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 resembles his first. A lot of the same people are caring for him. He's staying in the same rooms at the same hospital. His habits and routines have resumed--the way he races through the corridors when he's feeling well or tiptoes around looking for nurse friends to prank. And Neesha and I have readjusted to the alternating one-night-at-home, one-night-at-the-hospital tag team act that we did the first time. 

Mostly.

Occasionally, I wake up in the flickering monitor darkness of Phin's hospital room and become briefly disoriented in time the way people who travel become disoriented in place. I blink and know exactly where I am, but not exactly when. Is the chemo-ravaged little boy sleeping next to me expecting to complete his remaining treatments and go home soon, or has he just relapsed and come back? What kind of stone sits in my chest, the raked kind that tumbles into the fire, or the thrown kind that sinks into the depths? Was everything we did with him over the 18 months he was in remission just a dream? Did we ever leave here at all? Sometimes it's hard to tell. The resemblances between this time and last time are too numerous and too great. 

But there are also differences. Last time, as his nurses will all attest, Phin sailed through the rounds of chemo and count recovery without major incident. There were setbacks and delays, yes, as well as moments of real terror, pain, sadness, and dread. For the most part, though, last time Phin avoided the complications that can happen to people when they have key components of their immune systems taken down to zero--serious infections, high fevers, racing heartbeats, tubes that go up the nose and down the throat. 

No more. The past 36 hours were originally scheduled to represent a kind of home stretch to the bridging chemo phase as he completed his oral chemo and his blood counts flickered back to a level resembling normal. Instead, Phin has danced on the edge of a cliff, his pulse never dropping below intensive cardio workout levels, his fevers spiking regularly and rarely dropping below 103 degrees for long. He picked up an infection from e.coli, most likely the result of the bacteria leeching into his bloodstream from his constipated bowels and multiplying rapidly there in the absence of any immune response. 

Last night marked the crossing of a threshold for us--one that many other kids with cancer have already crossed--and it was truly a study in anguish, one in which the unwavering vigilance and heroism of Phin's nurse Alexa cannot be overstated. 

Medical Updates

Things are not great right now, but we're cautiously optimistic they're getting better. Today, Phin's care team made some changes, and we're seeing little signs of improvement like lower fevers with more time between them and a heartbeat that hovers around 140 bpm instead of 200. Progress. 

Priority number one is to stabilize Phin. After that, we can determine what havoc this infection incident will play regarding his bone marrow transplant. Remember, this phase of Phin's treatment was called "bridging" because it was supposed to be like a bridge from his return to remission from his initial relapse to the inevitable BMT--his only option--at CHOA. 

And here, buried many paragraphs down in this update, is the feel-good lede that we had previously hoped to put front and center: A bone marrow donor for Phin has been located who has confirmed a donation date of May 30. Since bone marrow cells have an extremely short shelf life at the temperatures they're subject to during transit, Phin's transplant date is scheduled for May 31. A lot of things have to line up and go right for him to receive those cells. He needs to recover his counts and be discharged. And he needs to appear at his preliminary BMT evaluation appointments at CHOA on May 7. 

But first he needs to beat this infection, so we'll cross that bridge when we come to it.  

[April, 2024]

The Phindex

Units Phin received of blood: 2

Of platelets: 3

Days of consecutive IV chemotherapy: 4

Number of oral chemotherapy pills swallowed: 88

Length of inpatient hospital stay in days: 20

Bandage changes: 4

CT scans: 1

X-rays: 4

NG tube placements: 2

Number of times Phin achieved uncontested victory over his nurses and father at UNO: <5

Likelihood Phin plays +4 card while laughing maniacally: 100%

One Phoot In Phront of the Other

A dear friend wrote me the other day, reaching out to offer support and love in that ever-present way you--our village--keeps showing up for us. She wrote that our posts: "make it seem like you and Dustin have it all together and things are going smoothly, but I know in my heart there's so much more behind the images and the updates."

