Bridging Chemo: Complete

Hey there, Phin phans. Dustin here with a quick update as Phin prepares to head to the Children's Hospital of Atlanta (CHOA) for the preliminary and preparatory procedures before his scheduled bone marrow transplant (BMT) at the end of the month. 

As you all know, Phin completed the bridging chemo segment of the treatment last week after a harrowing scrape with e.coli that threatened to push back or derail the BMT. But it could have been even worse than that. As we've mentioned before (although not in a while), once people with leukemia start chemotherapy, it usually isn't the cancer that gets them. It's regular old infections--germs that normally wouldn't stand a chance against a functioning immune system. Phin's scrape with e.coli the week before last was the closest we've come to losing him since this whole thing started back in March of 2022, but his physicians made excellent decisions, the antibiotics worked, and Phin recovered. A few days later, he packed up his room, got one last spinal tap and bone marrow biopsy, said goodbye to his nurse squad, and headed home. 

Since it's also been a while since we did a photo essay, here's a quick recap of Phin's time at home so far, on the eve of his first on-ground CHOA appointment. 

Neesha and Phin look back as they exit the Children's Hospital of Savannah. Between his first rounds in 2022 and the treatment after his relapse in 2024, Phin has spent roughly eight months of his life inpatient at this facility. Phin crosses this physical and symbolic threshold with a measure of ambivalence--glad to be going home but apprehensive about leaving behind familiar faces. 

Requests from Phin are few and far between, but one thing he's said he wanted since early in his initial leukemia experience when he was four was to plant a tree--and not just any tree, but a sycamore, which can grow to be so massive that we weren't sure how to realize this dream in our own little yard. The neighborhood HOA made it happen for him, though. Phin's sycamore stands at the edge of the neighborhood playground overlooking the lake. He loved making its acquaintance.

Phin and his big sister Av play on tablets together in Av's room. Phin had missed his sisters tremendously during this latest round. Unlike his hospital stay in February and early March, when his sisters could come visit and even have sleepovers, Phin spent much of the bridging chemo phase in lockdown. Even with those precautions, infection found him anyway...which is why, when Av suddenly came down with a fever mere hours after this photo was taken, the house instant went to DEFCON 2 and Phin was evacuated to his grandparents' house. He'd barely even been home for a day. 

Phin's grandfather takes his temperature as Phin watches TV at his grandparents' house. The orders we received from the oncology team at the hospital upon discharge were clear: Bring him back the minute his temperature exceeds 100.4 degrees Fahrenheit. After we arrived and all that night and the next morning, Phin's temp would repeatedly approach 100 degrees, but it always came back down. His sister recovered the following day. 

Phin and his grandmother play the card game war. Tablet-less for the first time in weeks, Phin rediscovers the excitement of playing games face-to-face with his grandparents.  

The town where Phin's grandparents' live has lots of ponds inhabited by alligators, and a tradition of ours hearkening back to when we had to flee germs when he was immuno-compromised last time is the self-guided gator safari. It's basically just us driving around looking for gators or swooping through parks that have ponds and seeing what kind of reptiles we can find lying around without getting too close. We found three this day. 

His grandparents' town also has a playground that looks like a pirate ship. The last time we were there, he was in remission, and he played there with his sisters and cousins. As he played, we remembered that time, and we talked about how he'll get there again, only this time we'll do it in a way that makes it so his cancer can never come back.

"But it'll take so long," he said.

He's right, but he'll get there. He's on his way. He's made it across the bridge. 

When it cooled down in the evening, Phin, Uncle Kiran, and I went mini golfing. No particularly amazing shots, no holes in one, but Phin lasted all 18 holes. That in itself was a win. 

Last but not least, Phin did finally get to come back home, the sickness there having cleared, and even better because it was Mother's Day. Here he is celebrating with his cousin, G, and his mom. Cousin G embroidered his logo for him. Very awesome. 

That's all for now. On to Atlanta for a few days of appointments, consultations, and examinations at CHOA. Wish us luck, and we'll catch up when we return home at the end of the week. 

