Finally going pretty good. At least as well as could be expected. John has done better every day and is making huge improvements. It is interesting how his mind and body have to be retrained to work together. He sees physical therapy 2-3 times every day. He walks with a walker, but is doing great. He is walking pretty fast and doesn't shuffle and drag his feet any more. He has been working on keeping his head up and looking around when he is walking. He had lost a ton of muscle and he is doing exercises to help with that. Speech therapy has come in every day to watch him eat. He was having trouble swallowing. That is going good now and he advanced from soft foods to almost normal food. Just can't eat anything really hard right now. He is talking great. Sometimes he will stop and think for a second. He has been pretty tired lately though. All of his numbers are slowly moving in the right direction. Last night he did need a platelet transfusion. He feels stronger and stronger but I still help him shower.
He has hated having a feeding tube in. They keep getting clogged from his meds. It has been working good for a few days. Today it got clogged again. After trying EVERYTHING and 2 nurses, Dr. Konopa gave the ok to just have it pulled out!!!! BUT he has to eat now and has to swallow his pills. He said he will do anything to keep that thing out. So, let hope it is a good thing that it got clogged :). He doesn't have trouble eating and gratefully has not been nauseas or thrown up, food just does not taste very good. He had been told to look at food as medicine - just something he has to do, even if it doesn't taste good. So far today, he has done pretty good.
One thing we did not foresee was that John is having anxiety over being alone. After feeling trapped in his head for 2 weeks, he is kind of scared to be alone. Although now he can think clearly enough to use the nurses call button at least. He still is pretty weak and can't just hop out of bed and put a movie in. And because he is still unstable he has to have someone go with him to the bathroom. I am typically here every day from 8:30-6. The hospital brings in a sitter every night. At first he hated it, but now he likes it and does not want it to stop. So, he might be alone for like 1 hour in the evenings and one hour in the mornings. He is doing ok with that. He hopes to be home in about a week. I hope so too.
He has been thrilled to have visitors. He cried to see the kids on Sunday! And our friends the Crans have come a few times. He was also surprised by a former missionary companion that came to visit last night! It made his day.
We love love love this floor and can not say enough good about the staff. His Dr's are fabulous and so patient. The nurses and aids are great! We could not ask for better care for him. It is weird to have this home away from home! We are so appreciative of everyone here. We are making even more friends with other patients and love them all.
Tuesday, July 9, 2013
Sunday, July 7, 2013
Some Improvement
So so grateful to have some good news to report. We had some really really awful days. Some really scary days, and some real emotional days. John was pretty stagnant for a while. It was not fun at all. Every day his numbers just hung around the same place. After about 2 days he kind of got tired of "squeeze my hand if ..." That worked sometimes but not very often. For 2 days John and I just sat and cried. I know he wanted to tell me something and he couldn't. He would hear me talk to other people and I would say how hard this is and he would just cry. Every time I left he would cry. It was awful. I could tell his brain was starting to work a little better because he was responding through crying.
I seriously did not know if I could take it another day. I didn't know how to help John, I didn't know how to help myself. I couldn't eat or sleep. All I did was cry. I couldn't take care of my kids. I was beyond the end of my rope. I wanted to give up, but couldn't. But I couldn't function either. I was failing at everything I tried to do. I did not know what to do. Thursday our best friends from CA drove out. On Friday Erick and Johns brother Chris came and gave John a blessing. They asked if I wanted one and I said yes. John was pretty out of it and could not even thank them. It was his third blessing in less than 2 weeks. Every blessing said he was still needed on earth and The Lord had things for him to do. My blessings tell me to be patient.
Yesterday morning I was driving to the hospital. I am not an out loud prayer. But ever since John has been back in the hospital I usually pray out loud all the way to and from the hospital. Well, I cry most of the time. But I talk to God. Saturday morning was different. I pleaded with The Lord and prayed and prayed harder than I ever have my whole life. It was an amazing experience. I felt The Lord very close to me. I have felt very close to him these past 2 weeks and know he has been blessing me. But it was even stronger. I kind of told him I couldn't do it any more, my patience is gone and I knew he could help John. It is too personal for me to share more here. But I felt so much peace come over me.
I got to the hospital and was told John was feeling better and was talking. I had heard that a few times before and then when I come he is not like that. I walked in his room and he was pretty sleepy. But he said hi to me. But my prayer and many others had truly been answered. He was walking 100 times better and was able to talk to us all day. He even joked around. He went on 2 walks with physical therapy. He could answer every question all day. I just kept crying. He was tired and he said it hurt his head to talk but he could do it. His brother Jeff stopped by to say Hi with his 2 boys and John just cried. It was a true blessing that we both really needed.
