ECP

We have been praying and hoping Aaron's doctor (Dr. Bleesing) would make it to Aaron's clinic visit last Wednesday. You would think he would show up since the appointment was with him. Once again, he did not show and again we were left with our questions unanswered. We have been waiting week after week for his doctor to make it to Aaron's scheduled appointments. Sometimes other doctors come instead, but when we ask questions they all respond "you will have to ask Dr. Bleesing about that." I gave up hope and realized we would have to go to Chicago for Aaron's treatment. Michael and I were fine with that, but I was concerned with uprooting Aaron to another place.

Michael was so mad he told me to call the head of the BMT department, Dr. Davies. I called and spoke with her. I couldn't even finish my conversation with her because she said hold on and I'll be right there. She was there in five minutes, she reviewed Aaron's chart, said Aaron was a perfect candidate for photophoresis, and scheduled his new line to be placed the very next day.

Today is Monday and Aaron has now had four ECP (extra corporeal photophoresis) treatments. He will be inpatient for awhile since his treatments are every day. Dr. Davies says she will oversee Aaron's treatment and make all the decisions. She even approved Aaron to bring his trike and ride it up and down the halls of the BMT unit (this is great because we were told "no" by other people, but you can't argue with the head honcho).

I finally, finally, finally feel like Aaron is on the road to recovery and the worst is behind us. We will no longer be going to Chicago.

Here is a picture of Aaron getting his ECP treatment today.




- Posted using BlogPress from my iPhone