Day 24 and 23

Tuesday: talked to Mom and she sounded great. She walked even further today than she did the day before. She is working so hard to get her strength built up so she can get out of there.
Wednesday: about the same, sit and wait to do whatever they have on the schedule! Still feeling good. Still working on her walking.

Day 25

Yesterday I was so hopeful that I was going to have exciting news to share with you today but it didn't happen. Thanks to the changes in schedule for a CT scan, what had a slim chance of happening was not to be. You see, one of the Advanced Nurse Practitioners who has been with Mom the entire time knew how important it was for Mom to see the kids. So Ms. Z tried to work things out so that we could get Mom downstairs and to somehow get her with the kids. All we were able to do was wheel her to the windows that look out over the parking garage and wave at them from there. It was bittersweet because she finally got to "see" them but she wanted to really see them and hold them and talk to them in person and not on the phone. When we left, she was down because she'd had such hopes of seeing her precious ones.

She was able to get up and walk some and then pushed her wheelchair even further. She was also supposed to have photopheresis but at the last minute they cancelled it (so frustrating).

She is so ready to get out of there. Well, that is all for today.

Days 28, 27, 26

Well, Christmas 2009 has now passed and it didn't really seem like Christmas. Yes, we went and visited the J family in FW AND we had snow on Christmas Eve (we decided that the snow was our extra gift this year since we can't celebrate in our usual fashion) and we spent time with us three girls but there were two things missing. We really missed having Mom and Dad at home for our usual festivities. I told my hubby that one of the things I really missed this year was Mom's Christmas Breakfast casserole. It is the best and I think he really missed it to. Next year we are definitely going to have to make up for this year in spending time together!

Mom has been a little down these past few days because of the holidays. She is sick and tired of the hospital food and the four walls that she looks at day after day. Dad has been able to spend a lot of time with her and I know that helps. Us girls are ok but Dad is the one who makes things alright! They have told them that she may be out in 10 days to 2 weeks but it depends on how well she continues to do with her recovery. She is missing the grandkids (thanks to H1N1, they can't go see her). She did get to see her big sister yesterday and her big brother will be going to see her sometime this week.

Please pray that she is able to get out soon and that her kidney continues to improve.

MERRY CHRISTMAS FROM OUR HOUSE TO YOURS.

We wish you a Merry Christmas.

We wish you a Merry Christmas.

We wish you a Merry Christmas and a Happy New Year.

Good tidings we bring, to you and your kin.

We wish you a Merry Christmas and a Happy New Year.

We hope that 2010 is a banner year for you all. We want to thank you for your support over the last 5 months. We love you all. Enjoy spending this holiday season with those you love and always remember the real reason we celebrate.

Love to you all,

Mom, Dad, Giggles, Mr. Giggles, Bec, Mr. Bec, Tator Tot, Mad Cow and Rae.

Day 29

Not much to report today. We have all talked to Mom and Dad today since us girls were together for Christmas Eve. Mom has been down, well we all have been down. She is so ready to get out of the hospital and we are so ready for the same thing. When this all started, we never dreamed that she would be in there 81 days and counting. Please pray that she can get out soon.

Days 31 and 30

Well, not much to report lately. Mom continues to do well and making steps towards getting out. Today she has been really tired. It could be because she has been working so hard or it could also be that it is Christmas and we won't be able to be together as a family. I think we are going to spend a lot of time together once she is able to. Well, that is it for tonight. Like I said, there isn't much to report!

Day 33 & 32

Sunday: Today Mom got up and sat in her recliner for 6 hours. She also had visitors from our church. She really enjoyed getting to see some friendly faces! She is doing so much better.

Monday: Don't you just love hurrying up to wait on something? It seems like that is all you do when you are in the hospital. Today Mom was supposed to have photopheresis in her room at 1:00. Well guess what. . . . .she ended up not having it until late in the afternoon and then they had to go down asperesis to have it done. So frustrating. Anyway, she got up and had a shower this morning. Rae is staying with her today and tomorrow so Dad could come home and unload hay and try to get a water leak fixed at the house.

Well, that is all for today. Have a good night.

Day 34

Today we had Christmas with Dad's side of the family. It was strange not having Mom and Dad there. As always we had good food and it was really good to see everyone. This holiday season is going to be so different than what we are used to but hopefully we will get to celebrate once Mom gets out of prison. . . . .oops, I mean the hospital!
She has had a good day and was feeling pretty good this evening when I called to check in. They were lucky today and didn't have to go to dialysis until 7:00 am. It sure was nice to sleep in my bed last night even if it was a short night! Well, that is all for tonight.

Day 35

Today was a good day. This morning the in patient rehab people came in to evaluate Mom. The two ladies got Mom out of bed and into a wheelchair. They wheeled her out into the hall and Mom wheeled herself around the nurses station not once but TWICE. Yes people, I said that MOM WHEELED HERSELF AROUND THE NURSES STATION NOT ONCE BUT TWICE!! I was so very excited! After that she sat in the wheelchair for probably an hour and ate breakfast while there. By the time she got back in bed she was exhausted but I think she was pretty proud of herself. And we were/are very happy for her. She had a nice visit with one of the Chaplains from the hospital. He comes by and checks on her about once a week. I am not sure what church he is affiliated with but he is a very kind hearted man who genuinely cares about how the patients are feeling. She also had a visit from our good friends the Owens. It was good to see them. They have been celebrating the fact the he is a two-year cancer survivor.

