Saturday, July 23, 2022

Dustin and Neesha’s Phindex, Month Phour


Units Phin received of blood: 2

Of platelets: 2

Days of chemotherapy: 4

Sedations: 1

Bone marrow aspirations: 1

Echocardiograms: 1

New CVC line placements to replace the one that cracked: 1

Shots: 2

Bandage changes: 5

Total number of days from first chemotherapy induction in Round 1 to final dose in Round 4: 113

Number of years since the phrase "He shows up" was introduced in Sesame Street as the tagline for Super Grover 2.0: 12

Number of years since "We Show Up" was first used in branding for Phin’s current hospital's network: 1 


"We Show Up" banner on a parking
structure outside Phin's window
Number of years before the concept of "showing up" shifted from a sarcastic way to signal a character's questionable usefulness and dubious qualifications, to an earnest assertion of superior standards of competence and professionalism: 11

Number of times Chuck Mangione's jazz-fusion hit "Feels So Good" will play during a one-hour hold period with Accolade Health: 6.3

Position at which "Feels So Good" peaked on the Billboard Hot 100 charts in 1977: 4

Temperature at the North Pole when Santa Claus visited the Children's Hospital for Christmas in July event on July 15, 2022: 64 °F

Difference between outside high temperatures at North Pole and Children's Hospital on July 15, 2022: 21 °F

Number of days that the giant nutcracker balloon from last Christmas remained at full inflation in a corner of Dustin's office: 210

In a hospital room with Phin: 2


Factor by which half-deflated giant nutcracker balloon has spent more nights in July in the same room as Neesha than Dustin has: 4

Estimated number of times Phin has mentioned that in addition to growing up to be a zookeeper and a nurse, he also wants to be an evolutionary biologist so that he can bring extinct animals like dinosaurs, saber-toothed tigers and dodo birds back to life: at least once every time someone new enters the room every day since he learned there was an actual job title for people who bring back terrifying, extinct creatures

Number of feature-length Jurassic Park films that question the wisdom of this idea: 6

Times Phin insisted on telling the story of the “Jesus Roach” (aptly named for the girls’ discovery of a massive cockroach crawling over a crucifix on the wall of the room they were isolated to during their Covid bout) since Round 4 readmission: 11 

Number of days since Phin was readmitted for Round 4: 11

Length in feet of the new big boy bed Phin has requested for when he returns home: 40

Number of new stuffed animals added to his animal “crew” by loving neighbors and nurses, which he lies in bed with worrying he will not be able to fit them into the 40-foot bed he has requested we procure to accommodate them: 5 


Friday, July 22, 2022

Phinishing Chemo Pt. 2

Phin received his last scheduled dose of chemo. 

Phin and Caroline pose for a celebratory post-chemo photo.

It’s a milestone. 

I think that cancer is such a widespread and ubiquitous affliction that it isn't necessary for me to go into great detail about the rigors of chemotherapy. Almost everyone has either had firsthand experience doing chemo or has had a friend or loved one who's had to do chemo and therefore knows how it ravages the body and feels horrible. It's a leading cause of CR-PTSD in cancer survivors. Mere exposure to it is an occupational hazard for healthcare professionals. It's life-saving poison. Etc.

Anyway, Phin had to do a lot of chemo. But now it's over. 

Hopefully, for good. 
   

The cherry atop his final chemo sundae was a needle stick full of a drug called Rylaze.


And then it was time to break out the shirt. 

Through all of these rounds of chemo, Phin's numbers have gone up and down (a relief to know that the medicine is doing what it's supposed to do), and his energy levels and moods have bounced around a bit, too. His sense of taste has changed, as most anyone who's had to do chemo will attest is a thing that happens; he's off sweets but really digging savory and salty. He can't tolerate the heat outside for very long (but lately, who can?). His hair got pretty thin, but he's kept a little bit. So far, he's refused to let us buzz it or trim it up. 


