Phin's Phirst "Off-Treatment" Ailment

Well, it happened. Of course it did.With three kids, two who are in school, it was bound to and we thwarted it so many times across these last five months, I knew our luck had to be running out. But I will say this: I am incredibly grateful that the inevitable happened now--when his central line has been removed, he's been out of the hospital with rising counts for more than a week and after I asked a million questions before our discharge in anticipation of this very thing--than if it had happened mid-treatment. There are no small gifts.

Phin is sick.

Both of our girls have been diligently wearing their masks. In fact, they're frequently the only ones wearing masks in their classes at school or among groups of friends. Less than a full week from the date of Phin's bell-ringing, I got a phone call from the school nurse to come pick Avonlie, who had a sore throat, up from school. I immediately thought: And so it begins. The news of Av's sore throat was especially problematic because the kids had talked us into a sleepover the night before so all three had been crammed into one bed: Avonlie, Obelia and Phin. When I picked the girls up from school, Obelia--under pressure to pay close attention to her body--confessed to also having a sore throat that she had chalked up to not drinking enough water. 

Commence all the "waaaaah-ing" emojis, of which this is my favorite: 

Sorry, Gen Z-ers. I know emojis are as
"out" as my skinny jeans and Elliot Paige are these days.

By now, I'm pretty proficient at locating and using the nearest Urgent Care these days, so braced with the info that both of the girls' sibling set of close friends at school had strep, I stopped at the nearest Urgent Care and had them tested: negative. Next up, I hit them with a Covid test: also negative. Last stop, an appointment at their pediatrician--Coastal Pediatrics--the next day where all their negative tests were confirmed and we were sent on our way with a prescription to help fight whatever was making them both sick.

Side note: The Coastal Peds appointment was not short of excitement. Obelia, who appeared to be feeling perfectly fine--so fine it never occurred to me to even see if she had a fever--and was seeming to rather enjoy her day off from school (snacking, eating, playing, watching movies, reenacting old photos...), had a surprise fever when we arrived, and Avonlie, who was feeling visibly terrible but registered no fever, threw up in the doctor's office. As always, the staff at Coastal Pediatrics (who were also the unfortunate bearers of Phin's initial bloodwork that sent us to the ER for suspected leukemia five months ago), were extraordinary. Most people don't love going to the doctor, but I always leave there feeling distinctly loved, cared for, validated as a parent, and like I've just had a lovely visit with an old friend. Love you guys (looking at you this time Katie and, always, Dr. Behm).

Obelia reenacting a photo from 2018 about
twenty minutes before her appointment at Coastal Pediatrics
where we discovered she had a fever. 

Despite our best efforts, and Phin's immune system's best efforts, by Friday--the day after his sisters had returned to school--Phin began to develop a fever and we could no longer hold out hope he'd somehow evaded their ailment.

Up until this point, Dustin and I had been full of bravado, spouting off things like: "The doctors wouldn't have sent him home if he couldn't fight something like this" and "The doctor did say that we treat him as we would any normal non-cancer kid if he got sick, even with a fever above 100.4. It's probably no big deal." Slowly, as his fever climbed, the bravado gave way to uncertainty when I'd repeat the doctor's words and follow them up with: "You heard that, too, right?" Before long, I had pulled a chair about six inches from Phin lying on the couch and was zapping him with the forehead thermometer every two minutes and alternating every five minutes with the armpit thermometer while he slept (he's been training for this kind of poking and prodding while he sleeps for five months). I called the oncologist. Twice. When the clinic returned our call, they assured me that Tylenol every six hours was the way to go; they'd tell our on-call oncologist to keep him abreast and we should just carry on as we were doing. "He's technically "off-treatment" now," the nurse said. The words "off treatment" have been echoing in my head ever since.

In this house, no one battles sickness alone, says
Phin's faithful companion, Sundae.