I would like to ask for specific prayers for Mom now. I ask that your prays be that the graft vs. host disease does not come back (which it can do) and that Mom's kidney function returns to normal so that she does not have to continue with the dialysis. Also please pray that although we can not all be together for Christmas this year, that she does not let that get her down and give up again. We can always celebrate when she gets out but she has to get to that point first. She has at least another two weeks (and I think that is wishful thinking.) OH, I almost forgot. . . .when you have a stemcell transplant, you are not allowed to eat raw fruits or vegetables. Well, Mom has been given permission to eat bananas. We have to wash them before we peel them (have you ever given a banana a bath?) but at least she can add something else to her diet!!

Day 37 & 36

Wednesday: today was a day of rest for us. We didn't have to do anything which was nice so Mom decided that she wanted to get up and take a shower. She was wiped out but she felt better. She had her CVC line taken out and is now back to having a pic line in her arm and she still has the CVC in her leg. Dad came up and spent the evening with her and I went looking for shirt sleeved button up pajama tops (not easy to find in "winter") and finally got the Taco Bell I had been craving all week!

Thursday: started at 5:00 this morning. We both napped during dialysis this morning! This afternoon we had photopheresis but Mom stayed awake most of the time. She made a Christmas wreath this evening and as always it is very pretty. Tomorrow we meet with in-patient rehab so they can start working on regaining her strength.

Well, that is all I have for tonight. We are hitting the sack after the news tonight.

Day 38

You know that it is going to be a long day when the nurse comes in at 5:15 and says in a cheery voice "Transport is ready to take you down for dialysis." and I respond as I am jumping out of bed trying to figure out what to wear on this early morning excursion, "Are you kidding me? At 5:15 in the morning? to which the nurse responded. . . they usually get here at 5:00 (please note that this is in the AM we are talking about). We had the same nurse that she had on Friday during the "incident" but everything went smoothly (believe that I was watching everything).

YES, that is how our day started and no, we weren't very happy about it. We got back to the
room at around 10:00. Then Mom had her skin care and then this afternoon we had photopheresis which lasts at least 3 hours. In between times we ate lunch, I finally got a shower and Mom rested some. Now we are watching The Sing Off and Mom is talking to B and the kids (which I am happy about because she hasn't talked to them in a while), she has talked to Dad and Rae.

Today has been a good day for Mom. She is thinking clearly but I think is frustrated because she can't remember some things. I ask her earlier if she remembered what we were doing on this day two years ago and she couldn't remember. That was the day I finally graduated from college. I hope that as we continue to improve, she will get her memories back. She is missing everyone and this afternoon has been kind of emotional for her. She is really wanting to be out by Christmas but we still have a long way to go. She has really put her mind to working this week. We haven't seen the therapist yet this week but Mom has been doing her exercises on her own.

I can not get across how happy I am to see my Mom talking to family on the phone and being so positive. Our mom is coming back and we owe it all to our Heavenly Father and to our family and friends who have lifted her up in prayers so many times. We are a very blessed family. Thank you is inadequate to get across how we feel about you all.

I hope you all have a great week.

Day 39

Not much to report today. We spent six hours away from the room having dialysis. We were both ready to get back to the room. We are now waiting for the nurse to come to Mom's wound care so we can go to sleep.

Day 42, 41 & 40

FRIDAY: Well, today was eventful and not in a good way. The kidney doctors have been watching Mom's numbers to see when/if she was going to need dialysis and today was the day that she needed it. They took her to ICU which is where the dialysis machine is located and began the process. After a while, B noticed that Mom was not acting like herself and called in the nurse. As the nurse began peeling back the blankets to check the catheter (she has two, one in her clavicle and one in her groin) they noticed that the blankets had blood on them. Well, when the nurse got Mom's leg uncovered they found that the lines had come loose and Mom was laying in a puddle of blood (yes, I know puddle is a relative term depending on who and what you are talking about. . . . she lost approximately 1 to 1.5 pints of blood). Since this occurred she was told that she would be spending the night in ICU in the meantime since she would not be using the room that she has been in for 2 months and 6 days B would have to completely empty the room. B was able to get the room cleared before Dad got there and they eventually got everything to the apartment where everything is still.Normally you are not allowed to have people stay in your room if you are in ICU but because Mom had a moment of panic, Dad was able to spend the night with her.

SATURDAY: Mom had a good day for the most part. She had to spend it all in ICU. Rae went down to see how she was doing and said that she seemed to be in good spirits and was relaxed. Not much else to report for the day.

