Twelve Days Post BMT

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

Milestones

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

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

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

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

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

Medical Updates

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

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

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

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

Phin On the Daily

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

Here is a sample transcript:

"Bro! Where are you?"

"Bro! I'm over here!"

"Bro! I can't find you!"

"Bro! Go this way!"

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

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

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

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

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

Dear Donor

May 31, 2024

Dear Donor,

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

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

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

Dustin at 26 years old

Neesha at 26 years old

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

Phin observing animals at the zoo

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

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

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

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