Day 53

This morning started very early and we didn't finish until 9 this evening. The occupational therapist was here at 7:40 this morning and Mom was not, I repeat, not ready to start because we were awaken by the therapist AND we did not get much sleep during the night. The blisters and sores from the gvhd are very sore and when they are on your front, back and sides, it is hard to get comfortable. Every time they move her, it hurts. Anyway, that is how the day started and then she had a chest x-ray and while I was eating breakfast they came in to replace her catheter (in her clavicle) because it had slipped (I didn't get to finish breakfast :(), then wound care, photophersis and finally a CT scan. Uncle D and G-mom P came to visit and we spent much of the time in the family room working on a puzzle. We finally ate some dinner after 9 this evening and Mom is napping while we wait for wound care again. So. . . . .with all that being said, I am going to close for tonight. Oh, she is feeling better this evening but is really tired so we are both hoping for a good, no great nights sleep! Until tomorrow.

Days 56, 55, 54

Well, I hope you all had a memorable holiday. Ours was different to say the least. You will notice that it has been a couple of days since my last post but I really needed to take a break. Now I am back and will catch you up although there hasn't been too much going on.

FRIDAY Mom began the treatment for the graft vs. host disease. They didn't start the treatment until late in the evening and finished up around 1 am. Dad was supposed to come home to take care of some business but he ended up staying with Mom.

SATURDAY was about the same as Friday, Mom had treatment # 2. Aunt D (mom's sister) and my Grandmom P came down to visit. Mom has been waiting to see her sister.

SUNDAY she didn't get any treatments. Rae and I got here earlier than usual so that my Dad could get home so he can get some rest. She still looks like a burn victim but she is feeling a little better. She said that even though the nurses know how bad the blisters are, they are still more rough than she would like. I hope that this week is all uphill (it hasn't been the last couple of times I have been here) and that when Dad comes back, she has made improvement.

Well, that is about all I have for tonight.

Happy Thanksgiving - Day 57

We wish each and everyone of you a very Happy Thanksgiving.

We thank you for your thoughts, prayers and love.

Have a wonderful day with the ones you love!

clipart courtesy of vintageholidaycrafts.com

Talked to Dad this afternoon and Mom seems to be doing better. I got to talk to her for a minute also. B, Steven, Madcow, Tatortot and Rae worked around Mom and Dad's house today. Sounds like they were pretty busy. Mr. Giggles and I spent the day at his parents house and eating too much food. Hopefully next year at this time, our family will all get to be together. Happy day:)

Day 58

Graft vs host disease (gvhd) is ugly. Mom looks like a burn victim right now because of it. She is in a lot of pain and since it is on her back, sides, stomach and legs, it is very hard to get comfortable.
We celebrated Thanksgiving today as a family minus one (we were able to get Dad to leave Mom (she said it was ok) for a little while). We ate at the Black-eyed Pea (we never eat at a restaurant for T-day) and although it was good, it didn't seem right. After eating Rae, B and I headed to the hospital. Before we got back, Mom had woken up in a panic because she didn't know how long we had been gone and no one was in her room. By the time we got there, the nurse (who is wonderful) had calmed her down, called Dad and opened the door so Mom could hear them and vice-versa. Dad went with the guys and Madcow back to the apartment. B called and TatorTot played his sax near Dad's phone so Mom could hear him play (none of us had ever heard him play before). He did a good job. Earlier in the day Rae and I had made a sign for Memom with the kids so we could stand on the parking garage and she could see it. Well, we weren't able to do that because of the pain she was in and because she is so weak. Dad and Steven came up for a visit (because children who are not patients are not allowed in the hospital, D stayed with them and taught them how to play spades but they really wanted to see Memom). We were able to be there when the gvhd guru was there evaluated Mom. She is a very gentle lady and didn't seem to mind answering our questions and giving us a hard time (she is finishing up her PHD in nursing at TU) about the large school in our town! She explained the treatment process that they are going to take. The treatment process is part of a study that she agreed to and was picked for. They have started her on steroids and she was also getting platelets this evening. Usually they give a weeks worth of steroids and then the treatment begins (the treatments consists of them taking out t-cells (I think that is what they are called) and hitting them with ultraviolet lights and that is all I remember). With the study, she will receive the steroids and treatments (cell removal, hit with ultraviolet light and put back in) at the same time. I apologize if this is hard to follow. We have listened to so many things regarding Mom and everything she has been through that it gets all jumbled up in my head and I have a hard time getting it out and sounding good. If you have any questions, please leave a comment and between the 4 of us we may be able to answer it! Her speech has completely come back; she finally sounds like Mom again. She is to have one more test to check her swallowing and if all goes well with it, she will be getting a new menu.
Well, that is enough rambling for tonight. Please keep Mom and Dad in your prayers.

