My son in the ICU: Exposure Therapy

Early October, 2013

A red allergy patient bracelet on top of a hospital questionnaire paperwork

Cory had an anaphylactic reaction (Face swelling, lips blue, can’t breathe) to the anti-fungal drug “Ambisome” early in his Leukemia fight. He wore a bright red bracelet with the word AMBISOME on it to alert medical personnel NOT to give it to him because it could kill him.  The alternative anti-fungal medications are not working. The Infectious Disease doctors say AMBISOME is the only thing that can Save His Life.

Now he is dying from a fungal infection, a complication of his No-Immunity, which is a complication of his Bone-Marrow Transplant, which is all-at-once a complication AND a cure of his Leukemia, which was caused by his Chemo from his previous cancer, that was the CURE of his Ewings Sarcoma cancer.

Yeah.

The irony of his cancer journey does not escape me. It confounds me still. There is a Life metaphor in here somewhere, I’m sure, which I hope to grasp in my lifetime. That the very thing that can Kill him can Save him. Too deep for me at that October moment, because all it felt like to me then was an emotional rollercoaster rising to Hope and dropping to Terror over and over and over and over and over and over and over and over (I cannot write “over” enough times to reflect reality….) again in the matter of a minute or an hour or at most, a day.

Only, it’s not fun.

Because, Feelings and emotions are all fun and games……until they are Real Life.

Anyway, there is a medical plan to bridge the “Ambisome can Kill Him” to the “Ambisome can Save Him”.  It is Exposure Therapy (involves exposing people to larger and larger amounts of allergen in an attempt to change the immune system’s response. Anaphylaxis can occur and this is why treatment should only be administered in a medical environment-Wikipedia)….and it has to be fast, because in the last 24 hours, the heart is once again pin-balling fungus through his bloodstream to land in a map-like appearance on his skin as excruciating large blood-blisters. The growing countries of purple and black land formations of fungus surrounded by rivers and streams of his smooth healthy skin. An invasion.

It was a midnight defense drill. The halls were quiet in the normally bustling hospital. The lights were dim. The children and parents in the neighboring rooms were sleeping. The family set up our chairs in a row about 5 feet from the end of Cory’s bed facing him. We joked that it felt as though we were on Family Feud. We were positioned to yell out the high-point answers to questions nobody asked. Cory was alert and awake and though he couldn’t sit up on his own, they raised the bed so he was upright. He asked if we needed popcorn. This is what we do (our family) ….light banter to break up the heavy fog of grave silence.
Unfamiliar faces filed in with clipboards and glasses. This was the Infectious Disease Team’s team. Their homeboys.
They poked, they prodded, they informed Cory what was happening. The night nurse hung the bag of bright yellow medication from his pole. We watched with feigned composure as we saw it slowly start to drip into his line and flow into his bloodstream.
The laughter left the room with the doctors. It was silent as we watched drip, drip, drip, drip. Cory closed his eyes. I prayed. This is the 1246th time I’ve prayed that he wouldn’t die before my eyes, prayed that his eyes would reopen.
“Cory?” I couldn’t help it. “Mom?” he said with eyes still shut. We all smiled.
So far so good. No reaction. This went on for 6 more hours through the middle of the night.
We chatted, watched a couple episodes of something mindless, until I was called out of the room. I slid the glass door open.
Before me was a scene that looked plucked out of the Apollo 13 movie…6 doctors crammed in the nurses station, all with glasses, button up shirts and disheveled hair from being up all night. They were staring at the monitors in front of them, some in the office chairs, a couple of them perched on the desk, and a couple standing. They were just missing the cigarettes from the 1960’s rendition of the NASA mission control headquarters.

I was looking for a smile, a sigh…trying to read them and ready myself for what they had to report. I see a thumbs up. I am flooded with relief, tears welling in my eyes as I have the urge to fall to the floor. I don’t.
They explain that Cory has successfully been weaned onto Ambisome and has to continually receive it to stave off the life-threatening allergic reaction he had months prior.
Irony.
My hope, my determination is back….as if that has power.
“Failure is not an option.”-Gene Krantz, flight director

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One thought on “My son in the ICU: Exposure Therapy

  1. Pingback: My son in the ICU: Exposure Therapy – Life….Redefined

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