Tuesday, June 28, 2022

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!












Wednesday, June 22, 2022

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%

Thursday, June 16, 2022

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 
neaits 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. 


Tuesday, June 7, 2022

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.  


Wednesday, June 1, 2022

June 1: A Tale of Two Birthdays

June 1, 2017

My parents stopped into the hospital where I’d been admitted, pregnant and ready to deliver our third child who had decided to come a whole week after his due date. "Babies come sooner and faster with each one you have," people had warned. In our case, each child came later than the last: Av had been a week early; Obelianever to be outdonesurprised us by being one of the 5% of babies who arrive directly on their due date; baby number three was taking its time.

May 31, 2017: one week past Phin's due date

Like the others before him, we didn't find out whether Phin would be a boy or a girl before his birth. People would often see me with my round third trimester belly, holding my two daughters by the hands, and say, "Finally getting your husband a son." I never felt more akin to an heirless queen before, but the truth was that we liked the surprise and didn't care what sex our children would be; we just knew we wanted three.

My mom paced nervously at the end of the bed; Papa sat straight-backed at the edge of his chair; Dustin stood by my side remembering not to crack jokes by threat of death. All three tried to keep me distracted while we awaited the arrival of a doctor, a nurse, someoneanyone, reallywho could deliver the steadily coming baby. "I…have…to...push." I squeezed Dustin's hand. The epidural had failed; someone had smashed some glass on the floor sometime during the process, and I could feel, much to my mild disappointment, everything I never wanted to feel.

Mom ran from the room, calling for a doctor. I locked my gaze on Papa, sitting stiffly in his chair, and said: "If someone doesn't come soon, you're going to be delivering this baby." He stiffened further.

My father, a reluctantly retired ENT, had regaled us with stories throughout my childhood of his med school days in Germany and his residencies in America thereafter; he'd tell us about choosing not to go into obstetrics or gynecology (because of the unpredictability of when babies would be born) or any mental health field (his test scores left something to be desired in those fields). I could tell by his tense posture that delivering his newest grandchild was the very last thing he wanted or ever imagined he might have to do when he swung by to see me on his way out of town to celebrate his 75th birthday with my mother. As luck would have it, Mom appeared, pulling behind her a stunned-looking doctor straight from an examination room.

"Do I have time to..."

"You have time to do nothing," a nurse interrupted the doctor, pulling back the sheet from across my knees while another nurse tied on the doctor's gown. 

Moments later, my father was given the greatest 75th birthday present he could imagine: his third and final grandson.

Phin and PePop, June 1, 2017

May 31, 2021: Memorial Day

Our neighborhood popped with summertime feels: kids in denim shorts riding bikes and scooters, tearing down the streets from one house to another in search of Memorial Day Scavenger Hunt clues, streams of melting orange ice pops crawling down hands and chins, the distant sound of a pool radio belting out a country music tune while shrieks of jumping swimmers rang out across the neighborhood lake. I had just finished handing around plates full of burgers, baked beans and roasted veggies that Dustin pulled off the grill to my own three exhausted, red-faced kids when my mom called. My dad, now 78, had been feeling sick for the last week or so: vomiting, fatigue, lack of appetite, extreme pain in his back and stomach. He'd lost weight and had almost no energy to do anything. 

In retrospect, he would say that he remembers the exact day he began to feel badafter a long car ride from Florida on Nov. 1, 2020. He got out of the car that day and his back ached. It never stopped. Within twenty-four hours of my mom calling, asking me to come drive them from their home in Hilton Head to our hospital in Savannah, my father was diagnosed with cancer. Multiple myeloma. And it had taken up residence in his back, gnawing away at the bones of his spine.

My dad, Papa, far left, with his parents and siblings.

I like to tell people how my dad was born in a colonized India and was raised bilingual under British rule. How he spent his formative years living with his uncle in India while his parents lived in Tanzania, Africa, still under British government. After India, he moved to Germany for med school, but he didn't speak a word of German and had to read and translate his medical textbooks using a series of dictionaries that spanned several languages: German, Latin, English, Marathi. I love to try and retell how he worked in a brandy factory during his time in Germany, met native German friends at the pub once a week where they'd alternately teach each other German and English. How, once, he and his friends purchased a dilapidated old car so they could travel. It had a hole in the floor and broke down on a German road; they ended up spending the night laughing under the roof of the mechanic's home with his family who invited them in and out of the elements. 

