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."

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 again—steroid 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.

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. 

Phin Update: The Dodging Viruses Edition

I (to exonerate Dustin and make clear who's taking guilt--it's me, Neesha) take full responsibility for what I'm about to share.

In early March before Phin was diagnosed with AML, I signed the girls up for their most favorite camp ever. Av had gotten sick last year with a severe case of mono that landed her in the hospital for a few nights and had been unable to complete the camp. For a ten-year-old, who'd landed herself a sweet speaking and singing role at camp in her first ever show, it was devastating. Her mono, which some of you may recall, had been initially hard to diagnose since the test kept coming up negative. She'd been to Urgent Care and the pediatric ER, to the pediatrician at least twice before his concerns for her airway closing prompted him to ask the newly opened Children's Hospital to direct admit her instead of going back through the ER until they could find out what was wrong. They determined, despite the negative test, that she did have mono, the rapid test was "trash" and she had some of the most extreme symptoms they see: enlarged spleen that caused back pain, high fever, extreme weight loss, enlarged tonsils that were being kept from closing off her airway by a steroid. They were in discussion about an emergency tonsillectomy. It was bad. The whole thing, at the time, was pretty traumatizing for her and for us (little did we know it was just a warm-up) and, truth be told, she had some PTSD and lingering effects for months. (Insomnia because she was afraid to fall asleep and wake up gasping for air as she did when she had mono; lethargy that lasted through the start of the school year; so little energy and strength that she couldn't walk halfway around our lake to the pool; lots of crying from fear of the mono returning...for months after the major symptoms subsided.) She was uncertain of whether she wanted to return to the same camp she'd been at when she fell ill (despite us telling her again and again that she'd definitely contracted mono well before the camp even began). Just talking about it brought back some of the mono trauma, so when she determined back in early March to return, to set aside her anxiety and try it again, it felt like a big step in her overcoming her trauma and I wanted to encourage that momentum. 

But this was all before Phin's diagnosis or, The Before Times, and Covid seemed under control.

Av painting her way through her
mono hospital stay
Summer 2021

So she--and Obelia--returned to camp this year, and Av landed the lead role in the show. For Av, it felt like the ultimate win over her trauma from the previous year. Before camp ever began, we discussed the importance of safety not just for us, but, especially, for Phin. I told them I'd be wearing a mask around them, that they should always wear one, too. The girls worked hard on their roles at camp, diligently wearing their masks and sanitizing their hands. Av had a sort of mantra that every day she lasted at camp was one day longer than she'd lasted the year before and brought her one day closer to performing on that stage in this dream role she had earned. Obelia, for her part, was a typecast "les filles 3", laughing and smiling and googly-eyeing Gaston like a true silly girl. Both girls were cautious because they knew, in addition to keeping their brother safe, that caution alone would guarantee they'd be well enough to perform in the show.

Les Filles 3 and Belle

This decision to send them to camp--any camp right now--may have been a mistake. Hindsight is, indeed, 20-20. I believed our precautions would keep us safe. I wanted to see Av conquer her fear of returning to the camp she once loved and her trauma from her extreme bout with mono. These girls have been rock stars throughout their brother's treatment and I wanted to give them the gift of normalcy, a break away from the house their brother isn't home with us in and where they only get to see one parent a day, and each of those parents only every other night. This camp they love so much felt like the perfect way to offer them something to be happy and excited about without having to sacrifice the little bit they do get to see each of their parents. I truly thought that if only we wore our masks and sanitized our hands, we could keep us all well and let them be semi-carefree kids for a few weeks.

But this is 2022 and if we've learned anything from the last three years, it's that we cannot really keep any of us safe from anything. 

On Sunday evening, Av and Obelia both tested positive for Covid.

Both girls are doing well. Av had some congestion, which prompted me to test her. She has always been plagued with allergies so, in truth, we both assumed that's precisely what was happening but she willingly and helpfully sat for the test under the assumption it was an extra precaution (I regularly give myself a test if I'm feeling rundown or have a runny nose, too, and they've been negative since that one time in December...). Let me tell you, her positive popped up faster than a pimple the morning of prom. Obelia, with zero symptoms, also took the test and popped a positive just slightly longer than it took Av's. I was negative. Dustin, who was at the hospital with Phin at the time, was also negative. He hightailed it to an undisclosed safe haven, far away from our house, to wait out the CDC's recommended 3-5 days of quarantine after exposure; I am at home diligently catering to the two Covid Sisters who are isolated in the master bedroom with the TV, an iPad and a designated bathroom. At least one of them is trying to eat every single piece of food we have in the house; the other doesn't have as big of an appetite. They only sounded like they might kill each other once, when they had to change the sheets together because someone spilled something on them.(I cheered them on outside the door and told them it was an excellent team-building activity to embark on in their quarantine.) Their symptoms, thankfully, are very mild. As I write this blog two full days after their positive tests, I can report with some relief that Dustin and I are both still negative. Most importantly, this means Phin is, too, and neither of us unwittingly exposed him to Covid.