He is so so far from regular John. And no where near close to going home. But just to be able to communicate with him is a huge step. His liver function and ammonia took a good drop down yesterday which may have something to do with him being able to talk better. He said when he woke up yesterday morning he felt a million times better. I know we have a long road ahead of this but it will be much easier having John able to talk.
He was still about the same this morning, maybe a little better. He seems to have more energy late after noon and evenings. He does not sleep well at nights so he is pretty tired in the mornings. Later today the kids are coming by and he can't wait. I am grateful today for a loving and understanding Father in Heaven. I am so aware of his hand in all of this and His grace.
I seriously did not know if I could take it another day. I didn't know how to help John, I didn't know how to help myself. I couldn't eat or sleep. All I did was cry. I couldn't take care of my kids. I was beyond the end of my rope. I wanted to give up, but couldn't. But I couldn't function either. I was failing at everything I tried to do. I did not know what to do. Thursday our best friends from CA drove out. On Friday Erick and Johns brother Chris came and gave John a blessing. They asked if I wanted one and I said yes. John was pretty out of it and could not even thank them. It was his third blessing in less than 2 weeks. Every blessing said he was still needed on earth and The Lord had things for him to do. My blessings tell me to be patient.
Yesterday morning I was driving to the hospital. I am not an out loud prayer. But ever since John has been back in the hospital I usually pray out loud all the way to and from the hospital. Well, I cry most of the time. But I talk to God. Saturday morning was different. I pleaded with The Lord and prayed and prayed harder than I ever have my whole life. It was an amazing experience. I felt The Lord very close to me. I have felt very close to him these past 2 weeks and know he has been blessing me. But it was even stronger. I kind of told him I couldn't do it any more, my patience is gone and I knew he could help John. It is too personal for me to share more here. But I felt so much peace come over me.
I got to the hospital and was told John was feeling better and was talking. I had heard that a few times before and then when I come he is not like that. I walked in his room and he was pretty sleepy. But he said hi to me. But my prayer and many others had truly been answered. He was walking 100 times better and was able to talk to us all day. He even joked around. He went on 2 walks with physical therapy. He could answer every question all day. I just kept crying. He was tired and he said it hurt his head to talk but he could do it. His brother Jeff stopped by to say Hi with his 2 boys and John just cried. It was a true blessing that we both really needed.
He is so so far from regular John. And no where near close to going home. But just to be able to communicate with him is a huge step. His liver function and ammonia took a good drop down yesterday which may have something to do with him being able to talk better. He said when he woke up yesterday morning he felt a million times better. I know we have a long road ahead of this but it will be much easier having John able to talk.
He was still about the same this morning, maybe a little better. He seems to have more energy late after noon and evenings. He does not sleep well at nights so he is pretty tired in the mornings. Later today the kids are coming by and he can't wait. I am grateful today for a loving and understanding Father in Heaven. I am so aware of his hand in all of this and His grace.
Wednesday, July 3, 2013
Let's not talk about it
I don't even really know where to begin. But I am trying to blog our journey, so here goes.
11 days ago I brought John into the hospital because he had been throwing up for 2 days. I did not know how bad it all was. The first issue was he was severely dehydrated. His creatinine level was at 389, should be below 100. They got those fluids going into him super fast. His kidneys were pretty slow to respond, but did start working. Dialysis was talked about several times, but he was able to make it through that and his kidneys are doing pretty good now. He was having trouble peeing so he did have to have a catheter in. He hated it!!! After a couple days he begged and they took it out.
Since we had actually come in because of puking they did decide to do an endoscopy to look at his stomach after a few days. But in the mean time his body was freaking out on several levels. His numbers were all over the board. We assumed mostly from the dehydration. Everything was going in the wrong direction. His platelets were too low for the endoscopy and he had a transfusion and his count went down. It was weird. Also his blood was too thin so he needed FFP (plasma). And his tachro level was not going down. He has had more trasnfusions these past 11 days than he has had in 9 months. Tachro is a med he started after his allo transplant that he should take twice a day. After several days it was still too high and he had not taken any more. That was a big concern. It took 2 days to get enough transfusions and numbers right to have the endoscopy. I was literally with him in the bay waiting for the procedure when they got a call saying platelets still weren't high enough. I told the dr I was not comfortable with it being done and luckily he agreed. The endoscopy was done and results were some moderate inflammation with GVH in his stomach. Kind of sucks, but is treated with steroids and is usually not a huge deal. It seems to be under control now.
After being here a day John started hallucinating a little - like when he was funny on Benadryl. It would come and go. Every one figured it was just extra toxins from his kidneys not working. For a short while it was funny. Then he started talking nonsense a lot. Then he was seeing things. After about 2 days nothing was funny about it. He had rarely any real John in him and he was sleeping a ton and never made sense. We all realized his mental state was now a big concern. And on top of that his liver function was getting worse and worse. Every day was so so hard and I told myself "tomorrow will be better". And every tomorrow brought worse news. Every day was awful. It felt like anything that could go wrong was going wrong. The liver seems to be the worst place to have issues. It is a pretty hearty organ though.
