Cindy Lou

Journal to share my thoughts and daily events with friends and family
in my journey through Acute Myelogenous Leukemia (AML).

Wednesday, August 30, 2006


We are all settled in here, well Kyle has settled us. He is taking such good care of me. It was a fiasco trying to get out of the hospital yesterday. After I wrote, we found out I had to have 2 units of blood before I left which takes about 5 hours and of course of all days I get the nurse who is just taking her time. We arrived here around 5:30, had a little snack and Doug, Mom, Barb D and Mary Ann Kidwell came to visit. It was so nice to see them......I know Kyle had beeen telling people not to come earlier when I was having so many problems, so I had only seen a few people the hugs felt good and the conversation and gifts were great..... and yes, I did have some of that wedding cake ice cream, Doug! It was absolutely wonderful. I feel a bit stronger this morning and I'm sure each day will get better, I don't want to go back to that place.

Tuesday, August 29, 2006


I didn't want to tell everyone they were planning on discharge today until I knew it was actually going to happen.... AND IT IS! Kyle and I will be going to Hope Lodge for tonight and tomorrow and then HOMEEEEEEEEEEEEEE FOR A FEW DAYS. Of course I have to keep coming back to the Lodge, but I will get a few nights here and there in my own bed. And I will enjoy every second. Signing off until we get to the lodge.

Monday, August 28, 2006

Pictures for you Mom!!

We enjoyed our visit with you mom. It was nice to see your smile back and the joy in your eyes!!
I love my NANA!!!!!!!
Look at that smile!!!!!! Posted by Picasa

Sunday, August 27, 2006

Footprints in the sand

Thank you to all of you whose footprints I see carrying me through the days I could not walk. You lifted me whaen I could not lift myself and for that I am eternally grateful. I'm back with more determination than before that YES, I CAN. Today I actually was hungry and asked Kyle to get me some take out food...........I thought he was going to faint! Since they are weaning me off the steroids, I am having a little trouble trying to get my pills down, but we are working on that. Today, I actually felt good. Zac was in town overnight....he and his friends went to Tigers game last night , so he stopped last night and then again today and brought me some yummy food I can have tomorrow. I am so blessed to have such a large and loving family. Even though the Roth and Kromer family is large and we STICK together through thick and thin......our friends have become just as important part of our large family and without all of you we could not have made it through. Thanks to all of you who have helped Kyle and Marcie through this... there are just so many people to thank. Thank you ,all of you, WE ARE FAMILY!! Can't wait until I am sitting on my porch enjoying autumn with all of you!

Saturday, August 26, 2006

Number 7

Number 7
Originally uploaded by kyleroth.

Met our new granddaughter Liv

Today I met our newest and smallest granddaughter yet Liv Ellen. I shook with joy when they placed her in my arms. I HELD HER FOR AT LEAST 2 HOURS!!! She is just beautiful. We had a very nice visit. I also got some good news from the doctor this morning, They are going to treat this CMV virus with something different so I may only have to stay one week instead of 2. I am not going to get my hopes up though.......seems every time I do something else comes up, I will keep you posted. I just want to go home and sleep in my own bed. I know I willl feel better when I'm there. I don't know if I told you, but I've had some major blood sugar issues. They started giving me pills in the morning because the steroid they put me on made my blood sugar just a little high........well the pill works all day and since I'm not eating much it makes my blood sugar crash in the evening. Last night the nurse woke me up at 3 am and made me eat a piece of cake with chocolate frosting from their potluck they had because my blood sugar was 30. That was really wierd, but the cake was great and it brought it right up. So today Libby called and asked if there was anything I wanted and I told her "a box of chocolates" for my crash and burn times. Well she brought me the best chocolates I have ever tasted from Malley's. So I am set for tonight if I need it, but I feel like a beached whale with all the sugar I've had today. Thanks everyone for your continued prayers and to Jude and Shelly......I have just learned of all of the events that have happened to you. I AM THINKING OF YOU. lOVE YOU GUYS WITH ALL MY HEART!