You must be wondering by now: but, what of our hero? What of our Phantastic Phin whiling away the hours in the hospital with nary a parent in sight!?! Well, look no further for your answer:

If you don't already know her, meet Aunt Seale (everybody say "HI, AUNT SEALE!") who happens to be the literal BEST, most fun person for a newly-minted five-year old to get 48+ hours with. She is patient, loving, amazing with kids, an incredible special ed teacher and an incredibly devoted and loving aunt to this lucky little boy. Plus, she's Covid-free (how's that for a cherry on top?). She has been in her house, slaving away on her graduate school coursework most of the summer, which means she has had no exposure to the outside world OR the viruses waiting in it. Most importantly, when I called Seale, frantic on Sunday night and began to explain the situation, she said exactly nine words: "What do you need me to do? I'm ready." (Back off, peeps, she's a catch, but she's taken.)

After a negative Covid test, a shower and a quick pack, Seale whisked off to the hospital and has been loving our pint-sized hero ever since. The relief and gratitude I feel explodes forth every moment I think of her there with him: safe and loved (which means I'm exploding all over all day when I'm not running things up to the Covid sisters and leaving them outside their door on a chair for them to retrieve AFTER I've gone back down and yell up that it's safe to open the door...with a mask on). When she gets out, be sure to shower her with love and coffees because she was thrown right in with no time to prep or adapt, and has earned every bit of love and coffee (and anything else her heart desires) that we can give her. Meanwhile, if you have her number, blow it up with words of love, thanks and encouragement. Living in a hospital is no joke. We are eternally grateful.

As for me, well, I'm facing the reality that our caution is not enough and the sacrifices we've made or asked our girls to make will only increase for the safety of our Phin.When the girls and I talked Sunday night, through the bedroom door, in addition to Av asking if we could homeschool or do virtual school to keep Phin safe in the fall (new questions of safety precautions we have to consider)--we all agreed: sacrifices we make now could help mean the biggest payoff of our lives: a healthy, homebound Phin for the long haul. 

I am keenly aware and humbled, with a great sense of guilt, that the weight of that lesson could have come at a much greater price.

Phin is still in count recovery. His body appears to have made some platelets and has "a" neutrophil  (immune system's first line of defense), so we are expecting another visit home--or somewhere else that's safe--in the near future.

I am grateful for Phin's continued protection and I attribute it to the love and support and countless good vibes and prayer of our village; clearly not to my questionable choices. Please keep them coming!

Dustin's Phindex, Month Three

Units Phin received of blood: 1

Of platelets: 1

Consecutive days of chemotherapy: 5

Sedations: 1

Spinal taps: 1

Biopsies: 1 Bone marrow aspirations: 1

Bandage changes: 6

Days hospitalized: 21

Number of stuffed animals Phin insists on having in his bed each night: 26

Number of waffles Phin has consumed: >30

Number of chocolate milks: 25

Number of days into this round before a nurse caught Dustin polishing off one of Phin's unfinished chocolate milks, as is his custom, and said, "Oh! Oh, no. We've been putting his laxative in that": 7

Days since Neesha and Dustin returned for Phin's third inpatient round to discover the coffee machine in the parent kitchen broken: 16

Number of coffee pods in the box that Neesha and Dustin deposited in the parent kitchen for the other parents to use in the Keurig coffee maker that is serving as a replacement until the coffee machine gets fixed: 48

Approximate number of minutes between there being about 60 coffee pods left in the box Neesha and Dustin brought and the box that another patient's parents brought, and there being a just couple of empty boxes: 10

Number of occasions when the thought of some fellow parent hoarding up all the coffee pods from the parent kitchen provoked Dustin to unleash a fiery tirade about natural liberty vs. civil liberty from John Winthrop's 1645 "Speech to the General Court" and how "this is exactly what's wrong with the world today" on some nurse who only came in to get Phin's vitals: 1

Likelihood that someone taking all the coffee pods from the parent kitchen is "exactly what's wrong with the world today": <1%

