Hi everyone, 

We just had a really nice visit with my 2 younger boys.  They came a stayed with us in the camper for a bout a week (6 of us ).  Most of the time we just hung out, tried to stay cool and just be together.  That was really good for me.  I can’t wait to see the big kids, and my sisters are coming here soon after the 4th! 

I am having a REALLY good  day today.  My rash that I have had for months appears to be clearing up and clearing out, and hopefully not coming back.  I actually feel kind of strong for a change and my thinking is clearer!  Praise God!  Pray for more days like this.  I would have liked to have felt more like this when the kids were here.  We might could have done a little more…

Saturday was 50 days.  I of course have a 100 or so till they let me go.  The Goal is to only have to come to clinic 1 time per week and I seem  to have to be here 3 to 6 day a week.  But,  if I can continue feeling good and my labs and meds don’t need to many changes…now thats is something to look forward to.

I love you guys and will try to catch up with everyone soon!

Karen

Every week we go to clinic, and usually on the first day of clinic for that week, we see the PA, and the MD, as well as get labs, dressing changes,  and whatever treatments are needed.  It can make for a pretty long day at clinic.  Well, so yesterday at clinic, the MD told us that my bone marrow results showed 100% Donor cells only, and my labs showed that the bone marrow is actually making red blood cells.  yeah!  They do not have any results back on the flt#3 gene, and I’m not sure what they are looking for. 

My liver enzymes are slightly elevated so they will be watching that closely and I go back  to clinic on wednesday for more labs.  I have a rash on chest, and belly that itches like I don’t know.  It may be a graft vs. host thing.  But I’m not sure. I just know it itches!!!!

It looks like we are getting over hurdle after hurdle.  God is so Good!!!   I think the next hurdle is that the  new graft/immune system does not attack me or any of my vital organs!  It seems so strong and is working so well already!  I am still on prednisone and prograft (anti-rejection medications) and that’s their job to keep the graft “in check” until it gets comfortable in my body.  These medications also lower the immune system so even though I have this great new one, I have to be extra careful not to catch anything.  These meds also make me feel really crazy at times.  Right now I’m feeling pretty good, but it can change at any moment and then I am a crying, shaking, can’t think…basket case.  It can be scary.  Well, this whole process has been amazing and sometimes overwhelming. 

My esaphagus still gives me the most trouble.  its  the only thing that causes any pain.  And I have a very dry mouth.  It think my salivary glands are on vacation!!!

I am so thankful for all the support I have gotten.  I don’t know what I would have done.  Don and my family, and his family and everyone that have pitched in to help with children and animals and taking care of my home in Panama City, and ….there is too many things to mention.  I could go on and on…I hope I get to somehow give back for all that has been given to me.

I miss my children very badly and need a kid fix.  Hoping to get them soon…

love karen

Hi everyone,  all is going well.  I am feeling stronger everyday.   I am a little shocked, I guess that I am still this weak.  I walk around but I just feel unsteady.  Like my leg muscles don’t belong to me.  O’well, it could be the medications I’m on.

I am just so thankful I have had no infections, or fevers, or ADMITions to the hospital!!!!  I love living in the camper and I do not want to get sick again!  We are of course taking all precautions we can, and praying.  I wear my mask everywhere! 

We were told at clinic today (friday) that my bone marrow was “free of disease”.  So that is a good thing.  The PA also told us it would take a good 3 months for my blood type to completely change over to the donor.  It must be really hard to make a new immune system 🙂 

Life is good, and I thank God for every day I get.  It is so beautiful here with all the oak trees and churches and old houses.  I love you guys and will try to update again soon.

love karen

Hi everyone,  I am just trying to add another post.  Don has been so good abou keeping everyone in formed when I just can’t seem to muster the energy.  and Mom and dad too.  But I know that everyone would like to hear from me.