So we did. For the next two days, Phin's temperature fluctuated, depending on how recently he'd received Tylenol (they advised to only give Motrin once a day since no one knows his exact platelet count, only the count from the day of his discharge, and Motrin is a blood thinner--something we don't need if his platelets are already low) from a cool 98 to as high as 103. The first night, I camped out on the floor in his room armed with a bottle of Tylenol, ice water and a damp cloth for his head, which he truly hated. We eventually both ended up back in mine and Dustin's bed. The second night--last night--our AC unit went out so he and the girls slept in our room with all the fans we could find blasting to keep them cool. Dustin and I slept downstairs in the living room. And at 7:30 a.m., I awoke to the pitter-patter of Phin's feet bounding down the stairs. My stomach clenched, fearful of what horrible misery he'd come to tell me he was feeling, preparing to whisk him off to the ER and more capable hands than my own.

"Mama," he whispered, his wide eyes level with mine. I reached my hand to his forehead. "I want special milk." He was cool to the touch. As cool as the glass of oatmilk I was about to get up to pour him.

He's been fever-free all day. Still sniffly, but, otherwise, okay. 

Phin and his pet ants

If you're wondering if this experience made me feel like a first time mom all over again, the answer is a definite, resounding YES! 

I can't speak for whether Dustin grew anxious, too. If he did, he didn't show it. We tend to subconsciously achieve a yin-and-yang in that way. I can say that I'm relieved this is almost behind us. I'm not glad it happened. I know we couldn't have prevented it forever. I wish he'd had more time to build up his immune system but...what I hope we are all thinking here is this: he may not have the healthy immune system the majority of us have, he may have had this bout of sickness worse than his sisters did, but he is successfully fighting it off without major intervention and his immune system, however weakened it may be, is doing that all. by. itself. Praying hard that these everyday ailments are the only ones he'll ever have to fight again.

Next clinic appointment: 10 days away. Hoping for a quiet, no-update-post-necessary span of time until then.

 

A Triumph

 

Hi there, Phin phans! Dustin here. Let's pick up right where we left off a week ago, when Phin rang the bell. 

So, with a shower of confetti and a roar of cheers from his Children’s Hospital family, the curtain fell on Phin’s fourth and hopefully last chemo admission. It was his longest consecutive hospital stint, at 36 days, and also his most grueling. The chemo effects that he shrugged off with such indifference in his earlier rounds battered him and brought him down hard this time, and the menacing specter of infection that he had so deftly evaded caught him at last, at the very moment his counts were at their nadir. He blew past his projected stay of 29 days, but in the end it seemed fortuitous in a way that no one could have planned. 

Phin’s ringing of the bell followed his friend Aspen’s, and we were told the two of them made history a little bit, as no one present could remember a time when two AML kids rang out on the same day, that type of leukemia requiring such lengthy inpatient treatment cycles (120 days total in the hospital for Phin–many more for Aspen) and it being so exceedingly uncommon in children. It was a wonderful moment. A joyous and tearful celebration where we said goodbye to many of the people at the Children’s Hospital who have been such a huge and important part of these kids’ lives for most of this year, who have seen these kids more than their own families have. Who have become like family to them, and to us. 

Shortly after Aspen and Phin rang the bell, the crowd dissolved. We signed the discharge paperwork. Phin mounted his bike and charged out the double doors of the pediatric specialty unit for what we all hope is the last time. I stood there on the floor strewn with confetti, staring at the doorway, wondering how I should feel. 

I'm still wondering. I still lurch in the direction of the bathroom whenever I see him go in, forgetting that it is no longer necessary to measure and record his urine output. I still reach for my phone each morning out of habit to open the medical chart app and check for bloodwork results that aren’t coming. I still wake up in the middle of the night to lie there, exploring the alien terrain of some hypothetical future, or conducting yet another interview with ghosts from my past, or standing trial in the court of my conscience. Nights are still the worst.   

Sometime in the days since Phin came home, somebody told me, “I bet this feels just like waking up from a bad dream.” 

“Yeah,” I said. 

It was a lie. It doesn’t feel like waking up from a bad dream at all. For one thing, I am not at all convinced that this is over–not yet–and for another thing, even if it were, we’ve all come too far and gained too much knowledge, purpose, and perspective to compare it to a dream. Besides, like I mentioned, I’ve been awake for most of it anyway. 

