A Triumph

 

Hi there, Phin phans! Dustin here. Let's pick up right where we left off a week ago, when Phin rang the bell. 

So, with a shower of confetti and a roar of cheers from his Children’s Hospital family, the curtain fell on Phin’s fourth and hopefully last chemo admission. It was his longest consecutive hospital stint, at 36 days, and also his most grueling. The chemo effects that he shrugged off with such indifference in his earlier rounds battered him and brought him down hard this time, and the menacing specter of infection that he had so deftly evaded caught him at last, at the very moment his counts were at their nadir. He blew past his projected stay of 29 days, but in the end it seemed fortuitous in a way that no one could have planned. 

Phin’s ringing of the bell followed his friend Aspen’s, and we were told the two of them made history a little bit, as no one present could remember a time when two AML kids rang out on the same day, that type of leukemia requiring such lengthy inpatient treatment cycles (120 days total in the hospital for Phin–many more for Aspen) and it being so exceedingly uncommon in children. It was a wonderful moment. A joyous and tearful celebration where we said goodbye to many of the people at the Children’s Hospital who have been such a huge and important part of these kids’ lives for most of this year, who have seen these kids more than their own families have. Who have become like family to them, and to us. 

Shortly after Aspen and Phin rang the bell, the crowd dissolved. We signed the discharge paperwork. Phin mounted his bike and charged out the double doors of the pediatric specialty unit for what we all hope is the last time. I stood there on the floor strewn with confetti, staring at the doorway, wondering how I should feel. 

I'm still wondering. I still lurch in the direction of the bathroom whenever I see him go in, forgetting that it is no longer necessary to measure and record his urine output. I still reach for my phone each morning out of habit to open the medical chart app and check for bloodwork results that aren’t coming. I still wake up in the middle of the night to lie there, exploring the alien terrain of some hypothetical future, or conducting yet another interview with ghosts from my past, or standing trial in the court of my conscience. Nights are still the worst.   

Sometime in the days since Phin came home, somebody told me, “I bet this feels just like waking up from a bad dream.” 

“Yeah,” I said. 

It was a lie. It doesn’t feel like waking up from a bad dream at all. For one thing, I am not at all convinced that this is over–not yet–and for another thing, even if it were, we’ve all come too far and gained too much knowledge, purpose, and perspective to compare it to a dream. Besides, like I mentioned, I’ve been awake for most of it anyway. 

Also not sleeping much around here lately: Phin. Not because he’s anxious or filled with existential dread or whatever. He’s just living as hard as he can. Splashing in water! Playing at the neighborhood playground! Having a bath instead of a CHG wipedown! He leaps out of bed at 6 a.m. and doesn’t slow down until 8 p.m., just like he used to do, only with a sense of enthusiasm and appreciation that wasn’t there before.   

Neesha and I have been getting some questions, so here goes: 

• What happens if Phin gets sick now? It will probably suck in the same way that it sucks when any kid is sick. Phin’s levels are still (probably) relatively low, but they’re supposed to come back up and stabilize. Plus, I look at it like, back in March, we sent him to school the same day we would later rush him to the ER, when it turned out he was actively dying of leukemia and his bloodstream was like thirty-something percent blasts, and he’s probably way stronger than that right now. We’re still trying to be pretty careful, but we’re not currently wearing hazmat suits over here.   
  
  
• What’s life like for him? Lots of playing, rediscovering toys, foods, and activities, and getting ready for school. Phin talks about the friends he made at the Children’s Hospital every day, and he is also excited about the friends he met when he briefly visited his kindergarten class this week.
      
• Is there anything Phin can’t do right now? We aren’t taking him into a lot of stores or restaurants yet, he still can't go back to school for a while, and he isn’t supposed to get the spot where his CVC was located submerged in water until it heals up a little more. Otherwise, he’s not operating with a lot of restrictions. 
  
