Phinduction Round 1–Done!

 

Phincoming

Medical Updates
Phin's been in an after-chemo phase called "count recovery" or "hematological recovery" where we play a waiting game for specific types of blood cells to return to normal ranges. 

During Phin's first round of chemo (aka "induction chemo," which lasted ten days), he received cytarabine twice a day, which kills rapidly dividing cells–like cancerous ones–but also healthy cells, depleting his healthy stuff (platelets, neutrophils, white blood cells, hemoglobin...etc.) and leaving him vulnerable to everything.

(I'm pretty sure Dustin covered some of that in an earlier post.) 

Each morning around 5 a.m., my phone alerts me to his most recent blood test results posting from blood samples. I check them and watch his platelets climb a little here, his hemoglobin holding fast there. Each decimal of a number (a part of math I truly hated as a younger student) offering a similar decimal of hope that one day soon, he could come home and we could be together. Each morning, I relish that his healthy cells are recovering and will continue to recover. 

But not far behind, the cancer cells will try to recover, as well.

So, it's kind of a race for enough of Phin's healthy cells to recover in order to make him strong enough to withstand another round of chemo before the cancer cells have a chance to start producing again. 

Hence, he only gets one week at home, as long as all goes well. 

Phin on the daily
The Internet connection here at the hospital is flickering, my laptop is dying, and I'm scrambling to pack all the things that Phin, Dustin, and I have been using here for the last month. We were thrilled to learn that on the 4-6 weeks of this first inpatient round, Phin needed to spend closer to 4 weeks than 6. Dustin was also thrilled to be mistaken that it's not 10 days of chemo and then 4-6 weeks of recovery, but 4-6 weeks that includes 10 days of chemo at the start. But, still, the news caught us a bit off guard. We were expecting to bring Phin home in mid- to late-May, and it's looking instead like it will happen in late April, as in, today.  

And we’re exhausted from this last month, but Phin's energy is up, up, up thanks to his blood numbers coming back up a little. But apart from all that, I just want to say that he's such a different kid than he was even a month ago. When he was admitted in late March, he was scared, fatigued, defensive, and totally averse to talking to anyone other than his parents. Now, he's talking to the nurses, walking down the hall to hang out with them, articulating what he needs, using words like "vitals" and "syringe," and recognizing numbers in increments of 50 from 100-500 mL. 

And in the morning, for a whole week, if all goes according to plan, our boy is coming home. 

Dustin's Phindex, Month One

[March-April, 2022]

Dustin's Phindex

Units Phin received of blood: 7

Of platelets: 8

Sedations: 3

Consecutive days of chemotherapy: 10

Spinal taps: 1

Biopsies: 1

Bone marrow aspirations: 1

Bandage changes: 11

IV pokes: 3

Incidents when medical doctors who introduced themselves as “Dr. _______”

prompted Dustin to reflexively introduce himself himself as “Dr. Michael”: 3  Number of times Dustin reminded himself that, in the hospital setting, introducing oneself as "doctor"

is meant to be reassuring and to inspire confidence, as opposed to being some kind of passive aggressive

academia weird flex to indicate that one doesn't want to be friends with somebody one works with: 7

Number of times Dustin was mistaken for a medical doctor in the hospital parking lot: 1

Number of times Dustin was compelled to clarify, in the hospital parking lot, that he was in fact not

a medical doctor, only a dad: 1

Number of times someone who mistook Dustin for a medical doctor and thanked him for his hard work

revised her statement to instead thank him for being a dad: 1

Number of times Dustin informed someone that Phin has leukemia and then apologized

for Phin having leukemia: 5

And then apologized for apologizing: 4

Number of online classes taught from Phin’s hospital room that were briefly interrupted by Phin whacking

Dustin in the eye with a paddle ball: 1

Number of times Dustin logged out of teaching online from Phin’s hospital room, looked at Phin with

his uninjured eye, and said, “Unless you want to see what a real threat to your life looks like, you'd better hand over that paddle ball by the time I count to three....”: 1

Number of Starbucks sausage egg and cheese biscuits consumed by Phin: 15 Number of UberEats orders placed from Phin's hospital room: 14 Incidents involving Neesha sprinting all over the hospital in pursuit of an errant UberEats delivery driver: 1

Number of elapsed days between Phin seeing his sisters, grandparents, and any other outside friends or relatives in person, other than his mother and father: 23

Percentage of Michael/Navare family members with June 1 birthdays who are currently battling cancer: 100%

Ratio of genie wishes Phin says he would use to see animals: 3:3

To cure acute myeloid leukemia: 0:3

Number of victories in Phin’s nightly orange juice (that secretly has medicine in it) chugging contest won by Dustin, Neesha, or any of his nurses: 0

Percentage of the pediatric specialties chemo-certified nursing team that Phin has pranked with a rubber snake: 50%

Change in the Michael home's Zillow estimate since the Longs took over yard work and landscaping to help after Phin's diagnosis in late March: +$10,380

Number of days prior to Phin’s diagnosis that Dustin can remember having warmed food on plastic servingware in the microwave because he thought that doing so might cause cancer: 0

