Day 101
Yeah, we made it. Yesterday was Jim's 100 birthday. The mask is off. We still have to have appointments at LDS to make sure everything looks good but we are doing great. We all got that lovely virus that was going around, including Jim, which was a little scary. Quick to get it, and a little slow to shake it, but made it through.
Last week, Brendan broke his arm long boarding. We had long decided that he could not rollerblade anymore because he always hurts himself. So, what did he do, got on a long board for the first time. Went down a hill fine, came to a flat surface, pushed off and came down. Thus, the broken arm. Brendan says as I am riding this, that I should come up with a much better story to tell how he did it.
On comments, there was a request as to how I am doing. Remarkably well. Our life is crazy busy, but it is pretty much normal now, so normal is good. (Normal with sickness and broken arms, but normal for us.) Sarah still is playing the violin and practicing very hard. Spencer is taking guitar lessons and loves it. Brendan is working, despite the arm and Nathan just got a new bunny named Butterscotch. He loves it. I would never have given in to bunny with the others, but Nathan is so tender hearted and loves animals so much. Our neighbors were selling them and Nathan already had it named and visited it everyday. Whenever the neighbor would have someone come look at the rabbits, she would have Nathan hide Butterscotch, because she could not bare to see him sad. Needless, to say, Jim and I could not see him sad either.
I am still working on OB. I have gone to days now. I never thought I would like day shift, but I really do. I work just two days a week.
Jim and I are going to Park City this weekend for a military conference. It will be nice to get away. Our nephew Allen is coming here to play with the kids. So, it ought to be a good weekend for all.
So, now that we are past the 100 days, this is no longer a Cancer Blog (Yea!) but a blog tell about our family. Thanks so much for your interest.
Friday, September 26, 2008
Sunday, August 3, 2008
Day 47
Hello all,
Today is day 47. Jim is doing very well. I remember when we first went to the bone marrow clinic and we met two men who were day 45. I so longed for us to be at that point instead of just beginning. Now, here we are. Jim gets better every day. He is still bald, but is getting his eye brows and mustache back so he is very happy about that. It also makes him look a little healthier. I imagine his hair is soon to follow. It is a mystery though what it will look like because often after losing your hair it can come in a different color and texture. I can hardly imagine Jim as a red head (Ha Ha). His eye brows and mustache are black though, so we will see.
On Tuesday, Jim went to his last weekly appointment at LDS and now will be followed by his oncologist here. So, that means less SLC trips for us. We are glad about that. Jim is still not back at work yet. He still has to be very careful about germs until day 100. His stomach is slowly coming back to normal. He is not having to take the nausea pills as much. His energy is also coming back. It will be a while before he is 100%, but as long as we see progress, we are good.
Thank you for keeping us in your prayers.
Today is day 47. Jim is doing very well. I remember when we first went to the bone marrow clinic and we met two men who were day 45. I so longed for us to be at that point instead of just beginning. Now, here we are. Jim gets better every day. He is still bald, but is getting his eye brows and mustache back so he is very happy about that. It also makes him look a little healthier. I imagine his hair is soon to follow. It is a mystery though what it will look like because often after losing your hair it can come in a different color and texture. I can hardly imagine Jim as a red head (Ha Ha). His eye brows and mustache are black though, so we will see.
On Tuesday, Jim went to his last weekly appointment at LDS and now will be followed by his oncologist here. So, that means less SLC trips for us. We are glad about that. Jim is still not back at work yet. He still has to be very careful about germs until day 100. His stomach is slowly coming back to normal. He is not having to take the nausea pills as much. His energy is also coming back. It will be a while before he is 100%, but as long as we see progress, we are good.
Thank you for keeping us in your prayers.
Wednesday, July 16, 2008
Day 29
Yesterday, Jim went to the Bone Marrow specialist. He is doing well. Still is living on anti nausea drugs, and is a little run down but getting better every day. We see the progress. He is trying really hard to build up his stamina. He drug me on a mile hike the other day. It was probably pushing it a bit much for him, but he did it. He is just taking it a day at a time. But all in all, we are doing well. Have a great day!
Thursday, July 10, 2008
Day 23
Yesterday was a good day for Jim. He dragged me out for a walk after dinner. He actually walked all the way down to the park (2 blocks) through the park and back home. He is tyring hard to build up his energy. He will be glad also when his stomach returns to normal. He is still living on anti nausea pills.
Today we are going to take the kids to a matinee. He can go to a theatre when it is not crowded. Spencer went to a matinee yesterday and said there were 8 people in the theatre. So, armed with his mask, a can of Lysol, hand sanitizer and a clean sheet to sit on, we will be off to the movies.
Have a great day!
Today we are going to take the kids to a matinee. He can go to a theatre when it is not crowded. Spencer went to a matinee yesterday and said there were 8 people in the theatre. So, armed with his mask, a can of Lysol, hand sanitizer and a clean sheet to sit on, we will be off to the movies.
Have a great day!
Wednesday, July 9, 2008
Day 22
No, I have not abandoned the blog. I have not been feeling well, so the blog went by the wayside. Also, I will probably only update once a week.
Jim is doing well, or so he is told he is. The doctors say he is doing really well and will release him back to the care of his primary oncologist next week. He wishes he felt more like himself. His body took quite a beating so it is going to take time. For those of us who know Jim, we know that he does not enjoy just hanging out. He is a doer. Right now, he hangs out here, studies Chinese, plays with the kids, plays X-box and rock band, fiddles with the computer and rests alot. Yesterday, we drove down to the park and he walked around it (with his mask of course). It made him pretty tired but it was good for him.
Well, we are glad that we are on this end of the transplant. It can only get better from here. Thanks for your continued support.
Jim is doing well, or so he is told he is. The doctors say he is doing really well and will release him back to the care of his primary oncologist next week. He wishes he felt more like himself. His body took quite a beating so it is going to take time. For those of us who know Jim, we know that he does not enjoy just hanging out. He is a doer. Right now, he hangs out here, studies Chinese, plays with the kids, plays X-box and rock band, fiddles with the computer and rests alot. Yesterday, we drove down to the park and he walked around it (with his mask of course). It made him pretty tired but it was good for him.
Well, we are glad that we are on this end of the transplant. It can only get better from here. Thanks for your continued support.
Tuesday, July 1, 2008
Day 14
We got Jim home yesterday around 5:30. It was amazing. He walked outside and looked up in the sky as if he had never seen it before. He was overcome with emotion. When we got him home we sat down and had dinner as a family. It didn't seem real but in the same breath it felt like he had never left home.
Now, Jim is just concentrating on getting stronger. He is a little discouraged about how weak he still is. Getting up and down the stairs about does him in. I think that he thought that when he left the hospital he would be better. That is going to take months, but at least he is home with his family and we are here to take care of him.
The kids are being great. Nathan is being diligent about reminding everyone to wash their hands. If you use the bathroom, he will ask you if you washed. He wants to make sure that his dad stays home. I think this whole experience has had a far more profound impact on the family then they let on.
Well, today is a good day. We are all together. What can be better than that?
Now, Jim is just concentrating on getting stronger. He is a little discouraged about how weak he still is. Getting up and down the stairs about does him in. I think that he thought that when he left the hospital he would be better. That is going to take months, but at least he is home with his family and we are here to take care of him.
The kids are being great. Nathan is being diligent about reminding everyone to wash their hands. If you use the bathroom, he will ask you if you washed. He wants to make sure that his dad stays home. I think this whole experience has had a far more profound impact on the family then they let on.
