To phace unafraid the plans that we made

Happy holidays, Phin phans! 

Dustin here with a quick update. Let's get it. 

Here's a shot of Phin from last weekend, the slanting light of a late autumn sun glinting gold in his fuzzy brown hair as he tears around a leaf-strewn playground with Neesha hot on his heels. We've been so worried about him lately. When he falls asleep in the car after school, when his lunchbox comes home still full, we make our notes and wring our hands. "Does he look pale again?" we ask ourselves, then each other. 

But then, this is fall, and the days are shorter and darker. These are the kinds of days that make everyone feel a little tired and look a little pale. And maybe the lunches I pack for him are gross sometimes? Who knows. When I look at photos like this one, though, where he looks to be a picture of happiness and health--just a regular kid having fun on a regular autumn afternoon--I feel my own body relax a little. 

Just a little. Just for a moment. 

Medical Updates
Phin had his fourth clinic visit on December 2, and what made it awesome (other than pretty boring bloodwork) was getting to hang out with his buddy, Aspen, who was there for her monthly visit as well.   

Here they are together once more, three and a half months after ringing the bell. We'll see Aspen again in this post momentarily.  

As I mentioned up top, Neesha and I were both anxious about this clinic visit, after a rogue myelocyte turned up on Phin's bloodwork last month. Normally, those stay in the bone marrow until they turn into a kind of white blood cell called a neutrophil. The oncologist explained finding them in the bloodstream like taking cookies out of the oven before they're done baking. Clearly he knew how to connect with me. There were a lot of metaphors he could have gone with in that moment, but he looked at me and thought, This is a person who has a deep appreciation of baked goods. So he deployed a cookie reference and it was absolutely the right decision on every level. 

I imagined Phin's immune system as kind of like an industrial bakery, like the one at Byrd's Cookie Company here in Savannah. The cookies are the white blood cells, just like in the oncologist's image, and the oven is the bone marrow. Visitors to Byrd's Cookie Company can attest that there are cookies aplenty in there. It's a healthy system that has abundant stores of reserves ready to go if some sudden demand should arise. Lots of little cookies all cooled and packaged, and humongous ovens in the back making more all the time. 

But for a bakery like the one in post-chemo Phin, there wasn't a lot of inventory sitting around. He had some cookies ready to go, but not tons of cookies. So whenever a busload of pathogens would unexpectedly roll up and start demanding cookies (I feel like this is where the metaphor starts to groan under the strain a little), Phin's stores would get cleaned out pretty quickly. I just picture this frantic baker tossing half-baked wads of molten cookie dough down a conveyor belt in a desperate effort to crank out enough product to meet the need. 

So, there you have it--myelocytes. 

If there'd been more myelocytes in his lab results this month--or worse, blasts (I don't have a cookie analogy for those and I refuse to think too hard about it for fear of inadvertently putting myself off cookies for life)--we would have wondered what exactly is going on with this bakery. But no. All good, the oncologist said. Plenty of different cookies, er, white blood cells, all fully baked, in all the familiar flavors. 

Oh! Speaking of blood (and leaving cookies behind, which, to be honest, is not my custom), big props to Neesha, who successfully donated blood yesterday! She got it done through The Blood Connection at a mobile drive at Memorial Hospital. The next one through them here in Savannah is at Enmarket Arena on 12/21 from 12-5 p.m. 

It will take the two of us years to replace just the amount of donated blood products Phin used from March to August, but we're committed. We intend to give back every drop and then some. We're in this blood donation game for life.

Also, we just want to say again, thank you to everybody who donates. You guys are all straight up saving people's lives.  

Phin On the Daily
Listen. All the anxiety and the worry, the walking-on-eggshells feeling, the waiting for the floor to fall out...that's all us. Phin is not about that at all. Phin is fearless. Phin’s out there living deep and sucking out the marrow of life, Henry David Thoreau-style. This holiday season, from the second his eyes open, he's checking on the elves, doing the advent calendar, making the train go around the tree, and doing all manner of Christmasy things. When he gets home from school, he's drinking hot chocolate, playing with toys, running crazy around the neighborhood, riding all kinds of vehicles. He's always laughing, always moving, always ready for whatever. He's excited about his sisters being in a Christmas play and excited about his friend Joseph's football team winning the state championship and excited about his school's Christmas program later this week. Phin is into it all. 