Number of days he’s microwaved food in plastic servingware since Phin's diagnosis: >15

Number of seasons Phin has binge-watched of Wild Kratts: 6

Of Muppet Babies: 3

Of Blues Clues and You: 2 Of Spidey and His Amazing Friends: 1

Puzzles completed: 6 Books read, or partially read: 10

Blanket forts constructed: 1

Factor by which Easter egg hunts exceeded tours of parked helicopters: 2

Estimated percentage of urinations after which Phin accurately reported the amount of urine

he produced (within 25 mL) without looking: 80%

Largest measured amount of urine Phin produced in a single urination event: 350 mL

Largest measured amount Dustin produced: 300 mL

Phin Phights On

“Leukemia” to me seems more like a place than a disease. I think it has something to do with the suffix -ia. 

In English, this suffix is applied to conditions that affect the mind and body (leukemia, insomnia, thanatophobia). It is appended to the root words of subjects to suggest things of or relating to them (academia, philosophia, marginalia). It is used to denote groups of animals and plants (dinosauria, mammalia, obelia). And it is used to describe regions and territories (Umbria, Georgia, suburbia). 

We are exploring Leukemia with Phin. We have barely crossed the threshold. As far as the eye can see Leukemia stretches out before us like some miserable new continent. For all intents and purposes, that is what it is. A geologist traveling through the landscape of our past month could easily point out the subduction zone where the crust of our previous lives folds beneath the annihilating edge of the Leukemian plate. 

A biologist, on the other hand, would surely note the presence of our abandoned cocoons–telltale signs that the land of Leukemia has new inhabitants, since people don’t last long in Leukemia in their original bodies. Kafka’s tale follows a man who awakens one morning as a cockroach, but when one suddenly finds oneself in Leukemia, the metamorphosis resembles that of a moth. The word "leukemia" rings in one’s ears and then the world disappears. Dangling somewhere deep inside a dark cocoon that is in fact a husk of one's former body, one melts entirely into goo, from nose to toes, every particle, except for the one that trembles and the one that shrieks.

Eventually from this ragged shell a new thing emerges, untwists its pathetic limbs, dries its slimy wings, and flits feebly away into the sharp Leukemian wind. In every way is this creature moth-like: impossibly fragile, vulnerable to being crushed or swallowed or blown to pieces at any moment, but for this particular moment, capable of filling the niche ascribed for it in its doleful habitat. It flaps its papery wings and up it goes, fading silently away into a terrible sky full of so many perils and so many other little moths. 

But more on Leukemia’s fauna, flora, climate, and geography in a later post. 

Medical Updates 

I get the overwhelming sense that Phin’s physicians find him to be exceedingly boring lately, which is the best possible report I can give. 

They file into his room each morning to talk about his chart, and a minute and a half later, out they go. Low-but-not-lower-than-expected white blood cell counts. Predictable platelet levels. No fevers.

Boring. Boring. Boring. 

There was one exciting episode since my last entry that I will never forget, one of horror. I will not render this scene in too much detail here (for your sake, and for mine), but it happened when Phin had a reaction during an infusion of platelets. By chance, I caught the beginning of it on video. It started as Phin was receiving his weekly visit from Bailey the comfort dog.

Platelet reactions are not uncommon, I’m told. The horror of the moment was the result of the whole surpassing the sum of its parts. Something about the combination of the incessant machine beeps and bloops and the notes of sudden gravity in the nurses’ voices, the eruption of mountain ranges of hives all over Phin’s body and his screams that he couldn’t swallow, and the way he clawed at the hives on his scalp while tufts of his hair swirled like bits of a blown dandelion…. 

As I type this, it all seems kind of minor. Phin has been in far greater danger in the past four weeks, and his nurses even reminded me at the time this was all happening that his screaming meant that his airway wasn’t closing.

Still, I was shaken. Phin had a reaction, but I had an overreaction.

Anyway, within an hour, Phin was back to whatever counts as normal up in here, and he’s been boring AF to his doctors ever since.

I even made a joke about it to one of them. It wasn’t a good joke, but it still makes me really happy because it suggests something of my pre-my-kid-has-leukemia sense of humor is still in there.

The doctor said, “Looks a lot better now that the hives went away.” 

And I said, “Right? You guys got him looking like Dr. Jekyll again…instead of Mr. Hives.” 

Then the doctor was like, “Oh, I see. You made a play on words there, didn't you.” 

And I smiled and put two thumbs up. I’m not sure why. I guess for myself?

And that’s when the doctor left the room.

Phin On the Daily

If you live in a place that has lots of pine trees, you know that while the ground looks like it’s covered only in grass, closer inspection often reveals that it’s thinly blanketed by pine needles. 

That’s like the horizontal surfaces in Phin’s room, except instead of pine needles it's his hair. 

The sheets were the tipoff. Phin gets new sheets put on his bed every night, and every morning we discover the evidence of the efficacy of Phin’s chemotherapy drugs, which were designed to attack rapidly dividing cells like the ones found in cancer and, unfortunately, in hair follicles. 