Well, today is a good day. We are all together. What can be better than that?
Sunday, June 29, 2008
Day 12
Good morning. Today is day 12 and Jim gets to go home tomorrow, Day 13 if all continues to go well. It is going to be a very slow day for Jim. He is ready to come be with his family. His bones are still working and counts continue to go up, so we are grateful.
Well, no other news. Today we are just getting ready for him to come home.
Well, no other news. Today we are just getting ready for him to come home.
Saturday, June 28, 2008
Day 11
Good Morning; Jim is ingrafted. (Bone marrow is working). His neutophil (first line white blood cells) went from 200 to 3500 in the night. The doctors are thinking that he will go home on Monday. Yea!
Jim had tremendous bone pain yesterday. But, now we know why. His bones were working overtime. He feels much better today. Pain has subsided. Mouth and throat pain is almost gone. He is still very weak.
Bren and Spencer (and our adopted son Blake) are going to a concert today in town so they dropped by this morning and dropped off Nate. Sarah will be coming in to town for a violin concert at the arts festival. Nate and I will meet her their. After, we will drop back in the hospital to spend some time with Jim.
So, now Jim just has to put his time in so he can go home. The kids and I will be getting things ready at home for Jim. Carpets are getting cleaned today. Tonight and tomorrow we will be cleaning animals and sanitizing the house. We can't wait to get him home.
Jim will have to live under a pretty sterile environment for the first 100 days. He can't be around people who are sick. If he goes outside, he has to wear a special filtration mask. He will be on a low microbial diet, which means meats have to be cooked very well and he can't eat raw fruits or vegies. He still has a very low immune system. No plants in the house. They are all outside on my porch. You will probably not see him in church or work for the first 60 days even with a mask. Lysol will be a hot commodity at our house. The kids may even have to bath even though it is summer, heaven forbid. (Ha, Ha). He will also have outpatient visits at LDS hospital 3 times a week to make sure he is doing ok. Even though there are some restrictions, they seem so minimal because we will be home and out of the cave and together. It is funny how your whole perspective changes. You could ask me what day of the week it is and todays date. I would not know, but I know it is day 12 and that is all that matters to me.
Well, that is all for now. Have a good day.
Jim had tremendous bone pain yesterday. But, now we know why. His bones were working overtime. He feels much better today. Pain has subsided. Mouth and throat pain is almost gone. He is still very weak.
Bren and Spencer (and our adopted son Blake) are going to a concert today in town so they dropped by this morning and dropped off Nate. Sarah will be coming in to town for a violin concert at the arts festival. Nate and I will meet her their. After, we will drop back in the hospital to spend some time with Jim.
So, now Jim just has to put his time in so he can go home. The kids and I will be getting things ready at home for Jim. Carpets are getting cleaned today. Tonight and tomorrow we will be cleaning animals and sanitizing the house. We can't wait to get him home.
Jim will have to live under a pretty sterile environment for the first 100 days. He can't be around people who are sick. If he goes outside, he has to wear a special filtration mask. He will be on a low microbial diet, which means meats have to be cooked very well and he can't eat raw fruits or vegies. He still has a very low immune system. No plants in the house. They are all outside on my porch. You will probably not see him in church or work for the first 60 days even with a mask. Lysol will be a hot commodity at our house. The kids may even have to bath even though it is summer, heaven forbid. (Ha, Ha). He will also have outpatient visits at LDS hospital 3 times a week to make sure he is doing ok. Even though there are some restrictions, they seem so minimal because we will be home and out of the cave and together. It is funny how your whole perspective changes. You could ask me what day of the week it is and todays date. I would not know, but I know it is day 12 and that is all that matters to me.
Well, that is all for now. Have a good day.
Friday, June 27, 2008
Day 10
Today is a really good day. We are definitely on the upswing now. Jim is feeling much better. Mouth and throat sores are beginning to heal. We got news today that his bone marrow is officially working. His neutrophils (first line immunity) are at 200 today. They were 0 yesterday. They like to see the count up to 500 for a couple of days before he gets to go home. So, Jim and I are hoping he gets to go home the first part of next week. Today, one of the nurses said that all of the doctors and nurses are impressed with Jim. He smiled and said "they only love me for my body." I know when he starts cracking jokes, things are looking up.
I have been told that I tend to spin this blog in a positive manner that doesn't reflect reality and thus people do not know how hard this has been. So, for the record, it is really hard. (ha, ha) But, in truth, we have tried through this whole ordeal, beginning from initial cancer diagnosis back in 2005 to approach the matter in a positive way. I learned that you cannot stay in bed and cry forever. You eventually have to get up. I read from someone, that you cannot choose the cards you have been dealt, but you can choose how you play them. We have been trying to play them the best we can. We also rely heavily on our faith and the faith of those around us to pull us through. That does not mean that we do not have nervous breakdown days like yesterday. We all get tired and we all have bad times. But, the difference is, we always pull ourselves back up and pull through.
Keep praying and keep your fingers crossed for us. Thanks!
I have been told that I tend to spin this blog in a positive manner that doesn't reflect reality and thus people do not know how hard this has been. So, for the record, it is really hard. (ha, ha) But, in truth, we have tried through this whole ordeal, beginning from initial cancer diagnosis back in 2005 to approach the matter in a positive way. I learned that you cannot stay in bed and cry forever. You eventually have to get up. I read from someone, that you cannot choose the cards you have been dealt, but you can choose how you play them. We have been trying to play them the best we can. We also rely heavily on our faith and the faith of those around us to pull us through. That does not mean that we do not have nervous breakdown days like yesterday. We all get tired and we all have bad times. But, the difference is, we always pull ourselves back up and pull through.
Keep praying and keep your fingers crossed for us. Thanks!
Wednesday, June 25, 2008
Day 8
Good morning,
Yesterday was a hard day for Jim. He is getting pretty frustrated and tired of this whole thing. He was put on a pain pump yesterday for his mouth and throat sores. I think it is helping. He is determined to continue to eat, but it is getting increasingly harder to swallow. He may end up having to be fed through his IV. Brendan and Sarah came for a visit. that is always a pick me up for both of us. Sarah decided to stay the night and camp out with me. Jim and I both enjoyed having her here.
Today, blood counts are still zero. Jim will be getting more platelets today. He is also still getting shots to stimulate his bone marrow. Hopefully we will see counts rising soon. Right now Sarah and Jim are playing cards on his bed. A good distraction. I will be going home today for a night and back tomorrow. I haven't been home since Saturday so I am excited. It is amazing how we take things for granted such as going home, seeing our kids and sleeping in our own beds. Being here makes me realize what a sanctuary home is. I feel so good when I get out of the cave and see the sunshine and the mountains. I hope Jim will be able to experience that joy soon.
Well, we are hanging in there. I am so proud of my kids and so grateful for all the help. Keep the prayers coming.
Yesterday was a hard day for Jim. He is getting pretty frustrated and tired of this whole thing. He was put on a pain pump yesterday for his mouth and throat sores. I think it is helping. He is determined to continue to eat, but it is getting increasingly harder to swallow. He may end up having to be fed through his IV. Brendan and Sarah came for a visit. that is always a pick me up for both of us. Sarah decided to stay the night and camp out with me. Jim and I both enjoyed having her here.