Later, under his father's advice, he came to America, met my mom in New York City, and thwarted a marriage his father had been arranging for him back in Africa. He came to every extracurricular activity my three siblings and I participated insometimes driving an hour to catch the last few minutes of a soccer match or baseball game, sometimes being called onto the field if someone took a ball to the face that had knocked out some teeth or given them a concussion. 

On rare late nights, after saving dozens of patients or losing one, he could be found with a snifter swirling a thumb of blackberry brandy, sitting in his study, his stoic face the only thing aglow in the dimly-lit room, spotlighted by a single-bulbed lamp.

Papa in Germany with his friends and
the infamous broken-down car.

When his cancer diagnosis came last summer, his affable, optimistic disposition grew somber and quiet. The man who had spent his whole life devoted to caring for others now found himself in need of care he wasn't sure how to receive. It was also the first birthday since Phin was born that the two birthday buddies wouldn't spend together, a fact that didn't go unnoticed, even by a thee-turning-four-year-old Phin. That year, we sang and Phin blew the candles out twice: once for himself and once for his PePop.
PePop and Phinny napping

Each time in the past year since his diagnosis that Papa has caught a cold, it has landed him in the hospital. His immune system can't take a single thing we throw at him. This year alone, I brought home Covid, right at Christmasa holiday we'd been planning to spend with my parents.  My girls brought home colds, viruses, the stomach bug, mono, and Influenza A. Schools are rampant with quickly spreading germs and all five members of this Michael family exist most of the year inside the walls of a school. Our visits to my father have been cautious and few, and on them we often keep our distance, even when we're near, afraid we will carry to him something his immune system cannot fight. Now our caution has expanded to not one but two June 1st babies.

Papa tells me "I feel so old, like I've aged by ten years in the span of one." He's tired; his body is tired. It has become harder to coax from him the tales of his youth, a smile, a laugh. Harder to pull him back from the dark despair, like a black hole, that continues to collapse in on itself again and again, consuming the light. Some visits, I've found him, curtains drawn, lying alone in his bedroom, the sound of children playing just outside his door. He's listening, a small smile in the dark; I curl up beside him, hold him tight and pray for more time, pray thanksgiving for the time I've had, pray he knows how much he's donehow much he's matteredfor the lives of so many others, for me, for Phin, who insists that his own middle name is "Kishore" after his grandfather, and doesn't let a birthday pass where he doesn't expect PePop to be right there with him blowing out the candles.

PePop making Easter "empty tomb rolls"
with my babies

When we received Phin's diagnosis, something broke in the center of my chest. I felt it every moment like a black hole collapsing in again and again, sucking everything with itmy ability to eat, to feel hunger, to think, to remember, to sleep, to close my eyes when I crawled into a bed to try to sleep, to breathe without effort, to walk without feeling how heavy my gait had grown. Sometimes, I'd stand at the stove, making pancakes for my girls on a Saturday morning--trying to will back the feeling of a regular Saturday morning during the before times when we'd all be eating and making pancakes togetherand the moment would suddenly be struck by thunderbolt-sobs followed by a daughter's hand frantically grasping my waist, her voice whispering:  "Mama, don't cry" as she'd bury her head into my shirt and cry, too. 

For days, I expected the black hole to grow, to fill my chest then arms and hips and legs, to swallowing me entirely, to take me in like it had taken my father. I listened to my girls sleepy breathing at night, a mantra reminding me: in and out and in and out...

Something broke in all of us. But, despite that, my parents and brother came to help. Mom buzzed around, propelled by her grit and survivor's strength, cared for all of us, kept the household running. My brother shuttled the girls to school, activities, brought them for special treats. My father huddled silently on the couch wrapped in blankets, sometimes teary-eyed, other times watching me from across the room, sometimes startling me in the early morning hourshours he likely hasn't seen since his on-call dayswhen I thought everyone still slept. He began to offer words again: "He's strong." "The odds are in his favor." "He's only four. Pediatric patients have better outcomes." 

Some days, when the girls had gone to school and the morning was still dark, in the sleepiness of the house when I thought myself alone, I let gravity take me wherever I fell: the tiled kitchen floor at my feet, the stairs at my knees, the couch on my face. I wept with anger, sorrow, despair, prayerfulness, desperation into the cushions. Then out of the darkness, feet shuffling closer, blankets falling way around him, the comfort of my father emerged, his hand on my backhe will be okay; we will be okaya salve to close the collapse, to heal the hole; my father guiding us both, slowly, back to the light.


Phin and PePop see each other for the 
first time after Phin’s diagnosis










Phevers

Hi Phin phans. It's Dustin, popping in with an update on Phin. Here goes. So much about Phin's current experience with leukemia rese...