If his hair was falling out prior to four days ago, we didn’t notice. But we do now. It’s like the tail of a comet as Phin zooms around the galaxy of his hospital floor. Perhaps little bugs living in the floor tiles make wishes on them as these shooting stars drift down into their worlds.  

When this is over, Phin, we're going to
have a conversation about that thumb.

Though he is noticing his hair loss, he doesn’t seem very upset about it (yet). In fact, nothing really gets Phin down lately. Now that this first round of chemo has concluded and he’s rested for a few days, Phin’s moods and energy levels are through the ceiling. To paint from Phin’s animal-themed palette, he has become a cheetah: He is capable of short bursts of incredible speed and intensity, but he has to rest between sprints. When he’s in sprint mode, he careens around the pediatric specialties unit on his bike, pummels his inflatable punching bag with impressively long combinations of strikes that all demonstrate truly poor technique, and plays pranks on his nurses with a rubber snake. When he’s in rest mode, he draws pictures, plays with toys and puzzles, looks at books, watches cartoons, and snoozes. 

In closing, I'll add that he had a really good Easter. He hunted eggs and got a surprise visit from his family, whom, with the exception of Neesha and me, he hadn't seen in almost a month.

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. 

Phintastic News!

Quick medical update on Phin: He had his lumbar puncture (aka spinal tap) on Tuesday, Day 8 of chemotherapy. The results popped up in our MyChart app that night but we had to sweat it out til morning, being unable to interpret them ourselves. (Note to self: become fluent in the language of lab result abbreviations and jargon.) The news is good. His results show that his spinal fluid is clear of cancerous cells. I repeat: NO cancer in Phin's spinal fluid.Whew, amIright???

It's a small buoy of relief in a sea of cancerous treachery, but it does have the effect of feeling like we've been thrown a life jacket. We swim slowly, steadily on.Thank you for your prayers and good vibes and all the other positivity you're putting out into the world for our boy. I leave you with a photo of Phin from last night...

Photo of Phin in his new leopard pjs with his giant box
of goldfish and several animal friends: sloth, hyena,
two cougars, a rendition of our doggie Sundae and hyena.

Love-N

Phin, Phear, and Phinding a Rhythm

Hey Phin phans! Dustin here.

Sorry if I seem a little tired in this one. It's been almost two weeks, but I'm still getting used to the new routines. It's like the motions of our lives have fallen into a kind of celestial rhythm. At least, that's how it seems to me, and how it must seem to our kids. We see them in shifts now since the hospital only allows two visitors and it always has to be the same two. The girls receive our dusk as Phin receives our dawn in an endless cycle. And like the sun and the moon, Neesha and I now rise and set in opposition to one another, seldom sharing the same sky, and never for long.   

Medical Updates

Phin organizes the beads he earns for
accomplishing treatment-related tasks.

Chemotherapy is finally tanking Phin's energy levels, just as the doctors predicted it would. He doesn't feel like doing much of anything lately, and he's sleeping more frequently and for longer durations. The bleeding is still a thing, and so is the vomiting, but overall, his spirits are still up, his attitude is still positive, and his moods, for the most part, are still good. 

There was a scare several nights ago during an infusion of platelets. I didn't realize anything was happening at first. I'm still learning how to recognize the cues in leukemia world. It was like the moment in a play when you notice that the entire cast is onstage at the same time, and you understand that the sheer number of characters present indicates something important is about to happen.

One minute, Phin was happily watching an episode of Wild Kratts, and the next, his teeth started clattering, his temperature shot up, his pulse raced, and suddenly every nurse on the floor was in his room and the lead nurse was phoning down to the attending physician. All of these people were in their places before I even noticed anything weird going on with Phin or his vitals.  

We still aren't sure if Phin had a reaction to the platelets, to the new chemotherapy drug that was added to his treatment that day, or to the leukemia. Whatever it was, it made for a scary scene while the team tried to figure out what was happening with Phin and what to do about it.  

Phin On the Daily

The hospital has a courtyard that's been converted into a playground. Phin says it's boring because there's nothing to climb on or slide down, almost as if the place was intentionally designed to minimize risk and prevent injuries. But boring or not, it was nice weather today and we convinced him to go just to get him outside a little. 

A child life specialist led us there and gave Phin a bubble pan and a wand. In his current state, with his messed-up blood levels and chemo and cancer coursing through his veins, Phin gets exhausted pretty quickly. After about 10 minutes, he asked to sit down on a bench. Then he threw up on the sidewalk. One of his nurses was summoned to help return him to his room. 

"No," Phin said, pointing to the puddle of vomit below him. "We have to clean that up." 

"We'll take care of it," the nurse said. "Don't worry about it."

"No, no we have to clean that up now," Phin said. "It will be bad for the animals." 

"The animals?" asked the nurse.

Phin nodded, shuddering that convulsive nausea shudder and wiping his mouth with his sleeve.

A towel was retrieved, the puddle was removed, and the safety of local wildlife was restored.

But before that happened, Phin enjoyed a solid ten minutes of playing outside like he used to do. I'll close this entry out with some shots of him having fun.