Today, blood counts are still zero. Jim will be getting more platelets today. He is also still getting shots to stimulate his bone marrow. Hopefully we will see counts rising soon. Right now Sarah and Jim are playing cards on his bed. A good distraction. I will be going home today for a night and back tomorrow. I haven't been home since Saturday so I am excited. It is amazing how we take things for granted such as going home, seeing our kids and sleeping in our own beds. Being here makes me realize what a sanctuary home is. I feel so good when I get out of the cave and see the sunshine and the mountains. I hope Jim will be able to experience that joy soon.
Well, we are hanging in there. I am so proud of my kids and so grateful for all the help. Keep the prayers coming.
Tuesday, June 24, 2008
Day 7
Two weeks down. Yea! Hopefully only 1 more to go.
Yesterday was an ok day for Jim. He tried to take pain medication for his mouth and throat, so he spent most of the day snowed. He doesn't enjoy that.
Today, he is probably going be put on a pca pump (patient controlled pain meds) so hopefully he will not be as snowed. The doctors tell us that usually the mouth and throat will heal when the counts start to come up. So, we wait for that. This morning he has taken his walk and is in the shower. He will need a rest after that. He is pretty weak.
Kids are very happy. Their Nanna is at the house so they are good.
Have a great day!
Yesterday was an ok day for Jim. He tried to take pain medication for his mouth and throat, so he spent most of the day snowed. He doesn't enjoy that.
Today, he is probably going be put on a pca pump (patient controlled pain meds) so hopefully he will not be as snowed. The doctors tell us that usually the mouth and throat will heal when the counts start to come up. So, we wait for that. This morning he has taken his walk and is in the shower. He will need a rest after that. He is pretty weak.
Kids are very happy. Their Nanna is at the house so they are good.
Have a great day!
Monday, June 23, 2008
Day 6
Yesterday was a better day for Jim. The pain medication really helped his mouth and stomach pain. He even got in 2 hall walks yesterday. We read conference talks from the Ensign. The best medicine however was when the kids came after dinner. He felt wonderful. Sarah and Maddie put on a private violin show for Jim and then went out into the pod and put one on for the other patients. Most of the patients listened from their rooms. One patient sent out a stuffed dog for the girls because he loved the music so much. Music is so calming for the soul. Jim did not want the kids to leave. He felt so good. They each took turns laying with their Dad. They ended up staying until 10:00 PM. It had been a week since he had seen them so he really missed them.
Today, he is pretty snowed right now from the pain medication. His blood counts are still dropping. He will be getting platelets today since he really doesnt't have any. He will also be getting a white blood count stimulater that will hopefully get his bone marrow going. Usually counts don't start going up until about day 11.
Hopefully he has another decent day today. Have a great day.
Today, he is pretty snowed right now from the pain medication. His blood counts are still dropping. He will be getting platelets today since he really doesnt't have any. He will also be getting a white blood count stimulater that will hopefully get his bone marrow going. Usually counts don't start going up until about day 11.
Hopefully he has another decent day today. Have a great day.
Sunday, June 22, 2008
Day 5
Yesterday, Jim had another " trying to pass the day away" day. I got back to the hospital in the afternoon. I was told he was pretty "blaw" all day. He has things to do, he just doesn't feel like doing them. His mouth and belly are still sore and his counts are still coming down. His doctors are saying he will probably need some blood products tomorrow. His platelets are really low, so we have to be really careful about bleeding. He can't even blow his nose so he doesn't start a nose bleed. He has not had any fevers or infections though so in the big picture he is doing really well.
Today, he woke a little feisty. I would rather see him that way though then just laying there like yesterday. The kitchen for some reason only brought him a fruit cup and juice for breakfast. He wasn't too happy about that. He said what he really wanted was french toast and bacon, so they brought him up some and he ate really well. He has also decided that maybe he had better take some pain medication for the mouth and stomach pain. So, hopefully that will help. He made himself walk a little in the hall and the LDS Hospital branch brought us the sacrament. Right now he is resting in the lazy boy and getting some strength before he showers. It takes all of his strength just to take a short walk down the hall and shower. After that he usually has to take a nap.
Today, the kids are going to come up after church. He is really looking forward to that. The bone marrow wing is abuzz today because there are rumors of a violin concert. Sarah and her great friend Maddie (aka, our blond daughter) are going to come and do a little violin concert. We asked our nurse if it was OK and now everyone I see here is asking me about it. That should be a great pick me up.
As always, thanks for your thoughts and prayers.
Today, he woke a little feisty. I would rather see him that way though then just laying there like yesterday. The kitchen for some reason only brought him a fruit cup and juice for breakfast. He wasn't too happy about that. He said what he really wanted was french toast and bacon, so they brought him up some and he ate really well. He has also decided that maybe he had better take some pain medication for the mouth and stomach pain. So, hopefully that will help. He made himself walk a little in the hall and the LDS Hospital branch brought us the sacrament. Right now he is resting in the lazy boy and getting some strength before he showers. It takes all of his strength just to take a short walk down the hall and shower. After that he usually has to take a nap.
Today, the kids are going to come up after church. He is really looking forward to that. The bone marrow wing is abuzz today because there are rumors of a violin concert. Sarah and her great friend Maddie (aka, our blond daughter) are going to come and do a little violin concert. We asked our nurse if it was OK and now everyone I see here is asking me about it. That should be a great pick me up.
As always, thanks for your thoughts and prayers.
Saturday, June 21, 2008
Day 4
Good morning, it is for me because I slept in my own bed last night wedged between my dear Sarah and Nathan. Nothing like that to boost the spirits. I got home last night around 6:30 to my kids happy and my brother and my sister in law who had dinner on the table for me. I can't tell everyone how much it means to me the help you are giving us during this time.
Now for the important stuff. Yesterday, Jim's day pretty much sucked. No better way to put it or positive way to spin it. He was pretty miserable. His doctors say he may have a week of this misery before it gets better. It may even get worse. But, he is doing as expected and it WILL get better. I keep reminding him that. He is not having any major problems but he just describes it has his regular Chemo he had before times 100. I talked to him last night before bed and he didn't really want to talk, just sleep.
This morning I have not been able to reach him. I hope that means he is up and in the shower. I will be going back to the hospital as soon as I get cleaned up. My sister in law (really just my sister) will be up to the house today and my nephew will come and spend the night tomorrow night with the kids. We are going to bring the kids down for a short visit tomorrow. Hopefully that will boost Jim's spirit. As bad as he feels, he really misses them. Also, my dear sweet mother (who just broke her hip 2 months ago) is going to make the 5 hour drive from St. George on Monday to come and coddle her grandchildren. I am grateful and they are excited.
Well, that is the scoop. I will check in tomorrow.
Now for the important stuff. Yesterday, Jim's day pretty much sucked. No better way to put it or positive way to spin it. He was pretty miserable. His doctors say he may have a week of this misery before it gets better. It may even get worse. But, he is doing as expected and it WILL get better. I keep reminding him that. He is not having any major problems but he just describes it has his regular Chemo he had before times 100. I talked to him last night before bed and he didn't really want to talk, just sleep.
This morning I have not been able to reach him. I hope that means he is up and in the shower. I will be going back to the hospital as soon as I get cleaned up. My sister in law (really just my sister) will be up to the house today and my nephew will come and spend the night tomorrow night with the kids. We are going to bring the kids down for a short visit tomorrow. Hopefully that will boost Jim's spirit. As bad as he feels, he really misses them. Also, my dear sweet mother (who just broke her hip 2 months ago) is going to make the 5 hour drive from St. George on Monday to come and coddle her grandchildren. I am grateful and they are excited.
