A Busy Month

December always goes by way too fast. But we are having fun and happy that John is not inpatient. Last year at this time he felt so crappy. Chemo was wiping him out and he also had pneumonia. So this year is a little better :) No chemo and hopefully no pneumonia. So far John has only had a few little colds and 2 low grade fevers. 

John is slowly feeling better. He is still pretty tired, sleeps in and if he doesn't takes a good nap. He is still nauseas some days and they are trying to figure out why. We are all grateful for the energy that he does have. 

John had an appt today to do a test to check his hydro cortisone level. They are wondering if he is deficient in that. We have the results but don't really know what it means. They will call tomorrow and explain it. His numbers are all fine. His liver enzymes were higher last week and gratefully back down today - those ones always worry me and are the first ones I check every week.  John does have every other week appts but sometimes it doesn't work that way. We were in today and 5 days ago and again in one week. Just depends on tests. 

We had a family Christmas party and I wanted all the kids to do a pyramid, and then changed my mind. But, Isaiah really wanted to - so this is what we did :)  Yes, John is finally getting his hair back and loosing some of that prednisone water retention. 

Today we went and saw "Frozen" - a really great movie. We have been to a few movies recently. John wears his mask and if it is not crowded and we have a "bubble" he takes it off.  We take a blanket to put over the seat and it works good. We always go mid day and it has never been crowded.

We hope and pray John keeps improving so we can take our Disneyland trip in 2 months. The kids are so excited. As long as he stays how he is, we can go.

DAY 200!!!

YAY - Day 200 is today. 200 days post transplant. So, the second hundred went by a lot faster than the first hundred :) I never thought I would keep track of things like this. Sometimes I still look at life and can't believe what is going on. I look at everything and feel like I am an outsider looking in. It is so odd. But, it is really happening. John really has cancer, he really has had 2 transplants and we really are keeping track of every day :)

Fortunately nothing very exciting is going on. There are a few things John is dealing with.  He is having swelling again in his feet and ankles. We are not sure what from, but he tries to keep his feet up as much as possible. He still does not have much of an appetite. Every once in a while he will be hungry and want to eat though. He does eat, just not much. He also has had some nausea the past few weeks. Some days it is pretty bad and others he does not have any. He has thrown up a few times in the past few weeks. It could be mild GVH, or even possibly from chemo (almost 7 months ago??).  Who knows, but as long as it is not consistent and bad the Dr's are not worried. And that is the worst of things right now. Oh and, John had another bone survey. Where they basically take xrays of all his bones.  His one at his 100 day appt said his bone lesions were worse and that was weird. So, the docs wanted to repeat the test 3 months later. And the results were good. Some lesions were showing improved bone density and others stayed the same. So, that was good news.

John is feeling ok. Still some fatigue and he likes to sleep in :) And usually nap too. But, he can drive any where now (although sometimes he does not want to). Still appointments every other week and he LOVES having his central line out. It is still weird for me to have that thing out. It was just part of him. We have had several kids with colds and we are trying to keep John away from them.  Luckily he has not had a cold or anything like pneumonia.  Hopefully we can make it through this winter with out any hospitalizations. John is excited for Christmas and hopes to be feeling better this year than he did last year.

A BUSY day

John had a big day yesterday. We had a fabulous appointment. We were at the hospital from 9 -2, but got a lot done. He no longer has to check his blood sugar levels, he does not have to do an inhaled pentamadine once a month (that has switched to a pill form), he has appointments every other week now, and just labs on the off weeks (which he can do at the hospital down the street from us), he does not need weekly chest x rays any more AND he got his central line out!!!

This is John and Ashley. She is one of our most favorite nurses. We didn't really meet her until John's last hospital stay when he was so sick. We had seen her around but John had never had her. We LOVED her instantly. Well, I did. John does not really remember. She did so much for us and was really there for me when things were so scary. She came in to say HI to us when we were at John's appt yesterday. We miss her.

And - there goes the line. John was so excited to get that thing out. He has had it in for over 9 months. Now he has to get poked once a week, but he does not even care. He is so happy. This also opens up our 45 min window from LDS too since he is no longer high risk for infection from his line. But, we still have to talk to the Docs before we go any where. 

