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.