Well, that is the scoop. I will check in tomorrow.
Friday, June 20, 2008
Day 3
Yesterday, Jim felt pretty yucky but made it through the day. The Chemo is definitely catching up with him.
Today, Jim is feeling pretty bad. His white count is down to 0.3 and he is now on neutropenic precautions, which means we have to be extra careful he doesn't get sick. He has developed some sores in his mouth and is having trouble eating. As bad as that sounds, it is typical and was expected. I am sure he will have a few more days like this before it goes up. I just keep reminding him how good he is going to feel when this is all over. Sometimes it takes the bad to really appreciate the good. He is pushing through like always though. He even took a small walk in the halls and is taking his shower. Now he just has to put in his time and wait this thing out.
Today, I have to go home for the night. I haven't been home for 3 days and it is taking its toll on the kids. I feel so conflicted about leaving him and leaving them. That is the hardest part for me is juggling myself between them. Spencer is as scout camp and Sarah and Nate have been staying at a dear friends. Nate was feeling a little home sick though, so I think it will be good to have a night to cuddle with him.
Keep up the prayers. We need them.
Today, Jim is feeling pretty bad. His white count is down to 0.3 and he is now on neutropenic precautions, which means we have to be extra careful he doesn't get sick. He has developed some sores in his mouth and is having trouble eating. As bad as that sounds, it is typical and was expected. I am sure he will have a few more days like this before it goes up. I just keep reminding him how good he is going to feel when this is all over. Sometimes it takes the bad to really appreciate the good. He is pushing through like always though. He even took a small walk in the halls and is taking his shower. Now he just has to put in his time and wait this thing out.
Today, I have to go home for the night. I haven't been home for 3 days and it is taking its toll on the kids. I feel so conflicted about leaving him and leaving them. That is the hardest part for me is juggling myself between them. Spencer is as scout camp and Sarah and Nate have been staying at a dear friends. Nate was feeling a little home sick though, so I think it will be good to have a night to cuddle with him.
Keep up the prayers. We need them.
Thursday, June 19, 2008
Day 2
Yesterday was a pretty non-eventful day. Jim got 8 more bags of stem cells. Now we are done with that part. He pretty much slept the day away.
This morning was a slow start. Not feeling so great today. Blood counts are definitely dropping. Energy and motivation are down the toilet now. So, now we just wait for the counts to drop to nothing, hope he doesn't have any complications and wait for the counts to come back up.
Jim still smells like tomatoes today. My brother was here last night and said that if we just had a hot plate in the corner with some tomato soup cooking on it, the smell wouldn't seem so strange. Nedra, Jim's sister couldn't smell it at all. That's because Jim is the youngest and he will always be the perfect little baby brother in the family. Can't even stink.
Kids are good. Spencer left on a young mens repelling camp out with our church. Funny thing. My mom in St. George got a text message from Spence saying "I'm leaving." She didn't know he was going to camp and just thought he was fed up with this whole situation and was leaving. She of course quickly called him and he put her mind at ease. So, I am glad he gets a break though.
Well, that is my exciting update. Thanks for tuning in.
This morning was a slow start. Not feeling so great today. Blood counts are definitely dropping. Energy and motivation are down the toilet now. So, now we just wait for the counts to drop to nothing, hope he doesn't have any complications and wait for the counts to come back up.
Jim still smells like tomatoes today. My brother was here last night and said that if we just had a hot plate in the corner with some tomato soup cooking on it, the smell wouldn't seem so strange. Nedra, Jim's sister couldn't smell it at all. That's because Jim is the youngest and he will always be the perfect little baby brother in the family. Can't even stink.
Kids are good. Spencer left on a young mens repelling camp out with our church. Funny thing. My mom in St. George got a text message from Spence saying "I'm leaving." She didn't know he was going to camp and just thought he was fed up with this whole situation and was leaving. She of course quickly called him and he put her mind at ease. So, I am glad he gets a break though.
Well, that is my exciting update. Thanks for tuning in.
Wednesday, June 18, 2008
Day 1
Jim did very well yesterday. He got in 8 bags of stem cells. They medicated him really well so he was pretty sleepy and slept through much of it. The preservatives that they use to store the cells breaks down and smells very bad. There is much debate about what it smells like. Some say creamed corn. I think it smells like sweet tomatoes, but not in a good way. It sweats out through his pores so he should smell like this (stink) for a couple of days. The preservative is poweful stuff. While the stem cells were infusing Brendan had an allergic reaction. Apparently that is not uncommon. There are some nurses that cannot even work the floor while they are infusing. Brendans throat started closing up and he was having trouble swallowing. A dose of Benadryl took care of it. So, during the transfusion, I was splitting my time between Jim's room and the ER. Needless to say, Bren will not be coming around for a few days now.
The reason they call this day 1 is because it is the first day after transplant. That is a very important thing around here, what day you are on. Everybody knows what day you are. The first 30 days are the most crucial, but you are on watch for about 100 days. Around day 7 - 14 is when they anticipate blood counts dropping and possiple problems. Most people end up getting blood transfusions during that time and alot develope infections. So now, is watch and wait. After everthing drops, that is when they hope the stem cells start doing their job.
This morning Jim woke and took his walk around the unit. He is showering now. On the agenda today, 8 more bags of stem cells and then we are done with that part.
Kids are doing well. Spencer thinks he is Dad and Mom combined. He has quite the routine every day. He gets to go to camp for a few days, so I am glad he will get a break. As always, keep praying. We certainly feel your prayers.
Have a great day!
The reason they call this day 1 is because it is the first day after transplant. That is a very important thing around here, what day you are on. Everybody knows what day you are. The first 30 days are the most crucial, but you are on watch for about 100 days. Around day 7 - 14 is when they anticipate blood counts dropping and possiple problems. Most people end up getting blood transfusions during that time and alot develope infections. So now, is watch and wait. After everthing drops, that is when they hope the stem cells start doing their job.
This morning Jim woke and took his walk around the unit. He is showering now. On the agenda today, 8 more bags of stem cells and then we are done with that part.
Kids are doing well. Spencer thinks he is Dad and Mom combined. He has quite the routine every day. He gets to go to camp for a few days, so I am glad he will get a break. As always, keep praying. We certainly feel your prayers.
Have a great day!
Tuesday, June 17, 2008
Day Zero - stem cell day
Good Morning;
One week down. Yea!
Yesterday Jim had a non eventful day. Non eventful around here is good. I got back to the hospital around 6:00 PM. Hopefully got the kids settled for another couple of days. When I got here to the hospital Jim had started another round of violent hiccups. If you recall, a couple of days ago he had them for a day and a half. He also was a little nervous about today. We said a prayer together before bed. He prayed that his hiccups would go away and he would be comforted about today and rest well. I kid you not, after he said Amen, there was not one other hiccup. Wow, what a testimony about faith and prayer. A Miracle!
Today, Jim gets 8 bags of stem cells. Tomorrow he gets 8 more. It is just like getting a blood transfusion but the preservatives they use to store the cells can cause havoc while you are getting them. They will keep Jim pretty drugged today in order to prevent reaction. so, here we go.
Thanks so much for all of your prayers and support. The comments on the blog are amazing.
One week down. Yea!
