Great News!

We got good news today! His liver enzyme counts were near normal today so the doctors and us were relieved that what they thought 2 weeks ago is not true! And they do not have to extensive tests on his liver! His counts, white cell, red cell and platelets were good! So we discussed what to ask the eye doctor Friday when we see him. His eyes are still VERY dry and so is his mouth. Dr. Salzman said he might have that the rest of his life and that it was a side effect of the graft vs host disease. We will find out for sure if the disease is still in his eyes on Friday. We do not have to go back to the BMT unit until March 12th. We are so relieved! He will stay on the same dosage of cyclosporine until we go back on the 12th and of course stay on the same regimen the eye doctor prescribed until he says to come off them. God and time is on our side! As they said today he is not a year out from his transplant and he has progressed so fast! We know others that are going through some hard times with the same thing we went through so we say a little prayer each night for them. God bless you all too! Alyce

Better News

We went to the BMT unit today and they drew blood and told us that everything pretty much looked the same so they let us go early for a change. He had gotten a different bottle and started taking what was in it. It was the wrong medicine! It was something he had taken back in 2004 for his tri-glycerides. He thought it was the penicillian, they looked alot alike! So when we go back next Wednesday hopefully they will have the right reading then on his liver. We went to the funeral home this evening for a 26 year old man that had lymphnoma. He had a bone marrow transplant(his brother was his donor)in Houston at MD Anderson(a great hospital) He did have some complications along the way that prevented him from being free of going back and forth to Houston alot. He passed away and left a beautiful wife and two-year old daughter behind. It really got to me seeing the pictures of him and the slide show they had on a big screen showing his life from a child until a few weeks ago. There was so many people there and I told his wife that I had put myself in her shoes so many times. She was very brave and was standing right by him in the casket. I can't even begin to tell you the thoughts that were going through my head! Terry was very brave and strong even though I know what was going through his mind too! We are so blessed to have been able to come this far without major complications! Lidia(the NP at the BMT unit) told him he needs to be very careful in coming in contact with people and wash his hands very often! So if you see him and you are sick, please tell him! It could save his life! Bless you all for staying with us and I will update next week after we see the doctor! Love to you all! Alyce

Good News

We went back to the BMT unit yesterday and they gave us the good news that they do not have to do a liver biopsy. Terry was very relieved!!! It is enlarged but not to a point where they need to look in it! Dr. Lopez said he thinks it most likely GVHD and the tests for mono, hepatitis, and some other test I cannot spell, were negative. WE both looked up towards the ceiling and said "Thank you LORD"! We know he is watching over us! They changed how he is going to take his cyclosporine, once in the morning and once at night. The enzymes in the liver came down too, so that was a big other reason the doctor decided not to do a biopsy. We have prayed every day for the enzymes to be down. His CBC was good, all the numbers white cell, red cell and platelets were a little low but were OK with the doctor. He is actually fishing with Mike Pitts today, first chance with the weather to go, and he was really excited! Hope he catches some! We go back on Wednesday and they will draw more blood to see what the liver enzymes are doing. Hope everyone had a great Valentines, ours was so special this year especially since last year was so different. John had to step up for Terry last year and he did a GREAT job! He really had a soft spot this year and went with us to eat dinner. That is different for John! But you would have to live with him to know it! Both our kids have been great through all this and have brought us even closer! Hugs your loved ones every chance you get! God Bless You for hanging in here with us! Love to all! Alyce

Problems We Never Saw Coming

We spent all day at UAB yesterday! We went back to the doctor yesterday instead of Thursday because I called the nurse to ask her about having the GVHD(graft vs host disease) in his sinus cavity and she told me to bring him in. He was not happy with me but its not the first time and I am sure it won't be the last! Although after the day was over he did thank me for taking care of him! He tells me he loves me and he wouldn't know what he would do without me all the time. I just tell him that is why God put me here! His liver enzymes are still high(not sure how many liver enzymes we have)and they are doing an ultrasound on his liver, gall bladder and pancreas today. They also took more blood to do other certain kinds of tests on his liver. The doctor should have the results of the blood tests and the ultrasound and we will go back Friday for those. They told him yesterday if they did not get the results they want from the ultrasound and blood tests, they will have to biopsy his liver to see what is going on. Of course he asked what does that involve and he said they put a catheder in your neck and run it down that way. He suspects GVHD or a virus in his liver but has to make sure. He just wants to know what it is to be able to treat it correctly. He is a research doctor and is very thorough! I can tell Terry is very scared. I just keep telling to keep the faith and we are reading our bible every night to boost us! Our church gave out a calendar to follow and we have been doing it! We saw the neurologists yesterday too! She examined him and told him what he already knew, she called him the expert! The cyclosporine could be the reason so many nerves have been affected and the chemo he took over the past year also could have done the damage. He will most likely have this the rest of his life but she assured him after 6 months of being off the cyclosporine he could see a difference.I will update after our visit on Friday! Tomorrow is Valentine's Day so hug your loved ones and tell them you love them! Time is precious! Hugs and kisses to all of you! Alyce

First Time For Everything!