SUNDAY: Mom seemed to have a pretty good day. Mom's doctor for this week told Dad that there would be some people released on the 11th floor and that she would be getting one of the room. They were able to get moved in this afternoon. The room is a little roomier but doesn't have as good a view as the other one. I haven't looked outside because it has been dark since I got here so I will have to take Dad's word for it. So right now, everything is ok. She is mostly asleep (she does know I am here) so I am typing this and watching White Christmas. So with that I am going to close for tonight. Please continue your prayers. . .that we have no more mishaps because we have dialysis for three hours every day this week, the she continues to get stronger and that we can get out of this place (don't get me wrong, the nurses that we have become friendly with are wonderful but we are all ready to get her somewhere else).

I hope everyone has a good week.

I FORGOT, SOME OF YOU HAD NOMINATED MOM FOR THE LIGHTS PACKAGE FROM KBTX; THEY FINALLY PICKED A WINNER AND UNFORTUNATELY IT WASN'T MOM. THANKS FOR NOMINATING HER! I WAS REALLY HOPING THAT SHE WOULD WIN BECAUSE SHE LOVES HAVING THE HOUSE DECORATED INSIDE AND OUT AND IT WOULD HAVE BEEN AN AWESOME WELCOME HOME SURPRISE.

Day 43

Nothing to say tonight. Talked to B earlier today and everything was still going ok.

Day 44

Here is B's update for today:
Well we have a new nurse for the rest of the week……it’s J! Mom is doing okay today. She is really tired but it could be from them tapering off her steroids. She sat in the lounge chair for about an hour and had a milkshake and ¾ bowl of fruit cocktail for breakfast. She didn’t eat much lunch but at least took a few bites of some food I got her from the holiday party they are having. They are doing photopheresis again today, I guess since they didn’t do it yesterday. Mom is being a smarty pants today J!! The renal doctor came in and said that her creatinine levels have gone down slightly but the BUN numbers are the same so no dialysis yet.

Day 45

Today I am just going to post the e-mail B sent to us today because that is really all the news I have today!

Well Dr. Al-Atrash just left and he had good news. Mom’s chest x-ray was clear and they are lowering her dose of steroids today. She had a milkshake for breakfast and drank the whole thing and she ate about a quarter of her fruit cocktail. Her voice is a little better but she still doesn’t have much of one. Her wbc is 11.6, platelets are 38. She is getting her dressings changed right now so she is cold but other than that she is feeling good but is quiet.

Day 46

Well, maybe we have reached a turning point. . . . .today Mom got out of bed, walked to the chair and ate breakfast. Oh how we hope that this is the upward climb with no more major setbacks. Tonight she missed the church Ladies Christmas party, I always enjoy going with Mom but this year I had to go by myself. I am already looking forward to next year and taking her with me. Since she wasn't there tonight, I had to find someone else to misbehave with and found the perfect partner in crime!! Thanks Ms. Kathy! Well, that is really all I have for tonight. Please pray that we continue to uphill climb.

Day 47

Not much to report today either. Dad talked to the doctor again today and although there is a slim chance that Mom could get out in 2 weeks, it will more than likely be after Christmas. Not really how we thought we would be spending Christmas this year. Hopefully Mom will be feeling better this week and will be able to get to work on getting out. B is there with her this week and I am home trying to get all things Christmas related done before I head back next week. We shall see. Need to do Christmas shopping of my own and to find out what I need to get for Mom and Dad. I guess we shall see if I can accomplish it all!

Dad will be busy this week trying to get the water leak at the house fixed. Why so things like that always happen at the worst time?

Hopefully I will have more interesting information for you all tomorrow. Only 19 more days til Christmas.

Days 49-48

Not much to say about the last two days. Lots of sleeping has been the high lites of Mom's days. Mom still hasn't gotten out of bed yet although she told me she was going to try today but as far as I know, she still hasn't. She doesn't think that she is making any progress although her skin is looking so much better (she hasn't looked in a mirror in a while) and the doctor told her that she was doing well but I am not sure she believes him. The doctor said that although her numbers are looking good, her urea something or other was high and he was going to suggest to the kidney doctors that they do dialysis today just to get that down. It will be up the the kidney doctors (and they may not visit until Monday) and from what I understand it would be a one time thing. Hopefully I will have more interesting news tomorrow.

Half Way There

Tonight Mom and I are going to have a warm cherry crisp in celebration of reaching the half way point. Today is day 50 and thankfully it was much better than yesterday. We had the photopheresis from 8:30 until almost 12 this morning. We were supposed to have a barium swallow test this afternoon but we didn't have to. YEAH! We were supposed to get into the wheelchair today and take a stroll around the floor and to a park they were going to show us but we didn't get to. She ate a little bit but not enough. The gvhd is looking much better but is still very painful in places. Two things we really have to work on are eating and getting out of bed. Please pray for those things.

Good night!

Day 51

I really don't know what to say about today. Today I felt like a failure as a caregiver. Mom became very upset with me, the occupational therapist and the nurse this morning because she didn't want to get out of bed although I think deep down inside she knew that she really needed to. She has slept almost all day long so I am afraid that we are going to have another sleepless night. Tomorrow she has to see the speech therapist, have her photopheresis and a swallow test. I have to go to a discharge class (1.5 hours. .yuck). Please continue to keep Mom in your prayers. Although she improves in little bits and not leaps and bounds, she doesn't think that she is getting better. She is struggling.