OHHH - isn't this the best picture. 5 years ago yesterday we were placed with Isaiah. He was 2 1/2 and the cutest kid ever. He was scared and confused, but adjusted pretty good. John and Isaiah even look a little alike in this picture :) 

Just some "stuff"

This is Rebekah and I. Her husband Chris is battling AML at LDS hospital. They have had a tough past few months. They have 3 little boys and live about an hour from here. He had his Allo trasnplant on my birthday (Oct. 28). Well, he actually had a haplo transplant. He did not have a single match in the registry :( His sister was a half match and they used her. Haplos (half matches) and kind of new and there isn't much out there on long term results. Rebekah and Chris also lived in Laie for a while. He worked at PCC and we know some of the same people from there. Although they were there way after us. They too moved to Utah a few years ago with out knowing why. And we have actually both had visits from Elder Bednar. We love them and pray for them every day. 

Yep - those darn flu shots. I took a picture of Abby because I knew she would not cry :) I actually do not believe in flu shots. They seem to always pick the wrong strands and we rarely get the flu any ways. But, with John having NO immune system the Docs really try to enforce that we all get the flu shot (and not the mist because it is a live virus). Jenna and Isaiah totally freaked out, the rest did fine. Glad that is over with (for a year).

A few days ago I got a phone call from the city of Taylorsville. Some one gave them our name as a family that has had a hard year medically and financially. And they wanted to bring us Thanksgiving dinner. It was so so nice and I totally cried. We really are ok and we had dinner all planned. But the city had the donations. On Monday night the city youth council brought us our food. They are all students at Taylorsville High and it was so neat. Here we are with them except the one girl who took the picture. We love our city.

Kind of boring

I'm trying to blog more often :) When there isn't much going on, there isn't much to blog about. But one of our favorite Docs, Dr. Ashe says, "keep it boring". That is actually a good thing.

It has been a good week. John has been pretty tired though. He is off of steroids and now is on hydrocortisone. It is only 5 mg a day - which is what his body should be making. His adrenal glands are supposed to produce it but they are a little lazy after a transplant. Eventually they will start making what they need to. John is thrilled to be off steroids and getting rid of all the nasty side effects. He still checks his blood sugar levels 3 times a day. But, he has not needed any insulin this week. The puffiness is starting to slowly go away and he is looking more and more like "John". His appetite has gone down and he isn't eating as much - but that is kind of good. He was eating more than he should when he was on steroids. 

He is very excited for this week. His central line should be coming out on Tuesday. As long as his numbers are fine, it can come out. That is what keeps us in this 45 min window from the hospital. When you have a central line in, you are at a high risk for infections. Luckily he has not had a single infection from his PICC line or his central line. He got his PICC line in, the end of October last year, so it has been just over a year. He can't wait to shower with out having to worry about a line :) Although it will probably HURT to get this sucker out. They literally just pull it out and since it has been in for 9 months, there is scar tissue built around it.

Other than that, life is pretty boring. We are all excited for Thanksgiving this week and then Christmas break is 3 weeks after that. This year is going by so fast.

The holidays are here

The tree is up. John was so excited to be feeling better this Holiday season. Last year really sucked for him. The  chemo was making him so sick and tired and nauseas. He did not enjoy this time of year. I pretty much did everything, with some of the kids help.  So, this year the tree went up a little early. It was great having John's help. 

John is feeling pretty good. His steroid dose is down to 10 mg a day. That is almost a regular dose. His blood sugars have been almost normal this week. At one point he was taking up to 40 units of insulin every day. This whole week I think he has only had 2 units. He is still a little on the tired side. His physical therapy and occupational therapy are both every other week now. Clinic appts are still every week and will be for a while. But, he did switch his micro fungun med. That one was through his IV line and now it is an oral med.  It is a suspension med, and is super nasty, but if his liver continues to do good with it, he should be able to get his line out in a few weeks. That has been our goal. Because that central line is what keeps us in our 45 minute window from LDS Hospital. 

Our good friend Houston got bad news this week.  He has AML and had a stem cell transplant on Sep. 30. He had a relapse and his cancer is back. It is in 69% of his marrow, and 3 weeks ago it was 0%. This is devastating, but no one is giving up. Those docs will keep trying and trying. We are praying hard for them. He just turned 29 yesterday.

And then yesterday my neighbor told me that her husbands brother has multiple myeloma. AHHHH! He is 44 and has 5 kids. I hate stupid cancer. 

Doing ok.

