Test Delayed

I talked with Alyce and Terry both this evening and found out that the Bone Marrow test has been put off until this Friday. The doctor took blood for testing on Monday and talked with them on the game plan if the 5% remaining cells are clear of cancer or if they have cancer in them. It is good to know that they have a plan and a backup plan. Since my stem cells were so slow in making the Transplant, I am hoping that the progression is just slow in completing the entire 100%. Please pray for good test results and that the test will not be too painful for Terry. Mom is still in Trinity room 623 but will probably be released the end of this week. I still have not decided if we should take her back to the Trussville nursing home or try to find another one. The hospital social worker is helping me inquire at other nursing homes but so far none of the ones near me have an opening. Her leg is better but she now has a UTI and they sent her for an Ultrasound on her kidneys today. No results yet. Her dementia is no better. +++++++++Karen

Almost There

Terry had to go back to UAB today and they told him he was a model patient. I told Kristina to tell him that it was just my good traits coming out in him since today they told him that blood work shows he is now 95% me.Ha!Ha! The goal is to have 100% my healthy stem cells and when completed he will have my exact DNA. I just hope when he gets better he doesn't turn to a life of crime and I get the jail time. Ha!Ha! The doctor plans to do another Bone Marrow biopsy test on Monday to determine what the 5% is doing. We are praying "no leukemia blasts" but if they are still hanging around, they will decrease his cyclosporin (anti-rejection drug)and let him get a tiny bit of graft vs host to help build up antibodies to fight off any remaining cancer cells. At least that is the way I understand it all. I really don't understand it very clearly, I just pray that God will continue to watch over Terry and guide the doctors to do all the right things to make him well again. His appetite is continuing to get better and he was feeling pretty good today. I miss seeing him as I know many of you do too. Mom is still in the hospital and was not feeling well today. They sent her to X-ray for her neck and shoulder pain. No fractures showed up, just arthritis. I did finally get to talk to her doctor and he thinks she is improving but he is still adjusting her dementia and pain medicines. She was pretty clear tonight but could not remember where she was or how long she had been there. It broke my heart when she cried because I had to leave. I promised I would be back tomorrow and I think that helped to ease her mind. She will probably be released by Tuesday. Thank you for your continued prayers. Love, Karen

You Did What? Fishing?

Well, you have probably heard this saying the same as I; "Sometimes it is easier to get forgiveness than permission." The nurse was checking Terry out Monday morning and he told her he had gone fishing. She said, "You did what?" A few minutes later she went out of the room and in walks Dr. Vaughan, who sternly wants all the details of the "fishy tale." He told Terry that he did not want any bad statistics on his record for his patients. Terry reassured him that he did not touch the lake water or the fish. However, he was a little dehydrated and had to get a bag of fluids. Dr. Vaughan did not tell him he could not do it again, but said if you get out again go early morning or very late evening. He needs to stay out of the bright sun. It probably was the cause of his dehydration. He was feeling pretty good today and does not go back to UAB until Thursday. Mom seemed a little better tonight but is still not eating much. The hospital social worker is trying to help me get her into a different nursing home. Hopefully a bed will come available at St. Martin's in the Pines by the time they release her. I like the hospice group, New Beacon, that is at the hospital and they also serve that nursing facility. I just heard tonight that Aunt Mary Lee Jones found out today that she has breast cancer and is having surgery this Friday to remove the breast. She is 92 but her mind is as sharp as a tack. She and Uncle James (Mom's brother, age 94) live in a nursing home in Hoover. Please say a prayer for her upcoming surgery and recovery. God bless you, Karen

BORING??

Have you ever been just BORED to tears? Well, quadruple that and maybe you would feel how Terry has been feeling. Terry's mind has recovered much quicker than his body and he has been so bored it's like he has ants in his pants. His body is still weak but his mind is raring to go do something, anything.....just not the same old, sitting in the recliner, clicking the remote. It makes me depressed just thinking about it. Well, his good friend Mike came through to save the day on Saturday. He took Terry up to Guntersville Lake and took him on a boat ride and a little bit of fishing. He did catch one but Mike had to get it off the hook. Terry still cannot touch anything as germy as a fish. They didn't stay too long for this first outing since his transplant 57 days ago. It was wonderful to be on the water and just let the wind blow in his face. Definitely not BORING!!! Alyce takes him back to the Doctor at UAB tomorrow and they will ask if things can start picking up a bit. Mom is still in the hospital but she seemed a little better this evening. The doctor has changed some of her medications and she seemed calmer that she has been lately. Hope you all got to go to worship today. Love, Karen