But if that's all there is, we'll take it with gratitude and gladness. We won't know for some time (perhaps a very long time) the true toll that the chemo took on his cells, tissues, organs, and systems. All we can do in the meantime is to hope that the damage to Phin himself is temporary and minimal, and to hope that the damage to Phin's leukemia is irrevocable and absolute. 

And, of course, to celebrate while we stay in the hospital for another 20(ish) days as he recovers! It's been a long journey since these treatments began in March, but he got through it, and we're so proud of him.





Tuesday, July 19, 2022

Phinishing Chemo Pt. 1: Repetitions, Variations, Symmetries

Phin and Molly point to a sign on 
his door announcing his final chemo
admission.

Dustin here. I'm writing this on the morning of Phin's penultimate day of chemotherapy. 

He'll still be in the hospital for another twenty days or so this round, but as far as the chemo goes, this is supposed to be it. He got some chemo yesterday evening. Today, just before dawn, he'll get some more. In the evening, he'll get even more, and then, in the wee hours of tomorrow morning, the nurses will hang his last bag and administer a shot that will make him cry, and then the chemo will end. 

And then we'll wait. 

Like the last time I posted, my thoughts are kind of all over the place. Here are some of them:
  • The maxim, "How do you eat an elephant? One bite at a time" keeps coming up, although hopefully not within earshot of Phin because he would hate the idea of an elephant being eaten. It's usually said (sometimes by me) in reference to where we are in his treatment and how we couldn't imagine ever getting this far when all of this started. 

  • I underlined the passage, "Fate is partial to repetitions, variations, symmetries," in a Jorge Luis Borges story I was reading the other day. It appeared in a book that arrived just after we moved Phin into the room on this pediatric oncology unit that had until very recently been occupied by one of his fellow leukemia patients, a child beloved by many, who doesn't have to fight anymore, who had completed the final chemotherapy treatments, pounded the disease into remission, and gotten back to being a kid, only to have the cancer surge back again a year and a half later armed with an indignant awareness of the medicines that had been used on it before. 

  • Feeling that occupying this particular room would be emotionally unbearable, Neesha and I initially requested a different one, but no sooner had the move been arranged than Phin refused to go. "You aren't even unpacked yet," we pleaded, "and you can't have gotten attached to this place so quickly." But he was resolute in his intentions to stay, in a way that shocked and disquieted us. He had only ever been in here once before, momentarily, for its previous occupant's birthday party. He had been eager to swap rooms every other time it had been suggested. "No," he told us this time, "I don't want to go anywhere else. It feels good here." 

  • This anguish is not mine to feel. 

  • But I feel it. 

    The chemotherapy drug ARA-C drips
    into Phin's CVC line.
  • As more newly diagnosed patients arrive and Phin's time as an in-patient fixture at the Children's Hospital nears its end, I am noticing that the way I conceptualize my life is changing. I used to imagine myself like a little astronaut drifting slowly, silently, far above the planet, doing all sorts of little tasks of maintenance and documentation, exchanging little electronic messages with people far away, all while tethered to an orbital space station shaped like my house. But now, instead of that, it feels like I'm part of some enormous chain. Maybe it isn't a chain. It might be like a giant piece of fabric or something. I don't know. It doesn't feel like drifting through space anymore, though. It feels like my life and my family's lives have become part of this much bigger thing because of this cancer. Like we're connected to the ones who found themselves here before us, and connected to the ones who are here beside us now, and that we will all somehow be connected to the ones who will arrive later.
  • Twenty days—the estimated length of Phin’s remaining inpatient visit—is more time than many people will spend in the hospital in their whole life, cumulatively, much less all at once. And it used to seem like a long time for Phin, Neesha, and me, too. But people are saying things to us like, “Wow, you guys are almost out of here!” and we’re like, “Right?! Can’t believe it’s so soon!” and being 100% sincere about it.

  • Some good news is, the coffee machine in the parent kitchen is working again. It's "the People's Coffee Machine," according to my buddy Mike, whose daughter shares the same extremely-rare-in-children type of leukemia with Phin, is close to Phin's age, and is Phin's dear friend. Mike will bolt a full cup of coffee straight from the nozzle without taking a breath, and the machine spits it out at approximately the temperature of molten lava. I told him he was pretty hardcore for that.

