Merry Christmas and Happy New Year to all! We have been fortunate enough to have Seth home this entire time. We have enjoyed a quiet holiday period as there is not much we can do with Seth being immune suppressed and Brett with his foot injury. It has been lovely catching up with friends and family. Brett came through his op well with plates and pins in place permanently and is well on his way to recovery.
I just returned from Seth's weekly hospital visit today and most things seem to be going well. They have found arthritis in his ankle from the bone scan. However his pain is getting worse as time goes by so they did extra bone blood tests (dont ask me how they do that or what they look for) and an xray today and have booked him in for an MRI. He is hobbling about like a little old man and it's sad to watch him struggle. Unfortunately the arthritis is here to stay and they believe it's due to the chemo and steroids as there was no evidence of it in all his tests before his transplant.  Unfortunately the side effects of treatment are now starting to catch up to Seth and it is a matter of dealing with them as they appear. The other thing is that one of the chemo's he has taken can shorten the calf muscles and now that he is up walking around, they are being stretched and can cause pain for about a year.
Seth is having a bone marrow aspirate next week to test for cancer. There is no reason to believe that at this stage they will find anything.
Seth is still very weak and tired and lacks energy. He finds it very difficult to walk and has found that reading is a way for him to escape and to pass the time. He is still very chubby, in fact he gained further weight since last post despite dropping one of his steroids. After losing a kilo, he steadily gained a kilo a week until he reached 32kgs.  The doctors have put this down to the second steroid he is taking, which is not supposed to be absorbed, but is in fact being absorbed because his gut hasn't recovered from the radiation yet. He has now completely finished his pred steroid and from today is halving the dose of his second steroid. Progress is being made and it's encouraging to see these medications no longer being needed by him.