Also not sleeping much around here lately: Phin. Not because he’s anxious or filled with existential dread or whatever. He’s just living as hard as he can. Splashing in water! Playing at the neighborhood playground! Having a bath instead of a CHG wipedown! He leaps out of bed at 6 a.m. and doesn’t slow down until 8 p.m., just like he used to do, only with a sense of enthusiasm and appreciation that wasn’t there before.   

Neesha and I have been getting some questions, so here goes: 

• What happens if Phin gets sick now? It will probably suck in the same way that it sucks when any kid is sick. Phin’s levels are still (probably) relatively low, but they’re supposed to come back up and stabilize. Plus, I look at it like, back in March, we sent him to school the same day we would later rush him to the ER, when it turned out he was actively dying of leukemia and his bloodstream was like thirty-something percent blasts, and he’s probably way stronger than that right now. We’re still trying to be pretty careful, but we’re not currently wearing hazmat suits over here.   
  
  
• What’s life like for him? Lots of playing, rediscovering toys, foods, and activities, and getting ready for school. Phin talks about the friends he made at the Children’s Hospital every day, and he is also excited about the friends he met when he briefly visited his kindergarten class this week.
      
• Is there anything Phin can’t do right now? We aren’t taking him into a lot of stores or restaurants yet, he still can't go back to school for a while, and he isn’t supposed to get the spot where his CVC was located submerged in water until it heals up a little more. Otherwise, he’s not operating with a lot of restrictions. 
  
  
• 
  Is Phin cured? From what we’ve been told and what we’ve read, Phin won’t be considered fully cured until he has survived five years cancer-free after his last chemo admission. At the moment, we can report that the results of the bone marrow biopsy that was done on the day he was discharged found no evidence of disease, which means all the chemo he got wiped out whatever leukemia was in him to the level that it can no longer be detected. The question (or one of them) that keeps me up at night is, will Phin’s bone marrow be cool and churn out regular white blood cells from now on (full remission), or will it resume spitting those mutant blasts into his bloodstream (relapse) and force him right back into the hospital to undergo all of the chemo treatments again plus a bone marrow transplant?  
  
  
• What’s next? Regular checks at the clinic to monitor his bloodwork and let us know how he’s progressing and whether (please...please) remission is holding. 

Note on Unexplained Occurrences
Long ago, for my comps, I had to read hundreds of nonfiction travel accounts, and in them every so often an otherwise straightforward and sober author would pause to confess that something they saw didn't make sense, usually acknowledging that what they are about to say might sound crazy, but nonetheless, they still saw it and are therefore duty-bound to report. John McPhee describing a UFO that he saw while driving through the mountains in Annals of the Former World is an example. It is in that same spirit that I present two incidents from Phin's final days in the hospital, both of which I am at a loss to explain.

The first happened one day in late July/early August at the Children's Hospital playroom. Childlife Specialist L_______ and I were chasing a tiny blue bouncy ball that Phin was throwing. We had been at this game for about 30 minutes when Phin threw the ball and it bounced toward the cubbies under the front window. L_______ and I both went after it. I watched the ball bounce into an empty cubby. I saw it ricochet wildly around in there as I stepped forward and bent down to retrieve it.

Then, I watched it vanish from existence.

It was like seeing in real life the special effect that junior high kids use in video projects, where they film an object, pause the recording, remove the object, and then resume recording. Poof! Gone. Right before my eyes. "Where's the ball, Dada?" Phin called.

I just stood there, mouth agape. Then I conceded that exhaustion and stress must be doing things to my mind and my senses, and the three of us tore the entire playroom apart. We searched every cubby and every cranny, our clothes, the space beneath the door on the opposite side of the room in case the ball somehow rolled all the way over there in front of all of us and escaped the room without any of us noticing. Nothing. It was as if it had simply fallen out of this universe through an unseen portal, or as if it had been snatched up and enclosed by an invisible hand. L_______ was completely confounded and swore to continue the search. Weeks later, as we were preparing to leave, she updated us: Still no ball.

The second incident happened in the morning on the day we left.