  • Mike informing me that he puts ice in the cup first instead of just letting me believe that he chugs boiling hot coffee like it's no big deal was, in a way, also pretty hardcore. 




Thursday, July 14, 2022

Christmas in July for Phin

The patient all snug in his bed with visions of
 animals-with-Santa-hats frolicking in his head.

In normal life, I've always loved a good theme--Senior Seventies night, a Mean Girls party, Av's HP birthday party and Obelia's "Bow" (hairbows and bowties) parties spring to mind as some of the most epic ones, but I've lamented the lack of "theme" parties for Phin. It's not because I didn't want to throw him an epic "party animal" theme party, in fact, we'd planned to have his third birthday party at Oatland--even booked the date--when Covid struck and we were all mandated to stay home (I called Oatland on the off-chance they'd let us come anyway, but they're total rule followers, which, if I'm being honest, I am, too). But between Covid and cancer, Phin has spent about seven months outside of our home in the "real world". 

Read that one again:

Only, at most, seven out of approximately 61 months of his life have been spent outside of our house--going to school, playing with other kids his age, kicking a ball on a soccer pitch, and just being a normal kid. Wow, right?

So when I rolled up to the Pediatric Special Unit wing on Tuesday to swap out with Dustin, and was told by one of our favorite nurse's--who just so happened to be wearing Christmas-themed scrubs--that the rest of the month had been declared "Christmas in July" month, you better believe she had to say no more before I began calculating: 

1-how many Christmas decorations I could uncover from the depths of our "holiday decoration closet" in the less than 24 hours I'd be home next, 
2-how many Christmas decorations I could manage to inconspicuously cart into the hospital in one of the little red plastic wagons in the lobby, and 
3-how many actual decorations I could put up in his room before they declared it a legit "safety hazard" 

A surprise visit from sisters, cousins and Aunt Sara!

No Christmas is complete without lights and a tree.
Phin was tired today upon my return with my cart full of decorating goodies--almost too tired to have a very quick outdoor visit with his sisters and cousins (who drove all the way from Florida to surprise him), but when we got back to his room, we were reminded that Santa Claus is coming tomorrow and he told me, before falling directly back to sleep as soon as I lowered him back into the bed "Mama, we really need to get to work". Far be it for me to disappoint so without further adieu, I present to you, Phin's Christmas in July wonderland.
Big Monkey Johnny ready for Santa.




Phin decorates a snowman for the Playroom.

The stockings were hung...


He's currently sleeping in his Christmas pajamas with his Christmas blanket and his Christmas Hippo (who, for the record, sings "I want a hippopotamus for Christmas" while wearing a Santa hat), but as he lay down for the night, after sleeping most of the day, a helicopter chopped its propellers outside our window, lowering itself onto the helipad just a rooftop away in our line of sight. I pulled the shade up to see it descend, its red and white lights flickering as it did, and said "Look, Phin, that helicopter is landing up there! Do you know what it's doing?" In his chemo-induced, sleepy-five-year-old-voice, eyes fluttering shut in the glow of the Christmas lights he whispered, "Maybe it's bringing Santa Claus." 

And for a minute, in the glow of the Christmas lights, and the cheer of the decorated room, under different circumstances, I could've believed that outside it was cold and that vision of red and white in the distance was really a sleigh. I turned away from the window to the tick-tick-tick of the IV hydrating my little boy who'd fallen asleep before I could say, "Or maybe it's saving a life."

Wednesday, July 13, 2022

Beginning Round Phour

Hi Phin phans! Dustin here. I'm a little bit all over the place with my thoughts right now, and my feelings-those are like what happens when you put a bunch of charging cords and cables in a box and they turn into a huge, jumbled wad, with everything all twisted up and knotted together. 

But I wanted to give a quick update at the start of Phin's fourth chemo admission so here goes. 

