Phin and the End of a Phour-Year Streak

Dustin here. Let's do this, Phin phans.

Medical Updates for Today

Phin eats a chicken sandwich while
 momentarily not covered in blood

Phin's is on day three of chemotherapy and he's acting like it's no big deal so far, although the attending pediatric oncologist predicts that will probably change soon. He gets the chemo drugs piped in through his central line every twelve hours--at about 4 p.m. and 4 a.m. It's ten straight days of this, with the last two days' chemo drugs going into his spine. Then it's four to six weeks of in-patient monitoring and recovery. Then, if it looks good, maybe he can come home for a few days before the second round starts and it all happens again.

He also got some more blood and platelets. I am learning everything I should have already known about blood, what it's made of, and what it does. Neesha and I are also seeing a lot of Phin's blood firsthand, although I suppose that at this point technically most of the blood coming out of Phin belonged to other people heroes first. That's because, it turns out, platelets are what makes blood clot, and not having enough platelets means openings in the skin (like the one at Phin's central line implant) don't close up as easily or as fast as they otherwise would. Bandages soak up some of the blood, but the wounds stay open. They bleed and bleed and bleed.

Phin relaxes with some African wild dog 
and hyena stuffies while not covered in blood.

So, a lot of the pictures we've been taking of Phin lately are pretty gruesome. I'm not going to share those. You can imagine. But the doctors and nurses say it's pretty normal, and that, in regard to our concern about Phin's blood loss, a little blood on his T-shirt, pillowcase, sheets, dinner tray, IV stand, walls, windows, floor, and pretty much every other surface in there looks a lot worse than it actually is.

Phin himself doesn't seem to mind the blood so much, but he hates having his bandages changed. He much would rather do his 24/7 impression of the pit from Evil Dead 2 than sit still while his nurse squad wipes him up and re-dresses him.    

Phin on the Daily

The chemo isn't doing much to his energy levels (yet), but it did make him barf yesterday. Apparently, that was a first for Phin. 

He wasn't amused. 

How Phin managed to reach age four without having puked even once has been a minor preoccupation of mine. Phin has rolled all the way down steep hills sideways. He has ridden on spinny rides. He has swallowed things that he found in the yard. He has listened to some of the music that his sisters enjoy. He has, occasionally, sampled my cooking. 

No puke. 

It's astounding! Maybe it's from the relative isolation he experienced during the pandemic that has been going on for almost half of his life? It's possible. After all, Phin spent most of his days up to now in and around our house. He never went to daycare, and although he started preK this year, most of the time he and all of his classmates were masked. Phin attended his first-ever friend birthday party four days before he went into the hospital with leukemia. Maybe that's how he dodged getting some of the usual projectile vomit-inducing stomach viruses that kids normally get. 

Maybe that's also partly why he seems to be adjusting to his new life in the hospital relatively smoothly. 

However, that is not to say he's loving his life there. Once or twice a day, in true four-year-old fashion, Phin lets me know just how over this crap he is, how much he wants to return to his preK class, and how badly he wants to go home. The storms rage, but then they pass and the sun comes out again, and Phin resumes his overall project of making the best of it all. His ability to do that has been assisted by 1) his gradual acceptance of the fact that he's very sick and needs to be there, and 2) the unfathomable love and support of so many of the people in his life, and in ours. 

A Few Other Notes

• We explored the possibility of transferring Phin to other hospitals in distant cities--Atlanta, Memphis, Philadelphia. However, we discovered that the trial Phin is enrolled in is the same trial that is being run at the other hospitals. Phin is receiving the same treatment for his leukemia here in his hometown that he would have received at some of the best hospitals in the country for childhood cancer.
  
  
• That said, it appears that Phin was not randomized into the experimental arm of the trial. As I understand it, he's in the control arm. That means he's getting the chemotherapy drugs in the standard combination for someone his age with his type of leukemia, rather than an experimental recombination of those same drugs that might be more effective. Or the same amount of effective. Or less effective. 
  
  
• Back to the puke thing, though. Maybe the real reason that only chemo broke Phin's no-vomiting streak is that, while he's adventurous, he knows when to back off. Case in point, in the video clip below, Phin has second thoughts about the banana-and-mustard sandwich he requested.
  
  Sorry, Gonzo. Phin cannot follow you down that path.   

 

Phin on Phire

Hey Phin phans, it's Neesha (Dustin told me to tell you that, but I have faith you'll know the difference) 

Here's Phin looking a lot like himself again after he got some blood (3 units) and platelets (2 units). His skin has some color in it, his energy is up, and his good days are good days for everyone.

This was taken on Monday morning, right before he got his CVC inserted (more on that in a moment). Phin, who has always loved to climb, was all over that pre-operating room, scrambling up the back of the bed, pretending to ride it like a pirate ship or posing regally like a king on his throne. Being his joyful, risk-taking, energetic, 4-year-old self.