  
• 
  Is Phin cured? From what we’ve been told and what we’ve read, Phin won’t be considered fully cured until he has survived five years cancer-free after his last chemo admission. At the moment, we can report that the results of the bone marrow biopsy that was done on the day he was discharged found no evidence of disease, which means all the chemo he got wiped out whatever leukemia was in him to the level that it can no longer be detected. The question (or one of them) that keeps me up at night is, will Phin’s bone marrow be cool and churn out regular white blood cells from now on (full remission), or will it resume spitting those mutant blasts into his bloodstream (relapse) and force him right back into the hospital to undergo all of the chemo treatments again plus a bone marrow transplant?  
  
  
• What’s next? Regular checks at the clinic to monitor his bloodwork and let us know how he’s progressing and whether (please...please) remission is holding. 

Note on Unexplained Occurrences
Long ago, for my comps, I had to read hundreds of nonfiction travel accounts, and in them every so often an otherwise straightforward and sober author would pause to confess that something they saw didn't make sense, usually acknowledging that what they are about to say might sound crazy, but nonetheless, they still saw it and are therefore duty-bound to report. John McPhee describing a UFO that he saw while driving through the mountains in Annals of the Former World is an example. It is in that same spirit that I present two incidents from Phin's final days in the hospital, both of which I am at a loss to explain.

The first happened one day in late July/early August at the Children's Hospital playroom. Childlife Specialist L_______ and I were chasing a tiny blue bouncy ball that Phin was throwing. We had been at this game for about 30 minutes when Phin threw the ball and it bounced toward the cubbies under the front window. L_______ and I both went after it. I watched the ball bounce into an empty cubby. I saw it ricochet wildly around in there as I stepped forward and bent down to retrieve it.

Then, I watched it vanish from existence.

It was like seeing in real life the special effect that junior high kids use in video projects, where they film an object, pause the recording, remove the object, and then resume recording. Poof! Gone. Right before my eyes. "Where's the ball, Dada?" Phin called.

I just stood there, mouth agape. Then I conceded that exhaustion and stress must be doing things to my mind and my senses, and the three of us tore the entire playroom apart. We searched every cubby and every cranny, our clothes, the space beneath the door on the opposite side of the room in case the ball somehow rolled all the way over there in front of all of us and escaped the room without any of us noticing. Nothing. It was as if it had simply fallen out of this universe through an unseen portal, or as if it had been snatched up and enclosed by an invisible hand. L_______ was completely confounded and swore to continue the search. Weeks later, as we were preparing to leave, she updated us: Still no ball.

The second incident happened in the morning on the day we left.

I was packing the rolling cart with Phin's belongings to take down to the car when I felt something touch my hip under my clothes. It felt like ice cubes. Several different places, but close together, pressing gently, like fingertips.

"Hey Neesh?" I called. Neesha was across the room, packing up more of Phin's stuff to take down. "Do you remember the thing that always happened in your old office? The ghost touches thing?"

Neesha's first job in this town was as director of writing for a college that had bought up old antebellum-era mansions and converted them into its administrative buildings. For several months after she started, she would complain about sudden ice-cold sensations on her skin, usually on her wrists and hands. She had assumed she was developing carpal tunnel syndrome. One day, as I was killing time in a bookstore, I found a photo of her office building in a book about local haunted houses. I took a picture of the page and texted it to her, and suggested cheerily that she was probably being felt on by a ghost at her job. She said that given some other stuff that had been happening in her office lately, that made a lot of sense.

"Yes, I remember," Neesha said, without glancing up from packing.

"This is going to sound so stupid," I said, "but I think I had it happen to me just now."

I expected her to tell me to focus up, or to chuckle and tell me to get back to work. But Neesha froze.

"Something like that happened to me, too," she said. "Last night, Phin was asleep, and I was showering. All of a sudden, I felt someone touch me." She pointed to her hip. "But when I looked, no one was there."

For a moment we just stood in silence in the room. Phin was playing happily with his stuffed animals on the bed.

"What...what does this mean?" I said. It would be the last in a long, winding parade of answer-less questions that I asked in that room.

Neesha just shook her head, lowered her gaze, and kept packing up Phin's things to go home.

Final Thought Phin phans, we are hoping for nothing but boring stuff from here on out, and our updates might get a little less frequent. We're going to keep posting, though. Thank you all for reading these posts and for all the love and support you've given to Phin.