Returning Home

After a long and valiant fight, my eternal companion returned home to his Heavenly and Earthly Father on December 4th. He will be greatly missed. I am so greatful for all of the love and concern that has been given to us through the past year. I have come to know that Kurt was loved by many people. I know that he wanted to stay with us, but he has a much greater mission on the other side. Thanks again for all the help.

I left the hospital last night to get some sleep, since Kurt was doing better. I came back up this morning around 10:00 and he was not doing well at all. He had a breathing mask on and they were having a hard time waking up. The physical therapist was trying to exercise with him, but he was nor too cooperative. I tried to talk to him, but he couldn't get any words out just sounds. We met with the Doctor and he told us that the fungal infection is a like a cancer that is very aggressive and takes over very quickly. He told us that they could continue with the treatment and see if he has a rebound like he did yesterday, or we could stop treatment and let nature takes its course. We decided as a family to keep the treatment going for another 24 hours. As the day went on, he became worse and could not talk at all, his body was jerking a lot, and his breathing was very heavy. As the night went on he just seemed so agitated, and upset, so we decided that they would sedate him with pain medication to see if that helped. Around 9:00, he did seem to relax and was sleeping a little bit. This is so hard to watch. We even have had all of the hospital tell us what a great person he is and they just love him. The hospice nurse told us that this could end tonight, or go a few days. They still said there could be a miracle, so we are just praying that God has a plan for him and that we will be able to accept that plan, and know that he won't suffer anymore.
We are so appreciative to everyone, we have so many great family and friends. Thank you for all of your help and prayers.
Love, Cindee

Update

Wow, what a journey! Last night Kurt didn't say too much during the night, he woke up about 7:30 in the morning, but was saying weird things and I couldn't understand him very well. He stayed awake, and that was something he hadn't done for the last two days, he also was trying to get out of bed, and he seemed more alert. I asked him if he wanted something to eat, but he said no. But he did want to watch TV and even wanted his glasses. Later in the morning we saw the physicians assistant and she asked him some questions and he did well. He still is saying some things that don't make sense, but he looks better. Then she told us that the liver counts were looking better, and everything else was stable, they were surprised that the liver did better, because the medicine that they are giving him might of made the liver worse, so they were happy about that, and because he seems more alert they think the medicine is helping the infection. I don't want to get my hopes up, but I know that a small miracle has happened. They were not expecting the liver to do better, and I really think they thought this infection would take him quickly. We're still not out of the woods by far, but I don't think they expected this. So I will do a quick update everyday. Once again thanks for your prayers, I know that is why he is doing better.
Cindee

What a Shock!

Monday I got up to the hospital and Kurt had just come back from an MRI of the brain and CT scan of his lungs. He is still confused and so they wanted to check his brain. A little while later the PA came in and asked me to come and talk to the DR. I knew this wasn't going to be good. In a conference room she showed me the pictures of his lungs and read the report of the brain. She said it was bad. He has a fungal infection in his lungs and it is the bad kind. They also think that some of the infection has traveled up to his brain and causing the confusion and what they call mini strokes. They told me that it was a very hard infection to cure, and that they didn't know if they could fix it. She told me that I should call our families and have them come up. She did say that she wanted to confer with a infectious disease doc and an neurologist. Once all of our families got up there, the disease docs talked to us and said that there was one more drug they could use and see if that would help, but they said it was bad and didn't know if it would help. Everyone went in a couple at a time to talk to him, which he isn't doing much of. When Kelli took her kids in, he started to cry and said am I dying? It was so hard to see. We told him that he is very sick with a lung infection and they were going to try a new medicine to get it better. It was a very hard night for all of us, and I think he knew what was going on.
The disease docs said that it would take a few days to see if there was improvement. They also told us that his liver could get worse being on these meds. So my kids and I decided that we would try this new medicine and see if it would work on the infection. And they would check his liver everyday and if this didn't help, that we would take away the meds that he has been on for the transplant and Graft Versus Host disease, and that it wouldn't take long for him to go. This has been devastating to us as a family, and the bad thing is that Kurt asked the Dr. today if he was going to die? I'm so grateful to everyone for their prayers and help, right now we need to pray really hard that he gets better. I still can't believe what I heard yesterday, and I'm so sorry to tell all of you this way. I will keep you updated hopefully as soon as we know something. Thank you again.
Cindee

Still In The Hospital

Wow, how time flies by. We came to the clinic on Monday, and Kurt was in really bad pain. They admitted him, and they also found this week some infections, the bad one is in his lungs. They are treating him with anti-biotics. But they have also been giving him lots of pain meds for his back which they think is more of a muscle strain, and so he is not himself again. It's very hard to see him this way. He doesn't talk to me very much, and he says funny things again. Today I got up here and they told me that he was very defiant, he didn't want anyone to do anything to him. They gave him something to relax him, and then they were able to do some things. When I got here, I ordered him some food, and he ate some of it. They are starting to taper him off the pain meds, so hopefully soon he will come back again. They said his lungs sound better, and are slowly getting better. But his strength is very weak, because he hasn't been able to get up and around because of his back. I feel really bad about all of this, it seems, he has had several different things to deal with, and I hope sometime soon, he feels back to himself and can live a normal life! (One good thing, his hair is slowly coming back in)
I don't know how long he will be here, it depends on how long he is out of it. I will keep you posted as usual. Keep him in yours prayers and thank you again for everything. Thanks to all of my kids for all of their concern and help!
Cindee

Update

They did an MRI on Kurt today, he has a fractured vertabrae in his lower back. They said it's minor, but he is in a lot of pain. They are letting him rest today, and then tomorrow they will have to start working on getting him up and around. This is the accute problem and then they will work on the liver issue after they get this taken care of.
I think he will get a medal in heaven for all that he's been through! The poor guy has suffered a bit. The bad thing is that we will be here for Thanksgiving. Oh well the holidays just don't seem that important this year.
I will keep you posted, he might be here for a week or two. Thanks again for all of your support, it means a lot to both of us.
Cindee

I Knew It Wouldn't Take Long

Well maybe it's a good thing that I didn't write yesterday. We had to go to the hospital last Wednesday, and then on Friday. The liver counts were looking better on Friday. Then we had to go back on Saturday to check his platelets. He needed them so we were there for a few hours, but didn't have to go back until Monday. But after we got home from the hospital, he started to complain about his back hurting, and because they increased his steroids, he was becoming very weak. Sunday, his back was hurting more and still very weak. On Monday, we were suppose to be to the hospital at 8:45am, but after he went to the bathroom, he laid on the bed and I could not get him up. I had to call his brother Kerry to come and help me. We did get him into the car, and I drove him up. Then once we got there, we had to have some guys come help get him into the wheel chair. He was in extreme pain. They took some X-Rays and decided to admit him again into the hospital. Another discouraging day. They are going to try to do an MRI tomorrow, and see if they can see anything else. They hope it is just a muscle sprain. Then the liver counts went up again, so they might try a new medicine to get rid of the Graft Versus Host Disease. The poor guy can't get a break! I will keep you posted on new info, and if we get out for Thanksgiving.
Keep praying. I didn't realize how many bumps there would be. Thanks again.
Cindee

Back Home For Now

Kurt came home from the hospital last Tuesday. He has been doing very well at home. In fact, he said this is the best he has felt in a long time. On Friday we had to go back to the clinic to get his blood drawn and counts checked. On Monday, they had done a liver biopsy, and on Tuesday they did a bone marrow biopsy, the told us they would have some of the results on Friday. After they checked his counts, they told us that his bone marrow biopsy did not show any leukemia which was great news, but that his bone marrow is only about 20% full of cells. They said that this is seen with other patients, and that when you do a transplant that it takes about a full year for the new marrow to produce your own cells to 100%. Then they told us that the liver biopsy shows a lot of iron in it, this is because when you receive blood transfusions, there is a lot of iron that comes in the blood, and they have no way of separating it out, so it sometimes puts too much iron in the liver. They said later they can remove some of his blood and get the extra iron out. Then they told us that the Graft versus host disease is in his liver and so they need to increase the steroids again to get this under control. We are not happy about that. This will attack his muscles even more and make him more weak. But he is bound and determined to keep exercising and walking to keep the muscles he still has.
It is really good to see him doing better with his mind and attitude. He has even started working on our budgets again on the computer, and for you who know Kurt, this is what he really likes to do, make excel spreadsheets with numbers and track his money. So maybe he is getting back to normal that way, and the physical part will come later.
Thanks again for everything. We have had so many offers to help us, and so many who have taken care of our yard, brought meals, cards and phone calls. It is truly unbelievable to see how many people care about you. Keep praying for him and I know that he will soon be better. We have heard and seen others who have made it through this, and know that we can too.
Cindee

Still In The Hospital.