Yesterday Jim had a non eventful day. Non eventful around here is good. I got back to the hospital around 6:00 PM. Hopefully got the kids settled for another couple of days. When I got here to the hospital Jim had started another round of violent hiccups. If you recall, a couple of days ago he had them for a day and a half. He also was a little nervous about today. We said a prayer together before bed. He prayed that his hiccups would go away and he would be comforted about today and rest well. I kid you not, after he said Amen, there was not one other hiccup. Wow, what a testimony about faith and prayer. A Miracle!
Today, Jim gets 8 bags of stem cells. Tomorrow he gets 8 more. It is just like getting a blood transfusion but the preservatives they use to store the cells can cause havoc while you are getting them. They will keep Jim pretty drugged today in order to prevent reaction. so, here we go.
Thanks so much for all of your prayers and support. The comments on the blog are amazing.
Monday, June 16, 2008
Monday, June 16
Good late morning,
Yesterday was a great day for Jim. He was feeling well. He had his last chemo and tolerated it well. His blood counts were maintaining yesterday so I lobbied for him to get a walk outside. He hadn't seen the sun since Monday so he said it was surreal. He had to wear his "costume" of course so the only thing that was exposed was his bald head, but none the less he enjoyed it. He actually went out twice.
The kids came up after dinner and had a Fathers Day celebration. They got to walk outside with their dad. It was very nice because it was just our family so the kids each took turns laying in bed with Jim. There was no x-box, just cross word puzzles and lots of loves.
I went home with the kids last night and will be going back today. I have a new found respect for my bed at home. Jim called me this morning and said he was doing well. On the agenda today; Nothing! It is a day for the toxins to leave his body and then he gets his stem cells tomorrow. They call tomorrow "day zero" or his "new birthday." He will be 2 days short of his dads birthday. He thought that would be cool to have it the same day, but not cool enough to wait 2 days.
Thanks so much for all of the sweet comments that are left on the blog. It does Jim's heart good.
Yesterday was a great day for Jim. He was feeling well. He had his last chemo and tolerated it well. His blood counts were maintaining yesterday so I lobbied for him to get a walk outside. He hadn't seen the sun since Monday so he said it was surreal. He had to wear his "costume" of course so the only thing that was exposed was his bald head, but none the less he enjoyed it. He actually went out twice.
The kids came up after dinner and had a Fathers Day celebration. They got to walk outside with their dad. It was very nice because it was just our family so the kids each took turns laying in bed with Jim. There was no x-box, just cross word puzzles and lots of loves.
I went home with the kids last night and will be going back today. I have a new found respect for my bed at home. Jim called me this morning and said he was doing well. On the agenda today; Nothing! It is a day for the toxins to leave his body and then he gets his stem cells tomorrow. They call tomorrow "day zero" or his "new birthday." He will be 2 days short of his dads birthday. He thought that would be cool to have it the same day, but not cool enough to wait 2 days.
Thanks so much for all of the sweet comments that are left on the blog. It does Jim's heart good.
Sunday, June 15, 2008
Sunday, June 15
Good Morning and Happy Fathers Day.
Yesterday, Jim felt a little "funky" as he calls it. He had not slept well the night before and his energy was way down. He started getting nausea medicine before meals though so that helped. He rested alot yesterday.
Today, he woke feeling pretty good. He slept well last night. I asked him since it was Fathers Day if he would like breakfast in bed (ha ha). Instead he had his breakfast in the lazy boy. We went on a hall walk this morning. That actually is really good because there are some nice big windows he can look out when he walks. I think looking outside is good for his soul. His room window has a lovely view of the side of the building. Right now he is riding the exercise bike in his room. He said he will probably only last about ten seconds but he has already done more than that.
On the agenda today. His last chemo. Hopefully that will be his last for several years. Also, the kids will be visiting after church so we can have a little Fathers Day celebration.
The kids and I are doing well. I took a long (too long) walk yesterday around city creek canyon. It was great to be out in the sunshine. I feel a little guilty when I go out though because I guess I think I need to suffer "the cave " along with Jim. I know it is better though if I can keep myself physically and mentally healthy. I won't be much good to Jim if I am not. So, that is how I rationalize going outside. The kids have had Jim's sister with them all weekend, so I know that is a great break for them. She plays with them and they got to go swimming yesterday and be kids. I am grateful.
Have a great Fathers Day!
Yesterday, Jim felt a little "funky" as he calls it. He had not slept well the night before and his energy was way down. He started getting nausea medicine before meals though so that helped. He rested alot yesterday.
Today, he woke feeling pretty good. He slept well last night. I asked him since it was Fathers Day if he would like breakfast in bed (ha ha). Instead he had his breakfast in the lazy boy. We went on a hall walk this morning. That actually is really good because there are some nice big windows he can look out when he walks. I think looking outside is good for his soul. His room window has a lovely view of the side of the building. Right now he is riding the exercise bike in his room. He said he will probably only last about ten seconds but he has already done more than that.
On the agenda today. His last chemo. Hopefully that will be his last for several years. Also, the kids will be visiting after church so we can have a little Fathers Day celebration.
The kids and I are doing well. I took a long (too long) walk yesterday around city creek canyon. It was great to be out in the sunshine. I feel a little guilty when I go out though because I guess I think I need to suffer "the cave " along with Jim. I know it is better though if I can keep myself physically and mentally healthy. I won't be much good to Jim if I am not. So, that is how I rationalize going outside. The kids have had Jim's sister with them all weekend, so I know that is a great break for them. She plays with them and they got to go swimming yesterday and be kids. I am grateful.
Have a great Fathers Day!
Saturday, June 14, 2008
Saturday, June 14
Yesterday the kids and I arrived at the hospital around 3:00. Sarah had been at girls camp all week so she wanted to come and see her dad. It does their little hearts good to come and see him and the x-box. Jim's four walls were closing in on him a little bit yesterday. Also, blood counts are dropping so with that also drops energy and motivation. But, he is hanging in there. After the kids left, we had date night which consisted of an after dinner walk (around the unit) a movie and junior mints.
This morning Jim took his morning walk around the unit. Even though he doesn't really feel like it he is trying to keep active so that he can keep up his energy. On the agenda today; more chemo. After today, he will have one more day of chemo. Yea!
It is overwhelming to us to see that amount of people who are checking this blog on Jim's progress. As always, we are so grateful for your thoughts and prayers.
Friday, June 13, 2008
Friday, June 13
I just talked to Jim this morning. I went home last night and Bren came and stayed with his Dad. I will be going back to the hospital in a couple of hours and stay another couple of nights. Kids are doing well. Sarah is at girls camp (I miss her) and the boys spent the day with their Aunt and Uncle at the Airforce Museum and Nicklecade. I was surprised at how well the house was still intact. I am proud of them.
Jim has had violent hiccups since Wednesday, (chemo side affect) and decided to take some medicine last night. He said it snowed him so bad he was just taking his walk at 9:30 Vs. his regular walk at 7:00. He is still pretty tired. That could also be the cumulative effects of his chemo though. No nausea or vomiting. We are glad about that because it will make it easier for him when his blood counts drop. Yesterday, Jim spent most of the day studying Chinese. Boredom is kicking in. There is not much to do. You have to stay in your room with the door closed. The rooms are pretty tiny. Jim calls it his cave.
Today on the agenda, more chemo. He gets three different ones today. But, every day is one more step closer to getting this done and getting home. So far, so good.