"It's like he's taking back every minute he lost," Neesha said. "He lives with gusto. It's infectious, and it's a good reminder for all of us to spend every minute and not to waste a single one." 

That doesn't mean Phin has forgotten. At times, he's reflective about his time in the hospital. He tells us sometimes, cautiously, that his cancer is gone. He talks about his nurse friends, his Child Life friends, all the hospital friends and helpers who came to visit and play with him. He talks about the hospital playroom and playground. He talks about Henry, his I.V. He remembers everything. He says he liked the people there but that he missed his class and his sisters, and that he didn't like having to stay away from home for so long. That is also what he said at the time. Nothing has changed. 

Actually, that's not quite true. Some things have changed. 

The side-by-side below is courtesy of Kelley, the mother of Miles, who joined our childhood cancer family when Phin and Aspen were in the middle of their final round. The photo on the left is from that time, over the summer. The photo on the right is from the Cure holiday party last week, when the band got back together. 

 

Miles has since begun another grueling round of chemo. Phin and Aspen are off treatment. 

When I look at the three of them in their Cure shirts, standing together outside under a dappled December sky, I'm so proud. So proud to know these three people. So proud and so honored.  

Look at their smiles. Look at how far they've come. Look at who they are.      

Thankphul

Hey there Phin phans! Dustin here. No new medical updates on Phin right now (he goes back for his monthly clinic visit next week), but here are some photos and stuff he's been up to as we plow into the holiday season. Let's get it. 

Phin and his sisters made cards for the nurses on the pediatric specialty unit at the Children's Hospital. We wanted them to know we're thinking of them this Thanksgiving, even though no amount of thanks will ever be sufficient for the debt that we owe them and his physicians and the rest of the crew there. 

We spent part of Thanksgiving Break decorating for the holidays. That includes busting out the village. 

Phin and one of his sisters also attended Camp Sunshine's holiday party at the Children's Hospital and enjoyed hot chocolate after a snowball fight. Phin isn't old enough to remember the time it snowed here for real, but he's seen pictures of himself as a baby with the flakes coming down. Still, he took to this pile of trucked-in snow outside the Children's Hospital playground like a frosty warrior from the frozen north. 

The captain returns to the ship. 

Something about this photo (every photo in this post, to be honest) feels a bit unreal to me. It was taken moments after the one above. Here's Phin, bundled up in late November, guzzling hot chocolate on the deck of the vessel that we sailed to the edge of our imaginations all spring and summer, when the weather was so hot and his constitution was so frail that we had to time every voyage carefully.

Have we really arrived here? Is this real?

I just realized the reason these photos seem surreal to me. It is because while Phin was hospitalized, on the rare occasions I would allow my mind wander the misty corridors of possible futures, it always found its way to the same door and crept into the same small room of hope. These are the images that decorated the walls of that room.

It was a dangerous place to visit then, especially because the mind remembers the way to that room through the labyrinth of nightmare possibilities. It would sometimes sneak back there while I slept.  

That is my fear--that none of it's real, that I'm curled up again right now in that room in my mind, a dust mite of consciousness nestled snugly inside a blanket fort of prayers. In an instant that room and these images might all turn to vapor and it will no longer be November, but April. 

I'm terrified that this is all a dream.  

Phin and pham before the Turkey Trot 5k and fun run. It's unclear when it happened, but at some point in the last decade we became a turkey trot family. We've made a showing at this race in previous years with a half dozen or so of us participating, but this year we turned out in force. 