Three Free

Three Free days!! that is what Terry and Alyce get. Free from having to get up early to go to UAB and wait your turn to get poked and prodded and stuck with a needle. Free to do what ever they feel like doing. Free to go out on the deck when they get up in the morning and just sit and listen to the birds chirping and watch the sun glisten on the lake and peek through the leaves on the trees surrounding the house. (Sounds like I hope retirement will be in a few years.) Terry is doing a little better every day so today the doctors said don't come back until Monday morning. Although he is feeling so much better, he is still very weak. He has not even felt like dropping a line from the pier in back of their house or picking up his guitar to pick out a tune. When he has not felt like doing those two things, you know he is not feeling well at all. But with time and getting a little stronger each day, I know it will not be long before he will be enjoying those things that bring him such pleasure in life again. They moved Mom to the 6th floor at Trinity today about lunchtime. Butch stayed with her until I got there about 1:30pm. I hoped to see the doctor but he did not come by to see us. I had to leave at 8:30pm when visitor hours were over. You cannot go to see her without having the code to get in to her hallway. It is locked up tight and they do not even have a phone or TV in her room. I hated to leave her tonight because she was scared and confused about where she was. I hope she will not be there long and we can get her in a more friendly surrounding. Thank you for caring. +++++++++++ Karen

Fish Breath

I guess that is what Terry had today. Ha! Ha! Alyce said he was hungry for fish today so she drove to Captain D's and got him some fish. She said he ate 2 pieces with that stinky malt vinegar on it. He had eaten a waffle and several other things today too. Thank goodness his appetite is getting better. He continues to feel better every day. Since he has had a couple of days off, he is dreading going to UAB tomorrow to get "stuck." The nurse told us before we ever started the Bone Marrow Transplant that he would get VERY tired of this, but it is just part of the process of getting and staying in remission. We praise God for every little step of progress that he makes. They had to go to the house in Tarrant today to sign papers to list the house for sale. If you know anyone interested, please let them know. Mom's leg is much better although the bedsore on her heel is still large and black. They may move her to the 6th floor tomorrow to further evaluate her dementia and the best treatment for that. I talked with the Hospice people at the hospital but then the social worker called and said that she had found out that Trussville Nursing Home only allowed Aseracare Hospice into their facility. I called them to see what kind of help they could give and found out that the same doctor who comes to the Nursing Home 2 times a week (125 patients??) is also the medical Director for this Hospice group. That seems like a big conflict of interest to me. I am very concerned about having to put her back in this facility but they have me backed into a corner. Only 1 other home in our area would take her and they do not have proper security for dementia patients or any kind of a courtyard like the present one. We need an advocate for the elderly and the terrible situation our health care system is in. I don't want to be too ugly to the people at the nursing home or threaten a lawsuit or to report them to a higher authority for fear they will mistreat Mom when I am not there. Two and a half weeks in the nursing home and their lack of care put her in the hospital. That is just apalling to me. Those of you who know me, know that I am usually slow to anger but when I saw that they had not changed her bandages in 4 days and her bed was soaked under that leg and then the bed sore and fever, I was furious. Thank you for your continued prayers for Terry and for Mom. May God bless you, Karen

Is It Tuesday?

Well, the calendar says Tuesday but what happened to Sunday and Monday? Life is just one big blur these days. I got to the hospital to relieve Jackie about 2:45 Sunday afternoon, spent the night ( in that uncomfortable chair/bed) and stayed until 6pm Monday night. I have hired a sitter now from 9pm to 7am and another from 9:30am to 5pm. Butch is filling in mornings and me at night. Monday there were 5 doctors that came by to see Mom and then I also met with a Hospice representative. The Infectious Disease doctor came by tonight and said her leg is looking much better and she may get to come off the strong antibiotics they have had her on within the next day or two. Terry ran another fever Saturday night so Alyce had to take him to UAB on Sunday. Like many of our kids have done, by the time they saw the doctor, he did not have a fever at all. Monday, they did scans of his extremities to see if he had any blood clots and when it was determined that he did NOT, they removed his port. Hopefully, this is where the fever and aches originated and now will be eliminated. I did not get to talk with them today, but Monday afternoon he was feeling better than he had felt in a while. They don't have to go back to UAB until Thursday unless a problem arises. Thanks to the Bunko Ladies for bringing food to them!! After being off on Monday, I worked all day today. When I got to my office this morning, a dear friend and co-worker had left me a sweet card of encouragement and a beautiful pot of "sunshine" mums. We can never repay all the kindnesses that have been shown to us during the past several months by all of you. Thank you from the bottom of our hearts. Please keep those prayers going, I know that God has something really good in store for us just around the corner. Love to all of you from all of us, Karen

