Don: Karen’s fever was over 100 most of the day. She hasn’t been breathing deep enough and now she may have something in her lungs. Best guess is pneumonia. They will do a procedure Tuesday morning to see inside of her lungs and collect a sample that they can run tests on. Since she has no immune system at this time it is risky. We are again asking for prayers. Thanks, Don and Karen
Don: Tomorrow morning (Sunday) will be day 9. Saturday was a long day. Karen has had a pain pump deliverying a low but steady amount of pain medicine since Friday. It is the kind of pump that allows her to hit the button when she needs a little more. The computer that controls this stuff makes sure she does not get more than the doctors will allow. She didn’t hit it much Friday or Saturday morning. Then came Saturday at noon.
Out of nowhere Karen started trying to throw up. Her throat has been so sore for a couple days from the 5 days of Total Body Radiation that she can’t eat. So she really came up dry. Our nurse today does not usually work the cancer floor. She was very friendly and really seemed to know her stuff. However, the cancer floor does things different than would be done in any other part of the hospital. This put the type of care we were used to getting at odds with what the nurse thought Karen should have. Let’s just say that it made a stressful situation even more stressful. I felt so bad for Karen. We both felt bad for our nurse after things settled down. She was trying very hard to do the right thing. There was another nurse that has taken a special interest in Karen (lot’s of them have) that came in and was able to give Karen the emotional support that she needed to settle her down.
After the nausea came a 4 hour nap. When she woke up from that she started running a fever. It is 6 hours later and she still has the fever. It has ranged from 100 to 103. The thing about a fever at this point is that it does not mean she must have caught a virus of some type. It is most likely a neutropenic fever because her blood counts are so low. She is achey all over but the medicine does take the edge off. We do need to try to keep the fever down but at least she is not ‘sick’. Blood counts are supposed to be down at this time. She can expect to have her most uncomfortable days from now through day 14. So about 5 more days.
Sorry for the unhappy report to pass on to our family and friends today. Still, we both are happy to be here instead of somewhere else and thank God that we are here. Our prayers are that we have a long and happy life. We would not expect to go home cancer free without having gone through this treatment. So please just pray for Karen to be as comfortable as she can be while her body does what it needs to do to except the new blood.
Don: Every day that passes is another day closer to getting to the other side of our Gainesville stay. Remember that we have been told all along that we will have to be here for 100 days. Today is Day 5. We should only have to be in the hospital about 21 days, but could be longer.
Things have been going well until last night. Karen started feeling a little more pain which I believe is mostly attributed to the Total Body Irradiation (TBI) she had for 5 days before transplant. In her case it is the inside of her mouth and esophagus. Makes it kind of hard to eat or swallow pills but she is trying very hard to continue to do both. I know she is very uncomfortable but I smile at her across the room when she looks up and she smiles back. The medications for pain help but it is time to turn up the prayer level!
Dear God, please help Karen to get through the next few days in comfort. Give her peace in her body and spirit. You have surrounded her with many people here that love her. Family, friends and hospital staff and we thank you for that. We know that they are all looking out for her and that you are guiding all of them to support and care for her. We love you Jesus. Amen.
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.
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.
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!
Don: It is 6:20am on Wednesday. Karen’s counts have gone up again. Today they are 1215! Finally we are recovering. It took longer this time and we had a couple of extra bumps but we are getting to the other side of this treatment. No fever last night or this morning. She had an accompanying headache with the fevers before. The headache is still there though and we will be getting something for that. They had done a CT of the head a couple days ago when the first headache showed up. Nothing there. I mean no bleeding or blood clots.