Hi everyone, 

It is hard to believe that I can be sitting here in this hospital bed and feel this content.  God has taken such good care of us and he has provided for all of our needs and most of our wants.  I am so proud of my husband.  We have been through so many very scary things; he has pushed me around in a wheelchair,  carried me around the camper, helped me shower, fed me,  and tried to figure out what I wasn’t able to say when I looked like I had a stroke.   He has stayed by my side when all I could do was look out of my eyes and cry.  As a family we have been through so much, but God gave me the kindest most loving man I could ever ask for.  I was really upset initially when I learned my Don was not going to get his old job back,  but I have been praying not only for him but for all the employees at BCAR.  I truly believe that God is going to continue blessing us and bless the association too.  Thank you to everyone for all your prayers and know that we will get through this too.  much love karen

Don: Karen is in the hospital and Don in no longer working at the Bay County Association of REALTORS®. Yep, that’s the facts.

Karen is doing fine and we hope she will get out today. Her last note told you all how great she was doing. It was true. This turns out to be a reminider that we are not out of the woods yet, prayers are constantly needed and we need to take one day at a time. Her liver enzymes got high and her white blood cells got low. This was the day after we got permission for her to go back to Panama City with me for a couple days as I was to return to work on August 2. What a difference a day makes. They made a change to her medication and we went back on Friday (two days) and the levels moved back in the right direction. Just not enough. We went back the next day and things were still not right. They wanted to see if the medication was going to have the desired effect so Karen was scheduled to go back on Monday. The same Monday I was to turn to work, she would not be able to come home for a couple days after all. That was a little disappointing for both of us but the risks versus rewards of trying to squeeze in the trip were too high. Monday things had not changed enough to keep the Shands staff happy so Karen went in the hospital. They take such great care of you at Shands both in the outpatient clinic and if you are admitted. Obviously it is easier for them to spoil Karen with their kindness if they have us 24 hours a day. Karen has let them pamper her for two days. We are still dealing with an unknown issue in regards to her liver so they did a biopsy late yesterday. We should have more information today. That’s where the prayers need to focus, please. We need to get results that identify the true issue she is having and that God’s hand be on her and the staff as they fix her up!

What about Don not working at BCAR? I left Karen in Gainesville on Sunday night, went to work to return to my job, was offered a different job (that’s OK, I would have enjoyed that change) at 56% of the hourly rate I was making when I was granted a leave of absence to be with Karen during the longest and most dangerous portion of her leukemia treatment. After a short discussion, I gracefully left the building. No getting mad, no yelling. I would like to still go back but for today I am starting day three of no longer being an employee at BCAR because of the pay scale change.

Hi everyone.

  I am so improved from where I was it is not funny. 

My only Problem;  I seem to have chronic pain and no body really knows why.  It could be from the prednisone that I continue to take (for now),  or it may just be the simple fact that I have had a  bone marrow transplant.  This is what the Docs and PA’s have suggested.  I try to avoid taking any pain medication but it helps me do all the things I enjoy,  like maybe get out of bed in the morning lol.  Of course sleeping all day is pretty cool too. hmmm.  They are lowering my prednisone dose tomorrow , which is always a little scary for me as I worry about getting “graft vs host disease”.  Prednisone is an immuno-suppressive medication that reduces the risk of the GVHD, but it has so many negative side affects that the sooner I can be off of it the better.   Tommorrow is clinic.  We are only having to go once every 4 days now instead of 4 days (or more).  ugh!  oh yeah,  and all my lab work has been perfect for months.  So,  all is well here in G’ville!

