Good Weekend!

He went to photopheresis Wednesday and Thursday and they didn't seem to be alarmed about anything. We met with the doctor and they took him off two meds! YEAH! Thirty more to go! His feet are still "NORMAL" and his arms and hands look SOOOO much better!! He is most definitely getting better! We went to the hospital for a coumadin level on Saturday and then to a family gathering at Sherri and Pete's home. All the kids were having a blast and we got to see Brook for the first time and she is beautiful!! A good baby! Tara is 22 weeks along with Parker and is due in November. She looks great! It was SOOOOO good to be with everyone, we haven't been together since Christmas. TOOO long! Then on Sunday we went to see Ruth for the first time(I hate to admit) since January(when we got so sick). T went straight through to the outside and Kristina and I went and got Ruth from the hallway. She was in good spirits and seemed to know who we were and why had it been so long since we had been to see her. We explained it to her and she seemed to understand but not for long, she asked the same question again later. But we laughed and enjoyed our visit(2 hrs)and left her in a pretty good mood. We took pictures so you all that can look on facebook, you should see them soon. That is Kristina's job. She was fixing to go to dinner with Kelly. We told her it wouldn't be so long before we see her. T will just have to be outside so we make sure he doesn't get anything. She looked good and demonstrated her leg muscles for us. She is a STRONG woman! Just hate to see her in that place! Hopefully we will have a good week this week. T has more tests on July 31st, so pray they go well! Pray for my step-mom for good news from her doctor! Thanks for hanging in here with us and God Bless You All! Hugs and kisses! Alyce

Happy Birthday John! 21!!!!

I am so sorry for not updating before now!!! This has most definitely been a roller coaster ride! He had a surgical procedure done Monday and they gave him a shot we think he had a bad reaction too. First time for that! Did not like it!!! He had to be taken in to the BMT yesterday(Kristina to the rescue again)and they ran tests and did not seem to know what caused him to feel so bad, other than the shot. He is feeling better, thank goodness! We were able to go and celebrate John's 21st birthday after all. It turned out to be a OK night except not getting much sleep the night before. Just glad we were not in the hospital for it. Can't believe our baby is 21! Somebody's getting old!!! T's feet are much better. Over night his feet went all the way down to he can actually wear a normal shoe instead of sandals. We went to church Sunday and he looked down at his feet and said I wish I could wear different shoes, well now he can. I can see veins in his feet, I have not been able to see them in months. He is now off the steroids and he is getting stronger everyday. They are adjusting his meds and coming down off of some of them since he is off the steroids. He went to photopheresis today and we will go back tomorrow and see the doctor. Dr. Vaughan saw him yesterday and asked him why he had to be such a mystery. That the things that are happening to him have not happened to any of his other patients. There is always a first time for learning, UAB being a research place, just hate T is the guenie pig. He is getting stronger, can get out of a chair without using his hands to push him up and out. That is BIG!!! Just had a BIG scare yesterday, just glad it wasn't too big! At one point they said he would be admitted, but didn't. Going up and down on the roller coaster!! Want to get off and back to a steady pace! My step-mom had surgery today so I am praying there is nothing to worry about there, she is OK and the doctor said good things about her. They all had a good time in Alaska last week and glad they are home! Just had to come back to this heat! I will update after we see the doctor tomorrow, I promise! We love you all and BIG hugs and kisses! Alyce

Good News!

Sorry so late in updating you! He did go Monday and Dr. Vaughan saw him and said they really could not figure out what might be wrong with him. He said if he starts having any kind of pain he needs to let them know ASAP! He said to come down again off the steroids, only 1 mg every other day! They are going to start a step down off the immune suppression meds soon. He will continue the photopheresis while he is coming down off the immune meds to keep the GVHD at bay and not come back. Pray this works! This would be SOOOOO big! He talked about him looking for a doctor to see when he has a sore throat or ear ache, cold, etc... and would only come there if there were bad problems and would have a yearly check-up with them. Man, to think maybe by Thanksgiving things could be next to "NORMAL" whatever that may be!!!! We don't go back until July 16th for photo and will see a doctor then. Kristina went with him this past Monday and I will go with him then on the 16th. John and Kristina are leaving and going to Alaska with my Dad and step-mom and Alan's kids this Sunday for a week. Cooler air for sure! I will miss them! Please pray for T and that all this will go as the doctor thinks it will, only God can control this! And please pray for Victoria Sutton, the little girl in children's hospital, she is going through a REALLY rough time right now, BAD infections! And will be in the hospital for a while! Pray she gets better! We love you and God Bless You! Hugs and kisses to everyone! Alyce