Friday Night-- Brody sleeping comfortably right now.

Brody has continued to have intermittent pain-- some times worse then others. His leg has not been too bad today but his back has been pretty sore... I (Bill) need to stay pretty close at all times-- I did sneak across the street to Ronald McDonald House for dinner but otherwise-- the farthest I've gone away from his room is down stairs all week just in case he needs me to rub his back or his leg. It sometimes does not feel like I'm helping him but he doesn't want me to stop even when he is in extreme pain so I keep rubbing his lower back softly and it does seem to help eventually (sometimes quickly but not always)-- I'm quite sure Trish or anyone else could do it as well as me but he doesn't believe it and I have very warm hands so that is my job right now

While he is definitely experiencing nerve pain, I'm of the opinion that his back muscles are involved at least somewhat-- sometimes it will stop hurting if he gets up and/or changes sitting positions in bed. He still finds it uncomfortable to sit in chairs at times but once again-- I'm of the opinion that some of it is anxiety/muscle involment-- he will get anxious about something, tense up, and the nerve pain follows-- the atavan has become our "go to" medicine right now because it usually works within minutes-- it relaxes him and sometimes makes him fall asleep... if he does stay awake he will be a little loopy for a while. We are not giving it around the clock since we don't want him sleeping all the time but if we can't relieve his pain within a few minutes of rubbing then we call for the Atavan (which can be given as needed but no more then once every 4 hours)-- he has been getting 3 or 4 doses per day.

Thankfully he is not in constant pain and I loved hearing him laugh at Geordi today when Geordi did something on a video game that Brody saw and was apparently funny. We have gotten a TON of use from our playstation that we brought down with us.... we have all of our video's, a few select games, and thankfully the internet here is pretty fast and reliable and we have been watching via our Playstation 3-- Netflix, Vudu movies (we have bought or rented quite a few movies while stuck here), and at least a little bit of Amazon prime streaming service (Brody likes watching "the rugrats" sometimes and this is only on Amazon prime).

Brody has had a persistant fever the last few days-- the bacteria from his infection last week has been identified and is susceptible to the antibiotic he has been taking and all his blood cultures since 24 hours after his positive have been negative-- we are concerned of infections somewhere else in his body or the bacteria has developed resistance so they have been taking cultures from his stoma, stool, urine, nasal, and throat-- and we have gotten the infectious disease physicians involved. It is possible it is a viral infection too so that is  being checked too. It is possible that the tumor is causing the fever even though he has spiked up over 102 degrees a few times--- I'm sure Trish will correct any of my mistakes in the above paragraph-- I usually get the gist of the dicussion of such things but frequently miss some details...lets blame this on my lack of sleep.

As mentioned in a previous post-- Brody got an NJ tube placed yesterday-- this goes through his nose, down his throat, through his stomach and through the first foot or so of his small intestine (Duodenum) to the jejunum (where the "J" comes from)--- this is a feeding tube as he is unable to adequately nourish himself yet and is going to replace the TPN that has given him nourishment via his IV-- since his surgery. He will slowly transition from one to the other-- his NJ nourishment will slowly be increased as his TPN is decreased..... this is a necessary step (besides pain control) in order to go home. He will still be able to eat with the NJ tube in place but so far he has not been eating nearly enough to adequately nourish himself (calories or viatamins/minerals)-- they are giving him a small amount so far-- 10 ml per hour of pediasure to start. This is will slowly be increased as he can tolerate

We are all doing ok overall-- we have all learned to live in the moment.

Brody is sleeping comfortalbly right now as should I-- he will be awoken in about an hour to take his pazoponib (the new chemo he started on wednesday) pills which have to be taken on an empty stomach.

Thanks once again to all the support we have gotten-- you have all made a very difficult situation that much easier.