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

I am doing good. I am still unable to eat  and i have developed this terrible cough.   I went for a bronchoscopy procedure yesterday, so we should get information.  If I i am up walking around I have to wear oxygen or I will get too short of breath.   But  on the bright My labs came back this morning with an agc  count of 304!  when that number gets to 500, I can eat fresh foods again.  This is such good new.  it means the end in sight  I have been soo sick.  thank you God!   this has been a hard go, but with out him, I couldn’t make it.  thanks again for all the prayers,

Don: Karen’s fever was over 100 most of the day. She hasn’t been breathing deep enough and now she may have something in her lungs. Best guess is pneumonia. They will do a procedure Tuesday morning to see inside of her lungs and collect a sample that they can run tests on. Since she has no immune system at this time it is risky. We are again asking for prayers. Thanks, Don and Karen

Don: Tomorrow morning (Sunday) will be day 9. Saturday was a long day. Karen has had a pain pump deliverying a low but steady amount of pain medicine since Friday. It is the kind of pump that allows her to hit the button when she needs a little more. The computer that controls this stuff makes sure she does not get more than the doctors will allow. She didn’t hit it much Friday or Saturday morning. Then came Saturday at noon.

Out of nowhere Karen started trying to throw up. Her throat has been so sore for a couple days from the 5 days of Total Body Radiation that she can’t eat. So she really came up dry. Our nurse today does not usually work the cancer floor. She was very friendly and really seemed to know her stuff. However, the cancer floor does things different than would be done in any other part of the hospital. This put the type of care we were used to getting at odds with what the nurse thought Karen should have. Let’s just say that it made a stressful situation even more stressful. I felt so bad for Karen. We both felt bad for our nurse after things settled down. She was trying very hard to do the right thing. There was another nurse that has taken a special interest in Karen (lot’s of them have) that came in and was able to give Karen the emotional support that she needed to settle her down.

After the nausea came a 4 hour nap. When she woke up from that she started running a fever. It is 6 hours later and she still has the fever. It has ranged from 100 to 103. The thing about a fever at this point is that it does not mean she must have caught a virus of some type. It is most likely a neutropenic fever because her blood counts are so low. She is achey all over but the medicine does take the edge off. We do need to try to keep the fever down but at least she is not ‘sick’. Blood counts are supposed to be down at this time. She can expect to have her most uncomfortable days from now through day 14. So about 5 more days.

Sorry for the unhappy report to pass on to our family and friends today. Still, we both are happy to be here instead of somewhere else and thank God that we are here. Our prayers are that we have a long and happy life. We would not expect to go home cancer free without having gone through this treatment. So please just pray for Karen to be as comfortable as she can be while her body does what it needs to do to except the new blood.

Don: Every day that passes is another day closer to getting to the other side of our Gainesville stay. Remember that we have been told all along that we will have to be here for 100 days. Today is Day 5. We should only have to be in the hospital about 21 days, but could be longer.

Things have been going well until last night. Karen started feeling a little more pain which I believe is mostly attributed to the Total Body Irradiation (TBI) she had for 5 days before transplant. In her case it is the inside of her mouth and esophagus. Makes it kind of hard to eat or swallow pills but she is trying very hard to continue to do both. I know she is very uncomfortable but I smile at her across the room when she looks up and she smiles back. The medications for pain help but it is time to turn up the prayer level!

Dear God, please help Karen to get through the next few days in comfort. Give her peace in her body and spirit. You have surrounded her with many people here that love her. Family, friends and hospital staff and we thank you for that. We know that they are all looking out for her and that you are guiding all of them to support and care for her. We love you Jesus. Amen.

Well, today was a wonderful mothers day! all my family came to see me over the weekend! It was great! Even got to see little KODY! And my transplant is going really good so far!

For most people getting a bone marrow transplant these days it is not very exciting. To the casual observer it looks like nothing more than your nurse just hung a bag of blood that you are getting through your IV line. Karen has been doing very well since returning to Shands last Friday. Saturday and Sunday she got chemo. Monday, Tuesday, Wednesday and Thursday she had Total Body Irradiation (TBI) at about 9:00am and 3:00pm each day. Friday morning she had one more TBI. Friday afternoon she was given some drugs about 1:00pm so they could start the transplant about 1:30pm. Her blood pressure was as high as 185/125 (very bad). That came down before 1:30. They started giving her the new cells and her heart rate jumped from 60 to 160 (very, very bad)! She could feel it climbing before anyone even noticed it on the monitor. They stopped the transplant, gave her some steroids and when they started again about 15 minutes later everything was better. That is why you go to a cancer center for this type of treatment. They know what to do and don’t have to guess what they should do.

We thank God for all the events that led us to Shands, brought down barriers that were in our way to be able to get the BMT done at Shands and kept us here for the transplant. Karen will be facing more struggles for the next two weeks and we would love to have all of our friends and family to continue praying for her during that time. She will be very immune suppressed (neutropenic) and could have complications from her body fighting the new blood cells (graft vs host disease). And that is just the first two weeks. We have other issues to get through and pray about after that and for the next 100 days but let’s just focus on first things first!

Maybe I can get Karen to post a message tomorrow giving better details about what went on today. Let me just say that from where I was standing and watching, it was scary.

Hi everyone,

we are settling in well here at Shands and I have finished the 2 days of Chemo.  I will start radiation tomorrow so that will be something new.  So far I am feeling mostly good, but starting to notice little minor ickies.  I’m a big whiner though so go figure.

I am hoping to see my gang of kids this weekend if we can work out all the details.  looking forward to that.  Mom and Dad are coming tomorrow and Laura is hoping to visit soon too.  Ginny is finishing up LPN school (I”m so proud!) and her family will be coming this summer!

I am so truely blessed.  I get a little nervous when I think about all the things I will soon go through but I know that God is with me.  And he has provided me with so many friends and so much support and all the prayers.  Its amazing. 

love you,karen