This is true. You probably all know this in your hearts. 

And I know it looks like we're strong; people say this a lot, but we are no stronger than anyone else. The way I see it is this: when your child is diagnosed with cancer or another potentially deadly disease, you have two options after you allow yourself a complete and utter meltdown: fight or paralysis. You put one foot in front of the other; you figure out how to navigate this new life; you keep moving forward because to give into the alternative is a paralysis of movement toward saving your child—time is not a luxury you have; paralysis is absolute destruction to the family life you've carefully curated and nurtured since its inception, a potential destruction to the child you desperately cannot imagine living without. And, make no mistake, some people have little choice but to choose that option. Some people live in countries that can't offer the treatment Phin is receiving here or they can't afford it if they do; places where there is no option for support. They are desperate, but limited. Some people carry crosses much bigger than our own: war-torn countries where they have to flee just to receive medical help for their child, more than one child with a potentially fatal diagnosis or more medically complex situation.

But I didn't start this post here today to make you sad. I am inspired to write to verify what my friend said because she is 100% correct. As I’m sure so many have thought and I know some have expressed, I can confirm: this life is hard. Dustin and I are both still working full time. Our girls are still going to school full time across the city from where we live. Dustin and I are both teaching from the hospital some mornings and sleeping at the hospital every other evening so we can see all of our children. During the workweek, we only see our girls every other day. By the time we get home at night, they're already in bed. This also means that if they need help with homework and don't want to (or can't) work with the adult who is home, we are FaceTiming to study spelling or vocab, social studies, math; we are talking through essay-writing as if I'm teaching another Zoom class. Every one of these situations is, in some way, representative of a gift we’ve been given by the people in our lives. We are fortunate to be able to continue our lives, to reshape them—however hard it may be—to continue our life in these ways.

FaceTime HW with my Girls

Any given workday for me or Dustin might look like this:

• Wake up in the hospital between 6-7 a.m.
• Get ready for work
• Grab laptop and teaching materials, set up "class" in a quiet space of the hospital
• Teach at 8 a.m. for 2.5 hours on Zoom with a brief break to check in on Phin (who is usually sleeping, but also currently monitored by Uncle Kiran who has been showing up before class to stay with him when he wakes)
• Struggle to find foods Phin will eat, try to keep stuffing him with those foods
• Spend the rest of the day trying to engage him with activities while also responding to emails
• Spend the rest of the day trying to keep Phin from hurting himself because he has unusually high energy for a child with almost no platelets, red blood, wbc or hemoglobin; his brain does not recognize that his body should be too tired to race through the halls on a tricycle, so he does it. A lot
• Collect, measure, and record Phin's urine and poop
• Help administer medications and prophylactic treatments (mouth washing with a sponge-stick doodad) throughout the day from the moment he wakes until bedtime

  

  Phin's bath

  
  
• Give Phin a bath (this is not your ordinary bath; Phin cannot get wet, so we use a bag of 6 sterile wipes--one for each limb, front torso and back--to wipe him down thoroughly)
• Wipe down and set up a fresh bed with clean linens (Phin must bathe and have clean sheets every 24 hours to help prevent infection and maintain a sterile environment)
• Get Phin to bed (ha; this boy does not want to sleep)
• Grade and prep for classes while he sleeps OR while lying beside him trying to get him to go to sleep
• Either sleep in the hospital crammed into the bed with Phin who prefers not to sleep alone here, potentially (if you're a light sleeper like me) waking whenever a nurse comes in to take vitals or draw blood, or sleep on the parent bed, which feels perfectly comfortable because we're too exhausted to notice if it's not OR
• Swap out around 10:30 p.m. when the spouse who has been home teaching an evening class is done teaching and travels back to the hospital to relieve you 

D (preparing his lesson)
and me (teaching over Zoom)
on separate occasions from the hospital