Well, we have been so lucky this far but there is a first time for everything! He does have the graft vs host disease in his eyes and I'm thinking it is in his sinus cavity too, so does Terry. He puts up a front but he did tell me this morning he was scared. We went to church and I put on our membership card to put him back on the prayer list. They worked before and they will work again! He is at Eddie's recording his song he wrote. I tried to talk him out of going but he said he wanted to get this song down and it might be his only chance. It is a tear jerker, he's only played it once for me and he said he had changed it around, so I am not sure how it goes now. We are putting cyclosporine drops in his eyes each morning and at night. He also has steroid drops he can use every 3 to 4 hours and then we put an ointment in them before we go to bed. They also increased his cyclosporine(immune suppression meds) by mouth to 50 mg per day instead of every other day. So we are going backwards instead of forward and he is depressed about it. I am going to talk to the doctor when we go Thursday(he is getting bloodwork done for the liver enzymes) about giving him the lowest dosage of depression meds until we can get back to the right direction. We talked about it before but they gave him the testostrone shot and he got better. So I do not know what they will do. Kristina came home(in her nursing uniform) this weekend, haven't seen her in two weeks, and that really helps him!!! Harlie(her dog) cheers him up too! She is starting her clinicals and seeing her in her uniform really makes us think WOW she is really doing this! We are SO proud she is who she is! I talked to Karen and Butch and Karen said she was going to give blood this week at a blood drive, but she might need to give Terry a booster so she decided against it. The doctor said if we were going to see this disease it would be on the taper of the cyclosporine, he was right! We see the neurologists Tuesday, for the numbness in feet, hands and arms and Thursday for more bloodwork. I will update you after these appointments! Please pray for his recovery, God is good! Hug you sweethearts this week, you never know what's around the corner! Love to all! Alyce

Trouble Again

Well we thought everything was ok, but we went to the BMT unit Wednesday and they drew blood and his liver enzymes were high. They took him off the Bactrim, an antibiotic he has been on since we left UAB in June. So they will draw blood next Thursday and see if it has come down. His eyes are not getting any better. He looks miserable especially by the end of the day and they really hurt him I can tell. Dr. Ashraf said that we would go ahead and come down 25mg next visit(20th) and see what happens. We have learned of so many people that are going through what Terry did. We spoke to one of them at the hospital Wednesday and two others are coming in soon! One is on the 9th floor getting chemo before he has the actual bone marrow transplant. Alan(my brother) has a friend at church that had throat cancer and got rid of it, but it has come back in his brain and I just got through reading his blogspot and it really got to me. So many things can happen so quickly! Don't take anything for granted and savor the moments you have, because they can be taken away so fast! Hugs and kisses to everyone! Alyce

Good News

Well he does not have the graft vs host disease in his eyes. The eye doctor said it could be the early signs, but the disease cannot be seen in his eyes yet. That is a relief! He did say that there was something irritating them though. He has had some congestion and was coughing some last night. No fever though. I gave him some medicine last night for that. He has never had his eyes checked so he got the full run yesterday. He has 20/20 vision and no signs of any of those eye diseases that I cannot spell. He just needs reading glasses and he uses those already. We went to see Ruth Thursday and she was in a very talkative mood. Micheal was there and had brought her flowers, we brought her roses and Karen brought flowers too. So her room was very cheerful on her birthday. We went to the lounge area where there was a piano. When John sees a piano he can't help but play it. He played her a song and then played "Happy Birthday" to her. She really seemed to enjoy it! Karen said that the nurses that heard it want him to come back and play again. Micheal and John really made her laugh, but we won't talk about that subject. When those two get together, watch out! I will keep you posted, hopefully on all good news, when we go back to the BMT unit. That is not until Feb. 13th, we see the neurologists on Feb 12th to talk about the numbness still in certain places on his arms and his toes. Thanks for hanging in there! God bless you and we love you all! Alyce