This has been an extremely hard week, but has gotten a little better. We came in last Sunday, because he was confused and not himself. The next few days were very hard to watch. He was not coherent. He did not make sense, and he kept repeating sayings over and over. The next day, he would just keep talking about a dream he had, and everyone that walked into his room, would be in his dream. He would keep saying it over and over again, and then he would try to explain to everyone, why he thought he was in the hospital. He started to come around on Wednesday afternoon, and started to remember some things. On Thursday, he wanted to know how and why he was in the hospital. He was starting to remember lots more now, but could not remember anything about the last 3-4 days in the hospital, which was a good thing.
Now he is doing well with his memory, and some things, but his liver counts continue to go up, so they are going to do a liver biopsy to check some things out. We are both very discouraged about this and not wanting this done. They will either do this Monday or Tuesday, so we are not sure when he will be able to come home.
I will do an update and let you know what they find out from the test.
Please keep praying for him, we are hoping that some medication is causing his liver to be going up, and they will be able to fix that easily.
Thanks again for everything.

You're not going to believe this again!

Yes he's back in the hospital, and I think they just need to commit us both. Friday night we were doing just fine, and after going to bed, he woke up about 1:30 in the morning saying some strange things. I kept asking him what was wrong, and he just told me that he didn't know, but he had to think about it. He kept forgetting things that he normally does like flush the toilet. I just thought he was having a bad dream or still really tired. Saturday morning he was still saying things that didn't make sense and forgetting things. Then he would get really mad, and then he would get really sad and say that he was sorry. I called the doctor, and he said it could just be the steriods that he has been on for so long. He told me to call tomorrow Sunday if it was worse. He slept through the night pretty good, just getting up to go to the bathroom, but seemed fine. But when I woke him up to eat, he wouldn't even respond to me. I hurried and called the hospital, and they said they should check him out. So once we got up here, they were admitting him and going to do an MRI. They did that, and the doctor came in and said that the MRI was good, there was no bleeding, and no infection. Now tomorrow they want to do a spinal tap and then they were already scheduled to do a ultrasound on his liver, so they will do that too. We are just having way too much fun this year.
Keep him in your prayers and I'm sure this will all work out. Hopefully my heart can withstand all of this as well.
As usual we will keep you posted.
Cindee

New Up-date

On Sunday, I went up to see Kurt and he wanted to shower, he stood in the shower for the first time in about two weeks. Then he walked around a couple of times around the halls, which he could not do last week, so we are happy that the blood has given him new energy. He has a heart monitor on all the time, and they really can't find anything wrong, which is good. On Monday morning they did stress test, and they still can't find anything wrong. They are thinking that his passing out was because his red blood counts were low and something still with the fluids in his body and that they are not keeping level. I got up there around 3:00 on Monday, and they were getting him ready to go home. We had to go up to the 7th floor to get a home heart monitor put on. They want him to wear one for a couple of weeks just to check his heart and make sure there is nothing wrong. We got home and he could actually walk up the stairs and into the house without passing out. It was good to see him walk again, and he said it felt really good to be able to do it.
We have to go back to check his counts on Thursday, his platelets still keep going down, hopefully we will be able to find out some answers on that soon. But from last week to this week, he is doing so much better.
Thanks again for family, friends, neighbors and all of the people that we both work with. It is so good to know that there is a lot of people that care about us.
We will keep you posted.
Cindee

This is one tough trial!

Well this past week has been another fun ride.(not) We had such a great weekend, and went to the clinic on Tuesday, he still was very weak and needed to rest a lot walking around. They checked his counts, and the liver counts are still high or about the same, so they are not improving as fast as we want them to. His platelets were 16,000 and normal is 140,000 to 400,000, so they wanted him to come back on Friday to get re-checked. On Wednesday, I thought it would be good to get him out and go to a movie during the day, we got a wheelchair and got him in there okay, and then he wanted to sit a little higher, so we climbed a few steps, and went he got in the seat, his head slumpped down and I had a hard time getting to come to. He finally started to respond, and he said he was okay to watch the movie, but I could tell that he wasn't having too much fun. Then on Thursday, I didn't have anyone to sit with him, so I stayed home, and he passed out walking, and fell before he could get to the couch. That night, when he would get up to use the bathroom, he could hardly get up without passing out. One time he really scared me, and I almost called an ambulance. But he came out of it and said that he just wanted to sleep.
Friday morning was really tough on him, he was extremely tired and we had a hard time getting him out to the car. We got up to the hospital and I went to get a mask for him, because I forgot his, and the nurse Jared said he would come help me with him. I got a wheelchair and when he got up and sat in the chair, he went out again. Jared came out just as he came out, and Kurt was not responding in anyway, and Jared could not find a pulse. He was yelling at Kurt and then told me to go get another nurse, by the time we got back out to them, Jared was wheeling him in really fast, and Kurt had come to a little. They got him in a room and started taking his blood pressure. By this time Kurt was talking and doing better. They started giving him fluids and did his counts. After they got the results, they told us his platelets were 9,000, and they were going to give him platelets and also give him some blood to raise that up as well. They also told us something we didn't want to hear, that they were going to admit him into the hospital and check his heart.
We got in our room and I went home to get some things for him, when I got back, there was a cardiologist in his room asking him questions. They asked me several questions as well. They did an EKG and said that there were a couple of things that they saw. The next day the cardiologist came in and asked more questions, and thought maybe that he could have a clogged artery. They want to do a stess test on Monday, and hopefully if that goes well, they might let him come home that day.
They have given him platelets and 4 bags of blood. He is doing much better, and has been walking around without passing out. They're not sure if he has a volume problem, and that put stress on his heart, or if there is a problem with the heart. We should find out tomorrow.
It's strange how he has some problems, but then he seems to get through them pretty quick. Hopefully all will go well, and he will be able to come home tomorrow.
We will keep you updated.
Cindee

What a Beautiful Weekend!

Wow this week we have still been on the roller coaster! (an emotional one that is).
Kurt had still been very lightheaded and was going out most of the way or all of the way quite often. We went to the clinic on Tuesday, and they told us that his liver counts were slightly down again. They told us his platelets were also down, but the liver counts we want down, and the platelets we want to go up, I know it's so confusing! They wanted us to come back to the clinic on Friday to check his platelets again. Wednesday and Thursday were very discouraging for us. Kurt could hardly stand up without having to sit back down, and if he did start walking he can only go a few steps before having to sit again. We were worried about this as well, so I called the cardiologist that we had seen a couple of times and asked if there was something he could do for this. He wanted to see Kurt, so we arranged for him to come down to the clinic to see Kurt on Friday. He did a ultrasound on his heart again, and told us that his heart is working well, the heart muscle is still a little thick, but probably because of not getting much exercise due to his weakness from the steroids. He said that passing out was not life threatning to Kurt, but just annoying. He told Kurt to exercise as much as he could, and also to eat as much sodium as he wanted. So now everything I can't eat, because I have high blood pressure, Kurt can have all he wants. I think seeing the heart doctor and hearing what he said helped Kurt feel a little better, in fact that night we went to Texas Roadhouse and got our dinner in about 20 minutes and just ate in the car. It was great for us to be on a date and it was much quieter than being in the restuarant. Then on Saturday, we drove up to DayBreak lake and sat on our chairs fairly close to the car and ate a picnic. Ryan and Cher came over and helped with some things in the yard, so Kurt was able to see the boys from far away. On Sunday we went for a ride up the canyon to see the leaves and take some pictures for Kelli of her family, so he was also able to see her kids, and that was great for him. I think getting out of the house and being somewhat normal has really lifted his spirits. So it has been a great weekend and we are trying to do what we can to make things a little more normal. Hopefully they will start decreasing the steroids this next week, and that would make us both a lot happier.
Thanks again for the calls and love from everyone. This is going to go up and down for a long time, but I do see that he is improving. We really appreciate all that has been done for us. Thanks again!
Cindee