Probability that whoever took the coffee pods assumed that they were provided by the hospital, not by other parents, and thought, With as much as I'm paying for this hospital stay, I'm grabbing all of these. They're lucky I don't take the furniture": >0%

Number of times before now that it has occurred to Dustin to wonder who provided the coffee that went in the coffee machine he used untold dozens of times before it broke several weeks ago: 0

Portion of days during Phin's current inpatient visit when housekeeping personnel were unable to perform their duties because a blanket fort had rendered large sections of his room inaccessible: 1/8 

Approximate number of laps that Phin takes around the pediatric specialties unit on his bike each day: 10

Percentage of the five games of Battleship Phin has played in which he adopted the curious strategy of arranging his entire fleet horizontally in the middle with no empty rows between the ships: 80 

Number of seconds of awkward silence after Dustin said, "Hey, whoa, you can't come in here and pull your cock out," after Neesha entered the Children's Hospital playroom, reached into her bag, and presented Phin with a stuffed toy rooster: 5

Ratio of people in the room, including Dustin, who were amused when Phin's concern about his bandage peeling up was judged to be unwarranted by his nurse, Frankie, which prompted Dustin to blurt out, "Frankie says relax": 1:2  

Portion of doctors, nurses, patients, and med students present who even acknowledged that anything had been said when, one morning during rounds, the attending physician remarked that Phin's room with its many stuffed animals looked like something out of the film Zootopia, and Dustin said, "This isn't Zootopia. It's Zookemia": 1/6

Percentage of leukemia in Phin's bone marrow at the end of round 2: < 1%

Probability that Phin will still need to complete all of his scheduled rounds of chemotherapy and count recovery: 100%

Phin's Progress Explained (Kind Of)

Phin performs a procedure on a

"patient" in the Children's Hospital

playroom under the supervision

of Child Life Specialist Kylee.  

Hey there, Phin phans! Dustin here with an update on Phin from the middle of his third round of chemo and count recovery. More on what that looks like in a moment. 

When Phin first went into the hospital and got diagnosed with AML, as soon as I could pull myself together a little, I went on a long walk with our neighbor and good friend, B________, whose son fought leukemia into remission several years ago. I was having trouble putting the experience and all of the associated feelings into words. The two of us walked several miles together that day, and as we talked I was reminded that with cancer, there's often a wide gulf between the technical and the abstract. I found myself in that gulf. I could parrot the oncologists' explanations of the science of the disease and its effects, but since I'm not a medical professional I wound up giving hollow explanations and hoping that my friend didn't ask any specific questions. Or I could forge a comparison and talk about how it's like something else that I've experienced or observed. 

But cancer isn't really like anything else. It's only like cancer. 

On our walk, B________ and I compared our cancer field notes. Hers were much, much more extensive than mine. Her son had fought a different kind of leukemia than that with which Phin had just been diagnosed, but the language of leukemia was common even if the dialects differed slightly. We talked about blasts and platelets, about CVCs and bone marrow aspirations and transfusions and transplants. But eventually, inevitably, we veered into metaphor territory. I needed her to help me process what it felt like to have a child be diagnosed with a disease so terrible and deadly.  

"I feel like I've been blown apart," I said. "My whole body aches and my feelings and my thoughts are all over the place. It feels like I'm picking up little bits of myself and trying to fit them back together but they aren't going back together the way they were." 

B________ nodded. 

"It's like suddenly having to be really good at something you haven't been paying attention to or practicing, and knowing as you do it that your child and your family's well-being depend on it." 

"Yes," I said. "Like, go and do a sport, right now, where you have to win, and your opponent is fast and ruthless, and your team is depending on you, and also it's the championship game, and you've never played this sport before."   

"Yeah, or 'Here, land this plane,'" she said. 

On and on like this as we walked. Sometimes, when explanations and comparisons failed, the silence was broken only by the sounds of our footsteps and my occasional sobbing. When we finally arrived back at her house, her son, who has survived leukemia, came out and hugged me. As I turned to walk back to my own house, I glanced back at the two of them. I had no comparison to make for their bravery and perseverance, but suddenly I did have a goal.  

Phin being a total champ about

taking his every-six-hours

eyedrops.

What I have realized since then is that while there is still nothing comparable to cancer or watching a loved one fight it, for me there's much less agency involved than I ascribed to myself in my opening salvo of metaphors. All of the heroic sports moves and piloting is done by the nurses and physicians. 

