Karen's Day at Shands

Karen wanted a place for family and friends to be able to see how she is doing each day at Shands. This is how she is making that happen.

Busy, busy…

November15

Don: Gone 30 days, home 7, leaving today for another 23-24 days. Put in about 50 hours at work this week since I could get to the office. Went in early everyday so that I could be sure to leave by 5:00. I often work late but not this week! Needed to do this for myself because everyone there been so wonderful in supporting my extra time away from the office so I can be with Karen while she is out of town. That is what I did through Friday. Missed Dylan’s big day and Karen’s first public outing but it was great that Dennis was able to help with that. Thanks Dennis!

Saturday needed to be a work day and boy, was it ever. I started early at the barn and Dennis brought the boys out to us there. He even picked up Karen on the way so I didn’t have to stop. Karen wore her mask all day, like a good girl, and she left the horses alone. I don’t think she realized how much she missed the place but the kids and ‘normal’ home life are more important to her these days. She always had her priorities straight but they have changed to be even more so now.

We now have all the hay we think we will need at our barn and carried more over to Johnny’s while he is keeping Elvis for us. The pastures have been drug to hide the fact that horses do poop. The boys picked up a BUNCH of pine cones with Karen’s help. Jacob fixed the trampoline. Ken, Jacob, Dylan and Darren tossed hay up in the loft while I stacked it. Now that was a real big help! Laura brought Darren so he could help and she could watch. Thanks Laura! Dad did a great job of riding around on his electric cart doing what he loves the most, supervising. He is a very consistant person. I can tell you what he is going to say in almost every instance, depending on when he pulls up. For example, just as we finished stacking the hay in the loft, he drove up and said, “You’re doing it wrong.” Sometimes he will give us the benefit of the doubt and ask, “Did you do it right?” Oh, but we weren’t done yet. Darren, Laura and Ken had loaded Ken’s big tractor up and brought it over so we could stack the big rolls of hay into my brother Gene’s hay barn. Darren handled the stacking. Thanks Darren! He even drove one over to the pasture for us. Saved a lot of manual labor but we still worked hard all day. We didn’t break until after 4:00. Then it was off to Ken and Madeline’s to work on their computers. They had more than a couple virus programs on every hard drive. The rest of the family played cards and a great time was had by all.

God has really blessed us all. What a great day.

consolidation

November13

Hi everyone,  as Don said, we are going back to Gainsville.  Monday morning I will have another Bone Marrow biopsy.  Results take a few days.  This will prove that I am really in remission!  Either way, I must start another round of chemo on Wednesday.  This stage is called consolidation.  Induction phase is first, which we just completed.  Then you have Consolidation.  You don’t have to get quite as much chemo, only 12 hours worth, every other day, times 3 doses (5 days).  They let you out of the hospital on day 6 if all goes well.    Sometimes you have as many as 4 separate Consolidations before you get your bone marrow transplant.  We hope we will have a transplant “match” soon, so we may only have to get 1 or 2 Consolidations.  We hope this will get us done quicker.  Sometimes you have to sacrifice big now (missed birthdays, Thanksgiving and Christmas), in order to gain later.  We will do whatever it takes.  I am picturing me and my family hanging out at the pools at Shipwreck Island this summer.  OH, that would be sooooo great.

We will have to stay in Gainsville during Thanksgiving because I have to be there for the research meds, and special tests on day 8 and 10.  Thanksgiving is right in the middle on day 9.  I hate to leave right now because I am just starting to feel better, and I don’t want to leave my kids again so soon.  The Doctors seem to think it is important not to waste anytime between treatments.  They tell us that the consolidation will be alot easier than what I’ve had so far.  They say my blood counts will recover quicker and that I shouldn’t feel as bad for as long.  It is all very scary for me but I am trying to have faith.  We will be staying in Mom and Dad’s Camper trailer until we feel it is safe to come home.  I may need more blood transfusions or platelets or IV antibiotics, etc.   It is an uncharted course.  My precious older children, Heather and Randy, will be home for Thanksgiving so I have to figure out how to get to see them.  Randy has been gone at Harding University since August.  Heather is in Tallahassee at FAMU, so it is easier for her to get home.  I miss them both. 