Phin and Neesha slice through the pack near the starting line of the Turkey Trot 1-mile fun run.  The course for the fun run and the 5k diverged after about a half a mile, and while Phin and Neesha made the turn for the 1-mile course, Phin's sister Obi shot right past it. I caught up with her around a mile and a quarter in.  "Where is everybody?" Obi said. "They're all up ahead," I said, "or they made the turn for the mile race. Unfortunately, you're doing the long race now, kiddo."  "I don't want to do the long race!" Obi said. "I'm not ready for that!"  I knew that feeling. So often we find ourselves in the middle of things we haven't adequately prepared for.  "Sorry, Obs, but at this point I think the only way out is through."  "I want Momma," Obi said. I knew that feeling, too.  "Momma's doing a different race. This is your race."  "Ugh!" Obi shouted. And then she poured on the speed and left me for dead.

Phin and Neesha slice through the pack near the starting line of the Turkey Trot 1-mile fun run. 

The course for the fun run and the 5k diverged after about a half a mile, and while Phin and Neesha made the turn for the 1-mile course, Phin's sister Obi shot right past it. I caught up with her around a mile and a quarter in. 

"Where is everybody?" Obi said.

"They're all up ahead," I said, "or they made the turn for the mile race. Unfortunately, you're doing the long race now, kiddo." 

"I don't want to do the long race!" Obi said. "I'm not ready for that!" 

I knew that feeling. So often we find ourselves in the middle of things we haven't adequately prepared for. 

"Sorry, Obs, but at this point I think the only way out is through." 

"I want Momma," Obi said.

I knew that feeling, too. 

"Momma's doing a different race. This is your race." 

"Ugh!" Obi shouted. And then she poured on the speed and left me for dead.

We all made it to the phinish line. 

This family has a lot to be thankful for. Many were the moments this year when it wasn't clear how many chairs we'd need at the table when we gathered. To be in the room with Phin and his grandfather now...to remember everything that has happened...it is enough to burst the heart. 

Thank you for reading this. 

Thank you for being a part of this.

Thank you for everything you've done. 

Thank you. 

Novem-bear with me while I explain what myelocites are

Phin has been incredibly busy. Both of his sisters are performing in shows at the Savannah Children's Theatre and with a whole lot of enthusiasm he said: "I get to GO this time!?!" when we walked him toward the entrance. I think he liked Annie Kids, but may have actually enjoyed the pre-show watching the popcorn pop even more.

Phin on popcorn patrol

Excited to watch Obelia in Annie Kids

Phin had his third outpatient/off treatment clinic visit this past week and he was truly a rock star. We learned that he has gained six pounds since August and has grown a quarter of an inch. His oncologist referred to it as "catching up," which he said happens frequently in AML patients. Despite hating to have his blood drawn, he explained to the nurse how he wanted it done ("Count down from three to one, then go") and even though the tears came before the needle punctured his little arm, he kept himself perfectly still and wailed as still as a statue. He had selected a unicorn with a belly that unzips to reveal shiny, metallic unicorn babies inside. I ordered it from Amazon and it waited until this clinic visit to finally break free from the package it came in just as the needle was removed from his arm. It may have been the fastest recovery we've seen yet!

Reunited with Henry at the clinic

Phin, his Mama Unicorn and her babies

The blood work didn't pop up in the MyChart app as quickly as usual so by the time we received the information that his levels had all dropped (just a little and still well within the normal range), we couldn't do much but wait and remind ourselves that fluctuation is normal. The CBC is a snapshot of health at that very moment and not a definitive picture. Phin had been cushioned from every and any outside viruses from March until August. Even from August until October, when he returned to school, he'd been largely sheltered from ailment...but once he returned to the classroom, we knew all bets were off. He has since had the upper respiratory virus we wrote about here and cold or allergy symptoms in varying degrees of severity on and off for weeks. His eosinophils have been elevated since discharge, which directly correlates with the allergies he's been battling. And these were the explanations we were given when we spoke to oncology the next day about the .9% myelocyte that appeared in his blood work.

A myelocyte is an immature neutrophil cell that is typically found in the bone marrow, not in the blood. The last time I noticed any number of myelocytes in Phin's blood work was back in April when he was first being treated for AML. I'm not a medical expert and I only have a cursory understanding of how this works, but bear with me as I try to explain why this matters.

The life cycle of a neutrophil begins in the bone marrow with myeloblasts that, in turn, progress in the following stages until becoming neutrophils and entering the peripheral blood that courses through our body.