I was packing the rolling cart with Phin's belongings to take down to the car when I felt something touch my hip under my clothes. It felt like ice cubes. Several different places, but close together, pressing gently, like fingertips.

"Hey Neesh?" I called. Neesha was across the room, packing up more of Phin's stuff to take down. "Do you remember the thing that always happened in your old office? The ghost touches thing?"

Neesha's first job in this town was as director of writing for a college that had bought up old antebellum-era mansions and converted them into its administrative buildings. For several months after she started, she would complain about sudden ice-cold sensations on her skin, usually on her wrists and hands. She had assumed she was developing carpal tunnel syndrome. One day, as I was killing time in a bookstore, I found a photo of her office building in a book about local haunted houses. I took a picture of the page and texted it to her, and suggested cheerily that she was probably being felt on by a ghost at her job. She said that given some other stuff that had been happening in her office lately, that made a lot of sense.

"Yes, I remember," Neesha said, without glancing up from packing.

"This is going to sound so stupid," I said, "but I think I had it happen to me just now."

I expected her to tell me to focus up, or to chuckle and tell me to get back to work. But Neesha froze.

"Something like that happened to me, too," she said. "Last night, Phin was asleep, and I was showering. All of a sudden, I felt someone touch me." She pointed to her hip. "But when I looked, no one was there."

For a moment we just stood in silence in the room. Phin was playing happily with his stuffed animals on the bed.

"What...what does this mean?" I said. It would be the last in a long, winding parade of answer-less questions that I asked in that room.

Neesha just shook her head, lowered her gaze, and kept packing up Phin's things to go home.

Final Thought Phin phans, we are hoping for nothing but boring stuff from here on out, and our updates might get a little less frequent. We're going to keep posting, though. Thank you all for reading these posts and for all the love and support you've given to Phin.

Phinish Line Extended

Phin and his double purple popsicles.

Back in 2015, before Phin was born when our girls were still pretty small, Dustin ran the Palmetto Bluff Half Marathon. I don't remember all the details: one of our best friends, Garrett, was out there, trying to finish the race, despite being incredibly sick for days beforehand--I was texting Christy (his wife) about how he was managing; I think it had rained and vaguely remember parking our car in a muddy field to watch Dustin cross the finish.

After 3 hours had passed, I'd gotten kind of worried. Christy had told me that Dustin wasn't too far out from the finish line when she'd last heard from Garrett, yet he hadn't arrived when I expected him to, given his pace and the little distance he had left. I remember, as the sun started to get higher in the sky, thinking about the sunscreen I didn't apply to baby Obelia sleeping in the carrier on my back, holding Av's hand tight so I wouldn't lose her in the crowd of finishers as I squinted and scanned the gaits and images of runners in the distance for my husband--pushing out thoughts of a potential asthma attack or injury on the last few miles. I felt anxious and antsy for him to arrive, for resolution.

This is almost exactly how I've been feeling for most of today. 

After our continuous seven-day countdown, working hard to keep our promise not to get ANY injuries, checking off all the things we want to do for "the last time" in the hospital, and starting the beginnings of a "Bucket List of Things we will do When we go Home," Phin and I, on maybe our seventh lap around the unit, got the news that our "One More Day" countdown had been extended. 

"Wednesday is the new Tuesday" his oncologist had told me without the slightest hint of irony. 

I probably sighed or exhaled louder than I meant to before saying, "You're kidding, right?" 

Dear reader, he was not, in fact, kidding at all. 

Phin is fine. It's not because of Phin that our accommodations at the Children's Hospital of Savannah have been extended and I am so continuously grateful for that. He received some red blood the other day but has "held onto" that red blood nicely and has started to show signs of actually making his own. His hemoglobin, white blood cell count, platelets and absolute neutrophil count (ANC) are all on the rise, just as they should be. His molar is in; the swelling has subsided and the fevers are long gone. We are here for an extra night because the OR got backed up and they couldn't squeeze us all into one day.  

Phin and Nurse Anna looking up animals
on her phone and in the new book
she gifted him.

Phin didn't really hear that conversation because he was too busy finding some nurses to coax into playing with him. I worried he'd be upset. After all, he had told every single person we saw all day that we were "going home tomorrow."

