What are some of Derek's current challenges, update

Hello All

I wanted to give a quick update on Derek and what are his current challenges.  In comparison to what Derek has gone through over the past few months, Derek seems to be fairly stable at the moment.

So what are his current challenges?  Well, he has been pretty tired as of late.  Some days he might sleep 19+ hours of the day.  However, this is a very different tired from how he was a few weeks ago when he had lots of fluid building up in his head. Even though he is tired, he is more alert and does not complain about pressure behind his eyes like he did a few short weeks ago.  The Ommaya reservoir has been used with much success when they see too much fluid building up.  His energy level is more in line with what I expected from how the doctor's described how he would be after 6 weeks of daily radiation.

The next noticeable challenge is his appetite or lack there of.  On some days he would sleep and wake up to eat (sometimes very little) and then go back to sleep. Couple that with food not tasting very good anymore and his desire to eat was not great.  He lost about 20% of his body weight from when this all started and that was pretty concerning to me. To put that in perspective, I am a pretty lean guy and I know if I lost 20% of my body weight I would be in a lot of trouble.   So if a kid loses 20%, that is even more concerning.  So they put him on a small appetite stimulant a few days ago and it is helping.  It has worked and he wants to eat more. He still struggling with what foods he wants to eat, but as his desire to eat gets greater and greater, he is trying and remembering how he liked food again. If the radiation was an appetite sedative, I am looking at this as a stimulant to kick start his body again.  I don't believe he will need this forever once his body remembers.  And I would say as he eats more food, he is slowly gaining more energy too.

We don't give him much in the way of sugar, but I have noticed a pattern when he consumes sugars, even natural sugars from eating too much fruit, that he gets very tired after eating foods like that.

There is always the eye pressure (or fluid build up) that comes and goes.  But once again I have noticed patterns when he complains about eye pressure and when he does not complain about the pressure that I will not go into.  

He still does not have his boundless energy that he use to have.  And he is not as nimble as he once one.  But that is why we are working on physical therapy to maybe get that back to some extent.

He does have a very positive attitude.  The one thing he struggles with (and I assume all of us would be the same way) is he does not like the pokes.  He knows that the vaccine study involves getting shots so, even though he knows he has to go and get the shots, he is not very fond of it.  Sometimes he dwells on this for a long time and it makes him sad.  He is working on this too.  He is very brave, because even though he knows he is very afraid of the pain associated with the pokes, he still manages the strength to do what he has to do and that takes a lot of courage for an 8 year old.

He still always puts other people first. 

That's all for now

Zell