Day 59

UPDATE IS FROM AN E-MAIL B SENT TO US THIS AFTERNOON:

Well we are still waiting on the doctor. The doctor this week is Dr. Al-Atrash. His mom went to Western Hills with us believe it or not. Mom ate a cup of fruit, and a few bites of egg this morning. She is sitting in the lounge chair and she said it feels really good. Her rash isn’t itching anymore but now she has blisters on her sides that are really painful.

Okay, the doctor just left and the rash is from graft vs host disease. They are going to keep treating it with creams right now instead of oral steroids. Tomorrow they are going to do a bone marrow biopsy, they were supposed to do one on day 30 but since mom wasn’t doing well they waited. They are having a wound care specialist to come look at her skin to see what else they can do to make her comfortable. Also tomorrow they are going to do a barium swallow test just to make sure there are no other issues with her swallowing. Well that is all for now. If anything else comes up I will let you know!!



I will update later if needed.

Please pray that the graft vs. host disease is on its way out. B counted up the number of days that Mom has been in the hospital and came up with a total of 52 days. That is a long time when you think about it. We really miss her and can't wait until she is at least in the apartment.

Day 60

Today seems to have been a little better for Mom. She is getting more benedryl and itching less. They removed the air mattress (not the official title) from her bed today (I need to tell you a story about the mattress). The doctors are pleased with her progress and said that she was going to need to start physical therapy to get her strength built up so she can get out of there. She had a chest x-ray this evening and we should get the results tomorrow AND we should find out about the rash.

Day 61

A little less itching, a little more riding in the big pink throne and another day down. B is staying until Tuesday, Dad will be there Wednesday and Thursday, Rae will be there Friday or so then Dad will be back for the rest of the weekend. We are all meeting Wednesday to celebrate Thanksgiving. We are hoping to be able to get someone to come stay with Mom so Dad will go eat with us. We shall see.

Hope you all have a great week.

Day 63 and 62

FRIDAY: One step forward and 20 steps back (or so it seems). Today has been an awful day for Mom. She has developed a rash that will not stop itching. It started Wednesday on her face and was on her back Thursday but today it has moved lower down her back and to her legs somewhat. She sat up in the big pink chair for about 2 1/4 hours but slept most of the time. They did a biopsy from her back and we will find out the results Monday or Tuesday.

SATURDAY: Not much change from yesterday. Still itchy and red. Got to ride in the big pink chair and while sitting in the chair, Rae gave her a pedicure. She again has slept most of the day.

Please pray that this set back clears up quickly. She is so ready to get out of there. The longer she has to stay, the lower her spirits get (and ours too). It has been so long since I have seen a smile on her face.

Day 64

Not much to report today. We had a lazy day more or less. She ate some vegetable soup for lunch/supper and I think that she liked it a lot. Tomorrow we have a busy day planned and I hope we sleep good tonight. She slept more last night than any other.

Day 65 ~ Wednesday

GOOD NEWS!!!!! We passed the swallowing test and have already gotten to eat ICE CREAM!! I will be stopping and picking up some Bluebell Chocolate on my way back to the hospital!! OH and we got out of bed and took a REAL shower!!! GOD IS SOOOOOO GOOD! How can anyone ever doubt his goodness and mercy?

