Saturday, June 14, 2008

June Update

Hello again,
I wish that this post was as good as the May Update. However, this is not the case. Jon Jon had his MRI on Friday just before the Bison's game. The results weren't as good as the original one. It appears as though the tumor has grown some and in a different direction. The good news is that it is not as big as it was when he was originally diagnosed. Like the doctor said after his first MRI, usually this type of tumor either stays the same size or it grows, so the fact that it is smaller than when originally diagnosed puts us ahead of the game. The bad news is that it has already affected him neurologically. He has a very slight facial droop that is barely noticeable but it is there. He also lost some of his fine motor skills in his right hand and holds his arm up next to his body.
The most noticable change is in his speech. Becuase the tumor is wrapped around his facial nerves, hence the turned in eye, it impinges on them and causes the changes we are seeing. He can barely form some of his words and it is sometimes difficult to understand what it is that he is saying. It is also difficult for him to speak loudly. I'm not sure if it is from the tumor pressing on nerves that affect the vocal chords too or what. He also chokes on some food and beverages on occasion so we have to watch him when he is ingesting anything.
We stopped many of his meds and put him back on the high dose steroids which seem to have improved some of the symptoms he is having. We need to address those things immediately before we try to treat the tumor again. We will put him back on the chemo Wednesday when we meet with the Oncologist and specialists again.
At this point we aren't sure of the other options or what we are going to do from here. We just ask that everyone keep sending good vibes and good thoughts and keep the prayers coming for him. We need a miracle and believe they can happen. We have to....

Thank you and God Bless!

Anne, Jon, Claire and Jon Jon