Phragility

The summer Phin turned four, Av came home not feeling well after camp. We figured it was a virus; pediatrician and urgent care suspected the same. She tested negative for everything: strep, flu, mono, covid, but her symptoms worsened. I remember her pale, her quiet moans. 

Av, Phin, and Obie, summer 2021

"It's hard to even breathe, Mama," she'd croaked out, clutching her throat, tears tipping out from her eyes, fast-moving, leaving dark wet tracks on her white face. 

Her fever stayed high following antibiotics and Tylenol, nothing touched the pain or temperature. It took days and two ER visits ending with an admission to the hospital before figuring out what was wrong. Despite having been rapid-tested twice for mono with negative results, she ended up being hospitalized for mono--not your usual kind where you might be super tired for a long time and weak, but the kind that does all the rare things that only happen occasionally: enlarged spleen, anemia, swollen lymph nodes so big they pressed against her airway, making it difficult to breathe. She needed strong steroids, could barely walk (for weeks) for more than a few minutes, couldn't sleep for months for fear of her airway closing, remembering the terror and pain she felt when it nearly did.

Another time, just after we moved to our house, Dustin ran a tiny, three-year-old Obelia into the kitchen bawling, her hand covering her mouth. As he set her on the kitchen counter yelling for me to come look at her, she moved her hand to reveal a face full of blood; it poured out of her from a gash just below her lip where she'd nearly bitten through her mouth after tripping on the porch stair and falling. Even now, I feel woozy to think of it. In the ER that same day, she begged me not to make her do it. "It" meaning endure a numbing needle to her face, followed by stitches sewn close together to close the fabric of her skin. 

If you're responsible for a child on a regular basis, you know the desperation and pleading in their voices, the ache of having to force something onto them for their own good despite having spent years teaching them to advocate for their own bodies and to never accept anything by force. It is painful to live out this juxtaposition, to feel like a hypocrite as you become the enforcer of the unwanted because you know it is needed. Maybe we comfort ourselves knowing that it's "for the best" and that "one day they'll understand", but when a child is battling cancer and you face this limbo several times a day with no certainty of healing in sight, this pain is a sustained one, the uncertainty of "one day" making your role harder to accept. What if we don't make it to that day of understanding? Will they carry this indignation at your betrayal? Will it be what they recall at the end?

And, at the time, I was traumatized by every one of those instances. I still feel a sort of helpless anguish remembering Av's fear of falling asleep and Obelia's desperate pleas. There are other experiences, surely, that I'm forgetting now in the wake of the life we are living, but each time a medical emergency happened, my heart pumped, my mind struggled to keep from panicking, I worried and waited for the worst possible news. When it didn't arrive, we went blissfully on our way, tucking our biggest fears aside for bigger medical emergencies, secretly believing that they would never come.

Until they did.

Phin's AML diagnosis came a mere nine months after Av's stint with mono, the effects of which would linger long after she left the hospital. At the time of Av's mono diagnosis, I (and friends whose children had faced down cancer) had feared they would tell us she had cancer. We even asked and the attending doctor assured us her blood count numbers would look far more frightening than what they were seeing then. Relieved, we celebrated having a clear diagnosis, others celebrated with us. We knew in our hearts that what we were really celebrating was the curability, the commonness of what she had and the reassurance she'd conquer it and be back on the streets in no time riding her bike, skateboarding with friends. We celebrated that it wasn't cancer.

How innocent we were of the foreshadowing that came with that experience--how, less than a year later, we'd come to learn exactly what a cancer patient's blood counts looked like, exactly what it felt like to live in that sustained state of terror.

You may have noticed we have our finger on the pulse of Phin by the numbers. We know exactly how many nights he's slept in a hospital away from his bed, our home, his siblings; we know exactly how many blood draws, clinic visits, infusions he's had. It's not because we're numbers people--if you've been around long enough, you know we are not numbers people (ELA all the way!); it's because of Phin's beads. One of the things Phin enjoys and is most proud of are his Beads of Courage. When Dustin and I swap out, I usually ask Phin if they've updated his booklet. He tells me no (even if they did) and we talk through it together. 

