progression

Brian's condition has begun to deteriorate further. It is difficult to measure and grasp a gradual change when one witnesses something each day. I equate it to your children's growth. You see them each day, so you don't notice sudden changes in their facial structure, their height or their build. Then you see a friend you haven't seen for a few months, and they point out what has been so obviously occurring right in front of you.

Brian is weakening. He is tired more often. He is more irritable. His headaches still come and go, but when they come, they are vicious. The pain is nearly unbearable, but today we were prescribed a medicine that I believe should do the trick with alleviating that pain. Also, he has begun to have mini-seizures. He sort of looks off to the side for a few seconds, and sometimes his head bobs a bit, or his eyes roll back in his head. The mini seizures just began this weekend, but he had one today in the doctor's office. He is gradually getting less stable on his feet. He started to walk slower last week. He then began to brace himself on walls and furniture as he walked. Today, when we were at the doctor's office, he requested a wheelchair because he did not feel steady standing or walking.

Brian's parents and I have begun to educate ourselves on what happens next. How will Brian progress? What should we expect? He is having another MRI tomorrow. In Brian's current state, he feels too weak and tired to do chemotherapy. If the MRI shows further rapid progression, he will most likely be finished with all treatments and be made to feel comfortable at home. We are trying to set ourselves up to handle the situation at home. Brian's dad is getting a wheelchair today for days when Brian is weak. Unfortunately, we do not have a mainfloor bedroom or full bathroom. Therefore, Brian's dad is also investigating a lift for the stairs.

According to the doctor, if this is tumor progression causing Brian to become more symptomatic, which seems likely at this point in time, we can expect Brian's symptoms to become worse - his right side weaker, his speech worsening, his stability becoming unsteady, and a tremendous amount of fatigue, sleeping a lot. The seizures and the headaches should be able to be controlled with different and increased medications.

I have begun talking to a counselor about life at home - discipline, what and how to tell the boys, visitors, help, etc. I feel good about most of the choices I have made so far and appreciate all the help I am now ready and willing to accept.

In the end, right now, I just want to enjoy each good moment, spend as much time as possible with Brian, and take care of my family the best way I know how to do.

KEEP BELIEVING