Image from Labpedia.net

Myelocytes don't typically make it into the blood stream since they've not fully matured. When Phin was diagnosed with AML, you may recall, he had 30% myeloblasts in his CBC. Let's say they took about 115 blood cells at diagnosis. At least 34 of the cells they collected were myeloblasts--the most immature of the neutrophil life cycle. Those blasts are and have been at zero since Phin's first round of chemotherapy. Now, three months following his discharge, out of 115 blood cells, one of them was a myelocyte. It's not a blast. It can happen with inflammation and sickness that a myelocyte finds its way into the bloodstream rather than completing its progression into a neutrophil. It has happened (now that I've gone back and reexamined all of the labs ever drawn on our son) that a metamyelocyte once appeared in Phin's blood following or between treatments. It didn't amount to anything more. Knowing all of the above is very sobering, despite all of the reassurance we've been given (which I am, of course, grateful for; I would be a lot more anxious without it). So if you catch me in public looking anxious, worried or distant; if I seem dismissive, oblivious or lost any time in the next 21 days, just know that this is the reason why.

One of the highlights of our monthly clinic visits is stopping in to see our favorite nurses and Child Life friends. When Phin returns, he runs laps around the special unit, helps himself to a spot at a computer, engages in hide-n-seek, and gives so many hugs. This time, though, he discovered he could make a paper airplane and actually send it through a tube to another unit on the floor, then run wildly to the unit to retrieve it, and, hopefully, beat it to its destination. 

Hugs

Sending his plane to another unit

And just so all his nurses know, there is never a time we pass the hospital on the Truman that Phin doesn't wave and yell out: "Hi, hospital! Hi, nurses!" He tells me that you are his "favorite community helpers." The whole Michael family agrees!

Checking things out with his nurses

Keep those prayers, good thoughts, juju, vibes and whatever other goodness you can send Phin's way coming. These next twenty-one days are sure to feel like an eternity. Phin lives each day with reckless abandon, enthusiasm, gusto and vitality from the moment his eyes open until we coax him to sleep at night, and, honestly, we wouldn't have it any other way.

Phits and Starts

When last we met our hero, he'd been cleared to return to school--a request he put in daily with management (management, of course, being me and Dustin). When this past Monday came, we were able to oblige his request. We took the obligatory first day photos (albeit with more tears than usual) and all piled into the car to drive him off to school where the OG Phin Phans (the carpool student-helpers in the parking lot) would whisk him off and escort him to his class, as if it were merely Thursday, March 24, and the last seven months had been imagined.

As the van slowed and the door slid open, he wrapped his arms around me, gave me a tight squeeze and firm kiss, said "I love you, Mama. I love you", then leapt from the car and confidently strode in the direction of his classmates, not stopping even once to look back.Oh, how this little boy has grown! A year ago, he'd have cried if I dropped him off at school, told me it was "too hard to say good-bye to Mama" and asked me never to drop him off again. He literally meant he did not want me, his mother, to ever drop him off, which left the heavy lifting of drop-off duty to his dad (which was best case scenario, really, since my teaching schedule wouldn't have allowed the necessary amount of time to drop him and still get to my classroom by the first bell, and my mama-heart probably couldn't have withstood many mornings of that lament). This morning, though, Dustin, the girls and I had enough time to park and watch him from afar as he lined up with his class, played "rocks, paper, scissors" with friends and jump up and down in excitement as they greeted him one-by-one. He lasted until just after lunchtime when his teacher let me know he seemed a little tired and might need to start off his return with half days.

The next day, we planned for the same half day schedule, but he vowed, as he was helped out of the van by a Phin Phan, that he would be staying for "the long day" with his classmates. I lingered nearby at a coffee shop, tallying up final grades for a fully online class I'm adjunct teaching while waiting for confirmation of a half day pickup for Phin that never came. His teacher texted: "He's doing great! I just asked him and he wants to stay the full day." I celebrated with an oatmilk shaken espresso (Phin was unable to drink cow milk as a baby and has never really grown a taste for it as a drink ever since; oatmilk is his preferred milk) in honor of my boy; he and Dustin celebrated his full day with an ice cream (he has a taste for ice cream regardless of milk type).