I wanted this news to roll off of me like: "NBD, what's another night," but the truth is I was really disappointed to hear it. The countdown Phin and I had been keeping was as much for me as it was for him. A countdown to bringing him home to be with his sisters, to him taking an actual bath for the first time in five months, to actually unpacking his things. It's a countdown to maybe not having to immediately run to the ER if he has a fever, to him being able to play with water balloons or in the rain without fear of getting wet, to him being able to talk to and play with friends again. A countdown to being in the same room with my husband for more than ten minutes, kissing all three of my kids good-night and everyone being under one roof together. A countdown to navigating what's next and making it as normal as we've tried to make these last five months only better because we'd all be home together and Phin wouldn’t be in a hospital fighting cancer. A countdown to, hopefully, the after times. One more day just feels really long when you aren’t expecting it.

Dada and Phin

Dustin swung by for a visit; I left the hospital and picked the girls up from school to see them for the first time in a week, and when I returned to Phin, I came equipped with a mental list of all the good things about staying an extra night. It consisted of a better bone marrow sample when they take the biopsy, an extra day to see his numbers rise, an extra layer of safety while his immune system grows stronger before subjecting him to whatever virus is waiting to come home with his sisters from school, Phin's safety in this hospital bubble, time for the girls to make their "Welcome Home" banner, more time to appreciate everything about not being in the hospital every day...I mentally thumbed through my list over and over.

Back in 2015, when Dustin finally crossed that finish line at the half marathon, the anxiety and antsiness I felt subsided; he was not injured or struggling to breathe; he was smiling and happy for having successfully completed the race; Obelia's head was not burnt from the sun; I didn't lose my oldest child in the crowd. All was just as it should be. But the question still remained: what had taken him so long? It turns out, he'd missed a course marker by accident and ended up running two extra miles. 

"Two extra miles?!" I'd repeated, stunned by his admission. 

"What's an extra mile or two when you've already done 13?"

When I broke the news to Phin about our extra night, he said: "Two more days again?" I nodded; he turned to the nurse's station, asked for a purple popsicle please then sped off, squealing "can't catch me" down the hallway on his bike, the fluorescent lights shining like an artificial sunset. He didn't seem upset or disappointed; this extra night wasn’t going to hurt anyone, least of all, Phin. Relief swept over me then; the anxiety and antsiness subsided. 

"I’m sorry your discharge got pushed back, but we sure will lose a lot of joy on this floor when you go," one of our nurse's said, tearing open a double purple popsicle and handing it to me as she smiled, watching Phin round the corner at the end of the hall and disappear. 

I shrugged, "We’ll miss all of you, too. Besides, what’s another day?" 

Phinish Line In Sight

Phin and Henry IV

Hi Phin phans! Dustin here with a quick update. Let's do this! 

• Phin was originally predicted to conclude his fourth (and hopefully final) chemo admission at Day 29, which was Tuesday. In the previous post, Neesha discussed the situation that prevented that--the arrival of a molar on the bottom back left side of Phin's mouth. That tooth coming through the gums would probably have been no big deal for a kid with an immune system. Not so for this kid, whose white blood cells and platelets had been almost completely annihilated by chemotherapy when the tooth cut through. Bacteria from Phin's mouth entered through the puncture in his gums and caused a painful infection that swelled up Phin's face, punched his ticket for a multi-day rollercoaster of fevers and chills, and extended his hospital adventure by at least a week. 
  
  
• Phin's projected discharge day is now Tuesday, Aug. 16. 
  
  
• If Phin leaves the hospital on that day, it will close out a four-round in-patient hospitalization that began in March and continued to the present with only three brief interludes. Phin will have spent 126 of the past 146 days in the Children's Hospital. 
  
  

• 

  Phin and Aspen on the go in

  the hallways of the pediatric

  specialties unit.

  We are extremely hopeful that Phin's dear friend and fellow AML fighter, Aspen, will be discharged Tuesday as well. One of their oncologists has been almost giddily calling it "Two-fer Tuesday," and there is something like a spark of excitement in the air on the childhood cancer ward as it prepares to release two of its most familiar figures. Aspen, who is slightly younger than Phin, arrived at the Children's Hospital in January.
  
