Don: I am with my Valentine and hope you all are also. It is a good thing that I came down here Friday because they decided to keep Karen through Monday. This gives her more time on the antibodics through IV. They are still trying to decide if she will be needing anything through IV when they let her go home. We are hoping for only stuff she can take by mouth, since they took out the central line last Wednesday. This was one of the hardest weeks we have had because we were supposed to have been at home all week. On the bright side they are talking about her getting a little longe time at home before coming back for consolidation #4. Karen’s counts have come up again today so we really think that we will head home tomorrow. We hope everyone has a great day with their special someone.

Don: You have to read the title to the message to the tune of “Dashing through the snow, on a one horse…”. Good now I am not the only one with that stuck in my head. I really just meant that I wonder if I will be driving through any snow tonight on I-10. Since Karen didn’t get to come home on Monday (or Tuesday or Wednesday or Thursday or Friday) I am not willing to risk not seeing her while we hope she will come home Saturday. I am about to get off and hit the highway. Madeline will get to have the night off from staying with Karen at the hospital and I will get to see Karen! If she comes home tomorrow she can ride with me. Whether she comes home tomorrow, Sunday or Monday at least we will have had the time together some where. I promise to drive safe!

Hi everyone,

I am still at Shands.  I am feeling really good and all my blood counts are improving.  I am still receiving lots of antibiotics through IV while we wait for the results of the blood cultures.  We may get to go home friday or saturday.  If we are lucky.  I am very ready to go home and am getting pretty grouchy.  we have alot of student doctors and nurses on this floor, so I am getting a little more attention then I want right now.

Still no good news on the transplant other than we have a donor that is ready to go.  My insurance is still a problem.  Need to pray and trust God on this one.  Trying not to get down…all will work out.  I just need to go home for a little while and be with me family…

love karen

Hi everyone,  I went to clinic on monday thinking I would get to go home…

well that didn’t work out.  I had some “bugs” hiding out in my central line and when they flushed it take my am labs, well the bugs went everywhere.  I took to shaking like I’ve never done before.  I didn’t actually get a fever but they wisked me off to the infusion center and started me on some high powered IV antibiotics.  I was admitted to the 8th floor by the afternoon, an here I am.

They are planning on removing this central line today or tomorrow.  I will just have a temporary peripheral line in the mean time.  They said I will probably be here until friday.  They need to identify the “bugs” so I can get the proper antibiotics.  They are also wanting my blood counts to get more normal so there is no concern that I will need a transfusion.  Anyway,  here I am.  All is well and I am getting better.

love

karen

Hi everyone.  Didn’t get on the computer much this past week.  I had to go to clinic every single day for platelets which means benadryl.  I was knocked out by the time we could get back to the camper and slept all afternoon.  I’m sure this is the lowest my platelet count has ever gotten so far (count was “3” and normal is 150-400).  Wow, very tired this week.  I finally got 2 units of blood on friday and then I bounced back.  I am feeling alot better, but now the tummy troubles are starting…  This is just the way it goes and I’m used to it. 

I hope to go home this monday coming up, and feel pretty confident I won’t come back until they are ready to do the bone marrow transplant.  This could give me maybe 3 weeks at home.  Not sure but hopeful.  When I know something I will update the post.

Don is back with me for the weekend, and all is well here in Gainesville.  Thanks for all the prayers, and know that I am still in remission.  God is good.

love karen

Don: We had a message on the home answer machine last night. Even though it was late (and I would be calling eastern time zone so it is even later there) I decided to dial the number. I figured I would get some answering machine and could at least confirm the phone number. Well, we have a new ally in our efforts to move forward in getting Karen’s needed treatment. Her name is Kathy. She is a nurse case manager for AWAC, which is a company often referred to as a third party administrator (TPA). Their function as a company is to help move things forward. It may not always be the direction someone would like but it is movement. We have been feeling like we were stuck in the normal red tape this type of situation can bring.

It is too early to tell you much because that was just first contact last night. We hope to have more news as quickly as the end of the day. Kathy’s job is multi leveled in that she is to help determine if a procedure is medically necessary and then help the patient get it if it is really needed. While doing so she negotiates between the insurance company and the hospital. It also sounded like she has knowledge of grants and other methods of help/support if there is still a shortage of funds for a needed procedure.

Prayers are answered every day. This was another one. Please continue to pray for Karen’s health and our future together as a family.

whew.  what a day.  I am still groggy from all the benadryl I had to take today.  Benadryl is a premedication to prevent reactions when you need blood or platelets.  I had a reaction to the platelets anyway, so I had to have an extra dose of benadryl through my IV port.

I also needed an antibiotic Vancomycin (strong stuff which also caused me to itch all over)  for a possible skin infection at the site of my IV port.  It is looking a little pink and tender under the dressing so they want to be careful that I don’t get a blood infection.

Back to clinic in the morning for more fun.  Poor Dad.  mom usually doesn’t come with us on clinic days so he has to go down there and sit around waiting for me to get done.  He likes to play Sudoku (numbers game) on the laptop, so that entertains him for a little while.

Today was mom’s birthday and tomorrow is dad’s birthday.  I can sure think of a better way to spend my birthday than at clinic…Maybe they will have a post birthday dinner date when we get back home.  Mom cooked an awesome meatloaf dinner for us so that was nice.

My kids are back home after a great weekend together, and all is well,

love Karen

brownies are baked and waiting on Don and the kids to get here.  This weekend will be great.  Got my platelets today so I’ll have the weekend off-no clinic.  yeah!

Good news!  Renee is still in remission.  She’s had all the tests here at Shands, and she is still doing great!  I guess it was a false alarm with the bloodwork from her clinic at home.  (she lives in pensacola).  Anyway,  She is still in remission and trucking along just like me.  I am so happy!  I was so worried she would have to start over with the chemo.  We have been through enough…

all is well,  God loves us, and wants us to be happy through him,

love  karen

Don: Who would have ever guessed that time could move so slow? But it’s Thursday morning and Jacob, Dylan and I will be on the road Friday night for our great weekend with you! I can’t wait for them to see you and our great setup at Sportsman’s Cove. They can get in some long board and ripstick time in on those hilly roads! They are going to have a great time. Grandma and Grandpa better look out this time because we won’t be letting them win at Bananagram and I am bringing a dictionary!! 😎

All of our friends, please pray for a safe and FUN trip for the family.

Hi everyone.  Wi fi works again.  We are enjoying camper life.  I have been trying out a couple of recipes one of the nurses gave me (peach cobbler and banana bread).  I’m going to make some great brownies this weekend when my kids are here.  We are continuing to take daily walks and the weather has been really pretty.  I’m feeling very good right now. Nothing but a bad taste in my mouth, which is easily fixed by eating stuff 🙂

I wish there was no such thing as cancer of any kind.  My friend Renee is back here at shands after being told she may not be in remission anymore.  She has progressed about the same as me, up to this point so I am really upset.  She needs to be in remission and then get a transplant!  She is the same age as me and is a real fun, happy girl.  I enjoy her so much.  We were hoping to get our transplants at the same time.  Please pray that she will get back into remission. I will get to see her on thursday when I go to clinic.

love karen