Another Week Done

This past week has had some ups and downs again. We went to the clinic last Tuesday, and Kurt's liver counts were high. They told him it could be the GVHD and that they were concerned. They increased his steroids again, which we were not too excited about, and told us to come back on Friday to see if they were still going up. It was discouraging that day, because we were hoping that they would start decreasing his steroids. He also has been getting weaker in his legs, which is due to the steroids, and getting more lightheaded. So he has a hard time walking into the hospital. We went back on Friday, and he was very lightheaded that day. The nurse that was taking care of him didn't realize that he has been this way for awile and that they are trying to solve the problem, so she got all excited and told the PA. The PA did come in quickly that day, and was very concerned about Kurt, but I told him that this has been going on for a few weeks now. I don't understand why if we are going to see different PA's all of the time, that they don't know what's been going on. So he had the nurse take all of these blood cultures, so of course we had to sit around and wait until the tests came back. We were up there for 4 hours. At first the PA told us that his liver levels had gone up. Then one of the 5 big doctors came in and was asking Kurt how he was doing, and told us that the liver levels and slightly gone down. We were not very happy about this whole day. He did say that his platelets were down, and that could be due to the GVHD, so he wanted us to come back on Sunday to get those checked again. It's very tiring to keep going back up there, especially when they always want us to come in the morning, and Kurt has a hard time in the morning, that's when he usually likes to sleep.
So this morning we went back to the hospital, and had to go up to the 8th floor, because the clinic is closed on the weekends. They are usually quick and nice to see. He did get weak again, but I had him in a wheelchair, so it was better. The nurse had gotten the results back in about 30 minutes and told us that we could go home, and just come back for our regular visit on Tuesday. At least we don't have to be there as early, so hopefully it will be better.
Even though this is up and down, I can see an improvement in him from a few weeks ago. He is awake more, wants to eat more and is really trying to regain his strength. He has started to walk on our treadmill a few minutes each day. It's good to see some things improve, and I'm sure in time he will keep improving and finally feel good again.
Thanks again for your concern, we know that we are being blessed not only from the doctors care, but from our Heavenly Father, and all of your prayers. We appreciate our families so much with all of their help right now, and by getting Kurt better will be how we can pay them back.
Cindee

A Pretty Good Week Until....

Well, last Saturday, Kurt came home from the hospital. He was feeling pretty good the next couple of days. He went to the clinic on Tuesday, and they told him that he was a A student. They told him that nobody in his condition gets out of the hospital in one day. He was actually doing really well, they told him that he was still fragile and to keep watching him. They told us that we could wait a week before we came in again, unless something changed at home, and then we were to call them.
It was his best week since the transplant, although he doesn't feel that way, because when he feels okay, then he gets down because of all the normal things he can't do. But it was great to see him up more and working on our bills, which has been a great help to me, I'm not to much into doing those. Then on Friday, I ran to the store to get something for the swamp cooler, and I went to a couple of other stores. As I was about to come home, he called and said that he had an accident. I could hear his voice shaking, and I became really worried. He told me that he had slipped down our stairs. He said he was feeling pretty good and wanted to warm up his muscles, so we could go for a walk outside later.I asked him what happened and he told me that he had some rug burns on his leg. I was freaking out, and upset that I wasn't home when he had done this. I got home quickly, and on his thigh was a really big area that was burned and very red. He also had a little one by his knee and ankle. He wouldn't let me call the hospital, so I tried to clean it off, and he moaned that it was killing him, so I put some neosporin and a gauze bandage. We keep checking every day to make sure it's not getting infected. Needless to say, the next day he was sore and did not feel like walking around much.
Today, Sunday, I think he is feeling a little better, he tackled the stairs again, but I was in front of him, to make sure he was taking it slow. We go back to the doctor on Tuesday, so we will see what they say and do about it.
It is great to see him improving slowly, even if he doesn't think so. He is talking better, awake more often, and his spirit seems to be getting better too.
We are so happy and grateful for everyone still calling, helping out around our house. There is no way we could do this alone, even though it's hard to accept help. We hope that one day we can be of service or cheer someone up, that needs it.
Thanks again to everyone!
Cindee

Another Bump and Ended Up In The Hospital!

While I was posting the last blog on Friday, Kurt had not been feeling well all day. Then around 5:30 pm he started to throw-up and kept doing several times. I called the hospital around 8:00 to see how to give him his night meds and keep them down. They decided that they should see Kurt tonight. So Kurt was not happy that I had called, but he was really sick. By the time we got ready, and I never know how long he will stay, so I packed some of his things we got to the hospital around 9:30 pm. They had to come and get him in a wheelchair, because he was so weak. I took our things up to the room, and they were admitting him. They gave him IV nausea medicine and then started giving him fluids, because his blood pressure was low and he was dehydrated. I decided to spend the night because he is still suppose to have 24/7 care and I knew that the nurses couldn't sit in there all night. The new rooms do have a chair that folds out to a bed, and I actually slept a little. Kurt took some ambien to help him, and he slept too, in between going to the bathroom and the nurses coming in during the night.
They came in the morning and told us that his counts looked pretty good, and his nausea was much better and after only having 1 IV nausea for the whole night. They told him to eat some breakfast and see if he could keep it down and not get sick. The PA told him that he might get to go home later. So he ate, had another chest X-Ray, (I think they are really watching for H1N1 in these patients) and then by the time they decided he could go home, they wanted him to eat some lunch and keep it down. We told them that we needed to be home by 4:00 to watch the BYU game. The PA being a UTE fan told him if he was going to go home to watch the game, that she wouldn't let him go home. He didn't think she was very funny.
Around 4:00 after they had given him all his meds, he was let go. We listened to the game on the way home, and then watched the rest at home. It was really nice to have to stay only one night.
They did tell us that this process takes a long time and that we will probably have to go back in at some time in the future. We're going to try our hardest to not let that happen. They also started him on another IV, so now I get to give him meds all day long. I really think I should become a nurse!
Cindee

I Don't Think We Knew What We Were In For!

If anyone has known someone who has gone through a bone marrow transplant, please let us know. We were not expecting this at all. I think they can tell you things, but until you're going through it, you just don't know what it's like. I need to talk to someone, and find out if this is normal.
They are having him come weekly to the clinic, because he is taking steroids, it makes his muscles very weak, so he has not been moving too much this past week. Yesterday we had to go to the clinic, and it was hard for him to walk in. Then we were there for a couple of hours waiting for them to come and talk to us. After that we had to go see the cardiologist, to follow-up with his low blood pressure. He told us that he thought things were fine and that we could come and see him on a as needed basis. So by the time we got done, he was exhausted. We had to get a wheelchair to take him out to the car. Needless to say, he rested the remainder of the day and night. Ususally the day after is hard on him, because he is so tired from the clinic, so today has been the same, but a little worse, he has been very nauseated and threw up a couple of times.
It is very frustrating for us. He does okay some of the time, but most of the time he feels miserable! The doctor did say that this is all normal, that it will take some time(months) before he feels better, and that this is a very bumpy road, and also to expect to be admitted to the hospital at least once during recovery. We were very discouraged after yesterday.
So if anyone can tell us that what we are going through is what we should expect, please let us know. We just need someone to tell us that it does get better.
We still are taking one day at a time, and are grateful for all of the help and concern from everyone. We have a great family, and great friends in our lives. We know that we just have to keep having faith that he will soon get feeling better again. Thank you for everything.
Cindee

Doctors!

Wow this week has been eventful. We have not only been to the Bone Marrow Clinic 3 days out of 5, but he has also seen a urologist, and a cardiologist. He has been getting up a lot at night to go to the bathroom, so the urologist started him on a another pill, but that one also made him extremely dizzy, to where he couldn't stand up very well without feeling like he was going to fall, and one morning he did fall. So we stopped taking that pill. Then the doctors thought he should see a cardiologist to help regulate his blood pressure, it keeps going very low at times and makes him very lightheaded. So we saw him and he didn't want Kurt to take anything else, because of all the side effects, and he thinks he has enough to deal with right now. So nothing was really fixed, and they said we would just have to take it a day at a time and see if things get better. When his blood pressure has been low, the bone marrow doctors loaded him up on IV fluids, and it seems to help. So now every day, I have to give him fluids through his central ports which takes about 1 1/2 hours, and also magnesium, which takes about 5-6 hours, then I have to flush the lines out and fill them with heparin. Besides all of this, there is the blood sugar checks and insulin shots, because of the steroids, he has steroid induced diabetes, and all of the medications to keep track of. I can't believe I'm doing all of these things without a nursing degree. I just might change vocations once this is all done.
They still say he is doing well, most people are just getting out of the hospital right now, and he has been home for 2 1/2 weeks! They told us his counts are very good, and in time he will get better. Everyday is different, some days are better than others. We just keep hanging in there, and know that it will get better someday. Thanks again for your concern.
Cindee

It's so great to have him home!