Showers of Blessings

Well, even when other things seem to be looking down, God blesses us in another way. The rain we have had the past few days has certainly been a welcome blessing. Terry has still been running a low grade fever and today they gave him more IV antibiotic. The doctors did tell them that the blood culture was negative but they did take another one today. His levels are still good and the medicine they have him on for appetite is working. He has regained 3 pounds. He will get to stay home Sunday. On Monday, if the blood cultures taken today still don't reveal anything, they may remove the port because this may be why he keeps running a fever and aching. It could be causing a slight infection that has just not been detected. Mom had a high fever (101.8 under her arm)on Thursday night when I went by the nursing home after work. We could not get her to wake up. She had a red swollen wrist and would scream and cry if anyone touched it. I had the nurse to place a call for the doctor but it took almost 3 hours for him to call back. Meantime, when the aid came in to prepare her for the night, I noticed that the bandage on her leg had not been changed in 4 days. (they have to date and initial the tape) The sheets were soaked with fluid from her leg and the small bed sore she had gotten 2 weeks ago on her heel at Med Center East was now covering her entire heel. I just about lost it!! My brother Butch and his wife Jackie came over about 9:30pm and the doctor had just called back and told the nurse to transport her. The ambulance finally arrived and we got to the Trinity Montclair ER about 11pm. After lots of tests, they did keep her and admitted her to room 525 at 4am Friday. We all had to go to work the next day on 2 or 3hours sleep. I left work about 1:30pm and went to the hospital. They were doing tests on Mom and did not return her until about 5pm. The wrist problem is something called pseudo gout. I have had "prayer meeting" with a couple of people at the Nursing Home and have been assured that changes are being made and problems addressed. We are having to now pay them $147 per day to hold her bed because as terrible as it may seem, we may be forced to return her there. I spent the night last night at the hospital and a cousin (Vicki) relieved me about 11am today. I had already signed up to help at our 1 day VBS so I felt I had to keep my commitment. Butch is staying tonight. Her doctor has ordered that we have someone with her around the clock. This is going to really place a hardship on us (as if we needed something else.) Please continue to keep our entire family in your prayers. I'm about to try to catch up on a little shut-eye. Love, Karen

Got A Bug

The blood culture came back and showed that Terry has picked up some type of bug. This means he will have to go back to the EVERY DAY thing at UAB. They gave him a bag of Vancomycin antibiotic today and he ended up there from about 9am until 4pm. Bummer!! The doctor said that this is probably why he has continued to hurt and not feel any better than he has. Maybe now they can kill off the bug with these strong antibiotics. Let's just pray that he will continue to improve soon. P.S. John will be 19 years old on Saturday. He is the youngest of all the grandchildren. Terry and Alyce's baby is growing up! Happy Birthday, John!

Fever Broke!

Terry's fever broke last night and Alyce even got up during the night and it was normal. Also normal when they got to UAB this morning. They did take blood cultures and that will take a couple of days to get the results. Meanwhile, his shoulder is a little better and they gave him a prescription to help increase his appetite. I think when he starts eating better he will feel better and get his energy level back up. If you want to send him a personal email of encouragement, send it to heytwd@yahoo.com and Alyce will print it off for him to read. He will get to stay home tomorrow. Thank you for your prayers. Karen

Running a Fever!

FEVER....Terry started running a fever last night and Alyce was up all night taking his temperature hoping it would come down. He had a fever this evening of 100.5 and that is the point that she has been told to call the doctor, not the nurse. It is hard to understand, because to you or me that seems like a very low fever and we could just take a couple of tylenol or ibuprophen and feel better quickly. But this is not the case with a Bone Marrow Transplant patient. He cannot take any of those type drugs because they CAN mask a fever and a fever indicates a problem. Our biggest fear would be the Graft vs. Host disease. Please pray that this is not that or anything serious. He will see the doctor in the morning and I will report to you tomorrow evening what they find. Thank you for your continued concern and prayers. Karen

Good News!!

