Day 537

Friends
Thank you so much for all your well wishes, thoughts and prayers; they have boosted our spirits in this hard time.
I wanted to update you all on whats happened the past few days. John was released from hospital on Tuesday. He was given crutches to move around which are not every helpful when both your hips hurt but they do help him with getting up. Some test results are back.
The scope showed that John has nonspecific esophagitis. They couldn't find a cause and were told this is not uncommon -The doctor doubts it is GVHD and  best approach is omeprazole and keeping acid secretion down. John's fevers and sickness is a viral infection called parainfluenza III. it also causes the common cold, which tend to be more severe after transplantation. There is no therapy for it other than symptom management.
And as we said before his hip problem is a vascular necrosis.
Next week we will meet with John's bone marrow doctor as well as an orthopedic surgeon and hopefully we can start to make steps towards a treatment that will allow John to return to his normal, young and healthy mobility!
I (Amanda) am currently staying home to take care of John as it hurts for him to move too much and standing for any longer than a few minutes is very uncomfortable. He is still also recovering from the virus he had. Slowly but surely he is regaining his appetite also. Thanks to our friend Jeremy we have ac in our apartment, yesterdays 95f was quite unpleasant!
Thanks again for all your prayers and encouragements :) I feel encouraged in the Lord more each day
Love
Amanda

Day 534

John is back in hospital. Sigh. John came back from the UK just under 2 weeks ago. While he was away he had persistent trouble swallowing and also very bad hip and leg pain. He endured it the whole time with patience and strength, never complained. Upon his return we went to see his doctor who decided to have John have an endoscopy, a camera down his throat to check it out and also an MRI to see what was wrong with his hips. Thursday evening John and I got home from the endoscopy John was very sleepy from the sedation so he went to bed and i made dinner. About 3 hours later I woke him up and he was very hot, fever of 102 and shaking. I panicked and took him to the ER. He has remained in Brigham and Women's since. The fevers have largely gone but seem to intermittently return with some sickness. This is a suspected infection. While in hospital John also had an MRI on both hips.
The results of the endoscopy are pending but they seemed pretty sure that is GVHD (Graft Versus Host Disease). John had this last year very badly, if you remember his long stay in hospital. However we wait. Treatment options for this is steroids (prednisone)
The MRI results are back. He has avascular necrosis which means bone death. The large doses of prednisone have basically destroyed the top part of his femur bones. He is having to move with a walker and even that is hugely difficult. Obviously are hope and prayer is that the throat problem is not GVHD as the treatment for this will surely progress the avascular necrosis.
Upon John's discharge we will meet with an orthopedic team about treatment options for John's hips, this could include surgery. One thing it does include is a long journey of physical therapy before he can gain full mobility.
We will be honest with you all, John and I are very down and struggling to keep ourselves hopeful. John has come very far and we recognize all that he has come through and all the healing he has already. However this is all wearing us down so much. We just have to keep praying and trusting, it's all we have.
Love you all and thanks so much for all your support and love