John was here for his birthday and missed the whole family reunion. Everyone came to say hi to him on his birthday though. I think it cheered him up a little. He actually asked me to not bring the kids because he didn't want them to see him this way. I brought them anyways just for a few minutes. The kids understand that daddy doesn't feel good and that his body is not processing some of his meds right and he has too many floating around in his body. And that makes him tired and loopy. He also missed his bone marrow drive that he has been so so excited about. On the day of he said "oh ya, I forgot that was today". Because of the GVH in his stomach he was not allowed to eat, only drink. So I brought him snapples and dr pepper for his birthday. That night he actually called me (which surprised me that he was able to focus enough to do that). But he asked me why I forgot about him and it broke my heart. By this point we actually had a family member here 24/7. I had been here all day and he did not remember that.
If I can remember right he has had an endoscopy, and MRI on his brain twice, an MRA, a liver biopsy, an ultrasound on his liver twice, and now has a feeding tube in (actually twice because the first one got clogged). And just a side not, watching your husband get a feeding tube in in is hell when he can't communicate and you have to try and do it for him. Oh wait, he has also had a spinal tap and an EEG.
So, between the kidneys failing, GVH in stomach, liver failing and Johns mental state I feel like at times it is a living hell. I have never been through anything so hard. This is worse than losing both parents, infertility, failed adoptions and Johns diagnosis. We all believe that John can hear and understand everything. But his brain is being slow to respond. On paper he does not look too bad. His numbers are all ok. Everything is moving in the right direction. His kidneys are fine, his stomach GVH seems to be under control. Actually just got results of liver biopsy and there is nothing there to be concerned about. No GVH and no VOD. That is great news!!! Problem is we are waiting for these meds to clear through his liver and for John to come back to us.
It is literally hell to watch your spouse like this. He can't shower himself or dress him self. Physical therapy comes every day just to help him walk one short lap. Last night I decided to try communicating with some sign language and "squeeze my hand if ..." And most of the time it works. Sometimes he will roll his eyes at me if I ask a stupid question or laugh or smile. Last night when I started that he started talking too. It lasted about an hour and he was all smiles and telling jokes. I knew it wouldn't last but it was so good to see a little of John back for a while. This is so so exhausting for all of us. I am sure John feels like he is going through the worst of it. Because I really think he hears everything and is so frustrated that be can't answer and communicate back to us. I am tired of trying to help him communicate too. I have never been so scared my whole life. I hate hate seeing John like this. It is the worst feeling ever.
There are many many things I am not blogging about. Mostly because its is too personal and I don't want to relive how bad it has been. I dread the day John asks me where 2 weeks of his life went. The day I have to relive this and tell him. And I might tell him "you were in and our of it, mostly out. It was super scary and I will let you know when I am ready to talk about it". But on the other hand I can't wait for John to ask me that because that will mean John is back.
I can't say enough fabulous things about every here on east 8! I love everyone here. Everyone hugs me, nurses bring me chocolate, I can cry to anyone. The Dr's call me at home if I am not here and they have something to tell me, John has had all the best nurses ( Jessica, Ashley, Whitney, John, Kim, Becky, Natalia). Whoever I ask for they give him. Everyone here is fabulous. And these Dr's are trying everything they possibly can to help John. They are so patient and helpful. I really really feel like John is there and he is fine and he will be back soon. We have both had blessings and I was told to be patient (not my favorite thing to be).
Again we have been so blessed with great family, neighbors and friends. Everyone is so helpful and supportive. I actually knew about a month ago that John would be in the hospital right now. I know that sounds weird. But I looked at my calendar and realized that we had a family reunion, then my sister Emily would be here for a few days, then Chris and Emily would be here then the Crans are coming. So, I knew they were all coming because I would need them. I never said anything to John.
I will try to blog more often, because I do want this for John to read too. We will make it through this.
11 days ago I brought John into the hospital because he had been throwing up for 2 days. I did not know how bad it all was. The first issue was he was severely dehydrated. His creatinine level was at 389, should be below 100. They got those fluids going into him super fast. His kidneys were pretty slow to respond, but did start working. Dialysis was talked about several times, but he was able to make it through that and his kidneys are doing pretty good now. He was having trouble peeing so he did have to have a catheter in. He hated it!!! After a couple days he begged and they took it out.