GOOD NEWS!!! Since they didn't have to go to UAB Thursday, Terry and Alyce got to sleep later than usual. That was a treat since it was the first day in months that he was not in or going to the hospital. Friday he went back and they gave him some Magnesium but all his blood levels are looking great. More Good News!!! They did not have to go to UAB today or tomorrow!! Alyce is giving him his antibiotic at home and he is sitting in his recliner and controlling the remote (as most men do.) He is still having some shoulder pain but is rubbing some cream on it that seems to help. Hopefully it will continue getting better every day. Kristina got accepted a couple of weeks ago to Nursing School at Shelton State and then Thursday she got a letter from University of Ala saying she was accepted there also. She made the smart decision to continue at the U of A where she can also get a BS degree in Nursing. She will be leaving tomorrow to do a mini course for the remainder of the summer to get off a history class that she needs before starting Nursing classes in the Fall. We are so proud of her and know that she will do well.

Happy 4th of July!

Terry had the MRI and the results did not show anything bad; however, they did not get pictures of his neck area too where he is also hurting. The pain is manageable but tomorrow will be the end of the steroids so it may get worse again. They did not have to stay long at UAB today and had just gotten a call from the hospital this afternoon telling him that all levels looked great and THEY CAN STAY AT HOME TOMORROW!!! Please pray that his strength will hurry and return and that the shoulder pain will quickly go away. We had a good day with friends and relatives. The pig looked gross but I did try a bite and it was good. I made 3 freezers of homemade ice cream....Vanilla, Chocolate and Strawberry. We got home around 5pm and I pulled weeds until dark. We watched the fireworks on TV (not as good as in person.) I am thankful that I live in America...the land of the free. We are so blessed to have wonderful doctors and hospitals (without them Terry could not survive.) We are also blessed that we do not have to live in constant fear because of our brave military who are protecting us. If you have ever served in the military, we salute you and say "Thank you." Love to you all, Karen

MRI Delay

Terry and Alyce got to the hospital at 7:45am Monday and sat until 11am before being told that the MRI had been put off until Tuesday (today.) They did do the usual tests on him and gave him a bag of fluid because his Crit level was getting a little high. When they finally got to leave, they went by the Nursing Home (mask on) and sat in the open air courtyard to see Mom for a little while. This was the first time he had seen her since Mother's Day at her house. They don't have to be at the hospital today for the MRI until 11am, so maybe they are getting to sleep in for a change. I wish you all a safe and happy 4th of July tomorrow. We will be spending it with lots of friends and family at our oldest daughter's house. My fun loving, crazy son-in-law is cooking a whole pig in a pit!! I can't miss it but am taking my own BBQ to eat.

Bad Week for Me

This blog is supposed to be for and about Terry but it seems that I am bending your ear about things that are affecting me lately. Terry is still doing better except for some bad shoulder pain. They are giving him some steroid pills and that is helping but he will have an MRI Monday to see if it shows anything other than severe inflammation. I called Alyce today to wish her a Happy Birthday. This has been one of the worst weeks for me that I can remember. With having to put my Mom in the nursing home on Tuesday and the baby's funeral on Thursday, I have been a basket case. I worked Wednesday and Friday and have been to the nursing home every day except the day of the funeral. Chloe looked like a little porcelain doll, but it was the saddest funeral I have ever attended. Over 500 people signed the book and the church was packed with people standing during the entire funeral. You can GOOGLE Chloe Michelle Collar and sign the book and send a message if you like. Several of you that read this blog who went to school with Terry also went to school with Susan Bradshaw my sister-in-law who graduated from Tarrant the year before Terry. You can also read about the man, Gary White, who has been charged with Vehicular Manslaughter by going to www.pnj.com. It made front page in the Pensacola News Journal on Friday. The judge did not allow him to get out on bail. He will be held until his trial date is set. We all plan to join M.A.D.D. We need stiffer laws because the max he will get is 15 years. Mom is not doing well and seems to be going downhill fast. Please pray for Terry's MRI results to be good and for all of us to have a better week. God gets us through 1 day at a time. Hug your babies and grand babies every chance you get and tell someone that you LOVE them. XXXOOO Karen