 I am weak but still getting stronger.  the medicine (antirejection drugs) make me feel really shakey and tired and it makes it hard to type or concentrate.  I feel like a 2 week old kitten!  Everyone is taking very good care of me here.  I guess I also get pretty comfortable in my little “safe bubble world”.  sometimes when I think about rejoining the rest of the world it is very overwhelming.  Just know that I love you all and I need you continued prayers.

My only physical problem that I am having right now is a pain in my esophagus.  It feels like I have a huge whole it it.  I can eat most foods but am having a very hard time drinking fluids like water.  We are having to go to clinic everyday for 1 liter of fluid which they give me through IV.  this is wonderful because it will help protect me kidneys and other organs.  I love how well they take care of me here. 

I got lucky and got the day off today so we will see how I do without my bag of fluids. 🙁

Anyway,  I will try to do better at keeping in touch.  love you all

karen

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,

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!

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

Hi everyone,

Thanks for all the birthday well wishes and continued prayers.  Just a few more days and Don and I will be heading back to Gainesville for the final round.  I am excited and nervous.  This is probably going to be tough, but I know I can do it.  I get sad when I think about leaving home for 3 months, but I have so much support, and such a  loving family.  I want to thank all of my friends for hanging in there and continuing to pray.  This has been a pretty long hawl, but we are winning the battle, praise God!!!

It has been really nice getting to be home for almost a month.  I have gotten so much stronger, I almost feel like my old self again.  It makes it hard not to run out and do things I’m not supposed to, like ride my horse,  or work in the yard.  We have gotten a lot done, mostly Don, as we prepare to leave again.  I have enjoyed time with Jake and Dyl, and can’t wait to see Heather and Randy when they come home from college this summer.  I pray that I will be able to avoid any infections or complications, and that my new cells will take good care of me, and make me well and healthy again. 

I love you guys,

karen

Hi everyone!

Heres the good news!  I am scheduled for a bone marrow transplant on May 7th.  I will be getting stem cells from an unrelated donor who is supposed to be a 10 out of 10 match for me.  I will have several “evaluations” and appointments, etc.  this month to prepare for that day.  I will actually get admitted April 30th or May 1.  They will have to start the chemo and radiation prior to the actual transplant date. 

My immune system will be completely ablated (killed) so the new one can take over.  Its like having a new birthday (May 7th) for my immune system.  It will take several weeks for the cells to graft in, and I will probably be in the hospital for 4-6 weeks we have been told.  I will stay in Gainesville for 100 days (this is a magic number!)  as this is the time period where most serious problems can occur.  We really haven’t been given anymore information but will be getting it this month at the appointments. 

Please continue to pray, as this is to be the final step in this very long process.  I know that this may be the biggest hurdle yet.  I can’t wait to get to the other side of transplant and start my new life.   My priorities have changed so much.  May God Bless you all,

love Karen

Hi everyone!  Wow.  Thanks for all the prayers.  I just read all the posts from Don…I had no idea.  I am so thankful for him, keeping all the updates going.  It was a really ruff week and I am so glad he was there beside me.  I’m sure all I did was sleep or complain.  The headaches were excrutiating!  And I still feel I am in a fog.  This brain and body are having trouble recuperating!!

But,  On the bright side,  I am home!!!  We got home around 730 pm on thursday, and it has been a whirl wind of activities ever since.  Trying to get unpacked, set up house, easter,  boys out of school for spring break.  I have so many things I want to do.  so many things I need to do, but I am just so happy to be home.  My legs feel like jello, and I am working on building up my energy so I can keep up with the guys.  I am at about 75% (too much chemo!), but each day I get stronger.

I hope everyone had a wonderful Easter Sunday!  It is a joyful feeling knowing we serve a Risen Savior!  Nothing could keep our Jesus in the grave!  He is at the right hand of God making intercession for us.  Praise God for the gift of Jesus!  I love you all. 

 My updates may be a little sparse this month, just know I am basking in the joy of loving my sons and family.  God Bless

Karen