100th Day

Today marks the 100th Day since the transplant. Yahoo!! wish we could throw a party but Terry still has to stay pretty much isolated or keep his mask on. Terry and Alyce had a great anniversary. They had a big suite at RossBridge with room service. It was really a treat since they have not been able to go anywhere in such a long time. They went straight to UAB this morning and the nurses took several vials of blood. He will have to go later in the week for an EKG, etc. and next Tuesday will have another of those dreaded Bone Marrow Tests. Terry is like me and has chronic sinusitis. He told the doctor he could sleep better if he could breathe out his nose. The doctor finally ok'd for him to use Afrin nasal spray. I have to use it every night so I know how he feels. Mom was a bit agitated over the weekend so the nursing home added another medication. She was in a lot of pain and complaining loudly so they called me at 4am Monday morning. They transported her by ambulance to Trinity ER so I had to go meet them. Nothing really wrong except the skin graft area hurting badly. They gave her a couple of shots and sent her back about 9am. I went straight to work from there. I hope they can get her meds adjusted to keep her out of so much pain but not make her sleep all the time. Love, Karen

Mom Transferred to Nursing Home

Tuesday, I left work about noon because the hospital decided to discharge Mom. I had already talked with Cook Springs Nursing Home and made arrangements for her a Rehab bed there. I packed up some of her things and picked up Aunt Mildred (Mom's spry 86 year old sister) and we got to Cook Springs a little before 2pm. It took forever to sign all the paperwork and get her stuff unloaded into her room but she did not arrive by ambulance until about 4pm. She was very upset and angry and said some things that she would not have said if she did not have dementia. She is in Room 102 of Cornerstone Rehab Unit. Got home about 7:30pm. She was doing better today and I will go back up to see her Thursday afternoon. Talked with Alyce and she and Terry went to the hospital again. His potassium was a little high but probably because they had increased the cyclosporin last week. His 100th day will be next Tuesday so they are having to schedule all the tests that he went through before the transplant took place. Then they will probably do another Bone Marrow test soon also. Everything is still looking good, just SLOW. Terry and Alyce have an anniversary coming up the 27th and plan to stay overnight at a fancy local hotel. Our anniversary is the 26th and we will be out of town a couple of days this weekend. Oh I'll let you in on a little secret; Alyce swears she saw a little peach fuzz growing on Terry's head this week. Hope you are having a blessed week. Love, Karen

Talked With Terry

I called and got to talk with Terry for a while yesterday. He is doing pretty good...just impatient that his energy is still so low and he has lost muscle tone and his taste buds are still messed up. I tried to encourage him by reminding him of how blessed we are that he has come this far and that things will return to some normalcy in time. He really misses his fast paced life and interaction with all of you. Thank you for still keeping in touch through the prayer pager, a card, a call or an email to heytwd@yahoo.com. I am sure that he fears that his life will never be "back" to where he desires it to be. He doesn't read the blog so I told him the Smiley face sticker story and it gave him a laugh. Mom's graft has done well but she is in a lot of pain and her dementia very bad at times and I have had to hire around the clock sitters. Last might was the first time I did not have someone staying overnight. I was there a couple of hours last night after church and she was very depressed and wishing she could die. It is very hard to see her like this. She will probably be released and will go to Cook Springs Nursing Home on Tuesday to a rehab bed. After the leg heals, we might move her closer. Right now, we do not have many choices available that will take her. Because I love her so much, there are days that I pray for God to just call her home. She has suffered enough but we do not make the decision about when we die. We have to leave that in God's hands. Your prayers continue to lift us up and keep us going on days that we feel depressed. May God bless us all with a good week. Love, Karen

Good Report

Yesterday, Terry and Alyce had to return for a visit to UAB. The doctors examined him and did the normal blood work and said everything is looking good. Our goal is to get to Day 100 without developing the graft vs host disease. I think that Alyce said we have 2 more weeks from his new "Birthday" of May 26. They don't have to report back until next Tuesday. Mom came through the skin graft surgery fine. She was scheduled for 9:20am and they did not take her until about 2pm. They took the skin from the thigh of the leg with the wound. It is about 2 inches by 7 inches and is covered with a thin plastic tape. She was in a lot of pain and neither of us got much sleep until about 3am when I got the nurse to call the doctor. He let her give Mom a shot of demerol and phenergan and she was asleep in 10 minutes. I was exhausted so Sunny (relative and sitter from our church) came to relieve me about 2pm and I went home to get a nap. My daughter, Traci, relieved her about 9pm to stay the night. I felt like I needed to be at work today because a State of Alabama auditor is going to be there to start a Sales & Use tax audit. Sunny will be back about 8am and I will relieve her this afternoon. Mom's dementia is sometimes terrible and other times she makes perfect sense in her conversation. I'll bet I put her oxygen back in her nose at least 100 times last night. She just could not remember to keep it in and it made her nose itch. I just talked with Traci and she said she was restless last night and did not sleep more than 1 or 2 hours at a time until early this morning. Please continue to remember Mom (and all of us) in your prayers. Love, Karen

