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.