It was just really nice to see this again, after a few weeks of him wilting without us understanding why, and days of treatment and recovery. And of course there are many hard days ahead, but he's still in there. This is the Phin we know and love. This is who is waiting for all of us on the other side of this nightmare. 

Medical Updates for Today

March 28

A CVC similar to the one Phin now has

Phin had his double lumen central venous catheter placed in his chest today in preparation for the start of his first induction of chemotherapy some time tomorrow morning. 

(Side note: there are at least seven words in that first sentence that are brand new additions to my vocabulary--ones I never dreamed nor hoped to have to learn.) 

It looks like the one in the image to the right, only Phin's is on the other side of his chest above his heart. Also, this is not a photo of Phin. He'd be mortified to have to wear a diaper. 

As he'll tell you, he's a "big boy not a baby!"

 (And here's my citation for the source cus, you know, once an English teacher....)

Phin was opposed to a few major aspects of this surgery:

A nurse adjusts Phin's pulse oxymeter,
a process, as you can see, he has become accustomed to.

• Removing the school shirt he'd insisted on wearing since he arrived at the hospital on Wednesday
  
  
• The nursing staff's efforts to coax him into trading said shirt for a hospital gown with tigers on it because the tigers "are not his favorite animal"
  
  
• The suggested removal of the "noodle" aka well-wrapped/protected IV from his left arm, which he'd grown attached to
  
  
• Not having Mama directly with him in the room while under sedation for the surgery #notthatkindofdoctor
  
  
• Oh, and, of course, not wanting the thing on his chest

Valid.

March 29

So, that's done now and tomorrow today his chemo begins. He did not seem to notice the catheter when he woke up, but he was hungry and demanded we remove the tiger hospital gown they put on him when he was sedated. He was not going to suffer that tiger hospital gown.

Phin on the Daily

Through the weekend, Phin battled a nightly fever that caused serious sleepiness or, at least, weakness. He has not been interested in eating much more than once a day, and when he is hungry, he's absolutely ravenous, but the window may be short-lived. His food wants have also been tricky. For the first few days, he ate every nugget the hospital brought. Once, he requested nuggets, fries AND French toast. Then it was just chocolate brioche bread from Whole Foods, then mac and cheese (the little shells only) with BBQ chips. Yesterday it was meatballs, but we got breakfast sausage from the UberEats restaurant delivery by accident so he ate them instead, with a promise from his Mama that he really would like them (and he did).

Right before the surgery to insert his CVC

But when he DOES have energy, he does everything from painting to moving his Henry (his IV tower aka shadow) by standing on it and swaying his body back and forth like he's dancing to painting, doing puzzles and waving at folks who stop by to drop things off from the window. The Wild Kratts or Muppet Babies shows are ALWAYS on in the background of these activities. 

A quick note of thanks here to everyone. 

Literally. Everyone. We get a lot of questions asking what we need and we honestly don't really know yet. We have very dear friends who have walked these quarters before who know more about what we need than we do. Part of what makes it hard to give an answer to that is the main need, which is for Phin to get better. It's hard to see beyond that giant, glowing sun of a need to the needs obstructed by its view. Another part of what makes it hard to answer that is understanding, with some things, what we need is contrary to what we are used to reminding ourselves we need or even realizing we need at all. My instincts are acting against so much of what we regularly need to tell ourselves: eat, sleep, breathe. There are moments where I will be standing and suddenly my entire body feels so heavy and like a total physical collapse is imminent. We are still figuring out exactly what needs we can meet and which we need help with, but a friend whose daughter is undergoing treatment elsewhere for a different series of cancers (she has three) recommended we post our needs in this blog as we think of them. I promise, as we figure out what they are, we will share. Thank you for your desire to help us fill them.

Granny and sisters wave at Phin in his window

The support we have here is so tremendous, so very much more than we could begin to understand the reaches of. If we don't respond, please just know that your words, notes, quick texts, emails, messages, prayers and intentions and masses (he is so so covered in prayer from so many places and I am so grateful for this every moment of the day)...everything you're doing has held us up and helped us get through the first few days of this impossible phase of our lives. When I feel weak, it is those who are supporting and loving us and our boy with prayer and encouragement that holds me up. It is your words and prayer that keeps me from falling to the ground in despair and helplessness. Thank you for already fulfilling this need I could never have imagined having before.

Phin and "Henry"

Phin rides into surgery like a king

Love-N

Welcome, Phin phans!

Hey there, phans of Phin!

It's Phin's dad, Dustin, here. I'm with Phin at the hospital now. 

He's sleeping and his vitals are okay for the moment, so I thought I'd set this blog up. I hope that it will be a way to keep Phin's phamily and phriends updated on what's happening with him, and also that it might be good for me. I haven't always been the most positive person, and my mind wanders a lot under the best of circumstances. Since we began this new phase of our lives last Wednesday, my thoughts always seem to go directly to the darkest possible corners. I'm hoping that this little project will help me focus, give me a chance to feel like I'm doing something useful, and maybe help with the "staying positive" thing. 

