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.

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.

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.

Don: There are markers and goals that we keep our eye on. The biggest target is Day 100 which is going to be August 15th. I had originally asked for 5 months leave which would have carried us past that date. The paperwork I was given to sign when being granted leave has me back at work on August 1st. That would mean leaving Karen in Gainesville and heading back without her. Hopefully her status at that time will be OK for that to work out.

Another closer goal has just been reached. Today is day 31 and it is time for another bone marrow biopsy. She is resting peacefully and getting fluids after having the procedure this morning. What we are looking for is to see if there are any ‘blasts’ (that is bad cancer cells), any trace of the Flit 3 gene and to see if she is now blood type O-positive. That would mean that her donor blood cells have taken over so lets all pray for “O”! We won’t know until Thursday. We will let you all know what we find out.

Don: Just a quick note to let all of our friends and family know that we think of you often and know that you think of us too. We are aware that you would like to have more updates but the daily routine doesn’t lend itself to having things to tell you on a daily basis. 5 out of 7 days we will be at the hospital for labs. They pull blood after a long wait in the waiting room. Then they want us to wait for the first results. If Karen needs something it is a trip over to the infusion area. Today she need fluids. Her throat hurts when she drinks so she doesn’t take in the amount of fluids that are needed to keep her body healthy. So they give fluids as needed. It is a boring routine that takes too much of each day and isn’t very news worthy. Please know that Karen is doing what she can to take care of herself and Shands is doing the rest.

The general status of our girl is “Good”. Not good enough that she feels no pain or can go home but good in the way that means there are no complications that have not been able to be handled. Yesterday we were told that her latest CT scan of her lungs show no more fluid in the lungs. She has started having a little higher level of nausea but was given some medicine for that today. She is eating pretty well but fluids alone are an item that she needs to work on.

Thanks for continuing to watch for updates and sending us your prayers. Don and Karen

Don: Wow! They let Karen out on day 19. Time line for this trip to Gainesville is that we got here on April 29, checked in on Friday and had two days of chemo and 5 days of radiation and received the bone marrow transplant on May 7. They like to call that your new “birthday” and that would be day zero, the next day was day 1 and so on. Today is day 20. They let us out yesterday but the Internet connection is having a lot of trouble at the moment. I have no idea when this message will really post to the site because I have just lost connection again.

We have been here 4 weeks today and if you use their statement that Karen must stay in Gainesville until Day 100 then she should be able to go back to Bay County on August 15th. I don’t know how much arriving at that number is science, how much magic and how much is statistics but that is the target they have given us. Maybe she could head back sooner and maybe it will be later or they might have it exactly 100 days before we leave. Sooner would be nice because I was granted Medical Leave of Absence for a little shorter time period than that.

The main thing we wanted to let you all know today is that Karen is doing very well compared to the normal time frames. She has recently had some small bumps in the road and doesn’t feel perfect but we measure everything on what she has been through so far and are really pleased with how it is going so far. She has been down more than up this passed week so she really needs to work on building muscle in her legs and her stamina in general but I could not be more proud of the effort she puts in trying to make it happen. Prayers and contact from all of you really help a lot and we thank each of you who have taken the time to let us know you care. More information to come later. Maybe even a note from Karen!!

Don: Karen and I are both on Facebook. You can contact us there or through this web site. Her email address is Karen@KarensDay.com and mine is Don@DMWebhosting.com. It is really great to be able to stay in touch with all of our friends and family using the internet. It makes a big difference in her recovery because she doesn’t have to feel alone or isolated and is still able to be apart of the world.

Don: Day 15 of 100 (5/22/2010) Blood counts are over 2200. That is a long way from how high they will go but the goal during treatment is to grow back to at least 500 after they have knocked you down to zero. So from here forwrd we don’t think about counts much. Cancer treatment is about taking it day-by-day and winning the little battles. The war will take care of itself. For a couple of days now the issue has shifted to fluid retention. Karen is wearing compression stockings to help with that. She had me take photos of her swollen legs because she has always had “bird legs”. 😉 Her phrase not mine! I guess she just wants to remember what she looked like with a little meat on her legs.

That reminds me that we may not have mentioned she did lose her hair again after the treatments. We buzzed the long stuff off when she started pulling it out. I got to do it this time and her head just looks so cool to me with the black stubble look. Now, about a week later it is getting the clean shiny look. What a perfect little, smooth, round head she has. I love to rub it while we watch a movie. She really likes the way it feels but tells me that I better enjoy it while I can because she won’t be shaving it in the future. As fast as she can grow out her hair the bald look is out of here!! She was really proud of her one inch hair when it came back last time. Then when it hit 2 inches she was feeling sexy again. I loved to comb it for her.

Thanks for all the prayers that we have received. She is on many prayer lists. If you have a prayer list that you can add her to, please do. Later, Don