Wow.  I have been in some kind of fog.  This is the hardest thing I have ever done.  What an answer to prayers though.  Jesus Christ has been there the whole time!  I could not have made it with out him.  Prednisone and I do not mix very well.  I have been on in for a long time, but when the Docs had to up it after the GVHD got in my liver I have not felt the same since….until now.  I started retaining fluid everywhere and that made me really unconfortable not to mention what the prednisone was doing to my brain.  I feel that I have been in a “crazy-daze”.  Anyway, the doctors are lowering my dosing and hopefully getting me off completely.  This takes some pretty close monitoring with labs work and such.  My poor family having to watch me go through this, I know has been tuff on them.

On the bright side,  I got to go home 2 times, although it was probably not a good idea.  I enjoyed seeing all my kids, and neighbors, and a few family, but for the most part we couldn’t get out much.  I even spent the morning in the ER one day. 

I know that I am getting close to coming home more regular.  I am finally starting to feel better and stronger.  I have been trying to walk more and this is helping.  I am eating good and healthy and keeping my blood sugar under control.  The medicine induce diabetes should go away when we stop prednisone. 

I have so much support from my Family.  Don has been amazing and he makes sure I have everything I need.  Mom and Dad of course are always in the wings,  to see what they need to do. 

I love and miss everyone, and can’t wait to join back up with the real world again.

There is a purpose in everything, and it is all part of Gods plan

love karen

Don: Karen is doing well at the moment. Keep in mind that when I say that it is definitely a relative term. She has some specific goals of her own. Getting off of the pain medicine and the steroids are at the top of her short list. She has been taking less of both recently and it is looking good that she will continue going to lower doses this week and next. Both could be at zero by then. If that is the case then we would be trying to make the transition to her living in PC with visits to Shands instead of the other way around.

Prayers focussed on her getting off steroids, without any new flare up in her body of graft versus host, are most appreciated. Steroids were needed to help her new cells and her body to get along but you don’t really want to have to take them long term. They have their own side effects that we want to avoid.

Thank to all of you who continue to drop by for updates on this site and offer your prayers and support.

Don: Karen’s mom, Madeline, posted an update as a comment to our last post. It ties up our last couple of weeks very nicely. I have just moved it to it’s own message so that you all may see it easier.

Madeline: Karen spent from Aug 2 to the 10th in hospital on her supposedly 1 day admission. I was with her until Don was able to return to Gainesville on the 9th. She got to come back to PC Thursday, Aug., 12th and spent the weekend with her children. A much needed reprieve. Back to camper life and clinic Gainesville/Shands, Monday the 16th. She has been going to clinic everyday since then to check and make sure the medicine is doing what it is supposed to do. As soon as the doctors give the ok, she should be able to come back to PC for more family time. It’s a delicate balance of medicine until the new graft learns it’s job. Many of the meds have bad side effects, so the doctors are trying to tweak them for the right balance for Karen.

It’s Monday. What happened this past week? Well, I had just left Karen in Gainesville with her parents and headed back to return to work on Monday morning. That has not worked out exactly as had been stated when I started leave and may not, but I am patiently waiting for the final word on that.

The bigger item though is that last Monday morning they put Karen back in Shands “for a day” to work on getting her liver enzyme levels back in line. They are finally letting her out today. We only have a couple more little pieces of paperwork that they are putting together. Karen was about to reach the end of her rope and was planning her escape. I am so glad that they are releasing her.

More details later. The summary is that we are getting back to the camper and our ‘normal’ life of Gainesville/Shands. Today is about Day 94. Still looking forward to Day 100.

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.