I got confirmation today that she does have pneumonia but she is not having any respiratory problems which is good.

Goodnight.

Day 52

Today has been such a long day. At one time I wondered it you could die from boredom. This morning they did her "wound care" which takes a LONG time. Then we had a visit with the cardio pulmonary folks who wanted to see if they needed to do scope to draw fluid from Mom's lungs. No one has said "Yes, you have pneumonia" so I can't answer that question for you. She left at noon for the scope and didn't come back until 3 pm (I was beginning to think that they were going to keep her) and as soon as she got back from that they started the photophersis treatment which took well over three hours. She ate chocolate cake for dinner tonight which was her only meal of the day. They are now doing her wound care again so we can get to bed. Hopefully we will get to bed before 1 am (which is when we went to bed last night) and I hope that since she slept all day that she will be able to sleep tonight. I am exhausted and am struggling to keep my eyes open. Well, that is all for tonight.

Happy December 1st! Only 24 days until Christmas!! :)

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.

Days 84 & 83

This was the family on "transplant" day. How do you like the get ups? Let me tell you, they get hot and I can't stand to have that thing on my face!

Friday: unfortunately I don't remember what the whiteblood count was but it continued its uphill climb. That was about the only good news for Friday. Mom had a really bad day. It took her a long time to wake up and then she still wasn't really with me. She was supposed to go in for an MRI to check and make sure that everything was ok. Doctors don't think there is anything wrong but they just want to make sure. The MRI was scheduled for 4:30 pm and at 6:20 pm they finally postponed until Monday because one doctor said that she had a filter for her blood clot although I assured them that she did not. Anyway, it was postponed until later. Dad and my honey finally got there and I think that they were a little shocked at how bad Mom was doing. She wasn't waking up, couldn't really talk where you could understand her or make much sense. I have to say, I was ready for the break. Tonight my honey and I are staying at the apartment we have to stay in once Mom is released. Below are some pictures.

Looking into the living room from the front door/dining room area

Looking into the bedroom from the hall.

The bathroom

Looking into the kitchen
The dining room table and area

Saturday: Wow, it was so nice to get to sleep in a real bed!! The apartment is awesome and I think that Mom will be very comfortable there when she gets released. The grounds are really nice and it is quiet. After my honey and I bought some supplies for the apartment and ate some lunch, we headed over to the hospital for a short visit before heading home. Mom seemed better today than yesterday. She was drinking water off of a sponge and that is a HUGE step! Her speech is still slurred but she talked to me on the phone earlier in the day and made better sense and I could understand her for the most part. Her white blood count today was 1.8. UP, UP, UP! Hopefully we are on the upward swing.

Day 85

Not much to report today. Got platelets twice today and blood. MRI scheduled for tomorrow. Still sleeping a lot but talked to Aunt D and Dad on the phone today.

I found that the white sheet cake from the cafeteria is very good!

Day 86

We FINALLY had a change in the white blood count. We are up to .1! So excited about that. Other than that there wasn't much change. It is very frustrating. Please continue praying for us.

Day 87

Not much to report tonight. Not much change. She did get platelets, blood, magnesium and potassium today. Hoping that tomorrow is the day we start moving uphill.

Day 88

Well, not much has changed today. We didn't get much sleep last night due to the continued stomach problems. I think we both finally fell asleep around 6 this morning and we were up before 9. Today has been a long day! Still waiting for the white blood cells to start doing their thing. So. . . .that is all for tonight. I am going to start getting ready for bed.

Keep praying.

Weekend Wrap Up - Days 91, 90, 89

I don't really know what to say about this weekend. It seems to have gone pretty much the same as last week. They took Mom off of the pain medication but I am not sure how much more alert she is. When I ask her a question, she usually just stares at me and doesn't answer. This is not new, it is the same response I was getting last week. I don't know if it was like that for Dad and Rae. I guess it is still getting out of her system. She is now having some tummy problems and those aren't fun to deal with when you are feeling ok but even worse when you feel bad. She still has sores in the back of her mouth that are hurting so she isn't drinking or eating.

She has a new doctor starting tomorrow (I don't know if I mentioned this before but the doctors change every two weeks). I think that I am going to have to start asking lots of questions. Tomorrow will be day 12 after the transplant and we still haven't seen any increase in white blood cells. I know that there is a range of days for that to happen but I want it to happen NOW. Ok, well tomorrow will be fine too. And yes, we are still in the two week very scary time where anything can happen. The doctor has said that she should start feeling better in a few days.

As you can see, we are not out of the woods yet. We still need your prayers like crazy to get Mom over this hump. Please pray that we are doing the things that we need to do to help her get over the hump. And please pray for the doctors and nurses.

I can't remember if I mentioned this before but we did get an apartment. Yippee!

That is all I have for tonight. Please keep the prayers coming.