Overall, John is doing ok. With his steroids going down the Docs warned him he might be fatigued. Well, that has definitely hit him. He has a hard time getting up in the mornings and he always falls  asleep in the morning for a nap and usually just drifts off several times during the day. His stomach has been a little bothersome - but he has not thrown up. It just feels yucky. His swelling is starting to go down a bit and his hair is all starting to grow back. 

Today he snuck in and out of church a few times :) He came late to sustain Michael a Deacon, then came to practice a song our family is singing in the primary program next week, then came to see Michael get his Faith in God award. He always wore his mask :)

Because John was going to church he got dressed for church (obviously) and I HAD to take pictures!! I can't remember our last family picture!

So, no news really. John is doing ok and we are still taking everything a day at a time. 

Pictures

This is what we have been up to this past month :)

This is us at Silver Lake - we love it there.

Silver Lake.

Silver Lake one week later. A week later, it was all melted :)

John was able to go to the Priesthood session of General Conference and take Michael and his brothers. They were great and they all got to sit in special seating for "handicaps". 

John and I on the Alpine Loop. We kind of pushed our 45 min window one day (with permission from John's care coordinator). We drove the Alpine Loop and loved it.

John gets tired a lot still.  He literally falls asleep playing on his ipad.

OH YAY! Light the Night. It was so great to be part of this event. We plan on going every year. We had so much fun and it was super neat to walk the walk and see all the ballons. White for survivors, red for supporters and yellow for those that have passed on.

This is John with one of our most favorite PA's Shar at Light the Night. We love her :)

John at Light the Night. 

John and Rebecca. We met her in the halls on East 8 one day - she is amazing and always so positive. It was so fun to run in to her at Light the Night. She had her Allo transplant on John's 100 day post transplant day. 

On Friday our good friend Houston was released from the hospital. He has been in the hospital for 4 months with one one week break. He had his Allo transplant on Oct 1 and is doing great so far. Denise and I have become great friends over the months. I am so grateful for her and our friendship. And we are so so happy they are finally home from the hospital. Tonight I took the kids to go meet them at home.

Another month and time for an update

HOLY MOLY - where does the time go? :) We have had a busy month! John's 100 day post transplant meeting went really well.  They could not have hoped for a better result than what has happened. All of the tests were great. Just some weird things: John has an antibody to his donors red blood cells. The donor always win, but it could take a year or so. So his red blood cell (RBC) count is low. But, it has been holding its own and he has not needed a transfusion for it. They check weekly and it has been ok. The other odd thing is that he had a bone scan that was really odd.  The reader said that his bone lesions were significantly worse than his last scan (which was in May). This is perplexing?? The Dr. says if it was that much worse then John would be feeling it and would be in pain and his cancer # would not be 0. So, they were not worried and will just repeat the test in December.  His platelets are still going up and almost normal.  His liver numbers are all almost normal. One of them is not quite normal, but close to it. John still has a clinic appointment weekly, physical therapy weekly, occupational therapy weekly and his regular therapist (who he loves - she used to be a social worker on East 8). So, he has appointments 4 days a week. His steroid dose is now at 30 mg a day (as opposed to 180) and has been going down 10 mg a week - so this week should be 20 :) Getting so much closer to being off of them. His swelling is starting to just barely go down. His energy level is getting much much better. He can go up and down the stairs with out holding on to the railing and can get off of the floor by him self :) He also has started driving a little bit. But because his blood sugars have been high it effects his vision and he can't see great. But, his blood sugars have been coming down and that has not been a big issue at all.

We have had 2 non scheduled visits to East 8 in the past few weeks though. One time because John was coughing a lot. They did an aspiration and nothing came of it - just an annoying cough that now is almost gone. Then one week ago he was complaining of pain while urinating. I though it might be a UTI, so he called and I took him in. Turns our there was bacteria in his urine but he also tested positive for BK Virus. This is a nasty virus. It is eating at the lining of his bladder, so he literally pees blood and it is painful every time he pees. AND he has to pee every 30 min or so. So, he really doesn't go anywhere these days. It could take weeks - months to run its course. Kind of super annoying.

It may be a long winter - I hope not though. Last winter he had pneumonia twice and that requires a hospital admittance :( Hoping to avoid that this winter. Overall John feels pretty good and is doing as good as could be expected.

Here are so before and after pictures of steroid face swelling - called cushing sydrome:

This is when we were leaving the hospital after John's 3 weeks of hell in July. He is with one of our favorite CNA's Ammie.

This is John and I about 2 weeks ago on the Alpine Loop drive.