I am really missing my kids, and my pets, and my home and getting excited about coming back home.  August 15th is my “special 100th day”, but I hope to sneak home a little sooner for a few days when Don comes home to go back to work on Aug. 1rst.  We will see.  It would only be for  about 3 days.  And mom and dad would bring me back here on the 4th I  guess.  They may not consider me ready, and of course I will be compliant.  Did I say compliant or complaining?  lol 

keeping in touch,

love you guys

Karen

Hi every one.  This has been something else.  I may have been toxic with one of the medications.   I was unable to talk or walk.  I am now talking very clearly again and walking pretty strong.  I am so glad to be able to communicate again.  It is about the scariest thing I have ever been through.  The Doctors have tested me for everything under the sun.   So far all results have been negative.  They have even checked my spinal fluid.  As if that wasn’t enough,   I have picked up some kind of virus or something that is causing me to have low grade fever, sore throat, aches and weakness.  Dad has been sick also, and several other family members who were visiting have also gotten sick.  This has been going on for the last 4 days so it is confusing when they are trying to see if taking me off the medication helps.  My Doctors and PA’s are amazing and I just pray they will continue to do the right thing and get me better and then get me home.

On the bright side, I got to see all my family this past 4th of July.  Both sisters, all my nephews,  all 4 of my precious children, my very best friend from home (lisa sutton).  I am so happy and satisfied.  This was such a blessing for me.

I have a 25 year class reunion on July 25.  I of course will not be able to make it this year.  But my dear friend Lisa Moates is going to try to come here to Gainesville to see me when she comes in from Pennsylvania.  I can’t wait to see her.

I love you all, continue to pray

karen

Don: We stand on shakey ground. The further we move down the path toward Day 100 the more we realize that this is not over yet. We need more prayers and we need to make them more consistently and often. I honestly can’t explain exactly what is going on and neither can the doctors at this point. Let’s just say that it gets scarier just when we were expecting it to get easier. Is it medicine building up in Karen’s system? Is it leukemia still in the body but not where we can find it with the normal tests? Is it parts of the body that have been damaged by the procedures that we have gone through so far? Maybe a small stoke?

Karen is having trouble communicating and that builds frustration and gives us all stress. All of the items I listed above are things the doctors have given us as possibilities to what might be causing the speaking issues. They have done tests and MRIs trying to eliminate the most obvious possibilities. While they feel very sure that we are not looking at a stroke, they haven’t been able to determine what is the cause. Nothing in any blood tests shows levels that are out of line. Karen feels that the medication is the trouble. We have to have the types of drugs they are giving her but maybe they can offer different specific drugs that can do what needs to be done. It is most likely not one drug but how two or more are combining and building up in her system. We were not scheculed for a trip to Shands tomorrow (Sunday) but we called and are going in so they can get more bloodwork done. She was also given permission to not take one of the drugs until after she is seen in the morning. We will see if her symptoms lessen by the time we go in tomorrow.

We will update you all again as we get the details. God bless you all and Karen! Thanks for your support. Don

Don: As you may have noticed, we don’t post to www.KarensDay.com as frequently as we used to post. The routine is not that exciting or that fun. Please know that we appreciate all the notes and emails from the many site visitors and friends that are following Karen’s journey. There have been some tough days recently but we just keep moving forward.

Tuesday was a good day. Ginny, John, David, Michael, Trish and Brandon arrived. Laura and Kody came down on Wednesday and Darren will get here after work on Friday. Thursday at 4:00am brought the arrival of Heather, Randy, Jake and Dylan. Madeline and Ken are always with us. So we have the three sisters (Karen, Laura and Ginny) and all the cousins. We have a family reunion! We will all be together for a few days and are staying in a nice hotel. No way we could put all this group together at the camper!! Hurray for summer time.

Hi everyone, 

We just had a really nice visit with my 2 younger boys.  They came a stayed with us in the camper for a bout a week (6 of us ).  Most of the time we just hung out, tried to stay cool and just be together.  That was really good for me.  I can’t wait to see the big kids, and my sisters are coming here soon after the 4th! 

I am having a REALLY good  day today.  My rash that I have had for months appears to be clearing up and clearing out, and hopefully not coming back.  I actually feel kind of strong for a change and my thinking is clearer!  Praise God!  Pray for more days like this.  I would have liked to have felt more like this when the kids were here.  We might could have done a little more…

Saturday was 50 days.  I of course have a 100 or so till they let me go.  The Goal is to only have to come to clinic 1 time per week and I seem  to have to be here 3 to 6 day a week.  But,  if I can continue feeling good and my labs and meds don’t need to many changes…now thats is something to look forward to.

