It's Gonna Be A Fight!!!!

We went to the BMT unit today and as I promised I am updating, just wish I had better news! It was confirmed that GVHD(Graft VS Host Disease) is in his esophogus. So he has it in his eyes, mouth and esophogus. We discussed about it being in his lungs and he had to spit in a cup to test what he is coughing up(sorry so gross, but you really haven't heard anything yet) They tested that and did a chest x-ray. The test came back positive for bacteria and they have him on another, stronger antibiotic and albuterol inhaler. The plan to get rid of the GVHD is this, up on his immune suppression meds and on a strong steroid for a month and will then analize his condition after the month has passed. This is the first step to get the GVHD under control, if it is not taken control of, it is fatal. So the steroid is a must unfortunately! This steroid is NOT a fun drug for anyone that is going to be around him! It drove me and the kids crazy last time he was on it. So if you see him in the next month, be aware that he is not "himself". Please pray this works and takes care of most of the GVHD problems. Pray for him and me while he is on these steroids, we are gonna need it! This is a total different battle, so all of you that have taken him off your prayer lists at church, please put him back on it. We love you and thank you for hanging in here with us!!! Hugs and kisses and God Bless All of You! Alyce

GVHD Still Here!

The biopsy of the esophogus went well and they were able to stretch him out to a 17 which is the number they got to last time. But the doctor did tell us that he thought it looked like GVHD. And right as we were pulling up to the Kirkland clinic Wednesday morning, Lidia called to tell us it was confirmed that he has it in his mouth. Did NOT want to hear that. So Terry has decided that it is in lungs because the cough will not go away. I am sure they will biopsy them soon. They have given him a mouth wash to help but it will not heal it. He is using a gel in his mouth to heal it, at least that will go away as long as he uses it correctly. Dr. Johnson told him that the pain that he had swallowing was the GVHD not because of the small esophogus. He has the "magic mouthwash" that he is going to use before he eats, this will numb his esophogus so that it will ease the pain when he swallows. He said it has helped. He is just SO tired of having so much to do to survive through this. He did go to work today and will tomorrow and that has helped his feelings alot! He will go Sunday hopefully this time after church and they will draw blood to make sure his blood clotting meds are working. And then he will go in Tuesday and get blood drawn for his labs for Wednesday's visit. We will be discussing alot this time. They will most likely go up on his immune suppression meds, this is the only way to attack the GVHD that we know of right now. That is what we are going to discuss. Karen told him yesterday if he needed her again just let her know. Bless her heart, she is going through her own tests. Pray for both of them and next time you see T, ask him if he's drinking. He is not drinking enough to keep his body hydrated I am afraid. Brother Jerry called and they talked awhile and that gave him even more determination to fight this. We thank you for hanging in here with us! God Bless You! Hugs and kisses! Alyce

BMT Instead of Church

Well, the procedure he had done on Thursday to his mouth became a problem this morning. I was waking him up to give him his shot and get ready for church when I discovered the pillow, his t-shirt and the sheets covered in blood. A big blood clot had formed in his mouth and was leaking out of his mouth. I am sorry to sound SO gross! I guess I think everyone's stomach is as strong as mine has grown! Of course, I called for Kristina to come down and look at what had happened and she said immediately to call the doctor, so I did. John dropped us off(one of the perks of him living downtown) and they called the oral surgeons to come take care of it. Dr. Vaughan was there and gave me the regimen for the shots and coumadin during this next week when he has the biopsy and stretching of the esophogus. Butch and Jackie came and kept me company for a while, which was nice, but they shouldn't have. I am sure they will let the church know tonight what is going on. He has lost 9 lbs and as of right now has not eaten anything but drank an ensure today. It is very hard for him to eat. I am fixing to make him a milkshake but I knew everyone would want to know what was going on so I am going for now and hopefully we won't have any more excitement this week! Pray the biopsy goes well and they can stretch him out so he can eat! Hugs and kisses to everyone! Love ya'll! Alyce

GVHD Still Here!