Day 92

Oh my what a day this has been. Mom has had a very rough day. She has been very confused and anxious this morning and did not want me to leave. They think that maybe it was too much pain medication so they have cut back on that. Her blood pressure has still been high and they are still working on getting that corrected. She has still been having some pain in her throat and mouth so she is still not eating or drinking. Today she spent the day in bed a sleep or when she was awake, very confused. I am really hoping that tomorrow will be better for all of that. My dad drove down tonight to see her and to spend a little time with her. I pray that he makes it home safely.

He did get a phone call while he was here and we have gotten an apartment for when she is released. What a blessing, now we don't have to worry about what to do. Well, that is all for tonight. I am sure that I have forgotten something about today but this was the main part. I know that she is looking forward to the weekend when Dad will be here. I miss my husband and can't wait to see him!

Love you all:)

Please pray for quick healing of her throat and mouth. It is so hard to see her in pain, scared and confused and I know it is so hard for Dad because he can't be here and he can't fix it.

Day 93

One week ago today we began the 100 days in H-town journey. I have to say, it seems like a lot longer than one week. It seems like a month or longer. Today has not been a really good day but it hasn't really been a bad day either I guess. We woke up about 7:45 or so and after waking up, mom was pretty out of it. Meaning, she has slept most of the day. She is sleeping because of the pain medication they have her on. She has excruciating pain from the throat sores so she has to keep on top of the self medication button. I think at first she was afraid to use it but I think she is getting over that. One thing that has really posed a problem today is her heart rate and blood pressure. Both have been elevated since the transplant and today more than usual I think. They are having to make all of her regular meds that they can liquid. They are having to find a blood pressure med that they can use that will not cause the heart rate to go up so they have had to do a lot of research today. I think that the combination of meds is making her a little anxious. Today I left for a few minutes while she was asleep to go to the restroom, when I came back she was awake and I could tell that she was upset. I ask her what was wrong and she said that she was anxious because she didn't know where I was. That hasn't been a problem until today. She has started her neupogen shots which increase your white blood count.

Everyone of the nurses have been wonderful but the young lady who has been with us yesterday and today is OUTSTANDING. She is so caring and patient and doesn't mind answering questions or concerns. It takes a very special person to be a nurse and she has the specialness.

Well, Mom got a surprise tonight. Dad and Rae came to visit her since she had been having such a tough week. Don't know if she will remember tomorrow! Rae and I went to eat at the Black Eyed Pea. It was yummy.

Thanks for all your prayers and notes. We love you all.

Day 94

Well, not much to report today. Mom has slept most of the day but we did get her up to take a shower which is a very big thing for her. She is worn out from that but she is squeaky clean now! Hopefully tomorrow we will have more to report!

Day 95

Today has been a tough day for Mom. Her throat hurts, she has mouth sores and she hasn't been able to eat anything today. They put her on a pump that automatically gives her pain medication every 20 minutes and she has a button to push if she needs more. A side effect of the medicine is that it makes her drowsy. She has slept pretty much all day. Hopefully she will be able to sleep tonight.
She is down because she feels so bad, she misses my dad, and she is ready to go home. I wish there was something that I could do to help her. She ask me today what do you do when you can't eat and you are supposed to do? Of course I have no answer for her.
Please pray that this part of our journey is over quickly and that she starts to feel better quickly so that she can really kick it into overdrive on her M&M earnings!

I hope you all have a great week. Send a note or leave us a comment when you have a chance.

Day 96

I made it to MDA with no problems. Mom is doing ok. She is having problems with her throat being real sore (from the chemo) and has a couple of mouth sores so eating isn't much fun. Her white blood count is getting way down so she is pretty weak. She is still in contact isolation so I must wear a gown, gloves and mask this week when I am in her room and she has to wear one when she leaves the room. Other than that I guess everything is how it is supposed to be right now. She looks good. I brought my camera with me so maybe I can get some pics when she is feeling good. I will try to take a picture of my styling outfit also.

Well, I guess that is all for now. Hope everyone has a good week.

Day 97

Nothing new to report. Feeling the same as yesterday.

Day 98

Not much to report today. Mom is still feeling ok. Having a little trouble keeping food down but I think she and B are figuring out how to keep that from happening. Dad headed down tonight and B is finally heading home to see her kids and hubby.

Hope everyone has a great weekend.

Day 99

Well, I talked to Mom twice today and she sounded pretty good both times. She said that she was feeling ok but still kind of weak. She didn't sleep well last night because she slept so much during the day. Dad will go down tomorrow and B will be going back home. I will head down on Sunday. That is all for today.

Sending Notes

If you would like to send my mom a message, go to www.mdanderson.org, go to the Contact Us tab, look at the section labeled Patients, Friends, & Family, select send a message to a patient, then complete the rest of the info. Mom's patient # is 796664 and her birthdate is 04/27/1951. The message will be printed and taken to her room.

