Cyclo

John is on an immuno suppresant called cyclosporan.  After every Allo transplant the patient goes on cyclo or tachro to suppress the immune system.  The reason this has to be done is basically to try and keep the GVH from flaring too bad.  These drugs go right to the T cells and try to stop them from dividing and suppling an immune system. It T cells divide too fast the body can be surprised by the new T cells and cause major GVH. After John's transplant he was on tachro.  Tachro was taken twice a day and should pretty much clear the system every 12 hours.  When John was admitted 9 days after being released from his Allo, his tachro level was at 29.  At that point he had not had it in almost 2 days (he had been throwing it up). So, his level should have been 0.  Tachro clears through the liver and John's liver was not functioning normal and was not clearing the tachro. It took 15 more days for his body to clear that tacro.  Some days it did not go down at all.  Because he had GVH he also went on the steroids (prednisone). Prednisone basically does the same thing as tachro and cyclo, but it clears through the kidneys and has way worse side effects.  But it was necessary to fight the GVH for John. Leaving the hospital they started John on cyclo (instead of tachro - basically a cousin drug).  They have been watching his labs twice a week and monitoring his levels.

Their first goal was to get John to a cyclo level of 100.  It took 6 weeks of adding very slowly and watching his labs to finally get him to 100. (Which was just this week). We found out yesterday that a level 100 won't do a whole lot of what cyclo should do and most patients need to be around 300.  But, because John has been on a high dose of steroids, no one was worried.  But, now more balancing between these 2 drugs.  The prednisone is being tapered at 10 mg every 5 days. (He left the hospital taking 180 mg a day). He is now taking 110 a day. Once he gets to 80 in about 11 days, they will keep him at that level, probably for a few weeks and then taper more.  During this time, his cyclo level will slowly be increased.  He has to have this immuno suppresant for at least 1 year before the body can try to work better with the new cells.

John is only one week away from his day 100 post transplant mark!! The thing is, that typically at day 100, the tachro/cyclo starts to taper. But, John has not even gotten close to the 300 mark to start to taper. Typically it is a 9 month taper. So, it will have been one year of the immuno suppresant.  Looks like John's will be a bit longer.  It may take a few more months to even get him to 300, then keep him there for a few months, then taper for 9 months.

The Dr's on East 8 are SO good at doing what is best for every patient.  They truly care and watch every patient. Every day in rounds talk about every in patient and once a week talk about out patients.  John has been so far off of protocol, but that doesn't matter. He has been different from the moment he walked in those hospital doors on October 16, 2012.  They literally had to research his type of cancer and call specialists to see what to do. And they have been amazing!  So, for now - we hold on to faith and keep trusting these amazing Dr's. And watch his body and see what it can handle.

Just keep swimming

You know that line from "Finding Nemo", "just keep swimming"? That is how I feel most days.  Life is kind of hard most of the time. Yes, John is through his 2 transplants and yes, he made it through 3 weeks of hell when his body was shutting down. But, that does not mean things are any easier now.

John is still really really weak. Probably more weak than when he left the hospital last. Part of that was from laying in a hospital bed for over 2 weeks. But the bigger part is all the steroids he is on. The steroids are to help keep graft vs host from being too much.  We do want some, but only the manageable kind :) When he last left the hospital he was taking 180 mg a day.  They are slowly tapering him 10 mg a week, he is now at 120 mg a day.  Just for reference, a low does steroid is 7.5 mg or lower and high dose is anything over that. Obviously John is WAY over that. The steroids are causing lots of issues.  One is the extreme weakness. One is cushioning sydrome, one is it is hard to sleep and another is high blood sugar levels.  Not much he can do for weakness, he does still go to physical therapy twice a week and is supposed to do exercises at home. It will just get better in time. Because of how weak he is, if he falls (which he has several times), he can not get himself back up. The other night I was gone and he fell on the front lawn moving the sprinkler. He had to crawl through the garage into the house and yell for Isaiah to bring him his phone. Then he called his brother who lives around the corner to come help him up. Dr. Peterson said he should not be left alone for now. That is really hard too. Because he can't go places I go to run errands (like Costco, Walmart . . .), but I can't leave him home. I have a few times for short periods and just make sure he has what he needs and his phone is near by. But, no more going out in the yard alone and definitely not going up the stairs. I switched our bedroom with our oldest (so she now has a huge bedroom with bathroom and walk in closet) and we are in her bedroom (which is a lot smaller, but is working good). Cushioning sydrome is swelling. John has it in his face, neck, back, stomach and ankles. At times it is pretty bad.  His face is what probably bothers him the most. He thinks it looks awful, the Dr.s say that have seen way worse. Nothing he can do about that, but he does try to stay off his feet as much as possible. For sleep he takes a sleeping pill and benadryl and it usually helps. Sometimes not. And when he tosses and turns and doesn't sleep, I don't sleep. Problem is that I don't have steroids in my system to keep me going all day after only 4 hours of sleep :( His high blood sugars have been an issue. Several times it has been super high at bed time and he will have to check it every 2-3 hours all night long and call the hospital triage nurse with each reading. That makes for really long nights. He does insulin at least 4 times a day, he now calculates his carbs before meals and tries to pre medicate. It does not always work though. He is trying to eat less sugars and more protein. Luckily it is temporary and will go away when the steroids do (which could be a year or more until he is totally off them).

John has his 100 day bone marrow biopsy in a few weeks on Sep. 13.  That will tell us how well his body responded to his Allo transplant. We hope and pray it is a super low percentage of cancer cells (if any). Preferable 0%.  If he has a high number it means the transplant did not work, the cancer is back and there is nothing they can do. They did the most aggressive treatment they could. So, we pray it is working. He will then have another bone marrow biopsy at the one year mark (end of May). The longer he lives the longer his survival rate is. Most patients do not make it through one year after transplant (cancer can come back, or GVH). Once you get to 5 years though, your chance of survival is pretty stable. So, this is not a "oh, we made it" scenario. We will have to worry about GVH or the cancer for years. The first year being the hardest. Any day he could get a fever or infection which is an immediate hospitalization. He has NO immune system and really does not go anywhere other than appointments. After about one year they will start reimmunizing him. He is not immune to MMR, DTaP or any of those that we all got as kids.

We have to be super careful about germs. The kids started school this week (which is so nice to have some routine back), but it also means school germs :( For now, until John gets to day 100 we can never be more than 45 min from LDS Hospital ( it has made for a challenging past month). That is pretty hard. At that point the Dr.s will reevaluate and see what they think.  It will be about a year before he can "travel" short small distances and up to 2 years before going on a real vacation.

It is hard for me to help him, drive to appointments (almost daily), (Oh ya - also because of his weakness he can not drive) take care of the house, cleaning, shopping, cooking, the yard, the kids . . . It will take some adjusting to have him home all the time.  I am so use to have 6 -7 hours a day all to my self when the kids are in school :)

This is hard. We still go one day at a time. We are grateful for every day. We are grateful for the gospel and our family. But, we still have a long road ahead of us.

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.