More good news

We still do not have all of the results from John's 100 day appointment. But, another exciting one is that  he is 100% his donor! That is super super exciting. The Dr.'s were hoping for at least 50%. We will meet with Dr. Peterson (the Director of the BMT program) on Oct.1 for a consult appointment and go over all the results with him. But this one and the bone marrow are the most important ones and we could not have hoped for better results.

What this means for now is that John is technically in remission :) But, it is complicated. He does not have a solid cancer, where when it is gone, it is gone and your life can go on. They are no cancer cells currently in him, but there are many other things to worry about. Pretty sure we don't have to worry about the cancer coming back. Although it is slightly possible. The Dr said it is super super rare for anyone to go back to their own cells after hitting 100% donor cells. And the only way his cancer can come back is if his cells come back. BUT, he still has NO immune system and won't for a while. Dr. Konopa said we now need to switch gears and just keep our eyes open for infections and graft vs. host disease. John is not considered cured for 5 more years. We are hoping the worst is behind us, but who knows.

I still sanitize like crazy, wash hands like crazy, dust every day. John can not vacuum or help in the yard either. If the kids even have a runny nose they can not be in the same room as John.  John still can not go any where with crowds. He really only leaves the house to go to appointments. Last night he went to the court of honor to see Michael receive his tenderfoot, but went late and left early. John will get another bone marrow biopsy in 9 months (at his one year post transplant date). And then he should start getting immunizations.

We are still stuck in our 45 min window from LDS Hospital. ( I am honestly going crazy) :) They say when he is down to a low dose steroid and gets his central line out we can go a little further. That might be by the end of the year at the earliest.

Our plan is to go to Disneyland ASAP!!!

100 DAY!!!!

John and I were able to go to the Draper temple this last week and do initiatories. It is one of our favorite things to do. 

On Monday John had his 100 day post transplant appointment. It went good. They did a bunch of tests and a bone marrow biopsy. He has now had 4 bone marrow biopsies and not that he likes them, but they are not at all as bad as the first one and he can totally tolerate them. They took a TON of blood and then called the next day and said they forgot some tests and needed more :) And then yesterday called and said they need to do 2 more tests next week! It is good to know how his body is responding and they are being very thorough and checking everything they can think of.

We have some test results back. One very exciting thing is that his bone marrow has come back with NO cancer cells. That is super good news. One test we are still waiting for is one that will tell us the percentage of his cells and his donors cells in his body - we hope that over half are his donors!! We should find out that one early next week.

John is feeling a little stronger each day. Just a little! I still walk behind him when he goes up the stairs and support his back, but not as much. It is getting a little easier for him to get out of chairs. And today he walked 2 miles. It was hard for him. It is so amazing how weak his body is.  You would not think that walking 2 miles would be hard, but it is. I have been pushing him a little :)

This is John on our 2 mile walk today - right at the end. He was tired.

Also John and I have been asked to speak in Stake Conference this weekend. For the adult session, our general session is a broadcast from the Conference Center. It will be a neat experience.

We are also just about at the one year mark of John having cancer signs. Almost exactly one year ago we sat in front of the Jordan River temple (we met on John's lunch break). We knew something was wrong, but we weren't sure what. I looked at him and said, " I think you have leukemia and it is going to be a long and hard year but we will be ok". Every thing about that statement was true! We hope and pray that the worst is behind us :)

Bees game

A few weeks ago John received a phone call from Jenny at LDS Hospital Public Relations. She asked him if he would like to throw out a first pitch at a Bees game. LDS Hospital is a major sponsor for the Bees. They were asked to get 3 people for first pitches for the last 3 games of the season. They had one employee and then actually John and one other guy (both from East 8 - cancer patients). John was so excited, and a little nervous :) The morning of the game he practiced at home to make sure he could throw it far enough. They also gave our family tickets to the game. The game was at 1 pm and we had to be there by 12:30. We got there and it was a nice day (a little warm, but not like it has been). We invited Jeff and Rachelle and Brook and Dave and their kids to come watch too.  Jeff and Rachelle were there early and were able to meet up with us. Before the game started they took us under the seats, the back way, down these halls and out on to the field (Jeff and Rachelle got to come too). We all stood off to the side kind of behind the catcher. They had 3 people doing a first pitch. John was 2nd.  It was really neat and the announcer did a thing on him and his donor drive and his transplants - it was super neat.  John pitched and did great. We took a bunch of pictures on the field and then went to our seats.