I am back at MDA. Mom is still doing so much better. Tonight they gave her something to help her sleep because last night they only got three hours. I on the other hand, left my pillow at home so I may not be able to sleep on the ones they have here!! When I ask my Mom about her shower she took this morning, she told me that they just threw her in and she didn't like it. She told my sister B the same thing when they helped her shower a couple of weeks ago. It made me giggle! I told her that they have to do that so she can show them she is getting stronger so she can get out of here. Tomorrow we have a new nurse that I haven't met so I am hoping that she is a good one. All of them are good, some just click much better with Mom.

Good night all.

Day 66

I APOLOGIZE FOR THE DELAY IN GETTING THIS POSTED, I AM BEGINNING TO FIND OUT THAT SOME OF YOU WORRY WHEN I DON'T GET POSTS UP QUICKLY AND THAT THIS BLOG IS PART OF YOUR MORNING ROUTINE. THANKS FOR EVERYTHING YOU DO AND I WILL TRY TO GET THESE UP AS SOON AS POSSIBLE.

Only got 1 1/2 hours of sleep tonight. Very tired but we had a really good day. The speech therapist came in this morning and although we were told we would be evaluated today for eating, the orders were for speech only. Of course you can't just go ahead and do the swallow test since you are in the room. So we were told we would have to wait for that until tomorrow. Not a happy Mom (or daughter). Got cleaned up and sheets changed early (for us and hospital times) and sat in the chair for about 30 minutes and earned another M&M for the door. Mom talked to Dad, Aunt D and Rocky (minister in Franklin who has taken this same journey) and then visited with a good friend Julie who came by to see us and crocheted Mom the cutest (MAROON!) hat for winter or whenever her head gets cold. I will have to get her to model all her hats because our dear friend Kathy made some really cute ones too (one is maroon and white!). Then we waited for Dad and Rae to get here. While waiting, she started throwing her stress ball at me when I wasn't looking (is there a connection there?). They finally got there around 7 and Rae and I left to get some dinner (umm, Marco's) and while we were there, Dad called and ask if I would like to sleep in my own bed tonight (at this point I was ready to sleep anywhere) because he wanted to stay with Mom and Rae needed a way home. I said yes (maybe a little too enthusiastically!). I can't remember if I had mentioned on Monday that we had only had 2 hours of sleep so we were working on 3.5 hours of sleep in two days. Mom's speech continued to improve through out the day and she was letting us know (repeatedly) that she wanted ICE CREAM. She was not happy at having to hear (repeatedly) that she had to wait until she had the swallowing test the following day. Rae and I left and got home after midnight and I getting to bed around 1:20. Can't wait for the test tomorrow.

Day 67

We made some headway today which is great but we still have a long way to go. This morning I woke up to my name being said out loud. Mom hasn't been talking so this was a great surprise. I ate a Hershey miniature and she mouthed that she wanted one. She is getting hungry so we hope that maybe after a visit with the speech therapist tomorrow, we can think about starting on some real food! After a bath, she got on a pink throne and rode around the entire floor. She has a fan club around here. Everywhere we went the nurses knew her. She sat in the chair for a while and we had planned on a second trip but she was just to tired. The lady who comes and plays music for the exercise group came and played her guitar and sang a couple of songs. We have also done leg exercises and will finish up arms before we go to bed. I hope that tomorrow we just keep improving. Oh, we have had the door open all day and I think that she has been planning her escape route. I ask her if she was planning and she said yes but I wouldn't tell her what vehicle I drove down here and that she didn't know where the keys are. I think that if she could, she would escape and take my chocolate with her!

UPDATE: Just wanted to let you know that she said two more words this evening. Drink was one and phone was the other.

Good night all.