Phin and his beads

"I had a bandage change. That's a bead. And the thing here," he says to me pointing at the NG tube woven through his nostril and taped to the side of his face. "Is that a bead?" "That's a bead."

Phin gets a bead of courage to mark the challenges he overcomes during his cancer journey. He gets a different colored bead for things like bandage changes, overnight stays in the hospital, pokes/blood draws, IV infusions, chemotherapy, medicated mouthwash and eyedrops, all sorts of tests (echocardiograms, CT, Xray...etc.) and on and on. His booklet fills up by the day and once we complete one, we move onto another. This is how I'm able to quantify these experiences, to tell you that in the last few days Phin has had one bandage change, two fevers, constant IV infusions, at least 14 blood draws, light sedation, five CT/Xray exams, and two NG tube placements and an eventual removal. In total, I think it's safe to say he has collected more than 1,000 beads over the course of his treatment, and having now grown more familiar with what they're all for, I can assure you there are many I forgot or didn't realize he should be receiving. Some days--like the last few--there are many beads; other days there are just a few. Each time we look at his beads, I am thrown into something of a montage-daze, recalling each event that took place on that day and the series of days that might follow, remembering the ache of each memory. All the moments of begging and reluctant acceptance we go through in one week with Phin amount to more than I experienced as a parent with three children combined across six years before Phin's original diagnosis.

When I think of trauma now, I envision  holding Phin's hands for comfort while he willingly lies on his back and endures the removal of a sticky bandage that tugs painfully at the sensitive skin on his chest, over his heart, and beneath his armpit no matter how careful the nurse is that removes it. His tears stream; he screams about it hurting, about him hating it, about how he wants them to move slower or faster. He leaves his body open and still for his nurses despite this pain, never protesting against what they do with anything more than his words, knowing it's an essential act that must be accomplished no matter how much he hates it. We all--a parent, nurses, Phin--go through this at least once every seven days.

I think of Phin's eyes welling up with tears as I lie him in the cradle of a CT scan machine, promising him I will be right there, I will hold his hand the whole time, begging him not to cry hard, to stay calm so we don't have to repeat the scan again. The tears stream as they shift him into the mouth of the machine, his tiny hand squeezing mine as he goes, his muffled sobs as he tries to stay calm. 

Phin prepping for another CT

I hear doctors explain that they want to run tests to make sure there's "no bacteria around his heart" or that he doesn't have symptoms of "typhlitis"--a life threatening inflammation for a patient like Phin. Every treatment asks for us to compromise, to bargain, to potentially sacrifice some part of what should be a normal part of life for Phin for just a chance for him to live. Imagine being asked, not hypothetically, but with very real likelihood, on a daily basis questions like: "Would you trade your hearing for a chance to live? What about your ability to pay attention? How about a few inches of height? Your ability to have children of your own in the future? Would you be willing to potentially come to the oncology clinic regularly for the rest of your life to treat long term effects of all the blood product transfusions you had? Hip replacement sound OK, even if it happens late in your teens and you'll need both? What about your major organs--are you OK with damaging your major organs in exchange for being allowed to keep living?"

These questions remind me of the futile bargaining I have done and am regularly tempted to do with God or any unseen force who might hold reign over divine interventions. Because, as I know you have experienced at least once in your life, there is nothing I wouldn't give, nothing I wouldn't trade to have Phin back home, healthy and driving his sisters crazy, running out the front door to play with friends, swimming in our neighborhood pool all summer long, slipping quietly into our bed in the middle of the night. The difference is that my bargaining is wishful; the repercussions we bargain with for Phin during treatment are very, very real.

Phin on the mend

For Phin, there has almost always been trauma; his life is a series of unending traumas that he has accepted, that we cannot take away, cannot stop and that I can hardly bear, stopping myself a million times a day from breaking down in the face of his bravery. And every day we face a new onslaught of trauma on his behalf, secondary to the constant trauma he has come to know as the definition of life.