Since we had actually come in because of puking they did decide to do an endoscopy to look at his stomach after a few days. But in the mean time his body was freaking out on several levels. His numbers were all over the board. We assumed mostly from the dehydration. Everything was going in the wrong direction. His platelets were too low for the endoscopy and he had a transfusion and his count went down. It was weird. Also his blood was too thin so he needed FFP (plasma). And his tachro level was not going down. He has had more trasnfusions these past 11 days than he has had in 9 months. Tachro is a med he started after his allo transplant that he should take twice a day. After several days it was still too high and he had not taken any more. That was a big concern. It took 2 days to get enough transfusions and numbers right to have the endoscopy. I was literally with him in the bay waiting for the procedure when they got a call saying platelets still weren't high enough. I told the dr I was not comfortable with it being done and luckily he agreed. The endoscopy was done and results were some moderate inflammation with GVH in his stomach. Kind of sucks, but is treated with steroids and is usually not a huge deal. It seems to be under control now.
After being here a day John started hallucinating a little - like when he was funny on Benadryl. It would come and go. Every one figured it was just extra toxins from his kidneys not working. For a short while it was funny. Then he started talking nonsense a lot. Then he was seeing things. After about 2 days nothing was funny about it. He had rarely any real John in him and he was sleeping a ton and never made sense. We all realized his mental state was now a big concern. And on top of that his liver function was getting worse and worse. Every day was so so hard and I told myself "tomorrow will be better". And every tomorrow brought worse news. Every day was awful. It felt like anything that could go wrong was going wrong. The liver seems to be the worst place to have issues. It is a pretty hearty organ though.
John was here for his birthday and missed the whole family reunion. Everyone came to say hi to him on his birthday though. I think it cheered him up a little. He actually asked me to not bring the kids because he didn't want them to see him this way. I brought them anyways just for a few minutes. The kids understand that daddy doesn't feel good and that his body is not processing some of his meds right and he has too many floating around in his body. And that makes him tired and loopy. He also missed his bone marrow drive that he has been so so excited about. On the day of he said "oh ya, I forgot that was today". Because of the GVH in his stomach he was not allowed to eat, only drink. So I brought him snapples and dr pepper for his birthday. That night he actually called me (which surprised me that he was able to focus enough to do that). But he asked me why I forgot about him and it broke my heart. By this point we actually had a family member here 24/7. I had been here all day and he did not remember that.
If I can remember right he has had an endoscopy, and MRI on his brain twice, an MRA, a liver biopsy, an ultrasound on his liver twice, and now has a feeding tube in (actually twice because the first one got clogged). And just a side not, watching your husband get a feeding tube in in is hell when he can't communicate and you have to try and do it for him. Oh wait, he has also had a spinal tap and an EEG.
So, between the kidneys failing, GVH in stomach, liver failing and Johns mental state I feel like at times it is a living hell. I have never been through anything so hard. This is worse than losing both parents, infertility, failed adoptions and Johns diagnosis. We all believe that John can hear and understand everything. But his brain is being slow to respond. On paper he does not look too bad. His numbers are all ok. Everything is moving in the right direction. His kidneys are fine, his stomach GVH seems to be under control. Actually just got results of liver biopsy and there is nothing there to be concerned about. No GVH and no VOD. That is great news!!! Problem is we are waiting for these meds to clear through his liver and for John to come back to us.
It is literally hell to watch your spouse like this. He can't shower himself or dress him self. Physical therapy comes every day just to help him walk one short lap. Last night I decided to try communicating with some sign language and "squeeze my hand if ..." And most of the time it works. Sometimes he will roll his eyes at me if I ask a stupid question or laugh or smile. Last night when I started that he started talking too. It lasted about an hour and he was all smiles and telling jokes. I knew it wouldn't last but it was so good to see a little of John back for a while. This is so so exhausting for all of us. I am sure John feels like he is going through the worst of it. Because I really think he hears everything and is so frustrated that be can't answer and communicate back to us. I am tired of trying to help him communicate too. I have never been so scared my whole life. I hate hate seeing John like this. It is the worst feeling ever.
There are many many things I am not blogging about. Mostly because its is too personal and I don't want to relive how bad it has been. I dread the day John asks me where 2 weeks of his life went. The day I have to relive this and tell him. And I might tell him "you were in and our of it, mostly out. It was super scary and I will let you know when I am ready to talk about it". But on the other hand I can't wait for John to ask me that because that will mean John is back.
I can't say enough fabulous things about every here on east 8! I love everyone here. Everyone hugs me, nurses bring me chocolate, I can cry to anyone. The Dr's call me at home if I am not here and they have something to tell me, John has had all the best nurses ( Jessica, Ashley, Whitney, John, Kim, Becky, Natalia). Whoever I ask for they give him. Everyone here is fabulous. And these Dr's are trying everything they possibly can to help John. They are so patient and helpful. I really really feel like John is there and he is fine and he will be back soon. We have both had blessings and I was told to be patient (not my favorite thing to be).