Since last week, things have gotten a little better, except for the fact that he started getting a rash on his arms, the PA said that it was Graft versus Host disease. This is where the body starts to reject the new marrow, they have told us that a little of this disease is good, because it shows that the body is working to accept and make the marrow work. They also told us that it ensures that the Luekemia won't come back. So we're not too worried about this. It can effect the skin, eyes and liver. They have increased his steroids to see if they can get rid of it. Over the weekend it hasn't started going away, but has spread over his whole body. We go into the clinic tomorrow, so hopefully they can do something different. Besides that, this past few days have been better. He went to the clinic last Wednesday, and they told him this will take awhile for him to feel better. They also told him to exercise as much as possilbe, because the steroids will make his muscles very weak. After coming home he decided to walk up and down the stairs a couple of times. Then the next day, he did a few more times and we went for a walk at a park. He has been doing more each day, and walking in the park each day. I hope the weather permits us to keep doing this, I think it is good for him to get out of the house, although home is much better than the hospital.
He has also been awake more during the day, than last week. I think things are slowly progressing for the better. He actually looks great to me. He is eating well and talking more, he has a hard time sleeping at night, this might be because of the steroids too. Gotta love all the meds and their side effects!
I am very grateful that he is doing so well. He opened a fortune cookie and his read, that his current plans will succeed within the year. I don't usually believe these, but this one I do. I know we have been so blessed and continue to be blessed. Thank you again for your concern, thoughts, and prayers.
Cindee

Another Roller Coaster!

Wow, if we had known what this was going to be like, we might not of done it. Kurt did pretty good after the transplant, especially with his blood counts coming back so fast, and they did let him out of the hospital early. But now he does not feel good at all. We read on an internet site, that people experience flu like syptoms for several weeks, and they are so weak and tired that all they can do is eat some, walk around the house a little and sleep. He does pretty good with the sleeping, but during the day, the nights he seems to have to go to the bathroom all night long, therefore we're not sleeping too much during the night. He has been dehydrated a couple of times, needed platelets a few times, been nauseated, lightheaded, and just wants to sleep. Hopefully in a couple of weeks, he will start to feel better. Please keep him in your prayers. Thanks again for everything.
Cindee

Today' the Day!

Well they are letting him come home today. He has done extremely well. The bone marrow started producing new cells on about day 10- day 12. Normally it doesn't start until day 14-day 21. We are so excited that this is all behind us. Now we just have to keep checking to see if his body starts rejecting the new marrow. That can happen up to a few months. Hopefully everything is going to be okay. We have also been told that most people experience some infections or complications, requiring them to be admitted back to the hospital, even though we will not be happy about this, they can take care of him, and hopefully it won't be too long. It has been an amazing process and we have experienced so many emotions, but now we can say that a small miracle has happened, and we are so grateful to the person who donated his marrow, it is truly a sacrifice that we are so appreciative for. The doctors and nurses up at LDS hospital are so caring and knowlegable. We have made many new friends because of this trial. We are so grateful for the blessings that we have received this year. Please keep praying for Kurt, I know that this road will still be a little longer and we will just keep our faith and hope alive for a complete recovery. Thank you again for everything!

Still Here, but hopefully not for long!

It's been a little up and down this past week. Kurt has been through a lot. Last week he started to get sores in his mouth from the radiation, and they got pretty bad. He was put on pain medication and along with all of the other meds, his counts being nothing, and the transplant, he was really out of it, in pain, and a little loopy, he was also given food supplement through his IV. He doesn't remember and he doesn't believe us. But then he became a little clearer, and started doing better, but got pnemonia, a gut infection, and an infection in his line. This week his counts started to come back up, and they actually told us that the new bone marrow was producing new cells. They said that is pretty early to start, espcially with a unrelated marrow and not just the blood cells. It usually takes about 14-21 days to see that, but his started in about 9-10 days. They say he is doing really well. They even said that he may get to come home Friday this week, or next Monday or Tuesday. We can't believe it,last night he had another bad night, because the gut infection makes him go to the bathroom a lot, and he was just getting very discouraged from being sick, so I came up all day to help him today he slept most of the morning. He woke up around 2:00, showered, ate lunch, and wanted to go for a walk, I think he's bound and determined to get out of here. It would be nice to have him come home, but I was not expecting this. So today, Kelli, Cher, Ryan, my sister Kristy, and my mom came and cleaned the whole house, so now I think it's ready for him to come home.
I know that this has been a small miracle and that Heavenly Father has been with us all the way, and has blessed us so many ways and so many times. I'm so grateful for Preisthood blessings, and wonderful doctors and nurses, they have taken such good care of him. I just want to thank everyone at this time for everything. We could not have done it without your concern, help and prayers. Thank you so much!
Kurt and Cindee

Here we go again!

Kurt has done well the past two weeks, but a couple of days ago, he started to feel the effects of the radiation. He started with a sore throat, and then they found a sore on the thing that hangs down your throat (I'm not going to try to spell it). It has gotten worse every day, so bad that they are giving him lots of pain meds, and today he has slept most of the day. Maybe that's a good thing, so he doesn't feel it so much. He is having a hard time eating, drinking, and now getting up because of the meds. It's hard to watch, I thought maybe this time around, he would sail through it. They told us that it would take a week, or week and a half for the counts to start coming back up. So I don't think he is going to feel better for awhile. Hopefully this doesn't last too long, and he can get back to walking and eating. Thanks again for your prayers and help. I know we will get through this just like we did at first. Oh, and his hair was starting to fall out, so we buzzed him yesterday. I will take a picture and post it, I think he looks good.
I will keep you updated.
Cindee

It finally happened!

Yesterday the 12th, We were told at 5:00 pm that the marrow was on it's way, and would arrive in a couple of hours. We were a little anxious, but very excited. Once it got there, they send it to the U of U lab and they have to do some things to it. Today the 13th, was the big day or in other words his "2nd Birthday". I got to the hospital around 1:30, and they were to do the transplant at 2:00, but they said they were behind. The lab brought them into his room around 2:50 and we waited until 3:20 for the nurse to come in and get started. Finally everything was hooked up and they started. It was bright red and just ran into him through his central line in his chest. They kept checking his vitals and he did well. By the time I left tonight he was a little nauseated. This next few weeks might be the difficult time. He could get flu like symptoms, such as vomiting, diarrhea, fevers and tired. So we will just take one day at a time. We are so grateful for his donor. We wrote him a card today to thank him, we have to give it to our coordinator, she will get it to the registry, and they will get it to the donor. He did it the hard way, so I'm sure he is sore today, and will be for a few days, but we appreciate his kindness. It is amazing that a 21 year old would do this for a complete stranger. I know now that I would do this for someone also. Thanks again to everyone for your concern, we really appreciate your friendship and all that has been done for us.
I don't know how to edit the pictures, so you get to see big pictures!

We've started the process!

Last Tuesday, Kurt was admitted into the hospital. He also started total body radiation that day. He has one more to go tomorrow, and then 2 days of chemo. Wednesday they will harvest the marrow from a 21 year old male from Europe. Then they will fly it from Europe that same day and they will transfuse it into Kurt on Thursday the 13th.
He has done very well so far. Just a little nausea and a little tired. I'm sure the chemo will knock him down some more, and also his blood counts will soon start going down. We are just taking one day at a time and dealing with whatever comes along. I will update next week after the marrow has been put into him.
Not too much more to report, he doesn't know how he is going to stay there that long, but I think it will go faster as we get more into it. Thanks again for your concern and prayers. We know we are being blessed.
Look at all my hair! It won't be around very long.

Good news again!

Kurt went to the hospital today to get his liver checked, the levels had come down enough that they are going to start the transplant (YEA)! So tomorrow he has to go and get a shot to protect his mouth from getting sores in it during the radiation, then on Sunday another shot for the same, and Monday a shot and they will do a minor procedure to put in a central line into his chest and take out the pic line in his arm. Then on Tuesday back to his second home for radiation for 6 days, and chemo for 2. He will rest on August 12th, and then on August 13th, he will get the marrow from a 21 year old from Europe. That's all we know about him, but he is as perfect as a match that they could of found, except for his age. Then the hard part, we will be apart for about 4-6 weeks, and then he will have to be watched at home for another month. We're getting very apprehensive about this, but very excited to get on with our lives and hope that they will be as normal as possible.
Thanks again for everything. We really appreciate the kindness shown by everyone. We know that Heavenly Father has blessed us in so many ways, and that I think he is trying to teach us patience, because we are not very patient people. We have become closer and our testimonies have grown too.
Cindee

This is one crazy ride!