Jim has had violent hiccups since Wednesday, (chemo side affect) and decided to take some medicine last night. He said it snowed him so bad he was just taking his walk at 9:30 Vs. his regular walk at 7:00. He is still pretty tired. That could also be the cumulative effects of his chemo though. No nausea or vomiting. We are glad about that because it will make it easier for him when his blood counts drop. Yesterday, Jim spent most of the day studying Chinese. Boredom is kicking in. There is not much to do. You have to stay in your room with the door closed. The rooms are pretty tiny. Jim calls it his cave.
Today on the agenda, more chemo. He gets three different ones today. But, every day is one more step closer to getting this done and getting home. So far, so good.
Thursday, June 12, 2008
Thursday, June 12
Jim had a great day yesterday. He had 3 different Chemo infusions and is still doing well. He has not experienced any side effects yet. His strength is still very much up.
This morning he woke again at the crack of dawn. He did his walk on the unit in his costume (as he calls it) and came back and did several exercises . His mood is still up and he is making us all laugh. He for sure keeps the nurses and CNA's on their toes. I heard one CNA last night tell a CNA in training to watch out for that guy he'll give you crap. She laughed and meant it in a funny way of course. Today there is more chemo therapy on the agenda.
Brendan (our oldest) is going to come and spend the night tonight so if Jim is still doing so well this afternoon I think I will go home and spend a night without cot springs in my back. Jim's sister Nedra is going to come up and spend the night with the kids on Friday and Saturday, so I will be back to the hospital then.
Thanks for your prayers.
This morning he woke again at the crack of dawn. He did his walk on the unit in his costume (as he calls it) and came back and did several exercises . His mood is still up and he is making us all laugh. He for sure keeps the nurses and CNA's on their toes. I heard one CNA last night tell a CNA in training to watch out for that guy he'll give you crap. She laughed and meant it in a funny way of course. Today there is more chemo therapy on the agenda.
Brendan (our oldest) is going to come and spend the night tonight so if Jim is still doing so well this afternoon I think I will go home and spend a night without cot springs in my back. Jim's sister Nedra is going to come up and spend the night with the kids on Friday and Saturday, so I will be back to the hospital then.
Thanks for your prayers.
Wednesday, June 11, 2008
Wednesday, June 11
Jim did great last night. He finished his chemo about midnight. He slept really well except for the fact that they pump him full of fluids so what goes in must come out. He did not have any side effects during the treatment, so we were happy.
This morning he was up around 5:00. He walked around the unit in full garb (isolation gown, filtration mask and gloves). He came back to the room and rode an exercise bike for about 15 minutes. Now it is 9:30 and he has had his shower and is ready to go (where I don't know) . Next on the schedule is kick boxing, spinning, and marathon training. (just kidding),
Anyway, we are glad that so far so good.
This morning he was up around 5:00. He walked around the unit in full garb (isolation gown, filtration mask and gloves). He came back to the room and rode an exercise bike for about 15 minutes. Now it is 9:30 and he has had his shower and is ready to go (where I don't know) . Next on the schedule is kick boxing, spinning, and marathon training. (just kidding),
Anyway, we are glad that so far so good.
Tuesday, June 10, 2008
June 10th
Last night was a great night. We had family and friends stop by to wish Jim well. We also all had blessings last night which was very comforting. We went to bed about midnight. Nathan slept in bed with us last night cuddled up to his BaBa (Daddy in Chinese).
This morning Jim was up at 5:00 AM and we were out the door by 7:00 Am. It has been a hurry and wait day, but I guess that is OK since we really don't have anywhere to go. He finally got his central line in and just came back to the room at 4:40PM. He is finally getting to eat now. They are going to run fluids until 8:00 PM and then will start his first chemo tonight at 8:00. They say this first dose is pretty hefty because it is alcohol based and Jim has never been a drinker. Apparently you get to skip the fun part of being drunk and move right to the hangover part. I will be staying the night with Jim.
At least Jim still feels good. Right now he and Brendan (our oldest) are going to play a little X-box.
I will check back in tomorrow.
This morning Jim was up at 5:00 AM and we were out the door by 7:00 Am. It has been a hurry and wait day, but I guess that is OK since we really don't have anywhere to go. He finally got his central line in and just came back to the room at 4:40PM. He is finally getting to eat now. They are going to run fluids until 8:00 PM and then will start his first chemo tonight at 8:00. They say this first dose is pretty hefty because it is alcohol based and Jim has never been a drinker. Apparently you get to skip the fun part of being drunk and move right to the hangover part. I will be staying the night with Jim.
At least Jim still feels good. Right now he and Brendan (our oldest) are going to play a little X-box.
I will check back in tomorrow.
Monday, June 9, 2008
June, 9
We went to LDS Hospital today for more fun preadmission stuff. We had an hour with the doctor and discussed the process again and he answered questions. Jim was supposed to get his Central IV line today but blood work showed that his blood is too thin. (He could bleed when they put in the line.) So they gave him Vitamin K (helps clot blood) and they will put his line in when he is admitted in the morning. We have to be at the hospital no later than 8:00 AM. After they put in the line he will have his first dose of high dose chemo. Yippee!
Jim is feeling very well and psychologically doing well. We just got home from the hospital and he grabbed the kids to go on one last hike. He is ready to begin this process. As for me, I think I would put it off if I could. Not because I don't think it is right, but just because it won't be fun. It is just a little nerve wracking being on this end of the procedure (front). We saw alot of people today on the transplant ward that were post transplant and doing well. That was very inspiring. It is like one big brotherhood of bald people who all now have a new outlook on life. We look forward to being on that end of the transplant.
Yesterday in church we sang count your blessings. It occurred to me that we should be grateful that we even have the opportunity of having a transplant. This is not always an option for people. So, I am grateful and I will keep reminding myself that.
As always, we appreciate your warm wishes and prayers.
Jim is feeling very well and psychologically doing well. We just got home from the hospital and he grabbed the kids to go on one last hike. He is ready to begin this process. As for me, I think I would put it off if I could. Not because I don't think it is right, but just because it won't be fun. It is just a little nerve wracking being on this end of the procedure (front). We saw alot of people today on the transplant ward that were post transplant and doing well. That was very inspiring. It is like one big brotherhood of bald people who all now have a new outlook on life. We look forward to being on that end of the transplant.
Yesterday in church we sang count your blessings. It occurred to me that we should be grateful that we even have the opportunity of having a transplant. This is not always an option for people. So, I am grateful and I will keep reminding myself that.
As always, we appreciate your warm wishes and prayers.
Thursday, June 5, 2008
Jim's Lymphoma History
Jim, was diagnosed with low grade lymphoma in the middle of April, 2005. I was in my last two weeks of nursing school. It was a very strange time.
