GREAT 26th Anniversary Present!

Well, we got the present we were wanting! He got to come off 75 mg a day of immune suppression meds! Starting on Friday he is only taking 100mg in the AM and the same in the PM. That is a BIG step! I am having to stay on him about putting the drops in his eyes for the GVHD(the drops make his eyes sting REALLY bad) so he doesn't like doing it at all. But the stinging is hopefully the healing of his eyes. He got his glasses on Thursday, we had a really big day and a great day for our anniversary! It was nice just taking it easy with him and just being together and remembering what we did the day we got married. Sometimes people forget what it meant to them on that day. We enjoyed a very nice dinner at Flemings Steakhouse, a treat in itself! We go to the BMT for photopheresis on Sept 9 and 10 and will hopefully get to come off more meds if the doctor will let him. We will meet with the doctor on the 10th to discuss anything that may be happening(GVHD in the eyes) and then they will decide if he can continue to come down off any meds. We love you all! We learned that Victoria(8 year old with AML)got to go home this past week. She is doing much better! Still don't know if she is in remission. All the prayers are helping!!! My step-mom is fixing to go through radiation for the next 6 weeks. She had breast cancer and they removed the cancer but think she needs the radiation to keep it from coming back. Please pray for her speedy recovery! Hug your loved ones, you never know what is around the corner! Hugs and kisses! Alyce

High School Reunion

We got to go to Terry's Tarrant HS reunion last Sat. night. He almost didn't go but was glad he did afterwards. The doctors approved it and I had him cleaning his hands with hand sanitizer every five to ten minutes. They served Dreamland b'que for dinner and it was at Vulcan Park. That is a very nice place! We had a good time and he saw alot of people that night that have been praying for him and wishing him well. Always nice to know! He is doing well and we are to call the doctor's this Thursday to make sure he can come off more meds. This Thursday is our 26th wedding anniversary and I hope for our present he gets to come off more meds. He went to the eye doctor last week and he still has GVHD in his eyes and has to have glasses to see far off now. He has always been eagle eye to me. He could see things so far off and now he cannot. We know alot of patients that have it their eyes and it is very hard to get rid of when its in the eyes. He is still putting the eye drops in and hopefully this will help. Please pray that it does or it can spread again and we will be back where we were in January. Not a good thing! We love you and thank you for still reading this! I don't realize people rely on this until someone says to me " I have not seen a new post on the blog lately" and I really feel bad! I apologize for that! Karen did a MUCH better job at this, but I am just so glad I can do this instead of being in the hospital and her having to do it! Hugs and kisses! Alyce

Coming off Meds!

He had a GREAT visit today! He is going to start tapering off the immune suppression meds tonight and every two weeks come of a little more each time! This is going to give Karen's immune system a chance to take over! YEAH!!!!! He is also going to come off one of the meds tonight and every two weeks they will take away one more! YEAH!!!! He is getting stronger every day and he is starting to fill out more and more! He will continue the photopheresis once a month to help keep the GVHD from coming back! As long as GVHD stays away they will continue to come off more and more! We're down to 26 meds now! He can now drive according to the doctor, she gave him permission. Praise the Lord! He is looking after him! And our family! Hopefully this will all go well and by Christmas be totally off the meds! Thank you for hanging in here with us! Couldn't have done it without you and all your prayers! Please continue to pray for little Victoria, she is having a really bad time with infection and the doctors are not sure what is causing it! That is NOT a good thing! BIG hugs and kisses! Love to you all! Alyce

Too Long from Posts!

So sorry I have not updated this in soooo long! Lots been going on! We have not been to the BMT unit since July 17th! He will go this Wed and Thurs. for photopheresis. We have been to another doctor and they ran some tests on him and he will not be having surgery. Good and a bad thing! Too personal to go into too much detail! We have been in Mobile and Gulf Shores the past week. Wore him out and me too! We had a great time but always good to be home. We haven't slept in a strange bed(except the hospital)in so long it was hard to sleep away from our bed. T is doing well it seems. Has had many good days! John has moved back in temporarily I am sure. But it is good to have him around again and He and T are having a good time down in the studio. Thats what it was built for!!! Kristina is engaged to Garrett Hodges(going in the Navy in Nov.) so our lives have changed quite a bit lately!He picked out the ring she wanted so she is VERY happy! He is a good person and we hope he doesn't get sent off anywhere soon! My step-mom is having surgery again this Wed. for lymph nodes(cancer again possibly)Hopefully this will go well! After being out of the office for a week, there's lots to catch up! I know lots of you have joined facebook, so check it out. Its a great way to communicate and keep up with everyone! The little girl, Victoria, needs prayers! She is going through a REALLY rough time right now! In ICU and feeding tube and heart rate racing away! The doctors do not know why! I keep up with updates from her mom on caringbridge. Pray for her recovery! She has AML just like T. I won't be so long next time, will update after our visit on Thursday with the doctor. Hugs and kisses to everyone! Alyce

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