Again we have been so blessed with great family, neighbors and friends. Everyone is so helpful and supportive. I actually knew about a month ago that John would be in the hospital right now. I know that sounds weird. But I looked at my calendar and realized that we had a family reunion, then my sister Emily would be here for a few days, then Chris and Emily would be here then the Crans are coming. So, I knew they were all coming because I would need them. I never said anything to John.
I will try to blog more often, because I do want this for John to read too. We will make it through this.
Monday, June 24, 2013
I guess 9 days was enough
Back at LDS Hospital. You know, I was pretty sure that at some point he would be readmitted. But really did not think it would be this soon or for the reason of DEHYDRATION!
John felt really good when he first got home. He was still drinking most of his calories and was doing ok with that. After a few days he started getting nauseas. He threw up like once a day for a few days. He called the clinic here and they said once a day is not a big deal. He was getting more and more tired and Friday threw up a few times. Saturday even more. He called and talked to a PA. She said it did not sound awful enough to come in but if it got worse to call. He threw up more Saturday and threw up everything Sunday morning. He was so tired, off balance and shaky. I called the hospital at about 10 am. Tony ( the clinic nurse) said to bring him in. So I quickly got ready and got the kids ready for church. Then we came to the clinic. They did vitals and his blood pressure was super low. 85/50. Tony knew immediately he was dehydrated and put him on fluids and said he would be admitted. His lab work came back quickly and his numbers were WAY messed up. Kidney levels were super super high, platelets were way down.
They put fluids in him as fast as they could and did a ton more blood work. So, the funny thing is that he has not thrown up or been nauseas since being here. Obviously the real problem is the dehydration. His kidneys were hit really hard in 6 days. One week ago they were totally normal. He is doing ok and is slowly getting a little better. Not as fast as I would like though. His creatinine levels are dropping but very slowly. He should be fully hydrated now with all the fluids they are putting in him. His out put is not enough though. He has not been able to pee at all. They had to insert a catheter last night to empty his bladder. Now he has one in for good. His kidneys are processing some urine but not everything is getting through. He is seeing a nephrologist ( kidney dr) daily. Today he basically said to give John more fluids and see what happens.
His platelets keep going down so that is something to watch too. Most likely an infection, but still waiting for the results of the blood culture to see what that says. The good news is that we came in yesterday pretty sure he had GVHD of the stomach. But now are pretty sure his stomach is totally fine, no GVHD, just severe dehydration. John had not peed in 2 days, but had not told me. I though it had been less than a day. When we got here yesterday he told me he didn't remember the last time he peed!!
So now we are hoping for his kidneys to start working properly and he wants out of here Thursday.
John felt really good when he first got home. He was still drinking most of his calories and was doing ok with that. After a few days he started getting nauseas. He threw up like once a day for a few days. He called the clinic here and they said once a day is not a big deal. He was getting more and more tired and Friday threw up a few times. Saturday even more. He called and talked to a PA. She said it did not sound awful enough to come in but if it got worse to call. He threw up more Saturday and threw up everything Sunday morning. He was so tired, off balance and shaky. I called the hospital at about 10 am. Tony ( the clinic nurse) said to bring him in. So I quickly got ready and got the kids ready for church. Then we came to the clinic. They did vitals and his blood pressure was super low. 85/50. Tony knew immediately he was dehydrated and put him on fluids and said he would be admitted. His lab work came back quickly and his numbers were WAY messed up. Kidney levels were super super high, platelets were way down.
They put fluids in him as fast as they could and did a ton more blood work. So, the funny thing is that he has not thrown up or been nauseas since being here. Obviously the real problem is the dehydration. His kidneys were hit really hard in 6 days. One week ago they were totally normal. He is doing ok and is slowly getting a little better. Not as fast as I would like though. His creatinine levels are dropping but very slowly. He should be fully hydrated now with all the fluids they are putting in him. His out put is not enough though. He has not been able to pee at all. They had to insert a catheter last night to empty his bladder. Now he has one in for good. His kidneys are processing some urine but not everything is getting through. He is seeing a nephrologist ( kidney dr) daily. Today he basically said to give John more fluids and see what happens.
His platelets keep going down so that is something to watch too. Most likely an infection, but still waiting for the results of the blood culture to see what that says. The good news is that we came in yesterday pretty sure he had GVHD of the stomach. But now are pretty sure his stomach is totally fine, no GVHD, just severe dehydration. John had not peed in 2 days, but had not told me. I though it had been less than a day. When we got here yesterday he told me he didn't remember the last time he peed!!
So now we are hoping for his kidneys to start working properly and he wants out of here Thursday.
Friday, June 21, 2013
Been HOME for 1 week!
