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

Don: Some of you have been reading the messages Karen and I have posted on www.KarensDay.com on my Facebook page. Under Facebook Notes there was a place that allowed me to set up an automatic import so that I would not have to say the same thing twice. When we post a note here it just shows up there. Some time after April 18th (Karen’s birthday) that function stopped working. I reported it to Facebook and it looks like they have corrected the trouble. I hope so because we really want all of our friends to be able to easily keep up with how things are going. Not everyone remembers the name www.KarensDay.com but lots of people have facebook.

This message is mostly just a test to see if it makes it to Facebook! Later, Don

Don: Ever get tired of those “Murphy’s Law” type of days? Let me just give you the short version. We arrived at 7:00 and Karen’s catheter placement and recovery time took until noon. That was to be expected. Then we had to just hang out in the hospital until almost 5:00pm before we got in her room. She was hurting all day from the minor surgery and a catheter is literally a pain in the neck. Since she had not been admitted no one could give her anything for the pain. Grrrr. It seems that the blame is shared by all parties but what really gets my goat right this minute is that the patient is the one that suffers while larger entities (insurance and hospital) carry on the business of health care.

However, the good news is that we are in the room and the people (not entities) truly care for their patients. Once we got through the door we have had nothing but smiles, both on our own faces and all of the staff that knew we were coming. I just can’t say enough good about not only the caregiving staff (nurses, PAs, doctors, etc) but also desk help, housekeeping, dietary, social services, Arts In Medicine and more here at Shands. Over the many stays here over the last 6 months we have made many friends and know even more of the staff by name. We will be here in the hospital this time 4 to 6 weeks. While the medical treatment itself is tough the human treatment is going to be excellent and we know that everyone will be doing the best they can to help us not only make it through but also feel as though we matter to each of them. God bless them all.

Don: Karen is getting her tri-port right now. It is a surgical procedure so I am just hanging out. There was one piece of paperwork that the insurance company needs from Shands before they will OK them admitting Karen today. Fortunately she doesn’t actually have anything to be administered today. Chemo starts tomorrow. We know it will get worked out but may have to just hang out in the BMT clinic until given the OK to check in.

Don: Thursday, 11:30, pick up dental trays to be used for flouride treatments in the future after radiation. 1:00, labs. Dr. H. is on his way to go over the whole upcoming procedure again. We will sign some paperwork and then we go back to the camper to wait for tomorrow. That will be placement of the port and check in. First chemo will be Saturday morning.

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

Don: Today – April 18 – is Karen’s birthday. We had a little birthday celebration Friday night witth the boys because Jacob was going to (and did) leave the next day for an educational tour to Chicago! Then her friends Lisa and Greg took us out on their boat for a little ride and stop at Shell Island. It was really nice to just take some time to relax outdoors. Dylan was with us and went swimming. The water was freezing! Last night we went to dinner with our friends Kristina and Mike at Chili’s. Big fun and great wings! Today Karen will get a little birthday time in with her parents.

Lot’s of Shands stuff to do between now and the 28th. Then we will be out of town until after BMT. If you want to catch her before she leaves town then don’t wait too long!

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