of as possible, they're looking at age, BMI, medical history, blood type and gender to determine his best match. The BMT team feels confident about what they've seen from this list so far. A sibling donor is usually the preference, but this list of ten is promising.

We won't know much more on the BMT front until more results from potential donors, our girls, and Phin's upcoming bone marrow biopsy come back. We are in a holding pattern right now with little to report beyond some low-grade fevers, some pain in his groin, the expected need for blood product transfusions. Please pray the pain and fevers resolve and amount to nothing more than his marrow trying to flicker back on; we do have an X-Ray scheduled for later today to see what's going on.

Stay hopeful, Phin Phans. Be comforted by my list that serves as comfort to me. Encourage people to keep getting on the NMDP registry and, more importantly, to be ready if called upon to donate. We know of another little girl fighting AML in need of a BMT who does not currently have a match on the list. We are astoundingly blessed to have these ten options. We are so grateful and fortunate. Not everyone is so fortunate. Please keep signing up and encouraging everyone you know to do so. Pray and lift up these ten people who might be the cure for our son, that they will be brave and generous enough to follow through with all that's required of them to be Phin's life-saving donor.

If you need just one takeaway pick-me-up after reading this post, I leave you with the number TEN!

Phin and his sisters during a brief visit

-Neesha

                                          

Phragments

Journal Entry (Dustin’s): January 1, 2024. It’s 2024 and I have absolutely no plans, no resolutions, no projects, and no idea what’s going to happen.
 

* * *

In late January, the student council at the kids’ school hosted a fundraiser for cancer research, and the prize for the class that raised the most money was a pizza party.

Phin’s class won. 

We don’t think Phin told his classmates about his personal history with leukemia. He isn't ashamed of that part of his identity, but this is only Phin’s first year at this school, where his older sisters have attended for years, and it seems like maybe he didn’t want cancer to be the first thing his new friends learned about him. 

Everyone who has known Phin remembers that he spent most of 2022 in a hospital fighting for his life. He is currently a poster child for the Leukemia and Lymphoma Society of Georgia. With his school's cancer fundraiser, however, Phin decided not to put his thumb on the scale. Instead, he and his classmates buckled down and quietly defeated all the other classes by collecting the most money for cancer research. 

* * *

Journal Entry (Dustin’s): January 31, 2024 I’m trying to do self-care a little bit in 2024.

While I can, anyway. Before the next catastrophe arrives. 

* * *

It’s February 7, 2024. Pizza Party Day.

I carry a stack of steaming pizza boxes into the classroom where these first graders have gathered with the winning class from the middle school. “Here comes the pizza!” a kid yells. The entire place goes crazy. Teaches scramble to restore order. I see Phin in the corner of the room, his face beaming. I set the pizza boxes on a table, give him a high five, and congratulate him again on his win. He hugs me.

“Thanks, Dad!” he says.

Phin and his classmates celebrate, laughing and playing and eating pizza. They all look so proud. They should be. In a single week, their school raised more than $3000 to help fight leukemia.  

None of them suspect that the very same enemy that they rallied to fight is also at the party. 

* * * 

Phin missed his class’s Valentine’s Day card exchange, but his teachers encouraged his classmates to design new cards for him that both observed the holiday and acknowledged the occasion for his absence. This mostly resulted in a kind of Happy Valentine’s Day/Get Well Soon mashup–a combination of sentiments that’s tough to find in the greeting card aisle. 

One by one, Phin delicately removes each card and sounds out the words his classmates wrote. Many of the cards are cut into heart shapes or have hearts drawn or colored onto them, and some also feature his classmates’ custom drawings of animals, dinosaurs, and ninja turtles. Phin admires them with the rapturous joy of a museum director opening a package to discover a trove of lost masterpieces. 

What I most appreciate are the words Phin’s classmates wrote. As adults, what can we say when someone gets cancer? The moment asks us to respond, so into the darkened well of our hearts we lower our buckets, hoping to hoist up a message of sincerity, comfort, and reassurance. Instead, what emerges sounds like the stuff politicians say in the aftermath of a tragedy. Sometimes we don’t even know where to start, so we say nothing. It happens to us all. It happens.  

But it doesn’t happen with these first graders. They get it right. Maybe their limited vocabulary and spelling skills turn out to be beneficial by forcing them to keep their messages plain and simple. Or maybe, because they haven’t fully mastered the dark art of cliches yet, or because the act of writing is laborious for them, their sentences are incredibly concise, stripped of everything besides raw purpose. Whichever it is, they hit hard. They feel true. They say exactly the things that I wish I had the courage to write to my son on a construction paper heart:

“I’m really sorry you got cancer again.” 

“I hope you get better.”

“I hope you feel better and your cancer goes away.” 

“We miss you.”

“Get better please.”

“We love you.”

* * *

I’m standing at the closed doors of the pediatric specialties unit, holding a cup of coffee I’ve just retrieved from the parent nutrition room, waiting for the nurses to buzz me back in. A tall man about the same age as me steps out of the elevator down the hall and walks over. Another dad.  

“How’s it going?” I say. It’s more an expression than a question. It’s a safe bet that it’s going pretty poorly overall for any parent trying to buzz into this unit. I wince a little inside that I didn’t catch myself. Force of habit. 

“Oh, you know, not real great,” the man says. 

“Tell me about it,” I say. Another expression. I wince inside again. 

“My son and I were driving the other day. Minding our own business. All of a sudden, everybody just starts shooting. Not at us. At each other. We just happened to be in the way.” 

