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%