Jim had not been feeling well. He was feeling very weak and having trouble running for his physical fitness test. His doctor put him on iron, but it did not help. I remember he would come home from work and fall asleep on the couch. If you know Jim, you know that is strange because he is forever moving. Also, he would have severe stomach pains after he would eat. Later, we found out that his spleen was triple in size, so when he would eat his stomach had little room to expand and would cause terrible pain. He was also having night sweats which he did not tell me. His lymph nodes were enlarged but he really was not concerned because he thought they were fatty tumors. He has always had lipomas (fatty tumors) on his arms and back, so when he felt the enlarged lymph nodes he just thought he had more lipomas growing. Jim is one who never goes to the doctor and never misses work even when he is sick. On the day of his PT test at National Guard, he came home and looked terrible. I can remember thinking he was wasting away before my eyes. I was suddenly very worried as I realized the weight loss {without trying} , lack of energy and the grey coloring of his skin. We decided that day, he should go back to the doctor. I thought that maybe he had contracted something from an over seas trip he went on in January. The next day, he went back to his doctor. His doctor felt Jim's stomach and told him that he had a 10 centimeter mass. He ordered a CT scan for the next day. Right after the scan, the Radiologist met with us and showed us the scan. He told us that it looked like Lymphoma and that it looked pretty wide spread. We went home in shock. Jim had had a very good friend die of Lymphoma a few years before. It had taken his friend in 2 months so we were terrified. This definitely did not fit in our plans for our future. When we got home Jim went out and mowed the lawn. He was so weak, that he came in the house and sat on the chair and cried. He said, "I think this is the last time, I will be able to mow the lawn." He kept saying that this was not supposed to happen because we were supposed to go on a mission together.
The next days are kind of a blur. I know that I cried for a week straight and then at that point I was dry and could no longer cry. The day after Jim's diagnosis, we went to the Temple. I cried through the entire session as I watched him across the room from me. One day my brother brought up his motorcycle and had us go for a ride. We went up to the ski resort where Jim had learned to ski for the first time that year. It was spring, so there was no snow. We sat on a chairlift and talked about what a wonderful life we had had together and the fun we had skiing that winter. Jim was afraid that would be his last winter skiing with his family. If you know me, you know that I am very afraid of motorcycles. I will go on them, but I like to go slow. I can remember flying through the canyon on that day (with no helmet) not afraid. I can remember that I thought that I didn't care if I lived or died, as long as I was with Jim. Later, I obviously felt guilty about that because of the kids. When you are going through this, you can't really help how you feel. You just feel it. And, you go through the gambit of feelings.
After the diagnosis, we spent many days going in for tests and then just waiting. The waiting was terrible. We could deal with what we had to face, but we just wanted to know what kind of cancer he had and what the plan was. When we finally got answers, we learned that this kind of Lymphoma was not the kind you wanted if you were 42 years old like Jim. The doctors told us that we could treat the cancer but not cure it. They also told us that his cancer was stage 4 which means it was spread throughout his body and in his marrow. We were also told that the typical time a person has with this kind of cancer was 7-10 years. In a way we were relieved because of his experience with his friend and we weren't given months. But as young as Jim was, 7-10 years is not long enough to watch your children grow, have grandchildren, and go on a mission with your wife. That night, Jim decided he wanted to take each of the children off alone and explain to them on their own level about his cancer and what that meant to our family. At first I felt a little left out because I wasn't invited in on the conversation. Of course, I just let it be but, I decided that this was Jim's way of taking control over something that he had no control over. Each child responded differently. But, each of them responded in such a strong way and full of faith. Spencer at that time was 12 years old. He looked at his dad and said, "Don't worry Dad, We are a strong family and we can do this." That has held true to this day. I am so proud of all of the children. They all look to the future with great hope and faith. We have learned to look at things in a whole different light. We laugh alot. Sometimes we laugh at things that others might find morbid, but we have found humor to be very healing.
In the beginning, one night Jim's brother came up to our house and gave him a blessing. In the blessing, Jim was told he would live long enough to watch his children grow up. What that means we do not know. What is grown up? We only know that this gives us comfort. We don't worry so much about the time frame anymore, because we realize that nobody knows when it is their time. The doctors could tell you 10 years and you could live 6 months. They could tell you 6 months and you could live 10 years. Also, a healthy person could die in a car crash tomorrow. So, bottom line, it really doesn't matter what you are told. In a way, we feel very lucky because we have been given a gift. A gift to live each moment and appreciate each moment together.
On May 1, 2005, my birthday, before Jim had any chemo, his spleen ruptured. He woke up in the morning with severe pain. He actually wanted to go to the ER, so I knew something was wrong. As soon as the ER had a chance to evaluate him they told us he was going in for emergency surgery. I asked if we had time to get my brother here for a blessing, the doctor said no. I called home to tell the kids and my nephew Alan was there from Provo. He was sitting in church that morning and felt inspired to come and visit his Uncle Jim. He immediately came to the hospital and gave Jim a blessing. As they were wheeling Jim into the OR, I was suddenly scared that this was it. I was afraid that this was how I was going to lose him. He looked up at me then, and told me that just in case he didn't make it, my birthday presents were up in the closet. I was so mad at him for saying that. I kissed him goodbye and waited again. After the surgery, he spent 5 days in the hospital. He had to wait a month to start his chemo, because chemo does not allow wounds to heal.
After 6 months of Chemo, Jim's body and marrow were finally free of cancer. His strength was coming back and he felt much better. We even took a trip to Disneyland with the family. In January of 2006, Jim spent a week harvesting his own bone marrow for a transplant that we knew would happen when the cancer reoccurred.
In February of 2008, Jim's Lymphoma reoccurred. His doctors told him that he would have Chemo until the Cancer was down or gone and then go through a bone marrow transplant using Jim's own marrow. Now, Jim has gone through 4 Chemo therapy treatments and is ready for his transplant. The transplant is not a cure, but the hope is that it will buy him about 5 more years, at which point when his cancer returns we will look at the options at that time. With cancer, the more time you have alive, the more time there is for research and treatment options. At this time his siblings are being tested to see if they are a match for stem cells. When this transplant fails (cancer returns) Jim can do another transplant with donor stem cells. Hopefully, that is a ways down the road.
On Monday, June 9th Jim will go to LDS Hospital for pre admission work ups and have his Central Line put in.
On Tuesday, June 10th, He will be admitted to LDS hospital for the transplant. The first five days he will undergo extensive chemo therapy. The idea is to kill off his bone marrow. So, after this chemo, his ability to make any kind of cells is gone. On the sixth day, (Monday) he will have a day for the toxins to leave his body. On Tuesday, June 17th, He will be given back his own healthy stem cells (the ones we froze 2 years ago) through a transfusion. The remarkable thing is that the cells know to find their way back to the bone marrow. Once that happens they will begin to rebuild the marrow and make new cells. During this time, Jim is very susceptible to getting infections. He will need blood transfusions to keep his blood count up and antibiotics and anti fungals to keep him from getting sick. His total hospital stay should be about 3-4 weeks. At which time, we hope he can come home. The most crucial time after the transplant is the first 30 days, but he will have to be extremely careful for about 3 months.
We as a family know that this will not be an easy time. We know it will be brutal for Jim and we are so grateful that he is willing to go through this to spend more time with us here on earth. We also know that it will be hard on us as well. It is most disturbing to see someone that you have known to be strong all of their lives and someone that you love so much be so sick and weak. None of us though, including Jim, feel like this is the end. We feel like this is just a stepping stone in order to be able to spend more precious time together.
I will try to post each day while Jim is in the hospital in order to update those who love Jim and our family (which I know are many). Thank you so much for your love, support and prayers as we embark on this journey.