Terry went to the oral surgeon today and they did a biopsy from his mouth, 2 different places. He has stitches and will go back in a week. He also went to the eye doctor today and the doctor confirmed that he still has the GVHD in his eyes. He gave him steriod drops to try before he puts the Restasis drops to see if that helps. Don't know really what this means. Will ask doctors when we go back to the bmt unit on the 28th. He gets the biopsy of his esophogus and stretched next Wednesday. He has bruises on his stomach from me giving him the shots. I tried to get him to do it but he said he could not do it. My Dad gave me some suggestions today on how to give them so I tried it tonight and I have to admit Terry said it was better! I just can't stand doing that to him! I will update after next weeks procedure! We got to pray that this GVHD goes away soon! Should hear something on the biopsy from his mouth next week. Love to you all! Alyce

Getting Stretched Again!

Well, we went to the BMT unit yesterday and T will come off the coumadin on Sunday and start lovenox shots on Monday. He had a ultrasound on his leg where the blood clot is, its still there, so they would know the dosage of lovenox to give him. So pray for him AND me while I am giving him his shots. He will be bruised from me giving him his shots! Kristina is no longer here to help us with that. She is back at school along with Harlie(her dog)but that is fine. Not much longer and she will be back working here I hope! John and her are both back at school and John is still working at SCS and recording his music. He will start back on the coumadin after the procedure is done. They will biopsy while they are stretching his esophogus. We have had alot of deaths surrounding us lately. First Rob Bradshaw, then Dr. Darnell, Lee Ann Sexton(both of these are from cancer)and today Terry went to the funeral home for a very good friend(Wes Crim's mother) . David Hill's(from Borderline) brother, Mike Hill and Joe George(a friend and colleague at work)When it rains it pours, but it has been very depressing to Terry. We can only go back to where we thought we were going to be planning his(or I guess I go back)and can thank God for blessing us so much for letting him stay here with us a little longer. When we went to the bmt yesterday Terry asked Lidia if his blood work was ok and she said yes. We both sigh a little when she answers us. Just don't want to hear "no". May will be here soon and hopefully we will celebrate him being "cured". He has been working some so if you see him make sure he has a bottle of water in his hand so he doesn't get dehydrated and is using his hand sanitizer. We hope all of you are well, so much "stuff" going around and we have had our share! We love you and I will update after the procedure is done! Hugs and kisses! Alyce

Happy New Year!

Happy New Year everyone! Hopefully this will be the year we are told Terry is "cured" If he makes it to May 26th without any signs of leukemia, the bone marrow doctor will consider him "cured" We won't know for sure until they do a bone marrow biopsy and that will be closer to May. They did it early last year and that is the last one he has had. His rash is still faintly there but the biopsy came back benign without any GVHD signs. That is a GREAT thing although don't know why the rash came up and is still there. They were not able to do the esophogus biopsy and stretching because he has to come off the coumadin for at least 7 days before the procedure and I have to give lovenox shots again while he is off the coumadin. We were VERY dissappointed because he really needed that done. It takes him forever to eat and some foods he can't even swallow. His appointment is January 21st and they have a plan with the coumadin and lovenox 1 week before that. We go back to the BMT on Jan. 7th to discuss it and for his check-up. Lidia has been out and we don't like to go while she is not there. She went to London with her husband for a medical conference. January 17 will be 2 years when he was diagnosed with leukemia and the doctor(Dr. Henry Darnell) that discovered the white blood cell count so high passed away last night from liver cancer. I went to see him and his wife yesterday and it was very upsetting! I have known this family since I was 8 years old. He has treated 4 generations of my family and he and his family is VERY special to me. When I saw his wife yesterday she told me of how when Terry came to him with the flu symtoms and the first visit did not do the trick(which was very unusual for Dr. D, as I called him)he had a feeling that he should do a complete CBC on him. That is when they discovered the white cells so high. I will never forget that phone call and how Dr. D followed Terry all the way through with the cancer doctor and came to see him when he was in Carraway. How may doctors can you say do that! He was the SWEETEST man and helped SO many people through his life. Please pray for his family. I know he is up in heaven as one of our angels! We have made it through all the holidays without much trouble. He even went to work this week and will continue to do so as long as his health will let him. He is getting stronger by the day and when we compared him to last year at this time he is SO much stronger and so much better. Thank you for continuing to pray for us and we hope all of you had a GREAT new year celebration. We went out to eat with some very close friends and went and watched some awesome fireworks in Blount County and then waited for midnight and at 12:01 we were headed home for the bed. Not used to staying up so late. Getting too old for that! We love you and wish you the best 2009! God Bless You! Alyce