It's has been a long time since I wrote. Kurt got out of the hospital from the
e-coli infection. and his counts started to go back up. He started to get back on his feet again. We took a little getaway to Park City last weekend. He did fairly well, but got tired. It was an interesting weekend, but a too long of a story to tell. We had a good time.
I haven't mentioned that he was going to start the transplant process on July 27th, because of the last time with the other donor, I didn't want to jinx it, but it has been jinxed. Yesterday we went to meet with the doctors and sign the papers, everything sounded great and looked good with Kurt and the donor. So it was a good day. They did tell us that Kurt's liver counts were elevated and they wanted to take some blood and do another check. We went home and felt pretty good about everything. Then today the hospital called and told Kurt to come up if he could, because his liver counts were higher, so they wanted us to talk to a GI doctor. He told us that it could be the medications, so they took more blood again today. He called back this afternoon, and told us they had gone down a tiny bit. So we will go in Saturday and have blood drawn again and wait for the counts to come back, and then they will decide if we start the process this week of postpone for a couple of weeks. This is extremely messing with our minds. We are going to have a family fast this Sunday, so hopefully evetything will go as scheduled and Kurt will be able to start the transplant. I will let you know when we find out a decision. Thanks again for your concern and friendship.
Cindee

Little hospital stay

Sorry it's been awhile since I've written. Kurt came home from the 3rd round of consolidation chemo on June 22nd. That week we started going back and forth to the clinic to get his counts tested and get transfusions of blood and platelets. During this time we try to be very careful as to not let him get around people and get sick. But try as hard as we may, his temperature started going up on Friday the 3rd, and by that night it had gone higher, so I decided to call against Kurt's pleas not to. They said we better come in and have it checked. We got up there around 11:00 pm and they admitted him and started to take blood cultures. They said he would probably be there until Sunday, because it takes that long to grow the cultures. Needless to say, Kurt and I were very upset about staying. Saturday afternoon, we talked to one of the PA's and she said that they had found an infection and they wouldn't know exactly what it was for a couple of days. They told us that he would have to stay in until his counts came up and he could fight the infection better on his own. Now we were both very down, because we had no idea how long that would take. The 4th of July was not too great. Kurt was not feeling too good, and was tired that night, so I went with Kelli and her family to Riverton (and I think with everyone else in Salt Lake City) to see the fireworks. It was fun, but I felt bad that Kurt was in the hospital.
He started slowly getting better, and Wednesday, the 8th, he did get to come home. So it wasn't too bad. Now we go back on Friday to get his counts tested again, and hopefully they are starting to come back up this week and we will be able to do some fun things while he feels good, and hopefully he doesn't get sick soon again. Oh they did find out what the infection was, it was E-coli, and they told us it was good he got in there that soon, becuase with his counts being almost nothing, he would of gotten very sick, very fast. Although he still hasn't thanked me for calling and putting him in the hospital, I think he's grateful that I did, and that he got better so quickly.
Thanks again for all of your thoughts, prayers, cards, and concern.
Kurt & Cindee

Home again home again!

Kurt has completed the 3rd round of consolidation chemo, and came home on Monday of this week. He is doing quite well, but we are a little discouraged. They still have not found another donor, and they will only give him one more consolidation round of chemo. So if they do get a donor soon, he will start the transplant process in mid-July, and if not they will do the 4th and final round of consolidation chemo, and then we will have to talk to the doctors and make some decisions, and we really don't know what our options would be. We are getting a little nervous, because the time seems to be going faster and we cannot find a donor. They said it usually doesn't take this long to find one, but we're thinking that it is summer and everyone probably has plans. So keep praying that they will find one soon.
Other than that, he hasn't lost his hair from the consolidation treatments, and it is growing in pretty good. But if when they do the transplant he will get radiation and chemo, and I'm sure it will fall out again. Now we just go to the hospital and get the counts checked frequently for the next week and a half, and wait for the counts to come back up, and then maybe we can do something fun again.
Thanks again for your concern and support. Hopefully the next time I write it will be something positive about the transplant.

Bone Marrow Registry

If anyone is interested in signing up for the registry, I went on the Bone Marrow Transplant Registry web site yesterday and saw that you can sign up online for free now until June 22, 09, I can't believe they would charge someone to sign up, but on the site it said that it costs $100 for the registry to process each applicant. I just went to ask.com and typed in the question box bone marrow transplant registry. It look me to the web site, and it looks like you have to fill out an application and have them mail a kit to you. All they need is a swipe of the inside of your cheek. Just thought I would let everyone know, since so many have asked about it. Thanks.

Another set back.

Tuesday the 9th, Kurt had to go to talk to several people regarding the transplant. The most important one was the radiologist and get x-rays and ct scan to measure his lungs so they can make blocks or samples of his lungs. They hang this in front and back when they shoot radiation to his whole body. Then we talked to a dietician, a pharmacist, and the financial person. We were there from 9:00 to 2:00, we had a lot of fun (ha ha). Then we were suppose to go back Friday the 12th, to have a family conference with the Head Dr. But Kurt got a call yesterday from Rachael our coordinator, telling us that the registry had called and told the hospital that the 40ish old donor was not capatible for some reason or another, but they can't tell us the reason, they don't even know. So now we have to do another chemo process like the last two that we did, he goes in on Wednesday the 16th and stays for 6 days, then we wait for the counts to go down, then they have to go back up. They told Kurt that they are going back to the first donor that is 21 and see if he will be able to do it around mid July. Kurt is a little discouraged and was wanting to start the transplant process and get it over with, but it is out of our control and so we do what they tell us and go on.
I know that things happen for a reason and hopefully someday we will know all of the reasons for everything that has happened. It still gets a little frustrating, but we will keep having faith that Heavenly Father knows what we can handle and we know he is looking over us. Thanks again for your support and love.

Almost normal weekend!

Last Thursday, Kurt was a little sluggish, so we called the hospital and got him in on Friday to get some juice, or blood to give him some energy. We got done on Friday around 3:00 and went home to get things packed, yes packed not for the hospital but for Logan. We left around 5:00 and stopped at Ryan & Cher's in Roy to see some new things they had done with their home, and then they were nice enough to feed us. It was fun to be in another place besides our home and the hospital and play with his 3 boys. Then we left around 8:00 and headed up to Logan, to see Chad & Chelsea's new apartment. We were staying with Chad and Chelsea. We just talked that night, and decided that the guys would try fishing in the morning since it was free fishing day in Utah. The next morning we slept in and ate breakfast, Ryan's family came up about 10:00, and they got ready to go to 1st Dam. It's not too far from Chad's apartment, so it only takes about 5 mins to get there. Chelsea and I got ready while Cher took the boys over to the park across from their place. Then we went grocery shopping and picked up some things for lunch and a barbecue for later that night. We went up to
1st Dam and had lunch with they guys. Kurt was a little tired. It takes some energy to get into his float tube and then back out again. After lunch Chelsea wanted to go shopping, so the boys decided to take Kurt golfing with a cart of course, and the girls and kids went shopping. I was exhausted that day as well, haven't shopped that much in a long time, but it was fun. We got back to Chad's and the men still hadn't come back. They came soon and we started the dinner. Kurt had a great time, but was tired and sore from using muscles he hadn't in a long time. Ryan and Cher left around 9:00, and we stayed at Chad's that night again. Sunday, I went to Church with Chad and Chelsea. We left around 1:00 that day to go home and have a birthday party for Dalton who turned 7 on Saturday. He got to go to the party, and so it was a great weekend. Now this week we have to go to the hospital on Tuesday and Friday for most of the day to consult with several people and have some more tests done. At least he doesn't have to stay in.
Hopefully this week we will have a great time before he goes in for the transplant.

Well now the fun begins!

