Still no answers

We didn't get the definitive results we were hoping for today. His MRI showed a larger area of abnormality and the PET scan showed some minor changes from the last one. The PET showed a slightly increased metabolic activity that could be interpreted as normal tissue or the beginning of tumor activity. The conclusion was that they still could not say whether this was tumor progression or necrosis and edema from radiation.

Because it is putting pressure on his brain stem and causing issues for Joseph he has been on steroids, which have helped to reduce the pressure. Over the past week, his head tilting has basically gone away and his balance improves daily. He's not quite back to being as fast and steady as he was, but he's not falling over much anymore. So the short term plan is to continue his low dose steroids.

The long term plan is still up in the air. The only way to be sure whether it is progression or pseudo is either to show a decrease in the size of the area with repeated scans over time or to surgically biopsy the area. Because of the location of this spot, if it continues to expand Joseph would have much worsening symptoms regardless of whether it is tumor or necrosis. We are meeting with the surgeon who did his operation in December to discuss if surgery to this area would be an option. If it is an option, then it would remove a lot of the area, take the pressure off of his brain stem, and give us a biopsy and a conclusive answer as well. On the other hand it would be another surgery with another recovery. So we might have some tough decisions to make if it is an option. We'll find out tomorrow.

Joseph is doing well. He did not like being here at first, but after the needle came out yesterday, he has returned to his normal goofy and hyper self. As I am writing this, he is getting his eyelashes trimmed by Gillian. He was complaining that he couldn't see and we realized that his ridiculously long lashes are so thick that they are clumping together and blocking his vision. How many moms can say they've given their child's eyes a hair cut? She really is Super Mom.