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

Off Until Monday!!!!!

We are off until Monday! He had that "lovely" test this morning but we don't know the results yet. We will go back Monday and they will hopefully give us the results of all the tests. Lidia said they had to put the pieces of the puzzle together. Dr. Vaughan is back so I know he will be in on all the fun now. He poked his head in this afternoon and said smart little remarks. Accused me of doing it to him. He is a funny man!!! We were supposed to go to Guntersville this weekend for my family reunion and will know tomorrow if we get to go at all. We had gotten it approved earlier last week before all this started. We just gotta have patience. On another note, when we were in the hospital there was a family experiencing so much more than we were. A man that we had seen several times in the BMT unit was admitted on Saturday while we were in there. We were down the same hall as him. I watched alot of family come in and out Monday and Tuesday. He just was not getting better. He had gotten something in his lungs and they could not figure out what it was. He has been on a respirator since Sunday. We learned today that they would pull him off the respirator at 5 pm this afternoon. My heart goes out to this family, it is all I could think about at 5 today. So I sat in silence and prayed in my office for this family. That could easily be us. So next time you see Terry and he is in a place he could get mold or fungus, get on to him! I make him wear a mask in our basement all the time! When we learn more about what the docs think is going on, I will update again. We love all of you, never knew so many looked at this! Hugs and kisses and God Bless You! Alyce

More Tests!

We got to come home today!! YEAH! Not at the doctor's choice but she made the mistake of giving him a choice and of course he chose to come home, who wouldn't! He had two more tests done before we left and we have to be back at the BMT at 8 am for bloodwork and then go to Kirklin for another test. A fun one! Then we will go back to the BMT and discuss the results of the tests they have been running and what they think is happening although I am not really sure they know. They have their theories and guesses but don't really know why he has an air pocket in his body cavity. They think something has burst or has a hole in it or had a hole in it and has sealed itself. I guess that is why they are looking at all organs and all around the organs. He's just happy to home tonight and in his own bed. I will update again tomorrow when we find out more! Hugs and kisses! Alyce

A Night In The Hospital

Kristina took him to the BMT unit today to get his phospherus(6 hrs worth). I was taking them some lunch and she called an told me they were admitting him and a surgeon was coming to talk with him. Of course, I got there as soon as I could. Well, two surgeons came to talk to him and examine him. They ordered another test and made him stay overnite to get more tomorrow. He is NOT a happy man!!! He is not having any symptoms of any type of illness except a pocket of air trapped under his diaphram. This is dangerous according to all the doctors. We know fluid is in his lungs but his oxygen was up today and that is a good sign. They are doing a ultrasound of his heart tomorrow to see if fluid is around his heart and look at the heart muscle. I just talked to him and he told me to tell everyone he is going to be fine and don't worry! You know him!!! Just wanted to update everyone and thank you for all the prayers! Will update tomorrow! God Bless You! Alyce