The week went on as though we'd rewound the clock to the "before times" again. He stayed another full day on Wednesday before passing out on the couch after school from, what we assumed was, exhaustion. When he awoke, though, his congestion was audible. Each of our kids has allergies in varying degrees, although, none have ever compared to Avonlie's...until Phin's treatment. Each time he came home between rounds of chemotherapy, he spent half of his first few days miserably with allergies: congestion, sneezing, coughing, mucus and itchy eyes were among the top symptoms.After a few days, they'd settle enough for him to have milk symptoms the remainder of his visit home. Since he returned in August, though, he's had random bouts of allergies and his blood work has confirmed high eosinophils each time. Naturally, we assumed the same. He was coughing and congested in the morning, but fever-free and desperate not to miss his first field trip, which I was chaperoning.

About halfway through the class trip, Phin--who'd been less boisterous but still engaged throughout the visit to the Children's Museum of Pooler--wrapped his arms around my legs and said "Let's go home now, Mama." I knew immediately that something was wrong.

In the parking lot, I strapped him into his carseat and his chest heaved up and down. He put the palm of his hand to his chest and throat and told me that it hurt. His breathing was labored and shallow. I had the pediatrician on the phone before making my way to the driver's side of the car. Luckily, Coastal Pediatrics has an office mere minutes from the museum. I was in their parking lot before getting off the phone. Phin's pulse oximeter reading was 90. A nebulizer alubterol treatment brought him up to 95 and for the next 24 hours, we watched and listened closely with a pulse ox in one hand and the phone in the other, ready to dial 911. 

I don't know what we were expecting for his first week back, really. Was it for everything to be like the way it was before he got leukemia? Did we think we would just drop him off at school, watch him walk into the building and jump right into whatever the rest of his kindergarten class has been working on for the past eight weeks like he hadn't missed a beat? Whatever we were expecting for Phin's return to school, last week showed us that we need to pump the brakes a little bit. To recap what happened, he lasted for a half a day on Monday, full days on Tuesday and Wednesday, and a negligible amount of time on his school field trip on Thursday. So two and a half days out of five for his first week of kindergarten, and the price of those two and a half days was two separate visits to the pediatrician. 

But he did respond quickly to the nebulizer albuterol treatments, which was awesome. He was also able to see a pediatrician very quickly, and that pediatrician correctly determined what to do with such speed that Phin was on the mend again by the weekend. 

Speaking of Coastal Pediatrics, I'd like to take a moment to once again sing their praises. Twice in the past two years, two of our kids came down with something that was kind of extreme and scary. Both times, Dr. Callan was the physician we saw, and in both instances he was invested, showed genuine concern, advised us well, and took the time to check in outside of office hours. The care that we received is always unparalleled, something out of bygone eras where doctors made house calls only now the house calls are phone calls, and they came from our doctor at the end of the day and, again, first thing in the morning because his patient, my son, is heavy on his mind...because he genuinely cares. I think it's something really rare and special that they have there. 

Phin as No-Noggin from Curious George's
Halloween Boo Fest

When I called to update my dad* on Phin's sickness, he told me that even though Phin looks, behaves and seems like he's the same kid he was before the leukemia and the chemo, in reality his body's been battered. His bloodwork might look like something that approaches normal now, but what we can't see is the short- and long-term toll that the disease and its treatment have taken on him. There's no way to know what's a fluke respiratory virus and its effects vs. an issue in his lungs caused by the treatment we used to eradicate the cancer from his tiny body. In truth, we don't know what the future of Phin's health will look like, how many starts and stops we'll see before things level out, if they level out, and this incident was the first of many of these reminders to come.

Oatland Halloween Hike 2022 with
Spidey, Cinderella and No-Noggin

One thing (of the many) that we've learned from all of this is to celebrate every day--to put as much living into each day as possible, to fill all of our days with the joy of exploring and experiencing life as much as we can manage. In that spirit, we managed to take in this year's Halloween Hike at Oatland Island Wildlife Center (Phin's most favorite place, though he felt some disappointment we couldn't visit with all of the animals). We got to visit a pumpkin patch with some of our closest family-like friends. We picked pumpkins. We carved pumpkins; I let the kids be in charge of decorating the house and we are looking forward to each day that comes and all the love and laughter it will bring.