Friday, August 25, 2006

another bad news day

Well guys, got another shot in the gut around suppertime. PA Vanessa came in to tell me my blood tested positive for CMV which is a virus that most of us carry around with us and it doesn'tbother us unless we are immune compromised. I guess they ran the test earlier and it came back equivocal so they ran it again and got results tonight. It means I have to stay 2 more weeks, which I think is the hardest part for me because I just want to go home. I have to stay because they have to watch my electrolyte levels very closely while they treat it. I will probably need IV Potassium, etc daily until they get the med right. So please say some prayers that will carry me through these next 2 weeks with the determination to stay the course. I know I have to it is just hard to think of it in those terms. One day at a time............I CAN DO THIS

Thursday, August 24, 2006

Cindy (Bella) is back again!

Hi everyone! I'm Back, hopefully for good this time. Had some scary days.....when you wake up in the middle of the night and feel like you are drowning, it can cause some real panic and a lot of activity in the middle of the night. I could hear the water gurgling around my heart. Steve, it helps to know you had to be on oxygen also. I was beginning to think I was the only person these things happen to. I've watched the patients that had their BMT after me, come and go. Of course, the doctor tells me that all of my symptoms are caused by side effects of the medications given to me for graft vs host, which they now know that I've never had. THANKS! So now they have taken me off all of that medication and I can actually carry on a normal conversation again. Of course, all those days in bed have taken their toll on my legs, so Kyle and I have been doing our short walks today. My new granddaughter, Liv is going home with Mama today. Oh, how I wish I could join them for a celebritory beer later! Maybe Monday the doctor tells me!

Wednesday, August 23, 2006

A little better day

It didn't start out to good when I arrived at 8:30 am. Cindy was hooked up to oxygen. She woke up in the middle of the night finding it hard to breath. Then later on they did some breayhing treatments which seemed to help. Then they took her down for more x-rays(no results yet). The Doctor said she has fluid around her heart. Gave her more lasics. They said most of her problems now are from side effects from one of the drugs that she was on. Cindy is taking her meds orally with no problem. The Doctor said he is shooting for monday for discharge if nothing else causes any problems. It's hard to try to keep her from getting to anxious when she hears that or from being to low when they tell her not today.

PS: Keep the prayers coming


Monday, August 21, 2006

Feeling alright

WELL, guys, I guess I need to kick myself in the butt here and get going hone. I can't stand all these pokes and prods anymore.I am feeling 199%better ,however, than I did yesterday.The Dr said I had a good MRI (better than his ,whatever that means) And they think that some of my hullucinations may have been coming from the cyclosporinro. So, now they are watching then.So it looks like this messes discharge up a little bit. But I have to take it 1 day at a time. YES I CAN!

Sunday, August 20, 2006

A few down day's

Cindy had a few lousy day's this weekend.Last night at midnight they took her for a chest x-ray because she had shortness of breath. She had fluid buildup but not in her lungs. And then on sunday afternoon they took her down for an MRI because her speech was real faint and hard to understand what she was saying. They think it is a side effect from one of her meds so they stopped that med to see if that is whats causing it. It will show up on the scan. We didn't get the results yet. She is kind of getting down because she was set on getting out on monday. She got emotional at times. I think she is having a tough time missing big events like Zac and Lauren's wedding and with the birth of Liv coming up. It's got to be especially tough for someone so family oriented.

PS: Keep the prayers coming.


Wednesday, August 16, 2006

Very Good Day

Today was a very good day! I had very little nausea and no vomiting. The Dr nows says that he thinks the esophagus has a little GVH, but the biopsies are not back yet that they took during the EGD. So we will just have to wait and see. He says it is really better to have a little GVH which Steve also said in one of his blogs. It shows the graft is doing what it is supposed to do. The Dr is very happy with my counts. He says I am definitely engrafted with libby's bone marrow cells. My hemoglobin continues to climb and I have needed no red blood cell tranfusions. My platelets are still low, but he says that the platelts are the last cells to catch on and grow. You can tell they are low, my body is covered in bruises. I fell on one of those nights I was having hallucinations and my butt is one big bruise! Steve, at least Mickey Mouse didn't lock me out of my bathroom, but I was seeeing all kinds of strange things. I swore there was a weird cat in my room and my nurse kept reassuring me they would not have cats up there. My white count is up to normal limits and I am not what they call neutropenic any more. that means I am not as susceptible to infection as I was. So, now they are preparing me for discharge. I started taking some pills today. It went well. More tomorrow. The Dr said the steroids are making my blood sugar go up and I may need to be on insulin until I am weaned of the steroids. It depends on what reading it is tomorrow. It was 170 fasting today. So, Erika, I may be joining you! Although, you will probably be done with that soon. As soon as Liv gets here, which may be within the week! Exciting!!!!!!!!! Kyle trimmed KD and Erika's trees today and then had lunch that Erika made for him. then he came up to see me. We had dinner together. And we are watching the Tigers game. So it has been a very good day Keeps me saying YES I CAN!