Today is the Day - Day 100

Excited that the day is finally here but also anxious that everything works as it should. God is so good to have given doctors the knowledge to find treatments that work so well. More later.

~~~~UPDATE~~~~

When we left this evening Mom was feeling the effects of the meds and the transplant. She had gotten sick and the medication for nausea makes her jittery so then she has to have more meds to relax her. She was dozing right before we left so hopefully after we were gone she got some sleep.

The transplant took less than one hour. It seems that now will be the hard part. They say that you can be sick from this for up to two weeks. That the transplant and the meds you have to take are rough on your body. Thank goodness she was feeling so much better before she had it done. We hope and pray that she is one of those people who don't have as much yuckiness as others. Some of the things she could encounter are bad mouth sores, very sore throat, vomiting, etc. Please pray for comfort should these happen. This is also a very critical time. This is the time when things can go terribly wrong.

Some of you are probably wondering how the the transplant is done. . . .well, they give it to you like you receive blood or platelets, etc. Just a drip. It looks kind of like tomato pasta sauce.

Although it seems like we have crossed a major hurdle, which we have, we still have many more to cross so we are still asking for your prayers. I will be going to H-town on Sunday and will spend the next two weeks with her. Please pray for both of us as I don't think that I handle other people being sick very well and she could be very sick.

I hope this makes sense. As you know my mind gets tangled sometimes when I am trying to get a lot of stuff out of my head and onto the blog.

Don't forget to send her a note at the hospital if you have a chance. They take her the notes every day. If you don't know how, let me know and I will get you the instructions.

Tomorrow is the Day

Well, Dad, Rae and I are leaving in the morning to go be with Mom during her transplant. I think it is safe to say that we are all pretty anxious about this. More than likely she will feel much, much worse before she starts feeling better. Hopefully the better will be swift and she will be back on her feet soon. Please pray for her tomorrow whenever you have a minute and I will update as soon as I can (I haven't decided if I am going to lug my computer around tomorrow or not!).

Thanks again for all of your thoughts and prayers.

Day -4

Talked to Mom this evening and she still sounded good. She said that she is starting to feel some of the effects of the chemo. . . .shaky hands. She is off of chemo tomorrow but has the bad stuff on Monday and Tuesday before the transplant on Wednesday. She said that she spoke with two women in her exercise class who had stemcell transplants for breast cancer and that one has 1 attached stemcell and the other has 2 and that they can already tell that they are gaining their strength back. Hope that works for Mom. She has most of the family with her this weekend so I am sure that she is having a good weekend.
Please pray that next week goes smoothly.

Day -5

I talked to Mom this morning but we didn't really talk about her or how she was feeling. She said that they come in at 4:30 am to give her take vitals, come in a little later to give her some meds before the chemo and around 6:00 they come in and start the chemo. I think she is about finished with the chemo.
Bec sent Rae and e-mail later in the day and said that she is tiring more easily and she is starting to lose her taste a little. She is also in contact isolation which means that we have to wear gloves and a mask while in her room and she has to wear that when she is out of her room. I don't understand all the reasons for this but hopefully this isolation will be over in a week or two.
Maybe Bec can clear up some of the fuzziness of this blog. Dad and Rae will be there this weekend so they may be able to help too.
Hope everyone has a great weekend.

Ooops! I'm Off!

Today is really day -7. I got off at the very beginning. Today was an AWESOME day! My Mom called me this evening before we left for church and she sounded FANTASTIC!! She walked three times, has been to an exercise class, was up all day, ate a Mr. Goodbar (and she said that it tasted like a Mr. Goodbar not cardboard) and was feeling really good. She sounded like Mom. It made me so happy! I know it has made my evening so much happier as I am sure it did for Bec, Rae and Dad. It has been a long time since she has sounded so chipper and so like herself. Bec visited with a lady and her husband who are there from Ohio I think. She had a stemcell transplant approximately 6 days ago and was doing well. It is so encouraging when you see others who are going through what you will soon be dealing with and see that they are doing well. This couple is a long way from home and their two young children ages 13 and 10 (I think) so say a quick prayer for them and their family that everything continues to go well and they can be reunited as a family. Well, that is all I have for tonight. My heart is bursting because Mom is feeling great. She is back on her chemo which is supposed to the worst she has had so that is a downer but hopefully it won't keep her down for long. I am really missing my Mom! She's the best and I love her bunches! It has been nice to have Dad at home even though I haven't seen much of him!

Have a great rest of the week.

Day -7

Well, last night Mom got moved up to the 11th floor where we wanted her to be. Now she needs to start earning those M&Ms! Bec got there Monday afternoon and Dad came on home. Today was her "free" day. No chemo, just walking and relaxing. Tomorrow she will begin her chemo treatment again at 6:00 am (I think). Oh, they are saying that she will be released on November 4th from the hospital. We hope that with some sort of date, the apartment situation will clear up. Well, that is all I know for now. Hopefully Bec will have more to write about later.

If you want to send her a card, please just sent it to the house right now. You can send her messages off of the MDA website too.

Day -9