SO SO glad to have John home. Hospital living is crazy!!! We all kind of get used to it, but it is not the best. Well, it is the best for John and what he needs :)
He probably broke some sort of record and was home having only been in the hospital for 25 days for his Allogeneic transplant. Only 4 days longer than for his Autologus transplant. He did awesome. He also never went on TPN which was one of his goals. (and super rare, like 1 out of every 30 patients with an Allo transplant can manage to do that). He came home with a good amount of energy and wanting to do way too much. He does nap every day and sleeps about 10 hours a night. And at least at home he gets to sleep without being interrupted every 2-4 hours. He is having issues eating food though. When he started getting mouth sores he drank all his calories with Ensure and Boost drinks. He did lose about 20 pounds and the last time he weighed this little was probably about 15 years ago. I am just glad that he had the weight to lose and was not skin and bones going into this. And ya, he is pretty much skin and bones now. So, the drinks were great. The chemo has ruined his taste buds (again) and nothing tastes good at all. Last time baked potatoes were kind of his go to food. No, nothing tastes good. But for some reason the drinks are ok. He is gratefully maintaining his weight of 185 pounds but only consuming about 1500 calories a day. He does try food every day, he says it all tastes like dirt or cat puke! We are also walking about 1 mile every night. Hopefully soon we can increase it to 1.5 miles.
We are all taking it on day at a time. John is able to do some things around the house, but that list is limited. He has NO immunity and has to be very careful. He is not allowed to mow, weed, dust, vacuum. He is allowed to do laundry :) He should not go any where public for a long time (months). And should not be out in the sun. He can sun burn super easily right now and that can bring out T cells and that can cause GVHD! So far he does not have any GVHD. Which is pretty much good. You kind of want a little bit because that also means you have GHM (graft vs myeloma). Which you do want. You do want the donors cells to be fighting the cancer cells. If he does get it we just hope it is easy to treat skin rashes :)
All of our lives have changed a lot. We have to be even more careful with germs and hand washing than we were before. In about 1 -2 years John will actually be re immunized as if he were a baby. Since being home we had 2 kids with fevers earlier this week and last night Abby was puking and has a fever!!! It is crazy how much our kids have been sick since John has had cancer. I pretty much quarantine the kids to their rooms and sanitize like crazy. I have to clean all of our ceiling fans twice a week, sanitize all 3 bathrooms every day (mine and Johns usually twice a day), sanitize the kitchen once a day, dust the whole house once a week. And John can not be in the room when I dust or vacuum. Every time we come in the house we all wash our hands. I have to wash our bed sheets twice a week. I thought I was pretty good at cleaning before, but I was not this good.
For now John has an appointment once a week - probably for a very long time it will be at least once a week. They do a full blood work up test and check vitals and he meets with a Dr. and a PA. Every thing has been pretty good so far. A big thing to watch is his liver! But in one of the Dr.'s words they will "watch him like a hawk" :) We LOVE all of John's Dr.'s. They are great and super helpful and are doing everything they can for John.
We recently realized how blessed we are to live here. After you have an Allo transplant you HAVE to live within 45 minutes of LDS Hospital for at least 100 days past transplant. The main reason is that if you go septic you could die in that amount of time. They want you close if you need them. They do not want you to go to any other ER or hospital. I have been told to not call 911, but just put him in my car, call East 8 and get him there. The Dr.'s there do not like other Dr.'s seeing their patients. They know the history and they will be the ones to help! Yes patients do go to ICU sometimes. But East 8 will still have a Dr and PA check on you daily. We live 20-25 min from the hospital - we are so glad we did not have to move closer.
John is excited for his 41st birthday next week. He is hosting a bone marrow drive on his birthday. He is super excited about it and his goal is to add 100 people to the registry. I can not believe how much has happened in this past year. Last year for his 40th birthday I surprised him and took him to San Francisco for the weekend and to a Giants game! That seems like forever ago some times and other times seems like it just happened. Our new goal is to go to Paris for my 40th Birthday!
Now our trick is to keep John home and out of the hospital. But any fever, flu, pneumonia symptoms, or big drops or raises in his counts and he will be admitted. Getting past the first 100 days is the toughest part. We are at 22 days past transplant!!
He probably broke some sort of record and was home having only been in the hospital for 25 days for his Allogeneic transplant. Only 4 days longer than for his Autologus transplant. He did awesome. He also never went on TPN which was one of his goals. (and super rare, like 1 out of every 30 patients with an Allo transplant can manage to do that). He came home with a good amount of energy and wanting to do way too much. He does nap every day and sleeps about 10 hours a night. And at least at home he gets to sleep without being interrupted every 2-4 hours. He is having issues eating food though. When he started getting mouth sores he drank all his calories with Ensure and Boost drinks. He did lose about 20 pounds and the last time he weighed this little was probably about 15 years ago. I am just glad that he had the weight to lose and was not skin and bones going into this. And ya, he is pretty much skin and bones now. So, the drinks were great. The chemo has ruined his taste buds (again) and nothing tastes good at all. Last time baked potatoes were kind of his go to food. No, nothing tastes good. But for some reason the drinks are ok. He is gratefully maintaining his weight of 185 pounds but only consuming about 1500 calories a day. He does try food every day, he says it all tastes like dirt or cat puke! We are also walking about 1 mile every night. Hopefully soon we can increase it to 1.5 miles.