So here's where we're at: 

Phin has leukemia. 

The diagnosis is "acute myeloid leukemia," or AML. It is not the kind of leukemia we were hoping for when they told us he had leukemia. Our doctor told us that about 500 kids are diagnosed with AML in the U.S. each year. Two of them are at this hospital right now--Phin and a kid a year younger than him. 

I just want to pause for a moment and reflect that at some point in the last couple of days we were really hoping the diagnosis would be "a different kind of leukemia." A week ago, we were preoccupied about what color couch to get.   

Phin is supposed to start treatment on Monday--the first round. It's going to involve chemotherapy and bone marrow transfusions. 

(Oh! Also, please consider getting on the bone marrow registry if you haven't yet, and if you can. Many thanks if you're already on there ready to help save the life of someone like Phin. Or maybe Phin himself.)

It's going to be a hard fight, but I can tell you this--Phin is a phighter. Our animal-loving kid is as tough as a lion and there's no way he would have made it this long living in the same house as his two older sisters if he weren't.  

Here's how we got here:

Phin before his appointment on Wednesday.

I picked up Phin early from preK for a pediatrician's appointment last Wednesday. Neesha and I had noticed some bruising on his body recently, which we thought was from low iron, and when he started losing his appetite and acting tired, we knew something was up. Normally, Phin is an insatiable snack-devouring machine who bursts into action the moment his eyes open and doesn't slow down until bedtime, but lately he'd been acting kind of sluggishly. The final indication was when he and I went to the zoo--his favorite place since he wants to be a zookeeper when he grows up--and he told me he wanted to lie down and take a nap. 

So he went to see his pediatrician on Wednesday, got a blood test, and then we went straight to the pediatric ER and then to the children's hospital, and we've been here ever since. He's still wearing his school uniform shirt from the last day he was in his class. He refuses to take it off. 

The trio reunites in the lobby.

We got the feeling the doctors knew it was leukemia the moment we arrived, but we didn't get the official diagnosis until the test results came back, days later. We spent those days wringing our hands, praying, crying, putting on a brave face, beating ourselves up, and generally falling apart. We're still doing all of those things now, each in our own unique way. It's as if Phin's sickness is a funhouse hall of mirrors in which we each see our personal emotional inclinations enlarged and distorted. Neesha said she felt incredible anger. She was furious that this is happening to our son--her anger branching out like crackling lightning in all directions, including at herself, whereas I was dashed by waves of grief, anxiety, and guilt, dragged under and away by currents of remorse and regret. It's too soon to say how the girls are faring. We only told them last night. Av has lots of questions and Obi has been walking around the house with a look on her face like she's trying to figure out how to murder Phin's leukemia in its sleep. 

A few other notes:

• Neesha and I have only told a few people at this point--some family and close friends, friends who happened to contact us just as this was all going down, and Phin's teachers. Please don't feel insulted if we didn't get this news to you with calligraphy. It's just been a crazy week.  
  
  
• It might take a while for us to respond to comments/texts/messages/calls, but we'll do our best. Like even just now, writing this post, about a dozen different medical professionals and hospital staff have come in and out; Phin got mad at me because he doesn't really understand why he has to stay at the hospital, he wanted his Momma, wanted his sisters, wanted his own bed, and didn't want any more medicine; we made up; and now he's sleeping again; and Neesh needed me to send her pics of some documents here for whatever desperate task she's currently working on. Texts and DMs were coming in the whole time all of that was happening and I was writing this. This is all to say, I'll update this as often as I can, and Neesh and I will reply to stuff as much as we can as often as we can, but it might take a while. Sometimes there's just too much other stuff happening, and sometimes we just don't have any more in us at the moment.
  
  
• And sometimes we just want to be present for Phin. Because he needs that. And because we need that, too. 
  
  
• We are 100% Team Phin. If you're on Team Phin, we're on the same team. Same. Team. We don't have time for any other kinds of bullshit here. You feel me. 
  
  
• We're already receiving an outpouring of support and generosity that humbles us and brings us to tears. By the way, I'm discovering that there are different kinds of tears like there are different kinds of rain, and the tears of gratitude for some of you all, those stream gently and sweetly like the rivulets from an afternoon shower on the windowpane of your bedroom in the house you grew up in; other tears, like the ones from existential dread, those come down round and hard like the kind that batter your car and force you to the shoulder of the highway with your flashers on. Anyway, yes. Thank you to everyone who is already on it. Thank you all so much. Right now we seem to pretty much have everything we need, but we're learning that it changes moment to moment, so if you want to help, awesome, thank you, and stand by. We'll tell you when it's go time. 

I think I'm going to leave it here for this first one. I want to try to keep these kind of short. It's a lot, I know. Thanks for reading. I'll be back with more updates on Phin soon. 

Until then, here's a clip of Phin meeting a sweet comfort dog named Bailey.