  
• For us, at least, that excitement is offset somewhat by a heavy cloud of concern since Phin's sisters are both back in school and there are already reports of absences from Covid and other bugs in both of their grades. 
  
  
• In an effort to reduce the likelihood that we trip on the finish line and accidentally prolong Phin's confinement in the hospital even further by carrying some contagion from the girls to him before his immune system semi-reboots, Neesha and I have resumed the lockdown protocols we implimented during the Great Fluing of May and the Mass Coviding of June.
   
  

  

  Phin at Neesha play at the

  Children's Hospital playroom.
  
  

• But this time, instead of me staying put with Phin at the hospital for days, Neesha is there chasing him as he races through the hallways of the unit on his bike. She's there weathering his constant bombardment of bouncy balls and paper airplanes and rubber snakes. She's there sleeping fitfully curled up with him on his hospital bed with his dragon hoard of stuffed animals. And I'm the one who's home now, realizing at last just how hard it must have been for her to be away. 
  
  

  

  Nurses Erinn and Taylor pose with 

  Phin after his final CVC dressing 

  change (we hope).

• If you're reading this and wondering, "What happens next?" or "Is that it?" or "Did the treatments work?" or "Is the leukemia gone?" or "If it is gone, will it come back?", believe me, I'm with you. I'm wondering about those same things. 
  
  
• The results of the spinal tap and bone marrow biopsy that Phin will receive on Tuesday should help to answer the "Did the treatments work?/Is the leukemia gone?" questions. For now, anyway.
  
  The other questions, about what happens next or whether the leukemia will come back if it is indeed gone, those are murkier, harder to see.
  
  Stay awake with me this night, like the 140 nights before it, and together we will seek out these answers by staring at the darkened walls of our bedrooms until we either find them, or sleep overtakes us.  
  
  
  

  

  Neesha and Phin with the "Beads of Courage"

  that Phin earned during his treatment. Phin

  earned one bead for each day he was hospitalized,

  and for procedures such as chemo inductions, blood 

  draws, needle sticks, etc.

A Molar Development

Sloth and some soft food

The kids love to hear about who did what first in our house. Av was the first talker. Obelia was the first walker. Phin was the first to do a few things. He sat up at 3 months and cut his first teeth at 4 months. We were all astounded by the early teething because Av had also teethed relatively early but not that early. The dentist told us when Av got her 6-year molars a few months after she turned five that she was “dentally mature” and we could expect her to be that way clear through her dental progression. For reference, Av lost her final baby tooth at around 9.5. Obelia has barely lost five of them and she's 8 and four months.

Fast forward to Phin. One thing (of the many) that can happen during chemo is mouth sores. Over the last five months, we've been watching for a list of things that can happen so when Phin told me two days ago that he really wanted to show the nurses the inside of his mouth because it hurt, I immediately thought: "Okay, here it comes. The plague of mouth sores."

He opened his mouth, pointed to where it hurt, and in the back left side I could see it—not the mouth sores I expected—but the first of his six year molars popping up sharply through a very swollen gum. 

Since then, he’s been in a lot of pain and anything from a kiss on the cheek to any effort to chew hurts him. His whole cheek is swollen. He occasionally spikes a temp that works itself out pretty quickly (and he has tested negative for everything possible; his cultures are not growing anything at all: we are very thankful for these things) and his doctors do think that, even though teething does not actually cause fevers, given his special brand of mixed conditions, it may be the reason for them in this very special situation. 

Chugging medicine and chasing with 
ice pops

He's actually in a LOT of pain. Even when I made the mistake of forgetting and kissing him on the wrong cheek, he cried. He's currently on an all-the-soft-foods-you-can-eat and pain killer diet: ice pops, ice cream, giant spoons full of peanut butter, a sprinkle of morphine here, a swig of roxicodone there. 

Needless to say, between his low counts that have not started to rise and his unpredictable temps, our expected date for discharge has been pushed back. We are all good with this. We don't want to bring him home until it's safe to do so.