Tuesday, August 15, 2006

Glorious news and Big Thank you Steve and Ginny

First of all I must give a big thankyou to Steve Wicker and his mom, Ginny. I had not read any of my comments for a few days. I finally read them this morning. WOW! Steve your words make me feel so much better, knowing I'm Not alone in this, knowing I can be ok after all the horrible things are over. I have new strentgh and new determination due to you. Thank you from the depths of my soul. Ginny, thanks for your wisdom on the subject and sharing your private stories.Your support means so much and I can't imagine how hard it must have been on you to watch your young son go through what usually "old" people do. I also thank you from the depths of my soul . And now on to the news of the day. The Dr was in and said no GVD showed in the esophagus. He started me on steroids, and said I will feel better in no time. they are starting to wean me off the IV's and start me on pills again, but they are going to do it slower this time. Maybe I will get to go home on Monday! We will see. I think I can, I think I can ,I think I can, YES I CAN, YES I CAN,YES I CAN!!!

Monday, August 14, 2006

I' m baaaaack!!


Sunday, August 13, 2006

Made some progress(small steps)

Cindy had some company today and responded pretty good to it. Mom Kromer and (Jerry's Kids) Craig, Doug and Tony and also Cindi. Cindy walked out of the room for the first time in a few day. We walked down to the patient lounge. Doctor Dean says she should try to walk little during the days. After that we went back to her room and she did a good job for not walking for a while. After that the boy's and Cindi kidnapped me and went to the winking lizard for wings and of course a few beverages. Tonight Cindy got three units of platlets and she will get two more tomorrow to get her counts up so they can do the scope to see if she does have host vs. graft. If she does they will give her steroids right away to combat the nausea. They say it will work very quickly.

PS: Keep the prayers coming.


Saturday, August 12, 2006

A little progress today

Cindy made a little progress today. She was a little more alert today and no nausea today. She did have a headache and they took her downstairs to do a scan to see if maybe she had a sinus infection. They also did a chest x-ray while she was there. No results yet from either one(probably monday). She still isn't eating any solid food , just a little liquids. Hopefully her counts come up enough to do the scope which they canceled on friday to chech graft vs. host. If it comes back positive then they will give her steroids to combat that. It's really weird how things can change so fast. Keep the prayers and good thoughts coming.

PS: Cindi W., Im sorry I spelled your name wrong I'm used Y instead of I. I noticed after I finished the blog.


another not so good day

Friday was not a real good day. They sent Cindy down to have a scope done to see if she she has host vs. graft after 3 hrs later the doctor said that they couldn't do it then because her platelets were too low. That was a long three hours. So they are going to try to get the levels back up so that they can do the procedure on monday. Cindy was in no pain all day but she wasn't really with it. I knew we were gonna have some rough days. But it really tests your emotions. Thank you Steve for your support. Also Beth,Gale,and also Cindy W for helping with Marcie . And I can't forget Kyle , Erika and Kade (he is really great therapy)for everything they did for us while we are on our journey.

PS: And thanks again Cindy W. for that coconut cake it was great just like all the desserts you make.


Thursday, August 10, 2006

Back to the clinic

Cindy went for some tests today at the Taussig Center. We were there most of the day and late in the afternoon she started to run a fever(101) so they re-admitted her. She wasn't very happy, but this is what is best for her and I think she now realizes that. They did a blood culture and we will get the results tomorrow. It could be graft vs. host whhich is fairly common. And they may have to give her some steroids.