We are all taking it on day at a time. John is able to do some things around the house, but that list is limited. He has NO immunity and has to be very careful. He is not allowed to mow, weed, dust, vacuum. He is allowed to do laundry :) He should not go any where public for a long time (months). And should not be out in the sun. He can sun burn super easily right now and that can bring out T cells and that can cause GVHD! So far he does not have any GVHD. Which is pretty much good. You kind of want a little bit because that also means you have GHM (graft vs myeloma). Which you do want. You do want the donors cells to be fighting the cancer cells. If he does get it we just hope it is easy to treat skin rashes :)
All of our lives have changed a lot. We have to be even more careful with germs and hand washing than we were before. In about 1 -2 years John will actually be re immunized as if he were a baby. Since being home we had 2 kids with fevers earlier this week and last night Abby was puking and has a fever!!! It is crazy how much our kids have been sick since John has had cancer. I pretty much quarantine the kids to their rooms and sanitize like crazy. I have to clean all of our ceiling fans twice a week, sanitize all 3 bathrooms every day (mine and Johns usually twice a day), sanitize the kitchen once a day, dust the whole house once a week. And John can not be in the room when I dust or vacuum. Every time we come in the house we all wash our hands. I have to wash our bed sheets twice a week. I thought I was pretty good at cleaning before, but I was not this good.
For now John has an appointment once a week - probably for a very long time it will be at least once a week. They do a full blood work up test and check vitals and he meets with a Dr. and a PA. Every thing has been pretty good so far. A big thing to watch is his liver! But in one of the Dr.'s words they will "watch him like a hawk" :) We LOVE all of John's Dr.'s. They are great and super helpful and are doing everything they can for John.
We recently realized how blessed we are to live here. After you have an Allo transplant you HAVE to live within 45 minutes of LDS Hospital for at least 100 days past transplant. The main reason is that if you go septic you could die in that amount of time. They want you close if you need them. They do not want you to go to any other ER or hospital. I have been told to not call 911, but just put him in my car, call East 8 and get him there. The Dr.'s there do not like other Dr.'s seeing their patients. They know the history and they will be the ones to help! Yes patients do go to ICU sometimes. But East 8 will still have a Dr and PA check on you daily. We live 20-25 min from the hospital - we are so glad we did not have to move closer.
John is excited for his 41st birthday next week. He is hosting a bone marrow drive on his birthday. He is super excited about it and his goal is to add 100 people to the registry. I can not believe how much has happened in this past year. Last year for his 40th birthday I surprised him and took him to San Francisco for the weekend and to a Giants game! That seems like forever ago some times and other times seems like it just happened. Our new goal is to go to Paris for my 40th Birthday!
Now our trick is to keep John home and out of the hospital. But any fever, flu, pneumonia symptoms, or big drops or raises in his counts and he will be admitted. Getting past the first 100 days is the toughest part. We are at 22 days past transplant!!
Saturday, June 8, 2013
Day 10 ( 19 days in hospital)
Well, things are going ok. John was able to switch rooms yesterday and that was fabulous. He was tired of staring at a brick wall. Two and a half weeks of that got really old. He was actually waiting for a certain room though. But this one opened up. He looked at it and wanted it. It has 2 huge windows and he loves it. So nice to have a change of scenery.
He has more mouth sores :( Could be worse though. But bad enough to be on a pain pump with a constant drip of dilaudid. It definitely helps. His tummy pain is completely gone :) He has been "eating" ok. His calories actually consist mostly of ensure drinks and shakes. But, he's getting about 1500 calories a day so that is good. Although the dietitians would love it to be closer to 2000.
The good news is that his counts have started coming up. Pretty early too :) That was our plan though. His platelets, hematocrits and red blood cells all came up with out a transfusion yesterday. Also his white blood cells have been at 0 for about a week or more. They were at 100 today!
So, to come home: no fevers, no infections, in GVHD, and his neutrophils have to be at 500. Those were still at 0 today. Pretty sure those will start coming up tomorrow though. Once they start coming up it usually only takes a few days to get to 500!! And once the neutrophils start coming in they will start to heal his mouth sores pretty quickly! So, now we wait and hope and pray.
He has more mouth sores :( Could be worse though. But bad enough to be on a pain pump with a constant drip of dilaudid. It definitely helps. His tummy pain is completely gone :) He has been "eating" ok. His calories actually consist mostly of ensure drinks and shakes. But, he's getting about 1500 calories a day so that is good. Although the dietitians would love it to be closer to 2000.