Keep praying, I am so thankful for all you, love Karen

Flag raising at Dylans school

November13

Hi everyone

 I got to go to my son’s flag raising ceremony at his school today.  I wore my wig and mask (felt like Micheal Jackson he he).  Even though I am pretty much okay, right now, I just don’t want to take any chances in public places.  Dylan seemed proud to have me there.  He got to meet with a state, federal, and school board representative, and also got to ask them some questions  at a special forum.  There were only 6 children, all 5th graders, selected to do this so it was very special for him.  I am very proud.  Dylan’s dad, picked us up, and made sure we got there on time and everything.  Thanks Dennis

First consolidation is scheduled

November12

Don: I just got a call from Karen. The consultation and blood test appointment today was about two hours long. The results were great and Karen feels fine. We now have the plan. We will be back in Gainesville on Monday for bone marrow biopsy and then in Shands starting Wednesday for the first round of consolidation. Karen was hoping to have a little more time off but, being the trooper that she is, she is ready to get started. She will be in Shands for only 6 days. We will be in Gainesville for 2-3 weeks depending on how she feels. The safest course of action is to stay in Gainesville but we might sneak home for a short visit. Keep us in your prayers. We have a long way to go.

great time at home

November11

We have had such a great time.  Dylan and I have been putting together puzzles of dinosaurs, and Mom and Dad have been coming to visit daily.  Laura and Kody came over and we all sang karaoke again.  Laura can really sing so that makes it nice.  Dylan is good too, and they both know a lot of songs.  Eventually, kody who needed a nap, was trying to shoot his mother with a nerf air gun…this made for some interesting recordings..lol.  I also am very proud of myself because I actually made a nice dinner for my family.  See these are the things we take for granted.  I did not (for a change) feel like the kitchen slave, but a mom…tears again…. I loved it.  They all ate well and no one complained. 

My children prefer me in a wig or hat as opposed to “ala natural”, which I think is funny.  I can just show Jacob the edge of my bald head and have him cringing.  What’s the big deal, there Daddy has been balding for years.  Sure he has more hair than I do but still… 🙂  Dylan actually enjoys rubbing my head, but then he wants the hat back on.

We’ve had plenty of catching up to do.  We spent hours searching for a lost telephone. Jacob finally found it in the couch.  Now Jacob’s cell is lost, so the search continues.  Poor Don has had massive loads of laundry and cleaning to do while also going to work daily.  I tried to get most of the unpacking done, but wow what a chore.  It could take a while to dig out from under all the paperwork necessary to complete this process.

Mom and Dad are taking me to Gainesville this afternoon at 4 pm.  I have a 9 am apmnt for a blood draw and visit with the Doctor.  Then back home.  We will soon have the plan for the next go.  I really hope they give me a little more time to get my strength back.  I am not ready to leave again for anything long term.  Pray for my strength to proceed.

I love you all,  and you and your comments are making a huge impact in my life.  I never knew I had so many friends and people who care… it feels good.  Thanks to everyone for all your help in this, love karen

Site statistics say “You guys love Karen”

November11

Don: When the site was set up Mike added a statistics plugin so we would know a little bit about how often the site is visited. I just remembered to look at those numbers. We knew that many of you visit because of the wonderful comments some of you take the time to post. What we didn’t know is just how “sticky” the site was and how many of you keep returning. While this particular program can’t tell me the number of visitors to the site, it does tell me how many page views there were. Karen has had over 600 views some days! This is awesome and inspires us to try even harder to let our friends know how things are going by posting something each day. Truly, thank you very much for visiting.

Doctor visit tomorrow

November11

Don: Thursday Karen has a doctor appointment at Shands so Ken and Madeline will be taking her down there tonight and they will all be back tomorrow afternoon. She has mixed thoughts about the outcome of the visit. She knows they will be telling her when to come back for the first consolidation treatment. It looks to me (based on the information they have overwhelmed us with) that if she starts consolidation on Monday the 16th we would have our day 21 checkup on a Sunday. That is something they try to avoid, but it would allow her to return home on Wednesday, 11-25. Thanksgiving is the next day on the 26th. If they start the treatment on Tuesday then none of our 3 checkups for the month would land on a Sunday and we could travel home on Thursday, 26th, Thanksgiving Day. Then, assuming a 2nd round of consolidation, we could start on 12-15-09 which would allow us to be home on after a morning appointment on Dec 24th.