Hope Lodge

[KD posting]

Mom is at the Hope Lodge now and will be going to the Clinic for appointments every few days. She has been pretty nauseous and had to get an IV yesterday because she was dehydrated. They have computers there, but they are down today. She wanted me to post to let you all know she is doing ok. She will be back on soon.

Tuesday, August 08, 2006

Discharge day

Overwhelming is the only word I can descibe today. First of all they made me stay another day. Then they had to switch all my IV meds over to pills and I am having trouble keeping them down. The Lodge is very nice, like an old victorian Hotel, and i'm sure once I feel better I will enjoy it. Sorry, I havent been in tough in a couple days, nausea has ruled myworld. Like Steve said, take it one day at a time, and I am. so sorry this is short. Tomorrrow will be better!

Sunday, August 06, 2006

Day + 12

Today has been a day of preparations for discharge. I am excited yet scared at the same time. All of the IV medications have been changed to oral and the pills make make me sick. So we are working on that. I heard that I missed a marvelous wedding reception last night, but I was there in spirit. Congratulations Jillian and Britt!! I could hear how much fun was being had by all when Kyle called me during the traditional 500 mile dance! And I have aspecial thank you to Jill and Britt for the donations to the Leukemia & Lymphoma Society in my name. That means so much to me. Maybe someday there will be a cure for everyone with this awful disease. I have heard so many stories from people's families while here and it is heartwrenching. I feel so fortunate to have so much support from friends, family, the community, people I did not even know before. Thank you all! Kyle and I will keep you all informed on my progrss these next weeks as I continue the journey. We are praying for a smooth road. Thanks everyone, see you down the road!

Saturday, August 05, 2006

Day + 10

JUBILATION!!!!!! The magic school bus has reached it's destination and the pink boxing gloves delivered the KO. Libby's bone marrow has engrafted!!!!!!!! My white cell count skyrocketed to 1130. The Dr expects it to continue to climb like that. He is amazed that I didn't do the yo-yo thing where the wbc's go up one day and down the next. He told me this is early and my sister must have been the best match I could have found. OH, I thank the Lord for Libby every night and day. I also thank him for all of you who have taken this journey with me and have fought off those leukemia cells with your prayers and just plain determination that you need me here. Many times when I felt like I was slipping, you boosted me with your words and spirit. There is no way I could have done this without all of you! I know I am not out of the woods yet, but with my determination and your prayers , we are on our way to ful recovery. Oh, I almost forgot to tell you, I'm being discharged to the Hope Lodge on Monday! Alleluia!

Friday, August 04, 2006

Day # 9

I slept until 11:00 this morning ! Itook a sleeping pill last night and only woke up for vitals and blood draws. Maybe I should request those more often.Ha ha. My counts are rising . My wbc's are 470 and that is a good sign. However, I ran a temp of 38.6 during the night so now they are closely monitoring them. Just have to take this magic school bus ride one day at a time. And I would like to extend a special thanks to Steve Wicker. He is 3+ years out of bone marrow transplant.He wrote many comforting words to me and gave me details I didn't know.He is definitely a support person I can go to if I have questions. That is comforting to have someone to talk with and know "hey, is this normal.........did this ever happen to you?" I definitely have been touched by many, many people in so many diffeent ways. As the song says,"I'm only one, but not alone,my finest day is yet unknown!"YES I CAN

Wednesday, August 02, 2006

Day +8

This will be short. I ca barely keep my eyes open. The morphine is diung me in! The Dr says I'm right on track. I SLEPT MODT OF THE DAY TODAY(sorry) I did take a spill, trying to be independent and I got dizzy. My counts are low and that is good.

Tuesday, August 01, 2006

Day +7

Day number 7 was another not so good day for Cindy. Her WBC went down from 120 to 110 which is normal. The nurse said the count will go down to about 2o or 30 before they start rising. Cindy may have a few more days like this. Hopefully they drop quickly so the new cells start multiplying. Cindy had a friend from school come up to visit (Julie Etowski) Kaman. That was a surprise to see her. We haven't seen her in awhile. Keep the prayers and thoughts coming.