Phin "camouflaging" himself with the pumpkins.
Nothing to see here...

*For those who have inquired or been wondering, my dad recently had bloodwork and testing done, too; I am happy to report he is currently in remission along with his grandson.

An EventPhul Day

Hello Phin Phans! I’m Phin’s sister, and I will be telling you about this eventful day. 

So today we all had to get up around 7:30 because Phin had to get blood drawn. The doctors checked him out and thankfully everything was normal. Phin had been talking about this blood draw for weeks, but when the real event came crawling around the corner he wasn’t entirely ready. He kept trying to avoid it, but was conflicted. With an iPad and nurses, eventually, he got the blood draw and got Baker's Pride donuts and a unicorn stuffy. The doctor said Phin wouldn’t have to go back for a month. 

Before we left, the doctor recommended a flu and covid shot. Of course, neither Phin nor we wanted to stay there, so we left. 

Sometime in the afternoon, the results from Phin’s bloodwork came in. Everything looks good!

A few hours later, my parents decided to get the covid and flu shots over with. We went to the pediatrician and got the shots. 

As expected, he was not amused.

All of us were sad. We hated to see Phin or anybody upset. After the shots, he was given two blue Ring Pops, which he decided to eat at the same time. 

As for me, I had a cross country meet. (Go TIMA tides!) I did come in faster, but I still need to work on pacing myself. 

Later that night, my sister and I had to go to a Rudolph the Red-Nosed Reindeer audition. Still 

waiting on the cast list, but I'm really excited for the results. We didn't take both of our cars to the audition, just one, so Phin and my dad had to stay in the car for an hour and a half. When I got back in the car, Phin was asleep. I'm still a bit sad, but also happy because now he is mostly protected.

At the end of the day we were all tired–especially Phin. 

Thanks for reading this blog post!

CURE Childhood Cancer Phundraising

Yesterday at Benedictine Military School, Phin helped to present a giant check to the nonprofit organization CURE Childhood Cancer. 

Students at Benedictine Military School and Phin

present CURE Childhood Cancer with a check.

The giant check represented Benedictine's remarkable fundraising efforts and the magnanimity of those in its community. Phin was thrilled to help with presenting it. In the photo, he is smiling, held aloft by his buddy Joseph, a student at Benedictine, whom he last saw on the football field. 

Taking part in this event was an honor for both of us. But I was curious as to what it meant to five-year-old Phin, who doesn’t really understand the concept of regular-size checks yet, or, for that matter, money. 

As we were leaving the building, I asked him what he thought had just happened. 

“I gave away the money and they took pictures,” Phin said.

“Nailed it!” I said. “Do you know what that money is for?” 

Phin’s grasp on this point was less firm, but that is understandable. After all, the money was for CURE, and it is difficult to describe all the ways that CURE supports families of kids with cancer.

CURE provides funds for expenses that families incur while their children are receiving treatment. It connects parents and siblings with counseling professionals. It delivers meals to patients’ rooms multiple times per week. CURE’s representatives were among the first people we met when Phin entered the hospital after he was diagnosed with AML, and they were some of the last faces we saw when he left. 

“But I don’t have to be in the hospital now,” Phin said. 

“High five for that!” I said. “But the whole time that you were, they were there for us and for every other kid who had cancer in that whole place. And CURE is still there helping the kids who didn’t get to go home like you did. That’s why CURE needs that money–to help all the kids who get cancer and have to go to the hospital after you.” 

He seemed to understand that–a huge relief to me, since it meant that I could keep it together and leave unspoken the part I was going to say next, which was, “And Phin, if you ever have to go back to the hospital, CURE will be there to help us again.”  

Here's a link to Phin’s CURE page: https://bit.ly/3TJiN2R

If you’d like to send CURE something to help it to continue doing this important work, I can assure you it will be put to good use. 

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.