He points to a dark, scarlet scab on his forehead, presumably where he was grazed by a bullet or a shard of flying debris.

“Oh shit,” I say.

“Yeah,” he says. “My boy got hit, too. He’s stable, though. He’s stable.” 

The man tilts his bullet-grazed face upward and purses his lips. 

“I’m glad you’re both okay,” I say. I’m really on a roll with blurting things out this morning. There’s a near certainty that neither this man nor I will ever really be okay again. At least not anytime soon.

“What about you?” he says. 

“My son’s leukemia came back.” 

The man exhales like he’s been punched in the gut. 

“I can’t imagine,” he says. 

“Yeah,” I say. 

The buzzer sounds. The doors to the unit swing open. We walk in together, just a couple of dads out here, chatting it up in the hallway. We walk to our sons’ hospital rooms. They are next door to one another.

 

“Hey man,” he says. “Hang in there, okay?” 

“You too,” I say. 

I see him turn to face the door to his son’s room. I watch as he takes a deep breath and forces a smile onto his sad, wounded face. It’s the same smile I force onto my own face as we each push down the handles of the doors and quietly enter. 

* * *

For some reason, my mind keeps returning to this moment in August of '22. It was early evening, the golden beams of a late summer sunset blazing through the west-facing windows. Phin had just been released from treatment and returned home. Thin and wan from months of chemotherapy, then-five-year-old Phin was supposed to take it easy for a couple of months, building his strength back slowly, avoiding exertion and infection. I was in the kitchen when I heard the front door open and close. I called Phin’s name. He didn’t answer. 

By the time I hit the front porch, Phin was far away, running barefoot at full tilt around the far rim of the lake. I called and called. He heard me and sped up, his distant laughter punctuating the droning symphony of cicadas at dusk.

I watched him, so far away, so vulnerable but full of joy, and for a moment I was awash in an indescribable lightness. The world fell silent. My breath left my body. I remember thinking, yes, yes, because this was the deal I offered over and over, the wish of my heart, that he would get to stay and I would go instead. This was my prayer. Let it happen. Please. Let the curtain fall for me. I am already so tired. Let me take my bow, and let my atoms be recast into other roles. Let him continue to laugh and to run, and let me become part of the wind against his face and the ground beneath his feet and the grass under his toes and dust in his wake. 

Then, just as quickly as it began, the moment ended. I recovered my breath and wits and took off around the lake after my runaway son.

So many memories pass like the glints of autumn sunlight on the tips of the waves that day, sparkling brightly for a moment, then vanishing forever.

This one, for me, remains.  

* * *

Journal Entry (Dustin’s): February 5, 2024

Disaster.

Phin’s numbers from his lab work at the clinic today are crazy. His counts, I mean. Platelets way down to 2022 levels. White blood cells down. RDW way up. It looks to both Neesha and me that the nightmare we feared is upon us. I read her the report while she was driving and went straight into shock. She had the kids and I had to teach. I fought my way through my 8 p.m. class and came home to Phin asleep in our bed. I prayed and prayed.

My God. Help. Protect him. Please. 

* * *

It’s the morning of February 8, 2024. Phin is on a class field trip to the UGA Marine Education Center and Aquarium. Parents were invited, so I’m tagging along. 

Phin’s bus enters the parking lot. The door folds open, and Phin and his classmates disembark and line up. He sees me and waves. The bright morning sunlight washes over us as we walk toward the aquarium building. Phin and I are on a field trip with his class, but as a family, we are floating in the fathomless Inbetween Sea, a place of mist and shadow where cancer patients drift in the days after their physicians inform them something is amiss but before they have an official diagnosis, where they are dragged by the competing currents of hope and despair. Later this evening, an oncologist will call with the new results from the lab, and we will be tossed in the waves and dashed to bits, but that hasn’t happened yet. 

Inside, the students are divided into groups. An aquarium worker guides Phin’s class into a room full of tanks and seats them on the carpeted steps for an interactive overview. 

“The fish and sea animals you see here all live in the ocean right here in Georgia,” the aquarium worker says. A girl in front of Phin raises her hand. 

“Are there any axolotls in there?” the girl asks, pointing to a nearby tank. 

“No,” the aquarium worker explains, “no axolotls in there. Sorry. We do have--”

“Well, what about over there?” the girl asks, pointing to another. This continues for some time. 

“Axolotls don’t even live here,” Phin whispers to me conspiratorially, “but she’s not going to stop asking about them.” 

The girl snaps her head around and scrunches her smiling face up at him wryly. Phin chuckles and shrugs at her. It occurs to me that at no point in my life have I ever been as cool as he is at age six. 

The aquarium worker finishes her presentation. Phin and his classmates complete an aquarium scavenger hunt, populate an ocean biome board with sea creatures cut out of felt, and rotate through touch stations where they pick up shells and pet stingrays. 

“Are you Phin’s dad?” a boy asks me at the horseshoe crab station.

“Yep,” I say. “How could you tell?”

“Well, you’ve been taking kind of a lot of pictures of him, so I figured.” 

“Good looking out, dude.” 

Phin walks over to us and holds a horseshoe crab shell in front of his face like a mask. The other boy crinkles his hands into crab claws. They both turn to face me and pose. For a moment, we are scuttling happily at the bottom of the sea, far away from the storms and the currents, the waves and the rocks. Everything here is still and calm. In this moment, we are safe. 

I take a bunch more pictures. 

* * *

Journal Entry (Phin’s): February 29, 2024

Today's February 29.

I am sometimes lonely here at the hospital.