The rules

Saturday, December 28, 2013

This cancer stuff is not a game, but for the purpose of this post, please just go with it. 

To attempt to win the game, players must adhere to a strict set of rules.  You must administer and take meds on time.  You must wash your hands often and stay far away from sick people.  And you must always, no-matter-what, go straight to the ER if you have a temperature over 101 degrees celsius (or 38.5 farenheit).  A temperature is the first sign of an infection.  And an infection can stick to the port implanted in Ari's chest that goes straight to his heart. 

If you break any of these rules, you may lose the game.  (Are you following what I'm saying?)

Okay, so we've been diligent rule followers.  We want to win. 

But after a week of high fevers, a bunch of trips to the ER and the clinic, and the same result each time (it's a virus...) we felt a little too comfortable at 2am Sunday night when Ari spiked another high fever.  And by comfortable, I mean very tired, warm, and cozy.  And by comfortable, I mean Ari was playful and happy.  And by comfortable, I mean, after 18 exhausting months of this seemingly never-ending game, we made a not-so-informed decision to disregard golden leukemia rule #3. 

We all (nervously) went back to sleep. 

And when we woke up in the morning, we very quickly made our way into the clinic for what we thought would be the same-old same-old fever story.

But this time, Ari didn't have a virus.

He had an infection.

I am being a bit dramatic in my story telling because it wasn't the type of infection that grows in the blood and adheres to the plastic line in his body.  It was an infection caused by the virus he had earlier in the week.

Either way, I learned my lesson.  We have 7 more months to compete and we will follow all the rules and do our best to kick cancer's tushie.  (Even if that means driving to the ER at 2am.  Or listening to Ari in the middle of last night give a two hour-long steroid induced monologue about trucks and fish and Christmas trees and swimming pools and anything and everything else on his mind.)

And I'm so relieved (understatement) that we're still in the game.


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