long awaited update

Once again I appolgize for not updating sooner. Every time I found time to update something would come up. I am doing this update at 2am, I couldn't sleep and it is nice and quiet.


Our visit to Cincinnati went well, of course we were delayed going and coming due to the weather but I am getting used to that. I so appriciate the organization that gets us there and they do not take any chances.

Alicia is still doing about the same. Doc Davies started Alicia on Ruteximab which is another Immune supressant which she did not need on top of the others she is on but the Steroids was not kicking the GVHD so we are hoping this will help. Alicia's mouth is still horrible and she does not have much hair left. Doc Davies says this is all due to the GVH. She has to get 5 infusions of the Rutexamab, which she has had three already but I still don't see much change yet. It could take weeks or months before we see any improvements I was told. We still have to go to Cincinnati every month so we will be going back in a couple of weeks. She is still eating and drinking very well which is very important. She is on a chicken kick now. She eats chicken twice a day, I don't dare not have chicken for her LOL. Of course everything can not go just right for us, if it did I would probably faint. Two hours after we had gotten back from Cincinnati we were right back at the Emergency room here at home. We had stopped by my sisters to see her new house she had gotten while we were gone. We were only there a short time when I heard Alicia start screaming. Erika was there also and we both ran to see what had happened and Alicia's leg was gashed wide open. She was trying to carry her two year old cousin up the stairs. She might only be two but she is almost bigger than Alicia. Anyway she fell on the last step which had metal on it. It was aweful!!!!!!!!!!! Below is a picture of it just after we got home from the hospital... Sorry if the picture freaked anyone out............

They had to end up pulling up the skin that was left and cutting it off. Alicia did it without shedding one tear. I couldn't watch though. It still looks bad, we have to change the dressing on it twice a day which Alicia also insists on doing herself.

I also had a little set back of my own. The pain in my side had gotten so bad that I ended up in the hospital also. It is determined to be my gall bladder and I was set to go to surgery last week but the Doc only gave me a 40% chance of making it through the surgery due to my liver so I would not let them operate. I am on some pretty heavy duty pain meds until I can see a specialist and anther surgeon to get a second opinion. Until then I am just tolerating the pain. I will update on the both of us as soon as anything new comes along.

Thank you for checking on us, and again I am so sorry for the length between updates.