One day at a time

Here is John at the Tracy Aviary with all the kids today!

Still just one day at a time.  One of these days life might slow down, but every stage seems to be hard in its own way. Overall John is doing as good as could be expected. He is slowly gaining back some strength. It is super hard for him to go up and down the stairs - so he does it as little as possible each day. Gratefully eating is going fine and things taste pretty normal to him.  He has not been nauseas in a long time. He is having trouble gaining weight back though.  He is on a crazy amount of steroids and it causes his metabolism to be pretty high.  So, weight gain is not happening and the steroids also make it very hard for him to sleep.
John has always liked cooking and now seems to like it even more. He is feeling good enough to be helping in the kitchen and has been doing more baking than ever. It is pretty nice for me to get a little break from that. One morning I woke up to a text from John. He couldn't sleep and literally got up and midnight and made a breakfast casserole and put it in the fridge :) He sent me the text at 1 am. He has also made pretzels, banana muffins, and several dinner dishes this past week. We will have to work out a schedule of who cooks when now :)
The kids only have 3 more weeks of summer.  I really feel like their summer has been robbed from them. It is going by way too fast and John and I spent way too much time at the hospital. And now he has about 4 appts a week. It is so hard to schedule things to do with them. I am trying though. The kids are doing ok, but I sense that they are not sure what to think. The steroids are making John more irritable and so that is hard for us all to be patient with him and it is hard for him to be patient with all of us. They are not use to him being home and it will be at least 1 -2 years before he will have enough of an immune system to go back to work. Just a lot of adjusting.
I am doing ok. And really ok is about it. Some days are super hard and I am not sure how to do everything. I am not sleeping much because John is not sleeping much :( I do not do very well without sleep and it makes me impatient and emotional. A few days ago Emma came down with a sore throat and then a fever and now Jenna has the same thing. That makes things so much harder. We have had way too many fevers in the past 9 months - it is awful.  I am not joking - more than we have ever had in all of the years put together. And John can not help with sick kids and I have to keep sick kids away from John. John has an appt tomorrow morning so today I have been trying to figure out what to do with the sickies.  Luckily my sister in law Rachelle said she can come watch them. I am so grateful for her and other family near by who are willing to help. John is not driving yet so I need to take him to every appointment. I always want to be at his clinic appts. John does not always remember everything the Dr's say. But, one day he will be able to drive himself and go to his lab appointments and PT by him self. He will probably have a clinic appt at least once a week for a long time.
Today was a hard day for me. We wanted to go to the Tracy Aviary this morning with the kids. Some of the kids did not want to go and were complaining. I was trying to get everything done this morning and no one was helping, kids were tantrumming. We finally get there and there is a super long line. Isaiah has like 5 BAD tantrums while we were there, John was yelling at him, it was hot, it was crowded. Just not super fun. I was tired and grumpy. We get home and get the kids lunch and in quiet time. I was supposed to take the kids to Seven Peaks, but was not going to with all their attitudes. Then Emma's fever came back and Jenna had a fever. I just was so done with today when it was only 1 pm.
Not every day is as hard as today though. I am just feeling so many things right now. In one way I am so ready for school to start. It will make getting John to appointments so much easier and I can keep the house cleaner and get my schedule back. But, then I feel guilty and wish summer was longer so I could play with the kids more and do more of what we wanted to do this summer. Since John can not go more the 45 min from the hospital for at least 100 days post transplant, it makes it challenging to do things. Just so many emotions.
Tomorrow will be a better day!

Just stuff

Last night I blogged from my phone. Really not the easiest way, but it worked. It is hard to put into words what life is like for us. It is hard to want to describe it, it is hard to live it. I am not a very good writer, but I enjoy it and it helps me to get things out. 

John was diagnosed with cancer almost 10 months ago. We weren't exactly sure yet what was going on and one day I met John for lunch. We sat in front of the Jordan River Temple eating and I told him, "I think you have leukemia, and it is going to be a very hard year, but every thing will be fine". I still believe that. I really had to idea what "hard" meant. These 10 months have been hell on all of us. Something that is really hard for me is watching my kids go through this. I went through this is a child. I watched my Mom suffer through ALS for 5 years and she passed away when I was 11. Then at 15 my Dad got cancer and passed away less than a year later. I kind of always thought I had it hard enough and my kids would not have to face anything like I did. So I hate watching them suffer, because I do know what it is like for them and it is awful. 

I am super grateful John is home right now. It is nice to all be together as a family under the same roof :) But, there is just a TON to be done every day and to try and stay on top of. My list every day is SO long. And on top of it all, John is not sleeping well which means I don't sleep well. I am doing my best and literally feel the grace of God helping me each and every day.  We just keep going one day at a time. 

These are some pictures from my phone (from the past few weeks):

This is John's nephew Lucas writing on the board on East 8. There are 2 huge boards in the hall for people to write messages to patients. It is a fabulous wall.

John up at Silver Lake. He walked the 1 mile around the lake but it was hard.

This was last week at a clinic appointment. We love to stop and see our favorite people. This is Nataliya, John, Kara (who John called a moron and has no recollection of it) and one of our most favorite nurses Lisa.

And more favorites: John with Lauren, Becky, Tammy, Dr. Sarada, and Dr. Hoda.

We are so grateful for the staff on East 8. We love all of them and know that John is in the best hands. Every one cares so much and is always so concerned. They work and work and will do anything for John and I :) During this last stay I literally asked for specific nurses every day. And ALWAYS got who I asked for. We are so blessed to have the hospital so close.

This is hard

John has been home for 9 days. Exactly the same amount of days he was home after his Allo transplant before going back to the hospital for 20 awful days. Everything is going ok. It is just hard.

