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.