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.