So while this life is hard, no doubt about it, it is as smooth as it can be, given the circumstances, and it's smooth because my brother and my parents have been able to take turns moving into our house to help take care of our girls. It's smooth because our employer agreed to put our classes fully online this quarter, allowing us to make this life as livable as possible without losing our ability to pay our bills. It's smooth because our children's friend's parents are the best friend-parents around; their school is compassionate and concerned and invested in doing what they can for our children. It's smooth because we have an army of people ready to take shifts when needed, because we have so many people rallying and doing for us what we ourselves don't even know we need. Most importantly,  it’s smooth because Phin's care team is incredible; they make him feel safe and loved. because Phin is doing relatively well--and I attribute this to science and allllll the prayers and love his Phin Phan Tribe and, even strangers, are constantly sending. 

My friend was right, though, there is so much more behind the images and updates. 

There are the very physical responses Phin has, the uncertainty of how all the chemotherapy is affecting his internal organs and functions. No matter how many videos or photos we take, we can’t know those consequences just yet.

Phin has nausea some days and unexpected side effects others. Just this week, he kept shaking his head like he had water in his ears; we worried this could be tinnitus, a potential chemo side effect that has no cure. A constant ringing in his ears for the rest of his life. Most days he lacks an appetite. He's lost almost four pounds again. When he does find something he likes, we stock enough to have available whenever the mood strikes. Right now, it's homemade pancakes. When I was home yesterday, I made three batches.

There’s the anxiety. So much of it. A burden you don’t see but that each of us carries.

Obelia had a big birthday (10!!!) and it was a hard one because we couldn't all be together on the actual day. She didn't want to celebrate. She expressed her sorrow, her anger at just wanting everything to be normal again, for Phin to be home.

Obelia's early celebration so
Phin could be home

There’s the fear of what this is doing to our girls. It’s hard to keep them on track academically because we're not consistently home to continue helping them in ways we know work for them, ways we’ve been perfecting for years. It's hard to not know--and fear--how all this is affecting them, the damage this trauma may be wreaking.

There’s the difficulty of not having consistent interaction with the only other person as attuned to the impact of this life as you, the ability to connect over this crisis we are living through. Dustin and I are barely in the same room at the same time for more than 10-20 minutes . The majority of our conversations happen in snippets or via texts. We are like an estranged couple sharing a house but never living in it at the same time. 

 

There is exhaustion. So. Much. Exhaustion. The emotional, mental, and physical toll, the incredible weight of it all. My soul is exhausted in ways I’ve never known possible. There is hope but, as Dustin has said, even hope is exhausting. Perhaps the most.

And I would be a liar if I said there weren't moments at the end of the day when I'm walking back to the house, glancing down at the grass, that I don't consider giving in, collapsing onto the ground, lying against the earth in the prickling blades, stars, clouds spread out above me like the dark, distant abyss I see ahead of us, and sighing long and deep with the relief of not having to hold the weight--the sheer magnitude of it all--of myself up anymore, just for a few minutes. Not having to conjure up the strength to keep myself in motion--the motion of our lives, putting one foot in front of the other--anymore, heading toward that mysterious, fate-filled darkness of the terrifying unknown that lies ahead. 

Of the choices we get to make, and we don't really have many, not to mention every one of the ones we have are hard, we choose to celebrate every moment Phin feels good, every moment we're all in the same city and we get to see our girls for even 45 minutes every other day (which is what we were doing last quarter when Phin first relapsed), every moment of normalcy we can snatch--a few hours at the pool with the girls splashing in the water, chatting with our neighbors, soaking up the Vitamin D that

makes us happier; chasing Phin around the unit, the squealing laughter and tires of the tricycle he rides as he goes; walking in on late night games of UNO, Phin and his nurses huddled around as if at a poker table, slapping down cards and sharing stories; late night rom-coms with our girls, buttered popcorn passed between us as we burrow further into minky blankets. We are keenly aware these are precious moments. 

We cannot live any other way but to relish in and be grateful for every one of them. We keep it together because we have to. The alternative is unthinkable.

The future is too uncertain to do anything else.

-N