Yet he laughs on, plays on, endures each unimaginable request, each monstrous fear placed before him, slaying them all each day in quick succession in ways most of us will never have to understand.

And, my God, does he do it all with so much grace.

Phevers

Hi Phin phans. It's Dustin, popping in with an update on Phin. Here goes.

So much about Phin's current experience with leukemia resembles his first. A lot of the same people are caring for him. He's staying in the same rooms at the same hospital. His habits and routines have resumed--the way he races through the corridors when he's feeling well or tiptoes around looking for nurse friends to prank. And Neesha and I have readjusted to the alternating one-night-at-home, one-night-at-the-hospital tag team act that we did the first time. 

Mostly.

Occasionally, I wake up in the flickering monitor darkness of Phin's hospital room and become briefly disoriented in time the way people who travel become disoriented in place. I blink and know exactly where I am, but not exactly when. Is the chemo-ravaged little boy sleeping next to me expecting to complete his remaining treatments and go home soon, or has he just relapsed and come back? What kind of stone sits in my chest, the raked kind that tumbles into the fire, or the thrown kind that sinks into the depths? Was everything we did with him over the 18 months he was in remission just a dream? Did we ever leave here at all? Sometimes it's hard to tell. The resemblances between this time and last time are too numerous and too great. 

But there are also differences. Last time, as his nurses will all attest, Phin sailed through the rounds of chemo and count recovery without major incident. There were setbacks and delays, yes, as well as moments of real terror, pain, sadness, and dread. For the most part, though, last time Phin avoided the complications that can happen to people when they have key components of their immune systems taken down to zero--serious infections, high fevers, racing heartbeats, tubes that go up the nose and down the throat. 

No more. The past 36 hours were originally scheduled to represent a kind of home stretch to the bridging chemo phase as he completed his oral chemo and his blood counts flickered back to a level resembling normal. Instead, Phin has danced on the edge of a cliff, his pulse never dropping below intensive cardio workout levels, his fevers spiking regularly and rarely dropping below 103 degrees for long. He picked up an infection from e.coli, most likely the result of the bacteria leeching into his bloodstream from his constipated bowels and multiplying rapidly there in the absence of any immune response. 

Last night marked the crossing of a threshold for us--one that many other kids with cancer have already crossed--and it was truly a study in anguish, one in which the unwavering vigilance and heroism of Phin's nurse Alexa cannot be overstated. 

Medical Updates

Things are not great right now, but we're cautiously optimistic they're getting better. Today, Phin's care team made some changes, and we're seeing little signs of improvement like lower fevers with more time between them and a heartbeat that hovers around 140 bpm instead of 200. Progress. 

Priority number one is to stabilize Phin. After that, we can determine what havoc this infection incident will play regarding his bone marrow transplant. Remember, this phase of Phin's treatment was called "bridging" because it was supposed to be like a bridge from his return to remission from his initial relapse to the inevitable BMT--his only option--at CHOA. 

And here, buried many paragraphs down in this update, is the feel-good lede that we had previously hoped to put front and center: A bone marrow donor for Phin has been located who has confirmed a donation date of May 30. Since bone marrow cells have an extremely short shelf life at the temperatures they're subject to during transit, Phin's transplant date is scheduled for May 31. A lot of things have to line up and go right for him to receive those cells. He needs to recover his counts and be discharged. And he needs to appear at his preliminary BMT evaluation appointments at CHOA on May 7. 

But first he needs to beat this infection, so we'll cross that bridge when we come to it.  

[April, 2024]

The Phindex

Units Phin received of blood: 2

Of platelets: 3

Days of consecutive IV chemotherapy: 4

Number of oral chemotherapy pills swallowed: 88

Length of inpatient hospital stay in days: 20

Bandage changes: 4

CT scans: 1

X-rays: 4

NG tube placements: 2

Number of times Phin achieved uncontested victory over his nurses and father at UNO: <5

Likelihood Phin plays +4 card while laughing maniacally: 100%

One Phoot In Phront of the Other

A dear friend wrote me the other day, reaching out to offer support and love in that ever-present way you--our village--keeps showing up for us. She wrote that our posts: "make it seem like you and Dustin have it all together and things are going smoothly, but I know in my heart there's so much more behind the images and the updates."