Jim had not been feeling well. He was feeling very weak and having trouble running for his physical fitness test. His doctor put him on iron, but it did not help. I remember he would come home from work and fall asleep on the couch. If you know Jim, you know that is strange because he is forever moving. Also, he would have severe stomach pains after he would eat. Later, we found out that his spleen was triple in size, so when he would eat his stomach had little room to expand and would cause terrible pain. He was also having night sweats which he did not tell me. His lymph nodes were enlarged but he really was not concerned because he thought they were fatty tumors. He has always had lipomas (fatty tumors) on his arms and back, so when he felt the enlarged lymph nodes he just thought he had more lipomas growing. Jim is one who never goes to the doctor and never misses work even when he is sick. On the day of his PT test at National Guard, he came home and looked terrible. I can remember thinking he was wasting away before my eyes. I was suddenly very worried as I realized the weight loss {without trying} , lack of energy and the grey coloring of his skin. We decided that day, he should go back to the doctor. I thought that maybe he had contracted something from an over seas trip he went on in January. The next day, he went back to his doctor. His doctor felt Jim's stomach and told him that he had a 10 centimeter mass. He ordered a CT scan for the next day. Right after the scan, the Radiologist met with us and showed us the scan. He told us that it looked like Lymphoma and that it looked pretty wide spread. We went home in shock. Jim had had a very good friend die of Lymphoma a few years before. It had taken his friend in 2 months so we were terrified. This definitely did not fit in our plans for our future. When we got home Jim went out and mowed the lawn. He was so weak, that he came in the house and sat on the chair and cried. He said, "I think this is the last time, I will be able to mow the lawn." He kept saying that this was not supposed to happen because we were supposed to go on a mission together.
The next days are kind of a blur. I know that I cried for a week straight and then at that point I was dry and could no longer cry. The day after Jim's diagnosis, we went to the Temple. I cried through the entire session as I watched him across the room from me. One day my brother brought up his motorcycle and had us go for a ride. We went up to the ski resort where Jim had learned to ski for the first time that year. It was spring, so there was no snow. We sat on a chairlift and talked about what a wonderful life we had had together and the fun we had skiing that winter. Jim was afraid that would be his last winter skiing with his family. If you know me, you know that I am very afraid of motorcycles. I will go on them, but I like to go slow. I can remember flying through the canyon on that day (with no helmet) not afraid. I can remember that I thought that I didn't care if I lived or died, as long as I was with Jim. Later, I obviously felt guilty about that because of the kids. When you are going through this, you can't really help how you feel. You just feel it. And, you go through the gambit of feelings.
After the diagnosis, we spent many days going in for tests and then just waiting. The waiting was terrible. We could deal with what we had to face, but we just wanted to know what kind of cancer he had and what the plan was. When we finally got answers, we learned that this kind of Lymphoma was not the kind you wanted if you were 42 years old like Jim. The doctors told us that we could treat the cancer but not cure it. They also told us that his cancer was stage 4 which means it was spread throughout his body and in his marrow. We were also told that the typical time a person has with this kind of cancer was 7-10 years. In a way we were relieved because of his experience with his friend and we weren't given months. But as young as Jim was, 7-10 years is not long enough to watch your children grow, have grandchildren, and go on a mission with your wife. That night, Jim decided he wanted to take each of the children off alone and explain to them on their own level about his cancer and what that meant to our family. At first I felt a little left out because I wasn't invited in on the conversation. Of course, I just let it be but, I decided that this was Jim's way of taking control over something that he had no control over. Each child responded differently. But, each of them responded in such a strong way and full of faith. Spencer at that time was 12 years old. He looked at his dad and said, "Don't worry Dad, We are a strong family and we can do this." That has held true to this day. I am so proud of all of the children. They all look to the future with great hope and faith. We have learned to look at things in a whole different light. We laugh alot. Sometimes we laugh at things that others might find morbid, but we have found humor to be very healing.
In the beginning, one night Jim's brother came up to our house and gave him a blessing. In the blessing, Jim was told he would live long enough to watch his children grow up. What that means we do not know. What is grown up? We only know that this gives us comfort. We don't worry so much about the time frame anymore, because we realize that nobody knows when it is their time. The doctors could tell you 10 years and you could live 6 months. They could tell you 6 months and you could live 10 years. Also, a healthy person could die in a car crash tomorrow. So, bottom line, it really doesn't matter what you are told. In a way, we feel very lucky because we have been given a gift. A gift to live each moment and appreciate each moment together.
On May 1, 2005, my birthday, before Jim had any chemo, his spleen ruptured. He woke up in the morning with severe pain. He actually wanted to go to the ER, so I knew something was wrong. As soon as the ER had a chance to evaluate him they told us he was going in for emergency surgery. I asked if we had time to get my brother here for a blessing, the doctor said no. I called home to tell the kids and my nephew Alan was there from Provo. He was sitting in church that morning and felt inspired to come and visit his Uncle Jim. He immediately came to the hospital and gave Jim a blessing. As they were wheeling Jim into the OR, I was suddenly scared that this was it. I was afraid that this was how I was going to lose him. He looked up at me then, and told me that just in case he didn't make it, my birthday presents were up in the closet. I was so mad at him for saying that. I kissed him goodbye and waited again. After the surgery, he spent 5 days in the hospital. He had to wait a month to start his chemo, because chemo does not allow wounds to heal.
After 6 months of Chemo, Jim's body and marrow were finally free of cancer. His strength was coming back and he felt much better. We even took a trip to Disneyland with the family. In January of 2006, Jim spent a week harvesting his own bone marrow for a transplant that we knew would happen when the cancer reoccurred.
In February of 2008, Jim's Lymphoma reoccurred. His doctors told him that he would have Chemo until the Cancer was down or gone and then go through a bone marrow transplant using Jim's own marrow. Now, Jim has gone through 4 Chemo therapy treatments and is ready for his transplant. The transplant is not a cure, but the hope is that it will buy him about 5 more years, at which point when his cancer returns we will look at the options at that time. With cancer, the more time you have alive, the more time there is for research and treatment options. At this time his siblings are being tested to see if they are a match for stem cells. When this transplant fails (cancer returns) Jim can do another transplant with donor stem cells. Hopefully, that is a ways down the road.
On Monday, June 9th Jim will go to LDS Hospital for pre admission work ups and have his Central Line put in.
On Tuesday, June 10th, He will be admitted to LDS hospital for the transplant. The first five days he will undergo extensive chemo therapy. The idea is to kill off his bone marrow. So, after this chemo, his ability to make any kind of cells is gone. On the sixth day, (Monday) he will have a day for the toxins to leave his body. On Tuesday, June 17th, He will be given back his own healthy stem cells (the ones we froze 2 years ago) through a transfusion. The remarkable thing is that the cells know to find their way back to the bone marrow. Once that happens they will begin to rebuild the marrow and make new cells. During this time, Jim is very susceptible to getting infections. He will need blood transfusions to keep his blood count up and antibiotics and anti fungals to keep him from getting sick. His total hospital stay should be about 3-4 weeks. At which time, we hope he can come home. The most crucial time after the transplant is the first 30 days, but he will have to be extremely careful for about 3 months.
We as a family know that this will not be an easy time. We know it will be brutal for Jim and we are so grateful that he is willing to go through this to spend more time with us here on earth. We also know that it will be hard on us as well. It is most disturbing to see someone that you have known to be strong all of their lives and someone that you love so much be so sick and weak. None of us though, including Jim, feel like this is the end. We feel like this is just a stepping stone in order to be able to spend more precious time together.
I will try to post each day while Jim is in the hospital in order to update those who love Jim and our family (which I know are many). Thank you so much for your love, support and prayers as we embark on this journey.
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