We have been to several Bees games. We always sit on the "lawn". Cheap seats and kids can run around and there is a play ground right behind the lawn.  Our seats to this game were about 9 rows up behind 1st base.  I forgot what it was like to actually be able to see the ball and to pay attention to what is going on :) John sat at a table near the lawn away from the crowds and I had the kids. Because we did not have to pay for tickets we decided to let the kids get some treats at the game (which we have never let them do). Also the day before the game some one gave us a little money and so that is what we used it for. The kids had fun with their super expensive lemonade and ice cream :)  We went to the lawn for a little bit, and then back to our seats. The Bees were losing big time so we left in the beginning of the 8th inning - John was super tired and ready to come home.

It was a fun day and we all had fun!

Now - tomorrow is his big 100 day post transplant appointment - we pray all the tests go well :)

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.

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.

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.

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!!

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.

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.

10 days in . . .

John has been at the hospital for over 10 days now. Things are going pretty good so far. For the first few days he had pretty much normal energy levels and we were walking a few miles a day outside. It was nice while it lasted :) He had his 4 days of chemo and had some pretty had nausea. It seems to be under control now and he hasn't thrown up in 3 days :) Really hoping it stays that way. He had his 2 days of ATG transfusions (6 hours a day) and that went just fine. That one can be kind of scary and cause really high blood pressure and breathing trouble. John had no issues with it. And yesterday he got his new stem cells!!! He was on pretty heavy doses of benadryl for 3 days. That was pretty entertaining.  For the most part it made him really really tired. It also made him really talkative when he was awake and it made him say lots of things that make NO sense. And then he would get mad at us if we laughed at him. So glad benadryl is done. 

So, now - we wait and see and pray and hope and have faith. His blood counts have pretty much zeroed out now. It takes about a week for the cells to start to engraph and start making their homes. My goal is to have John home by Fathers Day. Every one tells me that is early - I know. But I think it will still happen. 17 days away, he just has to get his numbers back up and not have any infections or any GVHD. I can hope - right :)

Here is John probably about day 3 while we were walking outside. Yes, that pole goes with him every where.

This was on Sunday when Grandma brought the kids to visit. They get so bored and it is so hard for them to really get a good visit. We were glad John could still go outside.

Here is John and his Mom.

Oh - and John's favorite night. Matt and Kanani surprised him with a visit. They are friends from BYUH and live in CA. They are in Utah for some family events and decided to surprise John. He was SO surprised and they visited for about 2 hours - he loved it. I was so sad I wasn't there to see them. 

Here is John and I right before he got his new cells! It was an exciting day.

So a few odd things: One day John has a PA that we had never seen or heard of. (he was just helping out for a few days while the hospital floor was super full). He came in and was talking to us and then says, "Oh - I've heard of you, I know you". He works for Utah Cancer Specialists and even they know who John is - kind of funny.

The hospital also has a Dr. who is from India who is helping out for a few months - We love her. I still can no say and write her name. Dr. S...... :) She just comes in and talks and talks and she and John talk stories for like an hour every day. She loves John. Even when she is not assigned John she comes in after her shift just to talk. To tell us about her family, show us pictures of her daughter, tell us about her dog, her garden, stories form her practice . . . She is hilarious. She came in this morning and then said when she was done with her patients she would come in just to talk! I think John loves having there there to just talk to. 

This time John gave the charge Nurse his "favorite nurses" list. Kind of fun and they have been super good about giving him his favorite nurses. His nurse today - Becky (who I think has now been with him 4 days) is new to us but we really like her. Well, Joy spent the afternoon with John today. Becky came in and was talking to Joy then asked if she knew so and so (can't remember the names). Joy says "yes". Turns out Becky married their son and her mother in law lives with them. Her mother in law got a christmas card from Joy and Becky saw it and ready the newsletter because it mentioned having a son with cancer who was being treated at LDS hospital. Becky put 2 and 2 together, so my in laws know her in laws :) 

Overall I am doing ok. It is so hard to do this and I am exhausted. But so so grateful for all the help from family and friends. Joy is here this week and my Aunt comes next week. So good to have there help with the kids. It is so hard on me because I want to be every where. I want to be with the kids and with John. It is nice having Joy spend her 2 Saturdays here with John so I can be home with the kids. I have my moments and the other day I really really missed my mom. I just was wishing she was here and helping. I cried all the way home from the hospital one day. Right now all we can do is pray that this works and that takes a lot of faith.