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.