Well, Mom and Dad headed down to H-town for Mom to be admitted. I just got off of the phone with my Dad and he said that although they are not on the floor we want her to be on, the room is very nice and she should hopefully get moved to the 11th floor where we want her. Today was a hard day for everyone. Although we will be going to see her and all, it is tough knowing that Mom, the keeper of us all is not here. I can't wait until she is feeling better. I miss my Mom who is so full of life!

Bec is going down there tomorrow so hopefully she will be updating this some so the news is straight from MDA.

Good night all. Have a great week.

Leaving on Sunday

Mom will be checking into MDA Sunday evening. The date for the transplant is October 14th which means that she (we) will be in H-town until January 21, 2010 (that is if I counted correctly). This will be hard for her because she doesn't like to be a way from home and my Dad. It will be hard on the rest of us because we are going to miss her when we aren't there and our families when we are with her. I know that we will make it but if you see us with a tear in our eye, you will know why.
The holidays are going to be very different (difficult) for us this year. I am not sure what we are going to do but I know that Bec, Rae and I will figure something out. It will be strange not seeing Mom and Dad's house all lit up for Christmas. The neighbors may think that Mom and Dad have moved!
Well, I thought that I would have more to write today but I don't. I ask that you continue to keep Mom (and the rest of us) in your prayers and the rest of us as we travel from here to the hospital and from FW to here to the hospital. If you want to send cards, continue to send them to the house until I find out something different or you can always send her a note through the hospital. I will try to get the instructions posted for that soon. Thank you for the prayers that you have already said, the kind words expressed, and the offers of help. We really appreciate everything.

Ch ch ch changes!

Well, I had intended to write yesterday but by the time I got home from church last night I was too tired!
When Aunt D and I got finished on Tuesday, we had our schedule set for Wednesday. She had to go back "sometime" during the day on Wednesday and Mom had a echocardiogram scheduled for 1:00 pm so we were all going to go back to MDA together. Well, about 9:00 that night, my dad called me to let me know that Aunt D now had to be there at 7:15 to do her bloodwork. That meant that she was going to have to drive down there by herself and find her way around the parking garage, etc by herself. She was going to have to leave at 5:00 am to get there on time. I made sure I had my phone beside me in case she called needed some help but she found everything without any problem!!
Mom and I left their house at 10:30 to head down there ourselves for the last time this week. We stopped at the school to take Dad a drink and while we were talking to him, Mom's phone rang and it was the hospital once again changing the schedule. Her appointment was moved to Friday. Hopefully we will get a more definite (hahahahahaha) schedule for next week at their appointment tomorrow.
Aunt D has finally gotten to go home (I know she was so ready to go home) and I know that I am really going to miss her! I have enjoyed getting to spend so much time with her!
Well, that is all for tonight. Hopefully I will have more news tomorrow.

Just when you think. . . . .

you have your schedule all figured out. . . .the hospital changes up your schedule. . . .AGAIN and again and again!

Yesterday Aunt D had her stemcells harvested. They got a very good amount. Mom needed 4 million (whatever the measurement is) and they harvested 14 million (what ever the measurement is). We went this morning to do blood work so they could see if your white blood count was dropping back to normal. Well when we finally got the results they said that her wbc's were still to high and that her magnesium was low. They gave her some pills for the magnesium and said that she would need to come back tomorrow at anytime. We headed home (finally) and made it home at about 6:00 pm. Later in the evening she went down to my parents house and checked her schedule which now says that she has to be there at 7:15 AM. Instead of getting to ride back down there with us, she now has to leave at 5ish to make her appointment. I know that she is so ready to go home and I hope she gets to do that tomorrow or Thursday. Thank you Uncle T for being patient while she has been gone! And thank you Aunt D for taking this on and helping Mom. We all appreciate it and we love you so much. And to my Uncle D. . . .we love you too and are so glad that you were a match! Hopefully Aunt D will be back to "NORMAL" (?) so she can go back home and see her family.

Mom will be admitted on Monday to begin the chemo treatment she will receive before they do the transplant. The transplant is scheduled for October 15th (do not be surprised if it changes several times before that date!) and that will begin our 100 Days In H-town (maybe I should write a book and use that as the title!!!). Tomorrow we have to head back to MDA for an echocardiogram and hopefully that is the last trip until Monday (again, you never know when it will change!). Right now, Mom is still very, very weak. It is so hard to see her like that because if you know my Mom, she is like the energizer bunny. She is so frail and lately she hasn't really smiled much. I know that she is ready to start feeling better.

My grandmother P has been cooking dinner for my parents and Aunt D so at least I know that everyone is eating some good food. During the day Mom has been staying with grandmom and poor Max is having a very hard time with that because he has to stay outside and can't play with his best bud!

Please pray that all goes well with all of the upcoming events and that an apartment becomes available at just the right time so we can get Mom where she needs to be without too much drama! She will be in isolation at the longest 30 days but could be released anytime that her blood work shows that things are working like they should and we have to have a place to go (not much stress!!). My sister B and I will be staying with Mom for 2 weeks, every 2 weeks with Dad and RA staying when they can and on the weekends. B will be away from her kiddos for those 2 weeks so they will all be having some major stress in their lives so say a little prayer for them!