Kurt has been home for two weeks, after getting home from the hospital on Monday May 18, that afternoon, he started with a scratchy troat and cough. He thought it was maybe allergies, but it was a cold. He had to go to the hospital on Wednesday and Friday that week, so they were keeping a check on him, they gave him a x-ray on his chest but it was clear. He just got rest and it took about a week to feel better, then just when he was getting better, I got the same thing, so we were trying to not get too close to not get him sick again. It has been a horrible week, because I thought I would get better in a few days, but I got worse, I went to the dr on Saturday the 30th, and had a sinus infection, got a anti-biotic and I think today I feel a little better. But the whole week when I'm around him I have been wearing a mask, washing my hands every 5 mins, cleaning off everything I touch and he has to get everything for himself. It's been frustrating, knowing that he will be going into the hospital soon and both being sick is not fun!
We were told that they had chosen a donor a couple of weeks ago. He was a 21 yr old male, and he was a great match. Then the next week they told us that the kid could not do it all summer. The next week we were told that there was another match that was around 40 and a good match but not as good as the first one, but they have heard back from him and he can do it on June 27th. So now Kurt and the donor have to do some tests and make sure everything checks out for the process to happen. Kurt got a call from the hospital today, they are starting Wednesday the 3rd with the preliminary tests for Kurt. They have to check out his heart, his lungs, his kidneys, and liver. Also they decided since he did so well with the chemo, they are going to give him the strongest form of radiation and chemo right before the transplant. So they have to give him shots and a radiation trial run before they start the real thing. Then they are going to admit him June 18th to start the chemo and then the transplant around the 30th. He's so excited today, not!!!
We are going to try to enjoy his time at home right now in between all the doctors and tests and hopefully do some fun things before all of this starts. I have read a little and I know we have a few months ahead of us that will be very difficult, and we are not looking forward to it at all.
Wow how your life can change and turn around so quickly, but we have received many blessings the last couple of months. We have had some great times together, it's funny how things like this really make you realize what your priorities are in life and how things we use to worry about don't seem to matter at all right now. Thank you again for your help and support. We know that we have a great family and so many good friends. Keep Kurt in your prayers, I think he will need them now more than ever. Thank you again.

3rd round done!

Kurt completed his 3rd round of chemo today. He was able to come home about 12:30 today. It was good to come home from work, instead of driving to the hospital and sitting there all night. Kurt has done so well with the treatments, that even he has been very bored there, but I guess that is a good thing.
They told us that they chose a donor. He is a 21 year old male, and matches really well. We won't be able to find out who he is or where he is from for a year, that is if he chooses to let us know who he is. We are so amazed that a kid would sign up for this and has already sent in his blood sample. What a blessing to know there are people out there that still want to help others. I know after this experience I will probably sign up for the registry. They will have to do some testing to make sure he is healthy and then Kurt will have to have some testing to make sure that he can go through this, so it looks like the process can start in about 4 weeks. It will be good to get started and done.
Kurt will try to stay at home again like the after the 2nd chemo, we just have to start going to the hospital this Friday to check his counts. We will probably have to go up almost every day for a week, but better that than to put him in for another week.
We will keep everyone posted with any new news. Thanks for your great friendship.

Back in again.(yuck!!!)

Well after over 3 weeks at home, Kurt had to go back today to do another round of consolidation chemo. His counts came back and it is time they said to do another round. We did find out more info regarding the donor for the transplant. They have requested four samples, and they do a 10 point check on the chromosones, hence the test on Kurt's chromosones earlier, and they found his to be unfavorable, so that is why he needs the transplant. They have a couple of people with 10 out of 10, but one person won't be available for awhile, the third was 9 out of 10, and the last one they are almost done with testing. They think the last one will also be a 10 out of 10, so now they will look at those 2 10 out of 10's and decide which one is the best. They said that this round of chemo will take about a month to go through the cycle, and the transplant if everything goes well will happen around the end of June. He will be in the hospital for about 4-6 weeks and then hopefully if all goes well, he will go home after, and then have to be watched carefully for a few months. We both enjoyed him being home, his counts were so good, that yesterday we went to a movie in the afternoon, when there wasn't very many people there. It was fun to go on a date again.
So keep him in your prayers again, that this chemo round will go smooth and he will get to come home again in 6 days. Thanks again for your support and concern, we have many good friends and family!

Still loving Home!

For the past week that Kurt's blood counts have been going down, we have been so blessed to still be at home. We have had to drive to the hospital everyday except Wednesday, to check his counts, he had to have a transfusion of platelets on Thursday. Friday he had a short physical with one of the PA's and he was told he was doing great. Then on Saturday and Sunday morning we drove up to the hospital and the counts were okay and starting to come up on their own, so we didn't have to wait too long and we were sent home. It was good, because on Saturday, I was going with my parents to Logan to see Chelsea our daughter in-law graduate from Utah State. It was hard to leave Kurt at home, but he cannot be around a group of people especially in a closed in area. It was a nice day, but long to be away from home and Kurt. We had a nice dinner at Chelsea's parents home and then on the way home, we stopped to see Ryan and Cher in Roy. Kurt did great at home, but wished he could have gone to support Chelsea. Congrats Chelsea!
This next week he will probably get to stay at home unless a fever or he gets sick. We are doing everything not to let him get sick. Then once his counts are up to normal, he will have to go in and do another round of consolidation chemo like the last time, and be in the hospital for about 6 days, and then hopefully get to come home for another 3 weeks. They are testing 4 blood samples right now for a match. They requested 6 donors and have 4 blood samples now. Once they have a couple of good matches, they will request the donor's marrow, and that is a process that requires the donor to mabye take a day off of work, so we have to be on their time schedule, and Kurt's counts have to be near normal in order to start the transplant process. Once everything is ready, they have to give Kurt extensive chemo and once the counts are down again, they will start the transplant. He will be in the hospital for 4-6 weeks at this time, in order for the whole process to work. Then at home he will need another few months of close monitoring. We are just ready to get on with it, and get this year over with!
Thanks again for everyone and their help. We really appreciate everything.

Kurt is still doing well at home!

This week is when the last chemo treatment starts to do it's magic, kills all cells good and hopefully bad. They gave us the choice to stay at home and come in every other day or daily if needed, or be admitted to the hospital. We are trying the home choice, since Kurt thinks he overstayed his welcome the first hospital stay. We came last Thursday for a shot, Saturday for some platelets and that stay was only for a couple of hours, then on Monday we came in at 8:30 and he needed platelets, and two units of blood. The poor guy was there until 4:30, but got to go home, so one day is better than staying in the hospital. After staying all day they tested his counts again, and his platelets did not go up very high, so they wanted us to come back today. When we got here, he needed platelets, but they didn't have them ready, they had to order them from the Red Cross, so we got here at 8:15, and didn't leave until 12:00, still better than staying in the hospital. We will probably have to come back a few more times. They said his good cells should start producing around this Sunday. Then we will wait another week or so, and maybe the donor will have given the marrow, or he will have to have another round of the consolidation chemo. I will keep you posted.
Thanks again to everyone for your concern and prayers. We know that he has been very blessed and will continue to be blessed.

We feel a little normal right now.

Last Sunday the 19th, Kurt was able to leave the hospital after the consolidation round of chemo. He did pretty well considering they put posion into his body. During the week he was able to stay home by himself while I went to work during the day. He loved being home and I loved just getting to go home after work and be with him! On Thursday the 23, he had to come up to the hospital to get his blood work done to check his counts. They were still good and he didn't need any transfusions. They gave him a shot of something to help his blood counts come back faster, and we got to take him back home. They told us to come back Saturday, the 25th at 10:00 am.
Well we are here at the hospital, and they said his platelets are low, but the other counts are good. We had to sit here for about an hour and he had a transfusion of platelets and they are letting us go home for the weekend. We have to come back Monday morning and check him in. So I will keep you posted on what goes on next week.

Home again.

Today was the last chemo treatment of the first consolidation round. He had 2 hours last night and 2 hours this morning at 6:00am. I got up to the hospital around 11:00am and he was a little nauseated. They told us the doctor wanted to come in and check on him before they let him go. We left around 12:00 and got home around 12:30.
We are both excited to be here, but it won't last too long. We have to go back in on Thursday and have blood tests to see where his counts are, and then they might admit him or let him go home for a day or two. When the counts are really low, they will admit him and may have to do tranfusions and platlets to get his counts to come up again. After they are good he will get to come home for a week or two and then hopefully they will have a donor and be ready to transplant. If not they will have to do another consolidation round of chemo again and be ready again for the transplant. In order to do the transplant, they have to have this chemo process to kill the last of the leukemia cells and then get the good cells to come up to normal and then they can do the transplant. So we just have to be patient for the right time and know that Heavenly Father is watching over us and the right thing will happen. I am so grateful that things have gone as well as they have. I know he could be a lot worse off. Even though he had some really rough times, we have been very blessed and know that our prayers are being answered. Thanks again for your concern and prayers.

So far so good!