Right now, it all feels more like a boat ride through total darkness. There's the sensation of movement--possibly even forward motion--but it's impossible to see what's ahead. Are we passing under branches with dangling serpents? Scraping hidden rocks? Drifting toward a waterfall? Each morning, a daily labwork report sounds the depths, but aside from that and the vague sense of momentum, the rest is darkness and silence. 

Medical Updates
This round, Phin had chemo every 12 hours for five days, and now that's over and he's doing what's called "count recovery." Here's what that means, as I understand it.

After the chemo nukes his system for however many days (five this time), he stays in the hospital for another month(ish) to a month-and-a-half while his body restores the levels of ... things ... in his blood to something that resembles normal (for him). Then that round will be over, and he'll get to go home for about a week, and then he'll come back and do it again. 

For example, check out these screenshots from the past three days of Phin's chart, paying closest attention to the bottom field, which is platelets:

As the chemo attacks the leukemia, it racks up other casualties, platelets being one of them. Those are the things in the blood that allow it to clot. 

This time, look at the top field—the one for white blood cells (WBC):

White blood cells are the things in the blood that fight infections. Like his platelet count, Phin's WBC count falls as the chemo drugs target and destroy rapidly dividing cells all over his body. The bounce in red blood cells (RBC) resulted from a blood transfusion after the 6/13 labs. Thanks to some generous blood donor out there--possibly one of you--Phin received a fresh bag of blood and spent the next 24 hours in beast mode. Now he's gradually coming down again. 

This is what count recovery looks like. His numbers slide down, down, down, until they reach a certain threshold, at which he receives blood products (thank you again, donors!), revs back up, and stays alive, then down, down, down again, then more blood products, again and again and again over the course of several weeks until he reaches the point where his numbers stabilize. Then, after a quick visit home, he comes back and gets nuked all over again. 

Only harder. 

One boy, two wheels, and barely
any platelets.

Phin On the Daily
Even when his counts are low, Phin is still tough to keep up with. He zooms around the unit and the
playground on his bike full tilt regardless of whether he has any platelets or not, filling his healthcare team and parents alike with a strange mixture of admiration and horror. To my knowledge, there is no word in the English language for this emotion. Today I watched him rocket through a doorway and almost collide with a food cart when he knew full well, as much as a five-year-old can, that he had approximately four platelets in his whole body. I admired him. In abject horror. 

He's also doing a lot of drawing and coloring, reading books, playing with puzzles and toys, and watching TV. He's been practicing some basic sight words on the whiteboard in his room. He's also been building more blanket forts and arranging his animal toys around his room as if they're in exhibits in a zoo. He gets cranky sometimes, but overall, his moods are super-positive. He seems completely comfortable and relaxed at the Children's Hospital. While he may not feel like he "belongs" there necessarily, he absolutely feels a sense of "belonging" there. In other words, does he feel like he should be in the hospital instead of somewhere else? Questionable. Does he feel accepted at the hospital? Absolutely. That speaks to the extraordinary work performed by the many nurses, child life specialists, staff members, and physicians who populate his world and make him feel loved and cared for there.      

One of the cardinal chicks 

near its nest in the hospital

playground garden. 

Like much of the United States right now, our town has become a frying pan, so Phin doesn't stay outside at the playground here for as long during the day now. He still likes to go out there in the evening when
it begins to cool down a little. 

Before he left for home after his second round, he met a family of four cardinals. The adults were teaching their two chicks to fly among the trees and bushes of the playground then. Both of the chicks have gone away now, but Phin found their nest in a tiny tree in the very back corner of the garden that abuts the playground. I held the branches apart and picked Phin up so that he could see down inside. The adult cardinals had woven in some random piece of medical waste that they had found. 

I think there's a kind of beauty in that. I can't stop thinking about it. 

Phinduction Round 3 and a Photo Essay

Dustin here. Let's get it, Phin phans. 

Medical Updates

Phin is back in the hospital for Round 3, an intensification of his previous chemotherapy inductions. Like before, he'll be hospitalized for four to six weeks while he receives the chemo and his white blood cell and platelet counts bottom out and then gradually climb back up, but this time, instead of getting chemo every 12 hours for 10 days or 8 days, he's only getting it for 5 days, and the doses are stronger. That means he has to be monitored more closely, which means he'll have to be hooked up to stuff more frequently and his movement will be limited. It also means he'll be receiving anti-nausea medicine and corticosteroid eye drops (which he really hates) every six hours. 

We're already going into Day 3 of this. So far, he's been more listless than normal, and occasionally he's a little nauseous. His appetite is also pretty much gone. He's making the best of it, though. Getting punched with chemo and rolling with it.     