Some days I just feel like throwing a temper tantrum and yelling at the top of my lungs how much I want my Mommy back! I don't know how my sisters are dealing with those days because we don't have much time to talk to each other. Sometimes while I am sitting here writing I feel guilty about how I am feeling because I feel like I am being whiny (I say that this happens while writing because sometimes I really struggle with what to write or how to say something and it makes me really think. I hope that makes some sort of sense!). How do you deal with all of the emotions that seem to run the gamete every single day? (thank you for indulging me and my little rant)

Well, I think that is enough rambling for tonight. Thank you all again for everything. We feel that so many of your prayers have already been answered and we ask that you keep them coming.

PS: I am so happy that my friend Shelley's son is home for a 2 week visit. Thank you Mark for keeping us safe from harm!

A Long Day

Today we got to sleep past 5:00 am which was so nice! Mom and Aunt D had appointments at 8:30 (on different floors of course!) so first I went with Mom until Dad got there and then I headed up to hang with Aunt D. Today they removed Mom's pic line and put in her central line (or whatever they call it) in her clavicle (upper chest) area. She was very anxious about the procedure and was very emotional before having it done. After is was over, she was seemed much more relaxed. Aunt D had blood work and had to get everyone straighted out with that! Both were finished before lunch so we ate bbq in the cafeteria. It was pretty good but the homemade peach cobbler made in a cast iron skillet was yummy (which reminds me, I need to get my leftovers before Dad eats it!). After lunch Aunt D and Mom headed to the family center where they sat and talked (Mom usually lays down and naps) while Dad and I went and checked out of the hotel. Let me know you, 4 adults in a hotel room with all of their stuff is crowded. We were wild last night. . . .the 3 oldest were in bed before 10 pm and I wasn't far behind them! Once we got back, we headed to our class which the schedule said was on the 8th floor at the stemcell center (one side of the hospital). Well, we actually had to go back to the 3rd floor, find elevator F and head up to the 10th floor (on the other side of the building). On the way we hit a bump (Mom got sick) and had to stop and get cleaned up and then we were on our way again. We were less than 15 minutes late (which is pretty good!).
Our meeting was to give us more information on what to expect once Mom is admitted for the transplant. We learned a lot and I know that Aunt D and I feel better and I hope that Mom and Dad feel that way also. We were told what the daily routine is like, what to expect from the doctors, nurses, etc, we found out which floor we want Mom to be on, we also found out that what we think isolation means is not what it actually means for her. We also leaned that the 100 days starts the day she receives her transplant, we learned that the patients are encouraged (yes, I said encouraged) to make their room as homey as possible and last but not least, we want Mom to earn lots and lots of M&Ms. :)
Aunt D will have blood work this coming Monday and they will harvest her stemcells on Tuesday. If they don't get enough on Tuesday, she will need to return on Wednesday. We are so very lucky that both Aunt D and Uncle D were matches and that they were both so willing to help.
Well, I am going for now. Thanks for everything!

Tuesday

Today was another busy day that started at 6:30 am. Mom was pretty wiped out when we got back to the hotel. We would have finished earlier but our last appointment was running late and then they told us it was going to be cancelled because there wasn't a nurse to hold the class and we were the only ones there for it. Why couldn't they have let us know earlier? Anyway, Dad and Aunt D are here for tomorrows appointments. Maybe we will get a for sure date. I will let you know.

ER Trip and such

Well, yesterday Dad brought Mom to Houston and took her to the ER where they gave her the fluids she needed. The arrived at the hotel at about 3:30 am. We had to be up early because we had a 7:00 appointment and Dad had to get back home to teach. Thank goodness for the Family Center where Mom could take a nap or just rest. We finished up around 2:00 and ate lunch around 2:30 and then took naps!
She did eat some today. She ate three meals (small, but 3 just the same). She is asleep right now and I will be following soon. We start appointments tomorrow at 6:30 am. So goodnight to you all.

Weekend Wrap up

Well, as I type this, Mom and Dad are at the ER at MDA where they will be spending the night. Mom has gotten dehydrated and is getting fluids and such to get herself back in order. Tomorrow will be a long day for us. It starts at 7:00 am and we will keep going until around 2:00 pm or so. Please pray that we can figure out how to keep this from happening again and that we can get Mom back on her feet.

I would also like to add two people to your prayer list: a good friend's daughter (in her mid 30's) has been diagnosed with breast cancer and they just found tumors in her liver. Also, my hubby's cousin (also in her mid 30's)has been diagnosed with a very aggressive breast cancer that is at stage 3, she has 4 kids who are all under 10 (I think).

Thank you for your thoughts, prayers and comments. You don't know how much these things help.

Long Week

Well, this has been a long week, for me at least. Mom does not seem to be bouncing back at all from the last round of treatment and the bacteria that she is being treated for. She is very weak and is only able to stay awake for very short amounts of time. She is also not eating much which doesn't help her build up her strength. Today when we went by to see her, I ask her if she had eaten today and she gave me a dirty look and said "very little". We were really hoping that she would be able to build up her strength before she went in for her transplant which we hoped would make things a little easier for her.
She has a lot of appointments next week. She has to see a dentist and an opthomologist in addition to her regular appointments and included ones regarding the transplant. The trips to Houston are hard on her and completely wipes her out.
Please continue to pray that she will start to gain some strength before the transplant because it isn't easy when you are strong.
It is so hard to believe that we have only been dealing with this for 10 weeks. It seems like it has been years and I can only imagine what it has been like for Mom.