Day 58

Graft vs host disease (gvhd) is ugly. Mom looks like a burn victim right now because of it. She is in a lot of pain and since it is on her back, sides, stomach and legs, it is very hard to get comfortable.
We celebrated Thanksgiving today as a family minus one (we were able to get Dad to leave Mom (she said it was ok) for a little while). We ate at the Black-eyed Pea (we never eat at a restaurant for T-day) and although it was good, it didn't seem right. After eating Rae, B and I headed to the hospital. Before we got back, Mom had woken up in a panic because she didn't know how long we had been gone and no one was in her room. By the time we got there, the nurse (who is wonderful) had calmed her down, called Dad and opened the door so Mom could hear them and vice-versa. Dad went with the guys and Madcow back to the apartment. B called and TatorTot played his sax near Dad's phone so Mom could hear him play (none of us had ever heard him play before). He did a good job. Earlier in the day Rae and I had made a sign for Memom with the kids so we could stand on the parking garage and she could see it. Well, we weren't able to do that because of the pain she was in and because she is so weak. Dad and Steven came up for a visit (because children who are not patients are not allowed in the hospital, D stayed with them and taught them how to play spades but they really wanted to see Memom). We were able to be there when the gvhd guru was there evaluated Mom. She is a very gentle lady and didn't seem to mind answering our questions and giving us a hard time (she is finishing up her PHD in nursing at TU) about the large school in our town! She explained the treatment process that they are going to take. The treatment process is part of a study that she agreed to and was picked for. They have started her on steroids and she was also getting platelets this evening. Usually they give a weeks worth of steroids and then the treatment begins (the treatments consists of them taking out t-cells (I think that is what they are called) and hitting them with ultraviolet lights and that is all I remember). With the study, she will receive the steroids and treatments (cell removal, hit with ultraviolet light and put back in) at the same time. I apologize if this is hard to follow. We have listened to so many things regarding Mom and everything she has been through that it gets all jumbled up in my head and I have a hard time getting it out and sounding good. If you have any questions, please leave a comment and between the 4 of us we may be able to answer it! Her speech has completely come back; she finally sounds like Mom again. She is to have one more test to check her swallowing and if all goes well with it, she will be getting a new menu.
Well, that is enough rambling for tonight. Please keep Mom and Dad in your prayers.