Don: You never know what is going to happen next, do you? Karen took that fall last Wednesday (see previous message) and then that night started running a fever. We called Shands and they finally decided (after reviewing the options) that the best thing for us to do would be to try to make it through the evening and be at clinic first thing Thursday morning. We hit the road about 3:00am and were here at 8:00am. We ended up staying two nights in motels in Gainesville so that we could go to Outpatient clinic on Friday and Saturday. They almost put her in the hospital Wednesday but they were full and no one was really sure what we needed. She had a fever on Thursday evening again, though not as high. No fever since then. We went home on Saturday knowing that we had to be back on Monday morning (today). She was even more uncomfortable Sunday. They have decided to admit her today since she is not getting better and may be slightly worse. They are talking about scoping her out to check her stomach and gut. They also think they are going to scope her lungs because of borderline results on a test they did Friday and are repeating today. We will keep you posted. Don’t let up on the prayers, please. We have a long way to go.

Don: Karen took a little spill today when we met the vet at the barn to get some bloodwork on the horses. In places we have almost beach sand. She noticed one horse roaming free that was going over to a new one that was tied up. She was in her flip-flops and was going to separate the horses, they got a little frisky as she got close, she tried to quickly back up and fell straight to her back in the sand. Knocked the wind out of her and may have wrentched a muscle or two in her lower back. That is a drag, since she already doesn’t feel real well most of the time, but she was able to walk around a little after a short rest. Hoping that the back doesn’t hurt too much or for too long.

Don: We really appreciate all the kindness and prayers that keep coming our way. Everyone we see naturally asks, “How are you doing?” Things are going pretty well. We went to Shands yesterday after a two week break. Our next trip is not for three weeks! They took her off the steroids completely yesterday. That is a goal we have been wanting to reach. Now we just need to watch and see how her body does until the next appointment. She still has a couple of medications that she is on. If she does well this time we may be able to make changes to the remain drugs next time.

Our biggest issue now is the fact that this seems to be never ending! The challenge originally was to stay alive. Now it is to get back to life!! With the weakness and almost constant aches and pains it is very hard to stay positive and push ourselves to try to get her out of the house. We are going to make a list of places to go. Thinking mostly of places that do require some walking and are within about 20 minutes drive time. The barn, St. Andrews State Park, Under the Oaks and places like that are where we are going to start. We are wanting to build up to getting out to see Rocky’s show and Tony Vegas. Both of which we have done in the past and really enjoyed. Where is your favorite quiet place to go? It might give us some other ideas.

Don: On her visit last week they lowered Karen’s steroids again. Her blood work is so close to normal (again) that they decided that she does not have to return next week. She gets to wait for two weeks before her next appointment. At that time they may reduce her more or even stop the steroids. It is a slow process to get back to ‘normal’ but we are moving in that direction. Please keep praying for full recovery.

Don: We made it. Last Thursday Shands told us we didn’t have to come back until this Thursday. A whole week! We made it and are going to be heading out soon for a morning appointment. Besides the blood work and labs they called and told Karen that they will remove her port. That is another good thing. We expect that they will lower her steroids again tomorrow. We are getting closer to being off the steroids completely. That is another important mile stone.

Have a great weekend everyone. Pray for Karen’ other Mother also. She is in the hospital and they have finally put in a breathing tube and feeding tube. She is doing better but may have to be in the hospital a little while. God bless you all for keeping Karen in your prayers. They definitely help us both!!

Don: Shands said they only need to see Karen one day a week! That is a huge step for her. She is a little scared to be that far away from Shands for that long but she is home this week. I will run her over there on Thursday and come back the same day. The kids will love getting back to a little more regular schedule and so will we.

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.