Tuesday, August 22nd

I tried to update the post this morning the system was down. Last night was absolutely horrible. Alex was sleeping between us, when his breathing woke me up at 2:30 AM. His breathing was audible, gurgling or purring almost and he was coughing alot. I listened for quite a while then woke Steve. He had me turn on the light to look at his color. We then had to make a decision whether it was weird congestion or fluid in his lungs. After an eternity, we decided that since he was not straining to breathe and his color was good, that we would wait until morning. Needless to say, it was nearly impossible to sleep after that. Steve had work to do so he got up and went to the computer. I listened to Alex's breath, prayed and eventually fell asleep.

This morning Alex's breathing was just fine. He was still coughing off and on but his mood was great and he ate all of his breakfast. I started feeling better, until I called the oncology department. The nurses took my report to Dr. Foreman who ordered an MRI. I bargained and got a reprieve for two weeks (hopefully). The doctor said that since there has been a cumulation of symptoms indicating the tumor is getting worse, they need to find out if it is responding to the chemo treatments. I really can not explain the fear this statement put in me. What does that mean? The tumor is not responding? They promised us it would respond and that Alex would get better! Does this mean more chemo? I know surgery is not an option, so where does that leave us?

I had to reign in my fears and anxiety and just focus on the day. Alex had physical therapy this afternoon and showed some improvement in his endurance. I took that as a positive. I also took relief in the fact that Alex made a concerted effort to get to the goody bag today. He ate his breakfast, drank his milk and had one of two glasses of water down before noon. As we were driving to pick up Steve, Alex suggested some new tasks for the next reward chart. He thinks we should have drinking all of his milkshake, being quiet and sleeping in his bed should be sticker worthy activities. This really made me laugh and we may just have to accommodate his request next week! I am happy to report that Alex finally got 5 stickers in one day and was able to get a goody this evening. He was very excited! I am very proud of him for not giving up. He had had four stickers each for Sunday and Monday and was very sad last night. I just adore this kid!

Anyway, the day has been long and very tiring. The whole family took a nap this afternoon and we are still exhausted. My prayer tonight is that Alex sleeps quietly and peacefully with no audible breathing and that I do not have to call the oncology department tomorrow.

Good night and God bless.
G