Medical Updates Phin got the all-clear to return on Tuesday, meaning that his counts were high enough that he could check back into the Children's Hospital and immediately start another round of chemotherapy. This round involves four days split into pairs—Days 1 & 2, and Days 8 & 9. He'll get chemo every 12 hours for each of those days, and in-between and afterward, he'll rest here at the hospital and recover his counts. The target for the length of this round is 29 days.

Also starting up againsteroid eye drops every six hours. Just on chemo days, though.

Phin On the Daily It really seems to be slowing Phin down this time.

Someone on his healthcare team described it in running terms. "It's like when you're training for a race," she said. "You run a mile, you're feeling good. You run two miles, still strong. Then you decide you're going to do four miles, and you can still do it, but you're not feeling as fast or as strong as you were on mile one."

He's sleeping more. Lying around more. Throwing up more. I asked if the main chemo drug (Cytarabine, or Ara-C) is in a stronger dose this time, but apparently it's not. He's just been running this chemo race for a long time now, and his body's tired.

Anyway, he's about to get a little reprieve for a few days. Hopefully he'll feel better going into Days 8 & 9.

Finally, here's our "how it started vs. how it's going" attempt to recreate a family picture from four years ago moments before we packed everyone up and drove Phin back to the Children's Hospital. Thanks to Heather at Heather Cahoon Photography for taking the gorgeous shot of the kids when they were younger.


Friday, July 8, 2022

Round Three Phinished, Home Again

What's up, Phin phans! Dustin here with an update. Here we go!

Phin leaves the hospital, still feeling a little 
weird from that morning's anesthesia.
Phin is home for a few days while his counts recover after his third round of chemotherapy. This round lasted 29 days. 

To be clear, he wasn't receiving chemotherapy that entire time. Like always, he got blasted with chemo every twelve hours for a sequence of days at the beginning (five, this time), and then he stayed in the Children's Hospital for 24 more days while the effects of that played out in his bone marrow and blood. He's scheduled to return for his fourth round on July 12.

The big unanswered questions from Neesha's update last week are, what happened with the girls and Covid, and did everybody get it? By some miracle, both of the girls only ever had mild symptoms. Neesha confined them both to a bedroom, cared for them until last Friday when they both produced a negative test, and somehow managed not to become infected herself. She had the harder job, for sure. I was holed up far away, binge-watching Ted Lasso in an N95 across the room from Neesha's brother, Kiran, who, like me, had been exposed to Covid from the girls, but not for as long. Both Kiran and I tested negative for enough consecutive days that Phin's doctor eventually allowed me to return and tag out our hero, Aunt Seale. 


All of this probably seems like a lot of trouble, and it is. It's a lot of risk assessment, a lot of cleaning, disinfecting, mask-wearing, and shuffling people around. A lot of sad austerity measures and restrictions that take the form of canceled kiddo sleepovers and turned-down invitations. After Phin's second round, we were hiding from influenza. This time, it was Covid. Those two viruses are just the famous ones, though. We recognize them like we would when the camera zooms in on a celebrity couple at a sporting event. We see these famous faces in the stands, but when it zooms out they're instantly lost among the teeming masses. 

As far as microscopic pathogens go, viruses get a lot of attention--so much so that in English we make a linguistic association to them with anything that can be quickly reproduced and distributed. "Going viral" does have a better ring to it than "going fungal," or "going bacterial," or "going protozoal," but fungi, bacteria, and protozoa all occupy the microscopic world alongside viruses. There are untold trillions of these pathogens, and each will readily exploit any opportunity to colonize new territory.  

The middle of the 19th century brought a shift in the way we think about Nature, as the Transcendentalists helped to reposition the wild outdoors as a source of serenity, balance, and sublime beauty instead of a place of physical and spiritual danger, the dominion of beasts, evil spirits, and demons. Many of those ideas are still with us, and rightfully so. Nature can indeed be sublimely beautiful and restorative, which makes it easy to forget that it's also a war zone. 

