Day 21

Monday, June 25, 2012

If you were to ask Ari what the worst part of this whole cancer thing has been thus far, he would undoubtedly say it's the times he is not allowed to eat or drink.  As the steroids make him ravenous day and night, the 8 hours before procedures when he is "NPO" (I think it's latin abbreviation for "sorry kid you can't eat anything") are torture.  He doesn't understand why we are withholding food and all he knows is that he feels famished. 

This morning's lumbar puncture was scheduled for 9:15am.  Hospital time is a little like island time (just without the sun, the sand, and the pina coladas), so we did not go to the operating room until 9ish and they didn't start the procedure until 9:45am-ish.  Since Ari woke up around 7:30am, that meant he was asking for "num num" non-stop for 2 hours.  It sounds like this.  "Num num.  Num num. Num num.  Sghetti.  Ma ma.  Num num.  Da Da. Num num."  Repeat 5000 times.

And I kid you not, the second he awoke from anesthesia, he started at it again.  Since we have a routine set for days like today, we had food and beverage cut, plated, and ready for the moment we returned to our room.  Today, his post-op morning meal looked like this:

That's a multi-plate spread of (from top to bottom): chop suey, spaghetti, macaroni and cheese, french fries, broccoli, scrambled eggs, hot dog, fruit salad, and breakfast potatoes.  And milk out of a bottle (because he drinks more than out of a cup).  After his feeding frenzy, only a few bits of broccoli remained.  And then he ate a bag of goldfish for dessert...right before he ralphed. 

Daily update:

We've been waiting all day for the results of the lumbar puncture.  The preliminary results were clear, but we will have to wait until tomorrow for the official findings.  Puh-lease let today's spinal tap be the last for a few weeks.

During this morning's rounds, our favorite doctor let us know that Ari's counts are rapidly increasing and his ANC count is very high for this point in treatment.  She did say that because of today's procedure (a nice big dose of chemo was administered), we will probably see a decrease in good cells over the next few days, but that the docs feel very very good about Ari's progress.

After his nap, Ari asked to go for a walk and play with trains, so we took him to the playroom where he spent a chunk of time walking, playing, drumming, and socializing with the 16 month old from down the hall.  This was the first time he was up, out of bed, and on his feet in over a week.  We were thrilled to see him regain strength, play with toys, and have fun again.  Tomorrow, if it's not raining, we're going to attempt to walk through the garden and go to the playground.

We're in the middle of a steroid high as I type this, and Ari is singing "row row row your boat" over and over.  Best sound ever (even after 9pm). 


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