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

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