Phocusing on Phin while Phriends run Phinterference

Hey Phin phans! Dustin here.

I'm with Phin at the hospital now. He's still sleeping. He's been sleeping way later than he used to lately, probably because his body is worn out from all the chemo. But that's done for now. When he gets up, we're going to try to finish coloring these pictures of Easter eggs we started yesterday. He wants to hang them up in here and have Neesha find them like an Easter egg hunt. I'm all in for that.

Meanwhile, here's what's been going on.

Medical Updates Over the weekend, Phin completed his tenth and final day of his first round of chemo, aka Induction One. During Induction One, he received chemo through his cvc line every twelve hours for ten straight days, and he took it like a champ. The game now is to rest, recover, report, and most importantly, reduce the risk of infection. 

It’s a hard point to make in a world exhausted from a pandemic, but for immunocompromised cancer patients like Phin who’ve just emerged from chemotherapy, the primary danger isn’t dying from cancer; it’s dying from some crappy little bug that one of us unknowingly brings home and carries to him. Covid, of course, yes, but also normal stuff like strep throat or stomach flu could be lethal to him. To help diminish that risk, Phin now advances into a four- to six-week period of inpatient monitoring and recovery, after which, if he’s doing well and his counts are up, he might be allowed to leave the hospital for a few days. 

There’s a little girl in the room next door who received her acute myeloid leukemia diagnosis in January, so she’s a little ahead of Phin. Her parents said she got to go home for ten days between rounds. The doctors remind us that every patient’s treatment is different, but if Phin’s goes as well as the girl next door’s went, he’ll go from ten days of chemo into 4-6 weeks of monitoring in the hospital, and then he might get a week or a week and a half at home. Then he’ll come back to the hospital for ten days of chemo, a month and a half of 24/7 monitoring in the hospital, a week or so at home, repeat, repeat, repeat, repeat–if everything goes exactly right.

If it doesn’t go exactly right, or if they can still detect cancerous blasts in his blood in like 2023 after all those rounds of chemo and recovery in the hospital, Phin will require new marrow and new miracles. Then, assuming he gets those and everything also goes exactly right, he’ll start the whole multiple-round-chemo-and-recovery sequence all over again.

But–and I can't stress this enough–if he picks up an infection, aka some crappy little illness we carry to him, it will almost certainly mean he has to stay in the hospital for even longer.

And it could mean game over. 

Phin On the Daily

Our hero has entered a phase where he probably resembles one of your old devices–maybe a tablet or smartphone from a few years ago. He gets plugged in and charges for about 23 hours a day, and he can go for about 1. 

Exactly when that one hour will arrive is anybody's guess, and with as much stuff as they’re doing to him, it’s impossible to guarantee that it won’t coincide with a blood draw, a dressing change, a platelet infusion, or some other necessary procedure that requires him to be in his room and to remain relatively still. In this way Phin is caught in a conundrum common to retirees, wherein he finds himself with an abundance of free time for fun and play, but he is hindered by a scarcity of companions, a preponderance of medical obligations, and an energy flow that has been reduced from a roar to a trickle. 

Nonetheless, occasionally it works out that he’s energized and his schedule is clear and the weather is good and a child life specialist can be summoned to escort him to the little playground outside where he can run around and climb on things that he probably shouldn’t climb on and just be a regular four-year-old again for a few moments until he runs out of power and bobs and whirs and drifts to the ground like a drained little toy drone, and we gently pick him up, carry him inside to his room, lay him in his bed, and plug him back in. 

Meals and Merch

Two ideas many of our friends had right from the jump came to fruition in the past couple of days, as some of the dust from the initial devastation of Phin’s diagnosis finally settled and we got a clearer picture of what our immediate future might look like. And also as our friend Betty Canfield Riner learned what was going on with us, ended her self-imposed social media exile, and just started doing all kinds of things. 

One thing we have now, thanks to Betty and Heather Bright Cowart, is merch in the form of t-shirts and magnets that incorporate the two Phin-omenal designs created by Carrie Denae Lloyd and Terri Foote. Here’s a link to the form. Please be aware that so far these items are only available in Savannah, where we are. At the moment, as I understand it, we aren't able to ship them. We will let you all know when we are. These items are now available for shipping.

The other thing we have, thanks to our friends Mallory Myers and Anne Beckman, is a meal train site, which you can find at this link. Phin’s two older sisters are particularly appreciative of this development, as some of you who have had the extreme misfortune of experiencing my cooking attempts no doubt understand.

A Few Other Notes
I am coming to realize that cancer–Phin’s cancer specifically, but probably all cancer and perhaps all illness–blows open the chests of the sufferer’s caregivers and lays bare not only their emotions, but their character flaws, scattering and exposing them in strange and unexpected ways. The meals and merch section above was hard to write. It has been hard for me this entire time to accept all of the wonderful things people are doing for us. I had assumed this was because I was a humble and unassuming person who was disinclined to impose himself as a burden on anyone. But now I think that was not it at all.

The food, the donations, the gifts, the messages of support from the ends of the earth from friends old and new–all this brings towering waves of gratitude crested with a foam of guilt. So does the fact that our yard looks far, far better than it has at any point since we moved in, to the point that I barely recognize it since it has spent several weeks in the care of our loving neighbors, the Longs. These are only a few examples. I have felt so, so grateful, and also somewhat wracked. 

The other night as Phin slept, I confessed these feelings to one of Phin’s nurses as she checked his vitals. It was not her job to receive this whispered confession, and I knew that, and it contributed to my guilt spiral. Now I’m dealing with that on top of all the other stuff, too. But she did tell me something.

“None of this is really about you,” she said. 

This articulated what several others have been trying to tell me in recent days, that everyone is only trying to clear away the obstacles so that Neesha and I can focus on Phin and his recovery. It is a very simple and obvious logic, but sometimes it gets swept away by all of the emotion swirling around. For me it does, anyway.

I looked at Phin, asleep on his hospital bed, his tiny hand on his pillow, his face lit in soft rose hues by the glow of the pulse oximeter on his finger. In that strange light, I could almost see another scrap of the dangling rubble that sometimes drops from my blasted-open heart. It was a shard that looked at first like modesty, but which turned out to be only more hubris.