This is true. You probably all know this in your hearts. 

And I know it looks like we're strong; people say this a lot, but we are no stronger than anyone else. The way I see it is this: when your child is diagnosed with cancer or another potentially deadly disease, you have two options after you allow yourself a complete and utter meltdown: fight or paralysis. You put one foot in front of the other; you figure out how to navigate this new life; you keep moving forward because to give into the alternative is a paralysis of movement toward saving your child—time is not a luxury you have; paralysis is absolute destruction to the family life you've carefully curated and nurtured since its inception, a potential destruction to the child you desperately cannot imagine living without. And, make no mistake, some people have little choice but to choose that option. Some people live in countries that can't offer the treatment Phin is receiving here or they can't afford it if they do; places where there is no option for support. They are desperate, but limited. Some people carry crosses much bigger than our own: war-torn countries where they have to flee just to receive medical help for their child, more than one child with a potentially fatal diagnosis or more medically complex situation.

But I didn't start this post here today to make you sad. I am inspired to write to verify what my friend said because she is 100% correct. As I’m sure so many have thought and I know some have expressed, I can confirm: this life is hard. Dustin and I are both still working full time. Our girls are still going to school full time across the city from where we live. Dustin and I are both teaching from the hospital some mornings and sleeping at the hospital every other evening so we can see all of our children. During the workweek, we only see our girls every other day. By the time we get home at night, they're already in bed. This also means that if they need help with homework and don't want to (or can't) work with the adult who is home, we are FaceTiming to study spelling or vocab, social studies, math; we are talking through essay-writing as if I'm teaching another Zoom class. Every one of these situations is, in some way, representative of a gift we’ve been given by the people in our lives. We are fortunate to be able to continue our lives, to reshape them—however hard it may be—to continue our life in these ways.

FaceTime HW with my Girls

Any given workday for me or Dustin might look like this:

• Wake up in the hospital between 6-7 a.m.
• Get ready for work
• Grab laptop and teaching materials, set up "class" in a quiet space of the hospital
• Teach at 8 a.m. for 2.5 hours on Zoom with a brief break to check in on Phin (who is usually sleeping, but also currently monitored by Uncle Kiran who has been showing up before class to stay with him when he wakes)
• Struggle to find foods Phin will eat, try to keep stuffing him with those foods
• Spend the rest of the day trying to engage him with activities while also responding to emails
• Spend the rest of the day trying to keep Phin from hurting himself because he has unusually high energy for a child with almost no platelets, red blood, wbc or hemoglobin; his brain does not recognize that his body should be too tired to race through the halls on a tricycle, so he does it. A lot
• Collect, measure, and record Phin's urine and poop
• Help administer medications and prophylactic treatments (mouth washing with a sponge-stick doodad) throughout the day from the moment he wakes until bedtime

  

  Phin's bath

  
  
• Give Phin a bath (this is not your ordinary bath; Phin cannot get wet, so we use a bag of 6 sterile wipes--one for each limb, front torso and back--to wipe him down thoroughly)
• Wipe down and set up a fresh bed with clean linens (Phin must bathe and have clean sheets every 24 hours to help prevent infection and maintain a sterile environment)
• Get Phin to bed (ha; this boy does not want to sleep)
• Grade and prep for classes while he sleeps OR while lying beside him trying to get him to go to sleep
• Either sleep in the hospital crammed into the bed with Phin who prefers not to sleep alone here, potentially (if you're a light sleeper like me) waking whenever a nurse comes in to take vitals or draw blood, or sleep on the parent bed, which feels perfectly comfortable because we're too exhausted to notice if it's not OR
• Swap out around 10:30 p.m. when the spouse who has been home teaching an evening class is done teaching and travels back to the hospital to relieve you 

D (preparing his lesson)
and me (teaching over Zoom)
on separate occasions from the hospital