Another option is to try to wait until December 1 to start treatment. This has us home for Thanksgiving and the week of Christmas, December 21. That sounds nice but I am kind of anxious to continue on the path of the more timely treatment and not wait. I think Karen wouldn’t mind taking it a little slower. We will see what the Doctor says and keep you all informed. Continue to pray for Karen to have the strength to endure and continue the fight. Your prayers and comments here are very, very helpful and uplifting for her. This is not something that she is facing only for herself. She presses forward because of her family and friends. Thanks, Don

Yipee! I’m home

November9

Guys, you are all so great!  I am so happy!!!!   For some reason all I can do I cry.  I have my beautiful boys at my sides, and my parents have stayed with me during the day.  Don was able to go to work today, and mom and dad carted me all over town taking care of loose ends.  I wish I could see all of you, and you have all lifted my spirits so much.  Please keep up the contact!  Please know how happy I am to have my babies with me.  wow!   Talk about priorities.   I don’t want to be anywhere but where they are!!!!!!!!!  We have made some wonderful karaoke songs on free Internet, including a duet of Dylan and I we put on facebook.  I think it is on Don’s page, but all his friends can see it, so if you are interested and can’t find it, ask him.  I’m pretty much a computer dummy.  If it’s broken I have to wait for him.  uh oh, I’m missing Wii Beatles rock band.  I’m one of the lead guitarists, and sometimes, one of the worst singers possible.  I love this.  Praise God for time off from Chemo and Bone marrow biopsies!!  I love you all!  Thanks for all the happiness, prayers, and encouragement.  keep it up.  pray for my strength. no more tears, love Karen

Sunday night and we are home!

November8

Don: Karen just went to bed. I am so jealous! It has been such a busy day that we didn’t get a chance to post anything yet so I am staying up a few more minutes.

Karen’s count jumped all the way to 1700 today! That is just totally awesome and was unexpected. They were hoping that she might have reaced 1,000 by the time she goes back on Thursday for her visit. She blew that out of the water with the Saturday midnight blood test so when the doctor came to the room at 11:00 Sunday morning he said she could go! Her Dad and I had run an errand. Her Mom called us and we rushed back and threw everything in the car and left before anyone changed their mind. That kept me from getting anything on the site before we left and then when we got home I went to cleaning like a mad man. I washed 3 loads of sheets, blankets, tablecloths and couch covers. We do have a couple of inside cats so I just wanted to do my best to lessen cat hair. We won’t be having any dogs at our home during this visit. We are leaving them at Laura’s (thanks Laura!!).

Jacob and Dylan came over for a couple of hours and then we took them back to their Dad’s when we went to town to get some medicine for Karen. It was really great. They will be staying with us the rest of the week. Karen is very excited. We are so glad to be home even if it is for only a week. We have a long road ahead of us but feel very confident that all is going well and will continue to do so! Karen asks that prayers are for the strength to carry on in the fight. Treatments aren’t pleasant but stopping them is just not an option. Thanks to everyone for the prayers that have gotten her this far.

Day 24- white cell counts are up so we went off the floor

November7

My white cell counts are improving everyday.  I have slight moments where I actually feel like myself.  Mostly though I still have that hot cold thing going.  I will of course still need a mask but I may be 100 % by Thursday when they check my blood again.  (Well they check it every day in here, I’m talking when we come back)

I actually left the floor today(7th floor of this building).  I have been too scared before, but I was feeling pretty good so Don took me for a walk  off the floor.  We went to the 3rd floor and walked through the cafe.  We went outside which was the very first time for me since coming in here.  I felt the breeze and the sunshine.  I took off both my sweaters and my hat and we sat on that bench.  I closed my eyes and just enjoyed the things I used to take  for granted.  It was wonderful for me.  This bench overlooks a pretty Pond they call “Garden of Hope”.  It is really pretty.  We then went down to the first floor and explored that area.  I even managed one flight of stairs coming up before getting on  the elevator to come back to the room.  We are still doing our laps up here on the floor but nothing beats that fresh air and sunshine.

I love you all,  please keep in touch, love Karen

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