Well he has had 4 doses of chemo only two more. Yesterday was a good day, the fever was gone and I talked to him this morning and still not having a fever. If all goes well he will get chemo Saturday night, and Sunday morning and then come home Sunday afternoon. Then around Wednesday or Thursday the counts will start going down. He might be able to stay at home if we watch him really good, but if he gets a fever he will have to go back to hospital. Or he will have to be admitted on Thursday after getting the blood tests done. Then when the counts start going up, they will maybe let him go home again. The next step after that is to find a donor which they are trying to do, and then after this round of chemo process they would like to start the transplant. If the donor is not available till later then he would have to do another round of this same chemo and go through about a 4 week process again. Our hope is to start in about 3 weeks. The doctor came in yesterday and told us all of the things to expect with the transplant, and didn't paint a pretty picture. But we are hopeful that all will go well and this will cure the cancer. I will let everyone know more as we go. Thanks again to everyone for everything!

I think he is allergic to the hospital.

Well yesterday, he said he almost felt normal again, after we talked to the doctor, he told us that his counts were normal and that his bone marrow biopsy looked really clean. He also told us that the chromosones looked really good. So we got checked into our suite (ha ha) and they started the chemo that night. I called Kurt around 9 in the morning and he said he was really tired. He called me back about 10 and told me that he had a fever. I got up here about 2:45 and he was doing a little better, but was not very happy. Dr Asch came in and said that he must be doing things on his own little path, and not the one that everyone else does. Now they're thinking that he might get fevers from the chemo. The good thing is he doesn't have the chemo everyday, but the bad thing is that he has 4 more doses. So they are giving him anti-biotics and tylenol. This is so hard on him, he really is discouraged. Hopefully since he doesn't have chemo tomorrow, maybe he will feel a little better tomorrow.
Please keep him in your prayers that he will get through this next week and get rid of these fevers again!

A great week!

Well it has been a great week having Kurt home. He has been so happy to be here after 32 days in the hospital, but not looking forward to going back. Last Wednesday he had another biopsy done and we still have not heard anything, which I think is a good thing. So for now the plan is to go back on Tuesday the 14th and have some labs done, and then be admitted to undergo the next round of chemo. This is called consolidation and is not supposed to be as hard as the first. It is for 6 days, but not continually like the first seven days were. Then home for a week and then back, but it will all depend on how he is doing. So we are both hoping for a week there and then a week home. We still haven't heard if there is a donor match yet, but hopefully soon, so we can get this all behind us. I told Kurt we are just taking this year of our life off and next year, we will be able to enjoy life again.

He's Home!!!

Well they said yesterday, because he was doing so well, they might kick him out, and they did. We're so happy that they let him go home. He is so happy to be home and just enjoying every moment. Kelli, Cher, and my sister Kristy came today in the morning and cleaned our house all day. They will never know how grateful we both are for that. It smelled so clean and looked so nice. Thank you very much!! Then he decided he wanted some chinese food so I went and order some by at a place by our house and it did taste good. Now we are going to attempt to watch a movie, but I bet we'll both fall asleep. Thanks again for everyone and how great they have been to us!

Kurt with our favorite nurse Ben Johnson.

I was not ready for what happened today!

You won't believe what happened today, I still don't even believe it. Last Sunday Kurt almost went to ICU and today he got a 4hr pass to leave the hospital. I got here around 1:00 and got him ready, we went to Liberty park and he even went and sat on a bench for a little bit, but it was a little too cold so we just sat in the car and watched the birds. Then he wanted a hamburger from the Training Table, and a frosty from Wendy's, We drove around the Capitol, and got back to the hospital around 4:30. He was tired from his big day. He hasn't had a fever today. The doctor told me when I got here that his nutrifil #'s had gone from 900 yesterday to 5,400 today. I couldn't believe it. She said that if he continues to do well through the night and tomorrow that he could possibly go home tomorrow. It really turned around from just a few days ago. He will get to stay at home for about 10 days, and then come back for some more treatments. But they won't be as hard as the first treatment.
I just want everyone to know, that because of all of the prayers and Heavenly Father's love, that Kurt is doing so well. I know the power of the priesthood is very powerful, and he received many wonderful blessings. I am so grateful to my Heavenly Father for giving me the strength to get through this first part, and the knowledge that he is there for us. I know Kurt is grateful as well, but still a little scared, but we will get through this with all of the love and support from our families and friends. Thank you again for everything.

A little improvement

Today Kurt called me and said they had put a pic line in his arm and they were going to take the central line out of his chest, they're hoping this will get rid of the fevers all together, especially if this line was infected. He had some fevers still last night, but they are not as high as they were last week. They also think that when he gets his counts up higher they will keep coming down. He is eating better too, today they will take him off of the TPN food supplement through the IV. They told us that after his nutrifil came up around 500, they would talk about going home. Yesterday they told us it was around 300 and then today it went to 900. I was told by one person if he wasn't having these fevers they would probably let him go home. This afternoon the doctor came in and told us that if these fevers keep going down and go away that maybe he could come home next Monday or even sooner. It was the best news we have heard for a long time. So keep praying that the fevers go away and he will be able to come home soon! Because of the two procedures he had done today, he is warn out. Yesterday I got him to go for a walk, but today he is really tired, and just resting. Hopefully tomorrow he will feel like doing some exercise, and that will help him to build up his strength. The doctor also told us that he should start feeling better each day, and his counts should keep going up. He said that he would probably let him be home for a couple of weeks and then come back for the consolidation chemo, which would just kill any cancer that they didn't see. They are still looking for a donor, and then they will do the transplant as soon as they find one. It will be great to have him come home, and not have to be in that room anymore.
We have so many great nurses and doctors, and want to thank them for the great care they have given Kurt and will continue to give. We are so grateful for their knowledge and their desire to help people in this situation. We could really tell that they put their whole heart and minds into taking care of these cancer patients. I wish I could do something back for them, but maybe by getting Kurt better, this will let them know how much we appreciate them.

Things are looking better!

Well I said things can change quickly and they have. Sunday was a really bad day with the fevers so high and his heart rate was really high as well, they almost put him in ICU. His brother Kerry gave him a really nice blessing and he was calmer through the night. On Monday, he still got a couple of high fevers, but his heart rate wasn't as fast. They kept him on Tylenol and then put a fan in his room and some ice bags around his body. The doctors came in and told us that it is probably going to get better as his counts go up. Around 5:30 he had some Tylenol and then in about a half an hour he was feeling pretty good. I had brought up some lasagne that someone in our ward had made for my lunch, and he really wanted some. We shared and that was the first time that he had eaten dinner, he said that it tasted really good. He ate some canned mandarin oranges and a popsicle. He was really acting so much better, it was great to have him back.
Tuesday, I called him and he sounded a little better as well. I came up after work and he was doing really good, they said his fevers had stayed down most of the day, so when I got here, I asked him if he wanted to walk, he said that he would do it. He also drank a boost drink yesterday, and then he had one today. They said that is good because they have nutrients and calories. They are counting every calorie that he eats. I talked to the PA today, and she said his numbers are coming up pretty good. They said today they are at 300, when the nutifil gets to around 500 and the fevers stop they will think about letting him come home, so keep praying that everything works well in the next week or so! I just want to thank everyone for the fasting, prayers and concern. I know that Heavenly Father has heard all of our prayers and taking care of him and helping the doctors know what to do for him. Thank you again.

Transplant

I think I forgot to put this into one of the blogs, we had just been so concerned with the fevers. Last Monday, we asked for the coordinator Rachel, and she came in. Kurt was worried about the donors and if they matched. She did tell us that none of his siblings matched. Kurt was down a bit, but I told him that now they would look for someone in their 20's and that he could live a lot longer with some young cells in him. This would just delay his procedure a little while longer. They did a preliminary search when he first came in, and found a possible 218 donors. Now what they do is narrow that search down the to top 5 or 6, and try to locate them. This is what takes a long time, because the registry is world wide, and some people may have moved and not given a forwarding address. Once they locate them, they have them do a blood test, and it takes about a week to find out. So we are just waiting and hopefully it won't take too long.

This is the worst roller coaster ride I've ever been on!

Wow how things can change. He was doing great yesterday until around 2:30 and then he started to get the shakes again and his fever climbed again. It kept going up and then it would come down. I guess it did it again all through the night. I came up around 1:00 pm on Sunday, and he was doing better, then he had to go have a chest x-ray and then he got the shakes again, and the high fever of about 105. I am having a hard time watching him go through this, and I know that it is extremely hard for him to go through. Hopefully a better day is coming!

The fever finally broke!