So while this life is hard, no doubt about it, it is as smooth as it can be, given the circumstances, and it's smooth because my brother and my parents have been able to take turns moving into our house to help take care of our girls. It's smooth because our employer agreed to put our classes fully online this quarter, allowing us to make this life as livable as possible without losing our ability to pay our bills. It's smooth because our children's friend's parents are the best friend-parents around; their school is compassionate and concerned and invested in doing what they can for our children. It's smooth because we have an army of people ready to take shifts when needed, because we have so many people rallying and doing for us what we ourselves don't even know we need. Most importantly,  it’s smooth because Phin's care team is incredible; they make him feel safe and loved. because Phin is doing relatively well--and I attribute this to science and allllll the prayers and love his Phin Phan Tribe and, even strangers, are constantly sending. 

My friend was right, though, there is so much more behind the images and updates. 

There are the very physical responses Phin has, the uncertainty of how all the chemotherapy is affecting his internal organs and functions. No matter how many videos or photos we take, we can’t know those consequences just yet.

Phin has nausea some days and unexpected side effects others. Just this week, he kept shaking his head like he had water in his ears; we worried this could be tinnitus, a potential chemo side effect that has no cure. A constant ringing in his ears for the rest of his life. Most days he lacks an appetite. He's lost almost four pounds again. When he does find something he likes, we stock enough to have available whenever the mood strikes. Right now, it's homemade pancakes. When I was home yesterday, I made three batches.

There’s the anxiety. So much of it. A burden you don’t see but that each of us carries.

Obelia had a big birthday (10!!!) and it was a hard one because we couldn't all be together on the actual day. She didn't want to celebrate. She expressed her sorrow, her anger at just wanting everything to be normal again, for Phin to be home.

Obelia's early celebration so
Phin could be home

There’s the fear of what this is doing to our girls. It’s hard to keep them on track academically because we're not consistently home to continue helping them in ways we know work for them, ways we’ve been perfecting for years. It's hard to not know--and fear--how all this is affecting them, the damage this trauma may be wreaking.

There’s the difficulty of not having consistent interaction with the only other person as attuned to the impact of this life as you, the ability to connect over this crisis we are living through. Dustin and I are barely in the same room at the same time for more than 10-20 minutes . The majority of our conversations happen in snippets or via texts. We are like an estranged couple sharing a house but never living in it at the same time. 

 

There is exhaustion. So. Much. Exhaustion. The emotional, mental, and physical toll, the incredible weight of it all. My soul is exhausted in ways I’ve never known possible. There is hope but, as Dustin has said, even hope is exhausting. Perhaps the most.

And I would be a liar if I said there weren't moments at the end of the day when I'm walking back to the house, glancing down at the grass, that I don't consider giving in, collapsing onto the ground, lying against the earth in the prickling blades, stars, clouds spread out above me like the dark, distant abyss I see ahead of us, and sighing long and deep with the relief of not having to hold the weight--the sheer magnitude of it all--of myself up anymore, just for a few minutes. Not having to conjure up the strength to keep myself in motion--the motion of our lives, putting one foot in front of the other--anymore, heading toward that mysterious, fate-filled darkness of the terrifying unknown that lies ahead. 

Of the choices we get to make, and we don't really have many, not to mention every one of the ones we have are hard, we choose to celebrate every moment Phin feels good, every moment we're all in the same city and we get to see our girls for even 45 minutes every other day (which is what we were doing last quarter when Phin first relapsed), every moment of normalcy we can snatch--a few hours at the pool with the girls splashing in the water, chatting with our neighbors, soaking up the Vitamin D that

makes us happier; chasing Phin around the unit, the squealing laughter and tires of the tricycle he rides as he goes; walking in on late night games of UNO, Phin and his nurses huddled around as if at a poker table, slapping down cards and sharing stories; late night rom-coms with our girls, buttered popcorn passed between us as we burrow further into minky blankets. We are keenly aware these are precious moments. 

We cannot live any other way but to relish in and be grateful for every one of them. We keep it together because we have to. The alternative is unthinkable.

The future is too uncertain to do anything else.

-N

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.