Progress 7/27/2012

     Today is day 122 post transplant. This week has been a challange for Gennie. Monday was a clinic day and a appointment with her lady part doctor. All's well there. Tuesday was a scheduled bone marrow biopsy and clinic. Her sodiun was low for the first time and the nurses told her to eat more salt. We bought pretzels. She broke a tooth in half that night. Wednesday was clinic and a visit to the dental section of the hospital. The doctors decided the best action was to pull the tooth. Thursday was clinic and a visit to our friends in IR. She had another central line put in. To be honest she has been handling all of this pretty well. Ah the wonders of medicine!! Today was, yes you guess it, Clinic and a doctors appointment.
     Now the best news in a long time. The doctors are very pleased with her progress. Even though her weight stays in the low to mid eighties most of her counts look good. She told the doctor today she was beginning to feel like herself for the first time in a long time. He asked us if we had any questions and Gennie asked for an explanation of systemic GVHD. We have heard that used to describe what is happening with her and the reason for photophoresis which will start next Thursday. He said it is an indication that she is showing small signs of GVHD in several areas or systems. This is actually encouraging as it shows that her transplant is working. Whenever a patient shows signs of scleraderma GVHD these doctors go to photophoresis to help protect from worse scleraderma later. It also will help keep her off of high dose steroids for the condition. After this discussion he gave us off until Tuesday. That is the first three day span off we have had. It has been a long time coming. I then pushed our luck and asked if at some point soon we would be allowed to return home for a day trip. He said they normally do not agree to this but in our case maybe it could be worked out. So I then asked about this weekend. He just smiled. It will not be this weekend but soon we may be able to come home, stay a night, and return the following day. I would love for Gennie to see home if only for a few hours. We are working on it.
     For now our spirits are high. She seems to have turned a corner. We are all to aware of the two steps forward on back thing and we will deal with whatever steps we need to make. As always thank you for your thoughts and prayers.
That's all for now, Bob