I love you guys and will try to catch up with everyone soon!

Karen

Every week we go to clinic, and usually on the first day of clinic for that week, we see the PA, and the MD, as well as get labs, dressing changes,  and whatever treatments are needed.  It can make for a pretty long day at clinic.  Well, so yesterday at clinic, the MD told us that my bone marrow results showed 100% Donor cells only, and my labs showed that the bone marrow is actually making red blood cells.  yeah!  They do not have any results back on the flt#3 gene, and I’m not sure what they are looking for. 

My liver enzymes are slightly elevated so they will be watching that closely and I go back  to clinic on wednesday for more labs.  I have a rash on chest, and belly that itches like I don’t know.  It may be a graft vs. host thing.  But I’m not sure. I just know it itches!!!!

It looks like we are getting over hurdle after hurdle.  God is so Good!!!   I think the next hurdle is that the  new graft/immune system does not attack me or any of my vital organs!  It seems so strong and is working so well already!  I am still on prednisone and prograft (anti-rejection medications) and that’s their job to keep the graft “in check” until it gets comfortable in my body.  These medications also lower the immune system so even though I have this great new one, I have to be extra careful not to catch anything.  These meds also make me feel really crazy at times.  Right now I’m feeling pretty good, but it can change at any moment and then I am a crying, shaking, can’t think…basket case.  It can be scary.  Well, this whole process has been amazing and sometimes overwhelming. 

My esaphagus still gives me the most trouble.  its  the only thing that causes any pain.  And I have a very dry mouth.  It think my salivary glands are on vacation!!!

I am so thankful for all the support I have gotten.  I don’t know what I would have done.  Don and my family, and his family and everyone that have pitched in to help with children and animals and taking care of my home in Panama City, and ….there is too many things to mention.  I could go on and on…I hope I get to somehow give back for all that has been given to me.

I miss my children very badly and need a kid fix.  Hoping to get them soon…

love karen

Hi everyone,  all is going well.  I am feeling stronger everyday.   I am a little shocked, I guess that I am still this weak.  I walk around but I just feel unsteady.  Like my leg muscles don’t belong to me.  O’well, it could be the medications I’m on.

I am just so thankful I have had no infections, or fevers, or ADMITions to the hospital!!!!  I love living in the camper and I do not want to get sick again!  We are of course taking all precautions we can, and praying.  I wear my mask everywhere! 

We were told at clinic today (friday) that my bone marrow was “free of disease”.  So that is a good thing.  The PA also told us it would take a good 3 months for my blood type to completely change over to the donor.  It must be really hard to make a new immune system 🙂 

Life is good, and I thank God for every day I get.  It is so beautiful here with all the oak trees and churches and old houses.  I love you guys and will try to update again soon.

love karen

Hi everyone,  I am just trying to add another post.  Don has been so good abou keeping everyone in formed when I just can’t seem to muster the energy.  and Mom and dad too.  But I know that everyone would like to hear from me.

 I am weak but still getting stronger.  the medicine (antirejection drugs) make me feel really shakey and tired and it makes it hard to type or concentrate.  I feel like a 2 week old kitten!  Everyone is taking very good care of me here.  I guess I also get pretty comfortable in my little “safe bubble world”.  sometimes when I think about rejoining the rest of the world it is very overwhelming.  Just know that I love you all and I need you continued prayers.

My only physical problem that I am having right now is a pain in my esophagus.  It feels like I have a huge whole it it.  I can eat most foods but am having a very hard time drinking fluids like water.  We are having to go to clinic everyday for 1 liter of fluid which they give me through IV.  this is wonderful because it will help protect me kidneys and other organs.  I love how well they take care of me here. 

I got lucky and got the day off today so we will see how I do without my bag of fluids. 🙁

Anyway,  I will try to do better at keeping in touch.  love you all

karen