Platelet Transphusion

Phin carries the sheets and blankets 

to help with his nightly bedding change.

Dustin here, on another late night here in the Children's Hospital. 

Phin needed platelets today. It was an expected result of his chemo, and he has received platelets before, but today there were no platelets nearby to be had. An order was placed for some platelets to be shipped here. It was nearly 11 p.m. when the platelets arrived. 

(I'm told there is a platelet shortage, which is troubling because platelets are an essential part of the immune system, thickening the blood and allowing it to clot and heal wounds. The American Red Cross is urgently seeking people who are willing to donate platelets.) 

Now, after midnight, Phin is asleep and the platelets are in. I text Neesha to let her know. 

 

"Watch him like a hawk," Neesha texts back. 

I'm already doing that. 

We have experienced moments of profound dread since this all began--dread, and maddening sorrow and grief. Our souls bear the cuts of the slick knife of hope and the burns of scalding liquid rage, and they have been stretched as taught as strings on the creaking rack of guilt and scoured by regret and subjected to all manner of torment so that we have become more quick to recognize the marks of these agonies in the eyes of other cancer parents than we are to recognize our own reflections. 

But for me, so far, there has only been one instance of true terror, during a platelet transfusion one afternoon in April. In the span of a few seconds, a full-body rash erupted on Phin, and by the time anyone realized his body was reacting to the platelets, he was clawing at his throat. His airway didn't fully close, luckily, but the rash suddenly exploded into itchy raised hives, particularly on his scalp, and Phin, now writhing and gasping, slashed and dug at these with his fingernails, covering his hands with a gory pulp of blood and hair. 

In the scope of bad things that can happen on a pediatric oncology ward, this incident was minor. Not a big problem. Nothing to worry about. Just get in front of it with Benadryl and Tylenol. 

Still, I will never forget it. I will always be on high alert when platelets are going in. I will stay awake forever if it means I might prevent that nightmarish scene from happening again. Just the memory of it makes the staying awake part easy.

Phin tries out the pirate eye patch that

his nurse, Franki, improvised for him.

Medical Updates

"Boring" is the adjective that his physicians continue to use to describe his progress, and as we've noted before, boring is phan-phrickin'-tastic. He had some light sensitivity (another side-effect of the chemo), but he pirate-life'd his way through it. His docs marvel at his high level of energy, and I really wish they would either explain it or publish a paper about it because my understanding was that there'd be some lethargy if the WBC, RBC, hemoglobin, and platelet numbers were all in the toilet, but this maniac springs out of bed every morning and runs full throttle up and down the hallways until nearly midnight with nothing in his stomach but three bites of a Belgian waffle and a fistful of Doritos. Nothing in any science class I ever took explains how that's even possible. 

Phin On the Daily

Even though he's isolated from the world as it shifts into back-to-school mode, and though he hasn't been outside often enough lately to notice summer beginning its slow, lurching wobble into fall, Phin must on some level detect a hint of change in the air. We haven't spoken to him very much about the upcoming school year because we aren't sure how soon his immune system will be stable enough for him to start it, and also because it makes him sad that he can't return to his preK class since all his friends have moved up to kindergarten. 

"You see, Phin," I said, "it's a lot like in Thomas Wolfe's masterpiece, You Can't Go Home Again, where--" 

"I don't want to talk about that," Phin said. "But Dada, will I still have the same voice that I hear when I talk when I'm big?"

"You mean, like, will your voice change?"

"Yes. Will my voice be different?"

"It will probably get deeper as you get older," I said, "but it will happen gradually, so you won't even notice." 

Phin started to cry a little.

"I don't want my voice to be different," he said. "I want it to still be my voice that I hear." 

"Do you like your voice?" I asked.

He bit his lip and nodded. 

"It's a really good voice. I think, as we get older, our bodies change, and our voices just want to keep up." 

"Will you still be alive when I'm older?" Phin asked.

"Bro, let me tell you, if you get discharged from this hospital and I haven't been struck down by a massive heart attack or a stroke, I'll be totally amazed. I mean, just absolutely 100% shocked."

"But when I'm older, will you be alive or..."

"I mean, maybe, dude. Maybe. I'll try, you know? How about you work on getting old and I'll work on getting super old, and when I'm super old, if I can still hear, I'll tell you if your voice still sounds good. That okay?"  

"Okay," Phin said. 

Then he added, "But I want it to sound like it does right now."