The good news is that his counts have started coming up. Pretty early too :) That was our plan though. His platelets, hematocrits and red blood cells all came up with out a transfusion yesterday. Also his white blood cells have been at 0 for about a week or more. They were at 100 today!
So, to come home: no fevers, no infections, in GVHD, and his neutrophils have to be at 500. Those were still at 0 today. Pretty sure those will start coming up tomorrow though. Once they start coming up it usually only takes a few days to get to 500!! And once the neutrophils start coming in they will start to heal his mouth sores pretty quickly! So, now we wait and hope and pray.
Thursday, June 6, 2013
Day 8 ( 17 days in hospital)
It is kind of funny, but this hospital stay seems to be going by kind of fast. I am guessing once it hits 3 weeks that it will feel like forever and slow down. ( because 3 weeks is how long John was here for his auto). But so far it has not been awful. Probably because we know what to expect and we know so much of the staff now. This hospital is amazing. Well, East 8 is amazing! We love everyone here. It is so nice to feel so comfortable here. I love that it doesn't really matter who is John's nurse for the day. When I am in the halls any nurse that knows him will stop me and ask how he is doing. Then give advice too. Every one is family here. John has a new Dr. who is here helping out for a few months. We love her. She is from India but has spent most of her life in New York City. She is an oncologist and hematologist in India. She is great and we love sitting and talking stories with her. We will really miss her when she leaves.
John is doing ok. Nothing out of the ordinary. He is super tired and not eating a ton. But grateful he is still not on TPN. He is really hoping to avoid TPN this time. He is only eating about 1300 calories a day and has lost over 15 pounds. Unfortunately it is moystly muscle. He has not weighed this little since he got home from his mission. We are grateful he didn't come in here under weight. He also is starting to get some mouth sores. Not too bad though. He has a few on his tongue. And now maybe a few down his throat. But still able to drink ok. Most of his calories are through drinks. A lot of Ensure drinks. John was having a pretty bad pain in his belly. Right above his belly button. They did a CT scan and nothing was found. So that was good. It is starting to get better on its own. We were worried it might be typhlitis again and we are glad that it isn't.
The other day a sweet lady came by John's room. She was a patient here and had an auto transplant 2 years ago. To celebrate her "birthday" she brought cute little gifts to all the patients here. It was the neatest thing. And now that is what John wants to do :)
The kids are all doing ok. Abby's last day of school was yesterday and for the other kids today is their last day of school. I can not believe how fast this year went by. I think they are all excited to not have homework :) Last week John's mom was here helping out. This week my Aunt is here. It is so so helpful. They get kids to school and do laundry and shopping. They fix dinners. I am usually at the hospital from about 9 am - 5:30 pm each day. It is so nice to be able to spend time with John. We joke that we have our best dates here. We watch "Lost", play games, take walks, sit and talk. We never get to spend this much time together at home. John has had some pretty blah days where I do a lot of reading. In 17 days I have read all 3 Hunger Games :) Thank you Katniss and Peeta for getting me through these past few weeks :)
As long as there aren't any complications, John can come home when his counts come up to a certain level. My goal is still Father's Day.
John is doing ok. Nothing out of the ordinary. He is super tired and not eating a ton. But grateful he is still not on TPN. He is really hoping to avoid TPN this time. He is only eating about 1300 calories a day and has lost over 15 pounds. Unfortunately it is moystly muscle. He has not weighed this little since he got home from his mission. We are grateful he didn't come in here under weight. He also is starting to get some mouth sores. Not too bad though. He has a few on his tongue. And now maybe a few down his throat. But still able to drink ok. Most of his calories are through drinks. A lot of Ensure drinks. John was having a pretty bad pain in his belly. Right above his belly button. They did a CT scan and nothing was found. So that was good. It is starting to get better on its own. We were worried it might be typhlitis again and we are glad that it isn't.
The other day a sweet lady came by John's room. She was a patient here and had an auto transplant 2 years ago. To celebrate her "birthday" she brought cute little gifts to all the patients here. It was the neatest thing. And now that is what John wants to do :)
The kids are all doing ok. Abby's last day of school was yesterday and for the other kids today is their last day of school. I can not believe how fast this year went by. I think they are all excited to not have homework :) Last week John's mom was here helping out. This week my Aunt is here. It is so so helpful. They get kids to school and do laundry and shopping. They fix dinners. I am usually at the hospital from about 9 am - 5:30 pm each day. It is so nice to be able to spend time with John. We joke that we have our best dates here. We watch "Lost", play games, take walks, sit and talk. We never get to spend this much time together at home. John has had some pretty blah days where I do a lot of reading. In 17 days I have read all 3 Hunger Games :) Thank you Katniss and Peeta for getting me through these past few weeks :)
As long as there aren't any complications, John can come home when his counts come up to a certain level. My goal is still Father's Day.
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