The feeling I felt when I looked in his mouth and realized the source of his pain was a mixture between relief, admiration and joy; his body seems to be ready to do all the things it would normally be doing despite the intense amount of chemotherapy he has gone through. We may be in here a little longer than expected, but one thing is for sure—once we go, we are taking at least one new molar with us.

Phenomenal Phin and the Haircut Party

Mr. Nate gives Phin a "phresh" cut

  As you may have noticed in photos, Phin has maintained a decent amount of hair as he traversed through rounds 1-3 of chemotherapy. Despite the enormous amount he lost in the beginning (re: Dustin's likening the strands of hair to thousands of pine needles scattered across his hospital room floor and bed), a light, almost blonde-ish toupee of hair remained staunch in its determination to hang on. But this last round really wreaked havoc on what remained and, with each passing day, more strands gave up the fight, leaving behind a layer of hair that resembled a light dust cloud surrounding his head. It reminded me ever-so-slightly of a Peanuts character. I'd say "Pigpen" for obvious "dusty" reasons, but, in truth, most of the male characters had about the same amount of sketched-in strands of hair as Phin, so any one that comes to mind will suffice. Anyway, Phin has never been fond of haircuts and just because most of his had fallen out and he really hated it when the remaining few got in his sheets or on the floor or in his clothes, on my clothes, in his food, on the tray, on his animals...etc. he didn't want to entertain a haircut with scissors.

        With scissors.

He did not, however, protest against a Haircut Party with clippers. In fact, he relished this idea and decided he even wanted it done before his (hopeful) Bell-Ringing Party. In true saint-fashion, Katie in Child Life helped make some signs and they set to work setting up every stuffed animal in his hospital room (want to join the betting pool on just how many he's up to in here now?) for a viewing party of Phin's haircut. "Just make the long ones like the short ones," he requested. A thing we felt sure we could do.

Phin's animal friends, in VIP-seating, 
await the Haircut Party

It didn't quite go off without a hitch, though. His oncologist requested we wait until after his transfusion of platelets (this is why she's the medical doctor and Dustin and I are the English doctors--some of us have to think of practical issues like potential accidental nicks that bleed profusely due to lack of platelets while others of us focus on the butchering of their, they're and there; whether to use that comma after the "they're" in the previous clause...or the semi-colon, for that matter, or the ellipses or...) and then Dustin--the would-be-barber--had to leave to get the girls who started back to school on Monday because the platelet transfusion seeped into our planned Haircut Party time. And then there was playroom time, which is sacred in our lives and sacrilege for us to miss...

But it all amounted to Mr. Nate being invited during playroom time to the Haircut Party and me being saved the fear of nicking Phin causing profuse bleeding because Mr. Nate had more confidence than I did. We also didn't mention the whole low-platelet-transfusion thing (If you're reading, sorry, Mr. Nate!). We FaceTimed Dustin and Phin's sisters, who called out their encouragement. Phin's healthcare team gathered with his animals to offer moral support, if he needed it (cheering, if he didn’t). I prepared to cry, also, if needed. But he didn't and I didn't. Instead, we all watched this brave little boy sit still and quietly endure, yet again, something he never wanted or planned for.

And Phin giggled the whole way through, asking only one question before we began: will there be scissors?

No, sweet boy, there will definitely not be scissors.

And Mickey Monka's Mama (on loan from Av) got a new 'do, too.

Holding Phin as he fell asleep tonight transported me back to his nursery five years ago, the moon splaying silver across his room, his sleeping inhale-exhales escaping in slow rhythm as we rocked, a crop of new peach fuzz hair nestled against the palm of my hand. I could practically hear his sisters gushing all over again: "He's the most handsome little boy I've ever seen!"

Phin, 2017 and today.

Platelet Transphusion

Phin carries the sheets and blankets 

to help with his nightly bedding change.

Dustin here, on another late night here in the Children's Hospital. 

Phin needed platelets today. It was an expected result of his chemo, and he has received platelets before, but today there were no platelets nearby to be had. An order was placed for some platelets to be shipped here. It was nearly 11 p.m. when the platelets arrived. 