Well I called Kurt yesterday morning and he told me that the fever had broke. I was so estatic. I came up that afternoon and he was doing really well. He was talking more to me, and then he went for a walk. He hadn't done that in 8 days. It was so good to see him be more of himself. Then he ate some dinner. It was my birthday that day, and he said that I wanted this for my present, so he gave it to me. But now today, I came up, and he was doing even better, he was on the computer, and it was great to see him this way. But then he got up to go to the bathroom, and I went to get him something, and when I came back he was shaking again. I told the nurse, and they took his temp, and it had started going up again. Now where just trying to find out why. I will get back to this and keep you posted. They gave him some demoral to help with the shaking, so most of the day is has just been sleeping. They keep coming in and checking his fever, and it goes up and down, but he seems comfortable right now. I will stay most of the night again and help him. This is going to be very frustrating and long to get him better. I think we will learn the virture of patience. They did give us some encouraging news today, that his nutrifil (and I'm sure I'm not spelling any of the medical words right) was slowing going up, in order for him to go home his count needs to be 500 and his today were 32, a little ways to go, but at least it's better than 0. We are so grateful for small things now a days!

What a horrible week!

Wow what a week! I don't even know where to start. Last Friday we got the news that Kurt's marrow was clean, but he still had this high fever. They decided to check his blood and see if there were any infections, but couldn't find any. He still had the fever on Saturday and just slept all day and didn't eat or talk, and then again on Sunday, but they found a stomach infection and started a different anti-biotic. Then he still had the fever on Monday Tuesday, Wednesday and Thursday. They did a CT scan and a MRI on Monday, then on Tuesday they did a Lombard puncture. On Wednesday, they let him rest, but then he got the fever really bad and it went to 105 the last night and Wednesday. They ran another test to check his oxygen level and if it had gone higher they would of put him in the ICU. So I had a hard time leaving him, but they said they would call me if he changed. On Thursday, they were going to do another test and sedate him and go down through his esophagus and check his heart valves to see if there was any infections. Then when I got here, they took him to do another ultrasound of his stomach, and then another chest x-ray. I think they have looked at every part inside his body. Today they still don't know why he has the high fever, but they did give him a shot that is suppose to help his white blood cells start working, so they can see if that will take care of the fevers. From all of the tests they did today, they still don't know what it is. It is very confusing, and Kurt is getting frustrated. Hopefully something will start to work and he can feel better again.
Thanks to everyone for your prayers and concern. We feel the prayers on our behalf, and know that one day this will all be over and he will be his self again.

First Hurdle

Kurt had a bone marrow biopsy done yesterday the 19th. He also got a fever yesterday. The doctor says that is normal with leukemia. They did the test in the afternoon, and by that night he was tired from the procedure and also not feeling too good with the fever. I went up in the afternoon, and he was pretty tired. Ryan, Cher, and the kids came up that night but didn't stay too long either. He was nervous about the results that we would get the next day. This will tell us if he needs more induction chemo or just wait for two weeks and let the blood counts go up.
Today, the 20th, he still has the fever, and it got pretty high. He is not feeling good at all. Around 4:00 the nurse came in and gave him more tylenol, and he said at least his marrow was clean, and I said "what!" He said Oh didn't the doctors come in an tell you. I said no. A minute later Dr. Ash came in and told us the good news. The marrow was clean, the chemo had killed the cancer cells. But he still has the high fever and feels miserable. We will find out next Monday or Tuesday if any of his siblings are a match for the marrow transplant. If they are they will keep Kurt there for another couple of weeks, and then he will get to come home for a week. If one of them matches the next week they will start right away on the transplant. If not, they will have to go to the registry and find a match. So he would have to do consolidation chemo for another 4 weeks until they find a match. He would be able to come home that week, go back for a week, come home for a week, and then go back for a week. Dr. Ash said she sees a little light at the end of the tunnel, but it will be a long winding road to get there.
Anyway we were very excited for this good news, but keep praying for him, that he will get rid of this fever.

All of the grandkids are having a hard time not being able to see and hug their grandpa. Hopefully soon, they will get to.

Avery

Kelli told me a story the other day, that 3 yr. old Avery said. They were walking on a road, and walked over a grate that had running water below. Avery said "Look mom there is some water, and Kelli responded yes, and Avery asked if we drink that water, and Kelli said no that water is gross!" Avery looked at her and said "Mom did grandpa drink this water and it made him sick?"
She had to laugh and tell her no. It makes you wonder sometimes what is going on in their minds!

The Next Step

Well we have now ended the first round of treatment. Kurt actually did okay, a little nausea and a few sores in his mouth, and being tired. The doctor said he is one of their better eaters. He never was a picky eater, but he is getting tired of the up-chuck chuckarama style of food! So now he has gotten smart, he orders grilled cheese sandwiches, and the other night he ordered a hamburger, he said that was the best meal he has had in long time!
The doctor came in on Thursday the 12th, and told us that they had the result of this chromosone test, we're still not sure about all of this medical talk, but they said due to his age his chromosones showed unfavorable, so chemo alone would probably not be the best to cure this. He told us that he would do better with a bone marrow transplant. Needless to say we were not very happy, but what can you do. Now they are looking for a donor, they first look at his siblings, because they would be the best match. Then if they don't match they will go to an unrelated donor from the registry. They are starting this right away, because sometimes it takes awhile to find one. So if anyone wants to help they just have to get on the registry. So next week they will still do another bone marrow biopsy, and then depending on the results, they will either do more extensive chemo or wait for 1-2 weeks and see if his blood counts go up. He will probably get a little break and be able to come home for a bit, but then back to the hospital. For the bone marrow he will be in the hospital another 4-6 weeks, and then need 24/7 care for another couple of months. We are a little scared but very hopeful!
Yesterday he had a visit from a guy from Loa that had gone through this a year and 1/2 ago. He said that looking back it went by fast and was worth it, because he is now doing well. It gave us a lot of hope and was good to know someone had done it.

The Shocking News!

On Monday March 2, 2009 I got an appointment for Kurt to go to the doctor that morning at 11:30 am. He was told that he probably had a infection in the lining of his lungs, and to take a couple of days off work. By the time he got home there was a message to call the doctor back right away. He called and was told that his blood counts were extremely low, and that he should get to a hospital right away. The doctor called a specialist who called us and told us to check into the hospital and that he would perform a bone marrow biopsy that next morning. We were is shock and were very worried, because the specialist had mentioned Leukemia. We went right away to the hospital and Kurt didn't feel to bad that night.
A couple of weeks ago, he had some bruising that he didn't know where they came from, and then the next week he was out of breath when he would do anything. He also said that he didn't feel right, but was not that sick. I being the worrier decided that he should go to the doctor.
On Tuesday morning they performed the procedure, and while Kurt was still in there, the doctor came out to me and said that he really thought Kurt had acute Leukemia, but that he wasn't 100% sure and hoped that he was wrong. We waited in the room all day and around 4:00 another specialist came in and said that it was acute Leukemia, and that they needed to transport him to LDS hospital that night. He was taken by ambulance, and I drove up there. He was checked into a small boring room, and told that he would be there for about a month for the first treatment. They did tell us that we could decorate his room any way we liked. At that point we couldn't think of any kind of decorating, we were just so overwhelmed by how fast things had gone. I stayed with Kurt that night, and ended up getting sick all night, we still don't know if it was everything that was going on, or if I was sick with the flu. It was scary, because I didn't feel like going home that late, but I knew that I might get him very sick, because the leukemia destroyed his immune system. The next day they sent me home because I was achy and still wasn't feeling good. That was pretty hard. I stayed home for awhile and then Kelli came up with me in the afternoon, because the Doctors were coming in to talk to all of us.

They came in and explained many things to us. I can't remember everything, but they were going to check everything out and then start the chemo the next day or two. I went home to sleep that night, I woke up at 2:30 am and just started to pray, when I was done the phone rang and it was the hospital. I wasn't worried, but after talking to the nurse I began to shake. She told me that Kurt had passed out and fallen in the bathroom, and now they had him in ICU. She told me that she had a hard time waking him up and that ICU could watch him better. Needless to say, I was very worried and couldn't get back to sleep for a couple of hours.

The next morning I still wasn't feeling well and they told me not to come in, I went into a break down. I stayed home for awhile and then felt better and took my temp and it was normal. When I got there around 12:00 he was still in ICU, but they were going to take him back to the bone marrow unit soon. They said he was doing better. So all that day, I wore the mask and gloves so I didn't spread anything to him.