John is super weak and tired. It totally wears him out to come up the stairs. He is slowly gaining some strength though. Yesterday he made dinner. It was hard and very tiresome for him. It is funny how I never thought about stuff like that being hard for anyone. He starts out patient physical therapy tomorrow. That should help a lot. He is trying to walk every night - at least one mile. Earlier this week he went with us to Silver lake and walked that one mile trail. And today we drove up the canyon to make s'mores. He went too.  This is a picture I took of him with the kids today up the canyon.

John's mind is still slowly clearing. He still has some issues. He doesn't remember everything. And has trouble sometimes figuring out how to say something's. Yesterday he was talking to someone and said he never had GVH. I was like WHAT ??? And had to tell him he has (has) GVH of his stomach while in the hospital. I had told him before and he had read it. But some how that fact did not stick in his brain. 

He is on a lot of steroids and those are making him irritable. He tries but is not very patient these days. His blood sugar is high from the steroids so he still has to do insulin several times a day. Can't wait to be done with that. Luckily no nausea and he is eating pretty good. Not gaining much weight back but he is definitely eating. 

He is at day 52 post transplant. At day 100 they do a bunch of tests to see how well the body is responding to the transplant. Can't believe he is half way there. 

Sometimes I can't believe how much our lives have changed. It is hard. We are half way through summer and haven't done anything. My kids so badly just want to play and go camping. But we can't do that yet. It sucks. I am really trying to plan fun little things while we can. But I am having a hard time helping John, taking care of the kids, taking care of the house and yard, shopping, errands, cooking, cleaning, and taking care of me. I'm having trouble sleeping which makes for long days. It is so nice to all be home but it is just hard. 

Pictures and an update

 John has been home for 4 days. He was released last week Friday. Yes, I will admit that was John's goal.  He said he wanted to be home Friday - I said, let's try for Monday. He did it - it was Friday. Once he started improving he got better and better every day. Once that feeding tube came out he ate and ate and ate. One day he wanted pizza - we ordered pizza :) What ever he wanted, I got him. That was the only good thing about him "sleeping" for 2 weeks. He woke up with somewhat of an appetite and ready to eat.  Every thing does not taste fabulous, but he can eat with out a problem and NO nausea. Because he is on steroids his blood sugar is high :( So, he came home with insulin - typically needs it 4 times a day too. The tachro he was on is an immuno suppresant. He needs to be on it, but his body did not like it. We are pretty sure his liver just was working slow and was holding on to it, so we HATE tachro. But, now what???? Their is a similar drug that can be used, but the Dr.'s don't feel like he should start it yet. Right now he is on enough steroids that it isn't necessary, but eventually he will have to start cyclosporan. He is feeling better and better every day. He is still pretty weak, he can get up and down the stairs but it takes all his energy. He has lost a ton of weight (since October about 45-50 pounds). He is so tiny. So for once in his life he can eat whatever he wants and enjoy it and try to gain some weight. Overall John is doing good. Still recovering from his Allo transplant AND now recovering from dehydration, liver and kidney failure, and a brain that was working slow for 3 weeks. He is pretty tired, but that is to be expected.

John has gone out with us a few times to the park and splash pads. His mind is getting better every day, but still a little slow at some things. Our best friends from CA came out last week and I begged them to stay :) Linzi stayed with her kids while Erick flew back for a week to work. I do not know how I could have done this without Linzi.  Although 9 kids in one house is a lot, we are so so glad they have been here. We will miss them when they leave Friday. 

Today John had a clinic appointment (3 1/2 hours). It went good and it is so nice to be seen in the out patient clinic and not in patient. Although they had to put us in an inpatient room because the clinic was full :) It was fun to see so many friends. John's counts are all doing good. His liver is still a little high, but the Dr. said it is normal for what he has been through. (it just makes me nervous). 

Here is the past week in photos (kind of backwards though - sorry):

This was all at the hospital today for John's appointment. Top left going clockwise: (1) John and Tony (our favorite our out patient clinic nurse), (2) John and Dr. Ford, (3)John, Ashley (one of our favorite in patient nurses) and I, (4) My new friend Denise and I. 

Last night 2 of John's mission companions came over for a visit. It was been over 12 years since he has seen them. It was so fun listening to them talk mission stories.

Saturday we went to a splash pad park for a little bit. To keep John safe he has on sunscreen, a hat, sunglasses and is in our shade tent. It was so nice to be outside.

YAY - we are leaving. (1) John and Alyssa (another favorite in patient nurse), (2) John and Aimee (a favorite CNA), (3) John and Sarada (a Dr. from India helping our for a while whom we LOVE), (4) John and another favorite nurse (Whitney) and then John and another favorite nurse Kyle. 

This was one of the first days John was feeling better and he was able to go outside. It took a lot of energy and he had to use his walker, but it was worth it and it felt so good. It had been 17 days since he had been outside. 

This me with Jeremy Hoop. Jeremy is one of John's friends from growing up. He came and sang at John's bone marrow drive on John's birthday. 

John's 41st birthday with Gwen, Christy, Beth and baby Derek.

Another birthday photo with family.

The first day the kids got to see him after his birthday (it was 10 days later). You can just barely see his feeding tube going in his nose.

The more John and I talk about our 3 weeks of hell, the more I realize he remembers so little. He does not remember his birthday or these pictures, he does not remember Sarada bringing him a cake, he does not remember many of his tests and procedures, he does not remember many of the nurses he had, or Dr's visits (up to 4 times a day), he does not remember changing rooms (3 times), he does not even remember going to the hospital and being admitted. I guess it is a good thing. He has read my blog and facebook updates and has not asked many questions. It is just not fun to talk about. We are just glad he made it through it and is improving every day.

Thank you again for all you support. 

Doing pretty good

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.

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.

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.