(I'm told there is a platelet shortage, which is troubling because platelets are an essential part of the immune system, thickening the blood and allowing it to clot and heal wounds. The American Red Cross is urgently seeking people who are willing to donate platelets.) 

Now, after midnight, Phin is asleep and the platelets are in. I text Neesha to let her know. 

 

"Watch him like a hawk," Neesha texts back. 

I'm already doing that. 

We have experienced moments of profound dread since this all began--dread, and maddening sorrow and grief. Our souls bear the cuts of the slick knife of hope and the burns of scalding liquid rage, and they have been stretched as taught as strings on the creaking rack of guilt and scoured by regret and subjected to all manner of torment so that we have become more quick to recognize the marks of these agonies in the eyes of other cancer parents than we are to recognize our own reflections. 

But for me, so far, there has only been one instance of true terror, during a platelet transfusion one afternoon in April. In the span of a few seconds, a full-body rash erupted on Phin, and by the time anyone realized his body was reacting to the platelets, he was clawing at his throat. His airway didn't fully close, luckily, but the rash suddenly exploded into itchy raised hives, particularly on his scalp, and Phin, now writhing and gasping, slashed and dug at these with his fingernails, covering his hands with a gory pulp of blood and hair. 

In the scope of bad things that can happen on a pediatric oncology ward, this incident was minor. Not a big problem. Nothing to worry about. Just get in front of it with Benadryl and Tylenol. 

Still, I will never forget it. I will always be on high alert when platelets are going in. I will stay awake forever if it means I might prevent that nightmarish scene from happening again. Just the memory of it makes the staying awake part easy.

Phin tries out the pirate eye patch that

his nurse, Franki, improvised for him.

Medical Updates

"Boring" is the adjective that his physicians continue to use to describe his progress, and as we've noted before, boring is phan-phrickin'-tastic. He had some light sensitivity (another side-effect of the chemo), but he pirate-life'd his way through it. His docs marvel at his high level of energy, and I really wish they would either explain it or publish a paper about it because my understanding was that there'd be some lethargy if the WBC, RBC, hemoglobin, and platelet numbers were all in the toilet, but this maniac springs out of bed every morning and runs full throttle up and down the hallways until nearly midnight with nothing in his stomach but three bites of a Belgian waffle and a fistful of Doritos. Nothing in any science class I ever took explains how that's even possible. 

Phin On the Daily

Even though he's isolated from the world as it shifts into back-to-school mode, and though he hasn't been outside often enough lately to notice summer beginning its slow, lurching wobble into fall, Phin must on some level detect a hint of change in the air. We haven't spoken to him very much about the upcoming school year because we aren't sure how soon his immune system will be stable enough for him to start it, and also because it makes him sad that he can't return to his preK class since all his friends have moved up to kindergarten. 

"You see, Phin," I said, "it's a lot like in Thomas Wolfe's masterpiece, You Can't Go Home Again, where--" 

"I don't want to talk about that," Phin said. "But Dada, will I still have the same voice that I hear when I talk when I'm big?"

"You mean, like, will your voice change?"

"Yes. Will my voice be different?"

"It will probably get deeper as you get older," I said, "but it will happen gradually, so you won't even notice." 

Phin started to cry a little.

"I don't want my voice to be different," he said. "I want it to still be my voice that I hear." 

"Do you like your voice?" I asked.

He bit his lip and nodded. 

"It's a really good voice. I think, as we get older, our bodies change, and our voices just want to keep up." 

"Will you still be alive when I'm older?" Phin asked.

"Bro, let me tell you, if you get discharged from this hospital and I haven't been struck down by a massive heart attack or a stroke, I'll be totally amazed. I mean, just absolutely 100% shocked."

"But when I'm older, will you be alive or..."

"I mean, maybe, dude. Maybe. I'll try, you know? How about you work on getting old and I'll work on getting super old, and when I'm super old, if I can still hear, I'll tell you if your voice still sounds good. That okay?"  

"Okay," Phin said. 

Then he added, "But I want it to sound like it does right now."