Mom's Surgery

I will be leaving shortly to go to the hospital to be with Mom. She is scheduled for skin graft surgery on the wound on her leg around 10 or 11am. Please pray for Dr. Bullock doing the surgery and for Mom that it will work and her leg will be healed. I have had to make sure this wound (originating from a brown recluse spider bite) was cleaned and bandaged daily for over 2 years. This could also give Mom better possibilities in Nursing Home choices. Some will not take a wound care patient that also has dementia. Terry is still doing well except for some shoulder pain. I have something really funny to share with you. Since yesterday was the first Sunday since we heard the wonderful news that Terry was in remission, I felt compelled to go down the aisle at church to ask for a prayer of Thanksgiving. Terry's name has been in our bulletin since this all began in January and his name has been lifted in prayer many times so I felt I needed to thank my brothers and sisters and God. Well, we usually sit near the back because we have 2 grandchildren that want to sit with us between Sunday School and Children's worship. Our little 2 year old Grant had gotten a big yellow smiley face with "GRANT" written on it in class. He cried because he did not want to go to Children's Church so Traci kept him in worship. He was sitting in Rick's lap and somehow as I was stepping past Rick to get to the aisle, his big yellow smiley face sticker got stuck on my butt. Yes, God does have a sense of humor. Hope this gives you a laugh!! Love to all, Karen

Hallelujah Praise the Lord

I just had to send out a quick message to thank each of you for your continued prayers and concerns for Terry. The Lord has answered our prayers and he is now in REMISSION. The doctors were doing several special tests and cultures before giving us the wonderful news that NO cancer cells remain in his blood and bone marrow at this time. I talked with Terry and Alyce and we all were shedding tears of joy. It is such a relief to know that the near death experience of being so very sick has been worth it all. It will still take a while to rebuild his strength and immune system but he now has another chance at LIFE. I thank the doctors and nurses who have been so wonderful. I thank each of you for your support. And I thank God for healing my baby brother. God has blessed us. Love to all of you, Karen

Hurry Up and Wait

Terry and Alyce went to the hospital on Tuesday but Dr. Vaughan was not there and they could not get the results of the Bone Marrow Test. They were told he would call them at home but as of Wednesday night, they still have not received a call. They did go to the dermatologist to get several of those places on his legs cut off. Alyce is being the nurse again and is cleaning the places with a vinegar mixture 2 or 3 times a day. It is very important not to let them get infected. We are hoping that "no news is good news." Today was the first time I had seen Mom's leg in over 2 weeks and it is looking so much better that at the wound care nurse's suggestion, I have decided to talk with the surgeon again and go ahead with a skin graft if he thinks that is best. I fed her lunch today but she was very sleepy from another change of medication. Rick and I went to the Trussville nursing home and removed all of her clothes and personal items Tuesday evening. I called them today and left a message that we would NOT be returning. Please pray for GOOD News for Terry and for Mom too. While you're praying, don't forget to pray for RAIN and cooler weather. God Bless you, Karen

Finally Friday

The hospital called Thursday afternoon and told Terry and Alyce to be at the hospital at 7:30am today for the Bone Marrow biopsy test. Thank goodness they sedated him partially because a very young female "fellow" doctor who must have been very inexperienced did the biopsy. Alyce watched and I think they should have given her the drugs from how she described the experience. Terry is still eating better and had regained 2 pounds. They received a call from the Dermatologist that they had seen at St. Vincents last week. Several of the small places on his legs that they biopsied showed "pre" cancer. He will go next week and the next to have those places taken off. Terry has been running a low grade fever for a couple of weeks but the doctors didn't seem alarmed unless it runs over 100. Over all, he is feeling so much better. We praise God for his improvements and are trying not to worry about the outcome of the test today. They don't have to go back to UAB until Tuesday and will probably not hear anything until then. When I talked to Alyce this afternoon, I told her Rick and I were going to the hospital to see Mom and then probably out to eat. She said "I will be soooooo glad when we can go out to eat again!!" and in the background, I heard Terry say yes, maybe to Ruth's Chris. Sounds great to me! I said maybe we can all go together soon. Mom was very alert but also very confused about some things. She asked " Is my furniture in Tarrant or Pell City?" I told her it was not at either, it was at her house in Irondale. She cannot remember her home in Irondale where she has lived for the past 6 years. We laughed and talked for over an hour but her leg was hurting badly so I asked the nurse to give her something for pain before we left. Thank you for your love and concern. We love you all, Karen