This blog started out as a chronicle of my son's fight with neuroblastoma cancer. Fortunately he has been doing so well that there has been less and less to chronicle regarding this disease. I have decided to expand this blog such that it will cover all of my family. Don't worry though, the information passed will still be filtered by my rather large, impressive, and completely insane brain. So grab some pancakes, and buckle up.

Monday, October 3, 2011

10-3-11

We have now booked 24 hours here in the PICU for round one of immunotherapy.  Before we get to a wrap up of today’s events, we have some old business to take care of.

In my last posting I did not provide my readers with the results of the tests that were done a few weeks ago.  Please accept my almost humble, and slightly sincere apologies.  The tests were generally good.  The only area that shows any active cells is that one spot that the surgeon could not get.  The bone marrow looks good, and the parts of the bones (hip) that had been chewed up a little are starting to grow back.  So while we are not completely out of the woods yet, we are on the right track, and are moving in the right direction.

Now on to our current experience.  We checked in last night, and I was very pleasantly surprised to see that we had been upgraded to the corner presidential suite (I am pretty sure that it was our frequent hospital miles and/or my amazing good looks).  All day I have been trying to reserve this room for next time.  The space is even big enough for an air mattress.  Now while I am all for nostalgia….air mattress v stupid misshapen uncomfortable torture device chair/bed thing……um…..this seems like a trick question……I think it is a squirrel but I am going to say Jesus.

Our first nurse was very nice, was cranially dotted, listened to every word I had to say about Cole’s medications, and (come to find out) paid me no mind whatsoever.  Fortunately the doctor remembered Cole (aka the VIP, aka Mac Daddy, aka The Little Engine that Could), and rec-o-nized.

The overnight nurse was apparently tasked with remodeling the room, or maybe it was that she was born with sledge hammers instead of hands, or maybe it was that she knew that I was uncomfortable sleeping on the torture device so she wanted to make sure that I was not sleeping.  Whatever the reason, she was louder and more annoying that any Queen ever was.  Here is some serious advice for all you nursing students (as well as anyone who has no sense), if you are working the graveyard shift and you go into a room to check vitals, check a machine, etc, and you notice that all the people in the room are asleep (2:30 am, TV off, lights off, lack of significant movement, possible snoring….all good indicators of a sleeping room), then there is no need for you to talk to yourself (nor to talk to the voices in your head….they are probably asleep too) out loud.  Seriously.

Today we have had two very awesome nurses (and they also seem to be good at medical stuff too). 

They pre-medicated (insert George Carlin rant about how giving medication before is not premedication, it is just medication, but I am too tired to run that one out) Cole prior to starting him on the actual antibody (the antibody is the hook and signpost thingie from my last post that is the foundation of immunotherapy).  One of the pre—medication drugs that they gave him was Benadryl, which resulted in Cole taking a nap for most of the morning. 

This afternoon, we played a little Wii (My Sims and ThrillVille were the soup de jours of the day), and then after we were all warmed up, we pulled out the D&D.  After engaging in a few battles, Cole decided that he wanted to be the DM (for those of you who are lost, please find your local nerd and get caught up).

As DM, Cole shows a complete and utter disregard for the rules of the game as well as no interest in keeping to reality (even within the relative framework of D&D).  He makes things up as he goes along.  If you ever play with him you have to understand that the colorful story is way more important to him than winning, losing, actually playing.  It is AWESOME.  I love seeing his creativity. 

By way of example, I had just killed about 8 minions and recovered the mechanical horse from the swarm of 12 goblins that had been riding it.  I then fought a mummy who was eventually eaten by said horse and pooped out.  As I scoured all the bodies for treasure I found the following items (it is important for those of you who do not have any nerds locked away that can give you perspective.  This game is set in Mid-Evil times.  Think Lord of the Rings, King Arthur, Swords, no plumbing, etc): 1 million gold coins, a key, a treasure chest, a TV screen, some garbage cans, and some more garbage cans.  I tried to see if the TV worked, and when I turned it on, the picture was of my party trying to save the princess (at which point my ½ sized DM said, “Do you think it is a good idea to turn it off?”  Uh….of course it is.).  Love it.

Tomorrow we have to do double homework (today’s and tomorrows) or else a certain wife who will remain nameless will kill me until I die from it.  Until then please raise your glasses and toast Cole, creative genius. 

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