Sign at Oatland Island Wildlife Center that
explains types of forest succession.
Often what we call balance is an illusion created by a host of competing organisms locked in a desperate struggle for space and resources. There is a section of Phin's favorite place, Oatland Island Wildlife Center, that illustrates this. It's called the Tornado Trail because several years ago a tornado tore through part of the forest located on the grounds, ripping apart established trees and leaving a swath of destruction that was eventually cleared and designated as a new walking path for visitors. Signs near this trail describe the natural process of forest succession, where plants take advantage of disruption and establish themselves in newly available spaces. 

Something like this process also happens in the wilderness of cells. For most of us, an army of white blood cells stands at the gates. When we dive into a freshwater lake or river and our organs aren't subsequently devoured by amoebas, or when we scrape our knees on the pavement and we don't get sepsis, we have these tiny heroes to thank. They dutifully fend off endless assaults from legions of mindless invaders. But should they fall, into the breach these enemies would pour, driven on by a principle of nature that applies to every creature from the tiniest sporazoa to the tallest redwood. 

Phin, who spends a month at a time in a hospital room trying to rebuild his white blood cell fortifications, will tell anyone who asks about his eagerness to get back into nature and to be around creatures. The thing is, he never left nature--none of us have--and there are always billions of creatures nearby, too small to see, but doing exactly what creatures do.  

Phin's new CVC
Medical Updates
At the end of his most punishing and intensive round of chemo yet, Phin's weight, energy levels, appetite, and moods all seem normal. Finally. It took longer for him to bounce back this time than it did for his previous rounds, and weirder stuff happened along the way. For most of the first half of June, his back was a topographic map of scabs and bruises, the result of a reaction he had in the first few days that made his skin erupt in itchy hives all over his body. He also managed to crack his CVC somehow, so that had to be replaced with a new CVC on the opposite side of his chest. There were stretches of days when he only wanted to stay in his room, either because of the chemo's lingering effects, the sweltering daytime heat at the playground, or the tendency of outdoor humidity and/or his own sweat to make his bandages peel off. When the dressings peel to within an inch of the site where the catheter enters his chest, the whole patch has to come off and get changed. Phin hates it when that happens. He reports the peeling bandages diligently and bears the dressing changes with true courage, but hates them nonetheless.      

The latest report on Phin's bloodwork is from July 5, and it indicated that his white blood cell, platelet, and neutrophil counts were all creeping back up toward normal levels. Who knows what they're doing now, though. Phin's physicians had suggested he might be stable enough to be discharged the previous week, but then his numbers suddenly dipped. Then they crawled back up a little. Then they dipped again. And so on. Up and down like that until finally they achieved a threshold that allowed him to leave. But they could be plummeting at this moment, as his body continues to respond to the poison it received a month ago. It is entirely possible that his scheduled return to the hospital for more chemo next week will have to be delayed in order to allow his system to further recover.     

Phin On the Daily
There was only one thing on Phin's to-do list this time: bats.

He wasn't specific about what that meant. Probably it was something like that scene from Batman Begins. 



In any case, we've already checked the box. 

The night he came home, we took a walk near our house on a path that runs between a small clearing and a grove of trees that separates our little subdivision from the next one. A pinkish purple summer dusk was quickly fading into indigo night and a soft warm breeze blew against the rising and falling of the grasshoppers and cicadas' REEEerrrREEEerrrrREEEEE in the trees. Phin, still a little wobbly off the anesthetic from his CVC replacement and bone marrow aspiration procedures earlier that day, rode in his old stroller. Early stars poked out in the empty sky. We were about head for home when out of the grove of trees a single bat appeared. It swooped, dove, and circled above us, then flapped away for the trees again. 

"Wow!" Phin said. 

We watched the tiny bat disappear into the darkness. Phin was overjoyed. He said he couldn't wait to tell mama. 

"We saw it!" he said. "I can't believe we saw it!"

I turned the stroller back up the path and started pushing it back toward the house. 

"So, what do you want to do next, now that you've seen a bat?" I asked. 

"Anything!" he said. 

Thankful

H i Phin phans! Dustin here with a quick update on Phin. This is the end of Thanksgiving week, and we have a lot to be thankful for this yea...