On Anesthesia

There are some things that you get used to when your child has cancer. 

Sooner or later, the beeps and gurgles of the machines become like ambient background noise. After a while, you barely notice them. The same applies to the tangle of attached tubes and lines that at first are so viscerally disconcerting, but which gradually begin to seem like extensions of the child’s body. Even the hospital room, as unnatural as it is with its clinical surfaces, drop ceilings, and tyrannical fluorescent lighting–even that space eventually feels a little bit like home. 

But there are also things that as a cancer parent you never get used to. Things that never get any easier, no matter how many times they happen. I’m sure it varies from one cancer parent to another, but for me, it’s when they take him away for surgery.

Phin on his way to surgery yesterday

The worst part by far is the anesthesia, even though I am grateful that we live in a place and time when it is so available and safe. I am never prepared for the way his voice softens and fades away, or for the vanishing firmness of his grip on my hand or my sleeve as his body goes limp. No matter how I steel myself, I am never ready. Never. 

“Daddy, please don’t leave me!” Phin pleads.

Going.

“Please don’t leave me.”

Going.

“Please…don’t…” 

Gone.

And then I leave him. A nurse gently places a hand on my shoulder and escorts me out to a waiting area, and I sit there alone, thinking about this child, my son, whom I swore I would never leave. Under the fluorescent lights and the silent weight of my broken promise, I sit.  

But that recurring betrayal is only part of what makes it hard. Again, I cannot speak for every cancer parent, but I have noticed that something has changed in me since Phin’s diagnosis, where now certain situations feel like grim rehearsals for the unthinkable worst case scenario. No surprise. Most parents, upon learning their child has a potentially deadly condition, start taking tons of photos, stockpiling evidence that this child was here, was alive, was happy. We become hoarders of our child’s moments since one of those moments might be their last. I think this kind of mindset has contributed to the change I’m talking about.

For instance, last Christmas Eve, as we were getting ready to leave for church, I noticed Neesha stop outside the bathroom to adjust Phin’s little bowtie. I pulled out my phone, and the photo I snapped turned out pretty well–a tender moment between son and mother. Later, someone even grabbed it from wherever we posted it and had it framed for us. But when I looked at the screen after I snapped the

Phin and Neesha, Christmas Eve 2023

photo, my blood ran cold and I audibly gasped. I stood for several moments, frozen in terror in the hallway. It was something about the light, the tilt of Phin’s face, the peacefulness of his expression. No, I reassured myself. No, he’s alive, he’s alive. This is a happy time. He’s alive and he’s healthy and we’re okay. 

And he is, and he was, and we were. Still, even now, when I see that photo framed in our home, I have to reassure myself, to force myself to see the moment that it captured instead of the dark possible future it portends. 

I bring this up to provide some insight into how haunted your mind can become after your child gets cancer, and for context into why even ordinary things like scheduled procedures with anesthesia can feel so hard. 

For me, it isn’t just the climactic moment when the anesthesia takes hold and Phin falls asleep. Even the act of accompanying him to the surgical unit is a trek through a landscape of dread. I feel a deadening cold creep into my arm each time I walk beside his rolling hospital bed and guide it down the twisting corridors. How many caskets have I borne this same way at the quiet little cemetery on the edge of my hometown? I’ve lost count, but enough. Enough that now, walking beside Phin’s bed as it rolls, my hand slips into the grips on the side, muscle memory snaps my elbow rigidly into place, and my mind is dragged back to the site of those somber funereal walks. The double doors open to receive my son’s bed. This is where I will have to tell him goodbye. I choke down shrieks. 

It’s so hard because it feels like it’s practice for losing him forever. But it isn’t supposed to be like this. I once had a professor tell me that losing our grandparents helps us rehearse for losing our parents. That, she said, is the normal progression of it.

Not this, though. This isn't how it's supposed to go.

No parent should have to rehearse for losing a child.

Medical Updates

Phin woke up from the anesthesia yesterday with two fewer primary teeth, which were successfully extracted. He's got some stitches in his mouth and it's kind of sore in there, but otherwise, he's doing well and hoping to get discharged later today. Three more unsalvageable primary teeth need still need to be taken out, but his team has chosen to wait on those so as not to put too great a strain on his fledgling, post-BMT immune system.

Speaking of his immune system, this is Day +35 and we have some results from last week's chimerism (think chimera, from Greek mythology) test: Phin's Myeloid Cells are 100% donor. His T-Cells are 85% donor. This means the bone marrow he received from his donor is engrafted and cranking out cells, and the good news is all of his myeloid cells are now coming from the donated marrow. Still 15% to go on the T-Cells, but excellent progress.

Thanks for reading and following, Phin phans. It means so much to us.