Day 68

I am back at MDA this week. Today Rae and Lou Ellen came down to visit with Mom. They seemed to have a good visit. Mom is really trying to communicate with us and she gets so frustrated because she can't. The doctors say that she is doing much better but we have a long way to go. We have to keep reminding her how well she is doing because she knows what she can't do and it is frustrating to her. Hopefully she will get some sleep tonight and show improvement in the morning.

Please say a prayer for my dad because he plans on coming down here several times this week.

Day 69

Talked to Dad this morning and he was feeling better but he'd had a rough morning. Mom became very agitated during the night because she became scared. Dad said that it took several hours for her to calm back down. Needless to say neither one got much sleep. I haven't talked to him this afternoon so I don't know if there has been any changes.

Day 70

Not much change. Dad got down there early so B could get home for some sports activities. She stopped on her way there and ate dinner with us. Dad said that Mom became agitated before bed and it took a while to calm her back down. Other than that, she is trying hard to communicate but still can't talk.

Day 71

Not much change today. Mom and B did some exercises and that wore her out. She had some more company today; friends from our old church and my grandmother. I hope Mom realized they were there and enjoyed seeing them.

Day 72

Today we are cautiously hopeful that we have reached the bottom of our canyon and are ready for the return trip. Dad spoke with the doctors today; psychologist who said it is not psychological, neurologist who said that she has some slow brainwaves but nothing else, and regular doctors who said that this is something that happens to patients. They also said (don't know which one) that she could turn around in a couple of days or weeks so Dad is feeling more at ease as is my sister B. Until I see her for myself I don't think I will feel that way. Today she has had more action meaning that she is moving more, putting her hand on Dads cheek, squeezing the nurses hand and actually making sounds as if she is trying to talk (something that she hasn't done for almost a week).
I really miss my Mom and can't wait to have a conversation with her.

Day 73

Not much change today. My dad is back down there and he said that she seemed more awake this afternoon. One of the doctors told B that is seems that she is trying to communicate more. They still don't know for sure what has caused this which is frustrating on top of all the other frustration. Dad will be down there tomorrow, maybe longer. She has had some visitors this week, Ray & Deb went down Sunday to see her and Meme (one of mom's dearest friends) went down to see her today.

I know I say this every night but please continue your prayers for a complete recovery.

Day 74

Not much to report. We aren't yet seeing the effects of the plasma exchange. Dad was told that it would be at least 48 hours which is this evening.

Please continue to pray.

Day 75

Today Mom's white blood count was up again (yesterday it had gone down which is normal, ours does the same) which of course is always good. They did another plasma exchange (or cleaning the blood) today. They will do at least three of these exchanges but they may need to do as many as ten total. We hope that this does the trick for her. Dad is staying with her until tomorrow and then Bec and Rae are heading down tomorrow afternoon. Dad and Rae will come back tomorrow night. I will be teaching for my Dad. I forgot to mention yesterday that my Aunt Diane and my Grandmother went to visit my Mom. I am glad that they got to see her.

We had a busy day at home, my Uncle Richard and cousins Robert and Donna came down to help move the rest of my parent's furniture into their house. Aunt Diane also helped after she got finished finding out where the stupid cows keep getting out. We got the Penske unloaded and are planning on moving the the stuff in the SAM into the Penske so the SAM can go away. It is finally looking a little bit like home at their house! It will be even better when Mom is home.

Hope everyone had a good weekend.

Day 76

Well, the stem cells are grafting and doing what they are supposed to do. God is good. Today the doctors decided that Mom's blood needed to be cleaned to remove toxins left in her due to the chemo that weren't removed because she doesn't have but one kidney. The plasma with the toxins is removed and clean plasma is put back in it's place. This will probably take several treatments to get it all cleared up. Dad told Aunt D that she seemed to be a little better after the first treatment. We hope that this clears things up so that we can have our Mom back. I can't wait to hear her voice and see her with a smile on her face.