Phin on the Daily

The first part of this break from the hospital had to be spent away from home, since one of his sisters brought home the flu before school let out for summer. We fled to his grandparents' empty house (they happened to be away that week), and found plenty of wildlife and places to explore nearby.

The nine-banded armadillo has evolved an armor-like covering to help protect it from predators. However, nothing in this animal's evolutionary history could have prepared it for Phin, descending suddenly from the sky with an aggressive offer of friendship.  

Despite how it appears, this tunnel doesn't lead to heaven. It empties onto a golf course near Phin's grandparents' house. And unlike traditional depictions of the people one meets in heaven, the individuals one meets upon exiting the tunnel and entering the golf course are far from friendly and welcoming. They declare that they're trying to play golf here, as if that isn't obvious by their clothes and their golf clubs. 
"We're trying to play golf here," they say. 
They say this while standing next to a sign that reads "Shared Path: Golf Carts, Bicycles, & Pedestrians." 
That's how you know it isn't heaven. 

Twenty-four hours after Phin and I got word that everyone back home was fever-free, we packed up, doing our best to restore my in-laws' place to its pre-bachelor pad condition before we left. Phin received a dance party to celebrate his homecoming shortly after he arrived at our place.  

Even masked, Phin's oldest sister's face says it all. 

One-sided water balloon fights in the back yard occurred almost daily. A direct hit on Phin would mean a trip back to the hospital for a dressing change on his central line's site. I felt like even this was living kind of dangerously, but then, I was the one standing with him on the dock with the alligators looking up at us a couple days before. That's the tricky part about these trips home with severely immunocompromised, can't-get-wet Phin. Everywhere we look, we see the lines that separate fun and dangerous, and he wants to tiptoe right up to them all.  

It feels like we're developing a playbook for Phin's times away from the hospital. Since the firepit s'mores were a hit last time he was home, that activity got repeated.  

Once again, we asked Phin to list things he wanted to do while he was between his chemo rounds. That list included exploring a cave with bats (probably not a good idea at this juncture) and visiting Africa and "the Mounty Rockins" (both too far, sadly, but hilarious that he calls the Rocky Mountains that), and camping. Camping we thought we could probably do, assuming we were close enough to home that we could return if things went sideways. About 25 feet was close enough to home.  

Only the neighborhood barred owls were awake to bear witness to Neesha as she rode a gradually deflating air mattress to the ground outside our home over the course of many hours both endless and dark.    

This birthday boy didn't let a little ol' spinal tap and bone marrow biopsy stop the party! He was glad he got to hook up his hospital fam with some alligator-themed cupcakes on his special day.

Even if Phin lives to see a hundred birthdays, I doubt he will ever see anything like what happened on his 5th, when a crowd of people under the direction of #TeamPhin organizer-in-chief Betty Riner gathered in front of our house to cheer and sing "Happy Birthday" to him. Phin's classmates, neighbors, his sisters' dance colleagues, many new friends, and a few friends Neesha and I hadn't seen in years--so many people came. They had signs. Balloons. Flowers. It was amazing, humbling, and somewhat dizzying as these friends and loved ones flipped a little boy's birthday that leukemia might have turned into one of his worst ever into an event that no other birthday will ever be able to match.  

Of course, it wouldn't be a break from hospitalization for Phin without a visit to Oatland Island Wildlife Center. Even with the raincoat he borrowed from his sister (since apparently he outgrew his during all of this cancer stuff), the storm halted our advance at the cougar enclosure and forced us to retreat. Still, for Phin, any visit to Oatland is a good one, even one that gets cut short.  

Neesha talked about these two "birthday buddies" in her last entry, They got to spend some time together outside one evening to celebrate their day, a few days after the fact. 

Now Phin has returned to the care of his team at the Children's Hospital, where the fight continues with renewed intensity. It could be, however, that Phin has crossed the halfway marker. According to the plan of attack laid out by his oncologists in accordance with the trial in which he is enrolled, Phin is scheduled to complete four rounds of induction and count recovery. He has now completed two and has begun Round 3.    

Here's something I'm putting in not because it's Phin-related, but just because it's so weird. It was shot by Phin's sisters the morning that he returned to the hospital. This is just a clip from a much longer interview. In it, Phin's sister Obi throws a tough question at a triceratops and things get awkward. Note to aspiring broadcasters everywhere: When interviewing dinosaurs, refrain from asking what happened to their friends.