Day 77

Well, we have gotten the physical part of Mom's recovery on track. Her white blood count was over 8.0. She got magnesium or potassium (I can't remember which one). I wish that I could say that all is great and that she is well on the road to recovery but I can't. Yesterday was not a good day, she told B that she didn't want to try anymore. I had hoped that she was just tired from the day before and that today would be different. Unfortunately it wasn't and it hasn't been. Today she saw several different doctors, had a spinal tap and an EEG to see if they could figure out why she has stopped talking. The full results won't be available until next week. They have put her on an anti convulsion medication to see if it would help. I am so sorry if this doesn't make a lot of sense but my brain doesn't work well when I am so worried. Please just keep Mom and Dad in your prayers. Also the doctors that they may find out what the problem is and get Mom back to her normal self. We are so blessed to have such loving, caring friends to help us through this journey. Hopefully as I get more information, I will be able to better explain all that is going on.

Day 78

The white blood count for today was 6.4! They just keep going up and now it shows that she has grafted and is making her own stemcells. Praise God for this good news. She received platelets this afternoon which usually gives her a little boost.

We have a specific prayer request today, she is very discouraged. . . .please pray that she realizes how far she has come and that she regains a positive attitude. Please pray for my Dad as he struggles when she does.

Day 79 or +22

Today's white blood count is at 4.4. She has had a busy day with exercise class, working with the occupational therapist and showering. Her MRI came back with no problems. They did another test that showed some abnormal brainwaves but the aren't overly concerned with that. The neurologist feels that the confusion, slow thought process and speech problems are due to neurotoxins from the high sodium and out of whack electrolytes. She did realize that today was Wednesday and wanted to know when Dad was going to be there (I went too). We got there a little after seven and stayed until nine. She talked to us but is still kind of hard to understand.

Keep the prayers coming please.

Day 80

White blood count was 3.8 today which makes it very close to the normal range which is from 4.00-11.00. We got the results on the MRI showed no problems with the brain. A neurologist came by today and wants to do a test (don't remember what) also. They think that the memory problems, speech problems and the confusion were due to the fact that her sodium was very high (over 150, 145-135 is the normal range). Hopefully she will continue to improve quickly in those areas and her short term memory will return. It still takes her a long time to wake up and start getting herself together. Today a physical therapist came by and started working with her and will do so on a daily basis (she is so terribly weak). This afternoon when I talked to my sister, Mom was sitting up and coloring in her coloring book. B had been asking Mom what the colors were when she used them and Mom started telling her the object and what color it was as she colored it. God is wonderful and can not image going on this journey without having God in our lives.

Thank you again for all of your prayers.

Day 81

Whiteblood count today was 3.2. Mom had a busy day. She went to exercise class, had a visit from a physical therapist and she will have therapy in her room on a daily basis. She ate some grits for breakfast and some fried chicken at lunch. She had the MRI this afternoon and we should get the results tomorrow. She is doing better today. One of the nurses last week told me that she might not even remember the last two weeks (I can't remember if I told you that or not) which would be great.
Please add her friend Nancy to your prayer list. She had a transplant done and has had a few set backs. Right now she is dealing with graft vs. host disease. Please prayer for strength, comfort and healing.
Well, that is all for tonight.

Day 82 ~ Sunday

What a difference a few days can make! First off, the white blood count today was 3.0!! The normal range is 4.0 - 11.0 so we are getting there. Today was a busy day for Mom. She ate some chocolate ice cream (first thing in almost 2 weeks), hopefully she will continue this eating trend. They are also supposed to be starting some nutrition by iv (finally, my personal thought is WHY hasn't this been done before the end of 2 weeks?) so hopefully we can get her strength built up. Rae was there today and she did some speech therapy with Mom and some occupational therapy (yes, we are still waiting for physical and occupational therapy people to stop by). Don't know if they will be doing the MRI today, it may not be needed now. We should also get an update on how the one kidney is doing (yes, I had to tell 2 doctors last week that she only has one. . . please read your patient files!) and we hope that the function is getting back to normal. Well, that is about all I have for tonight. Dad is staying until tomorrow and then B is heading down for two weeks. Please keep the prayers coming. . . .we are seeing results from the prayers and we are so very happy.