Lovingheart

Marlon was just seen again at sick kids.  His mouth has only been getting worse for the past while.  They keep trying the same drugs and it isn't helping.  Eating and drinking is so uncomfortable and painful that at times he just doesn't.  If he does eat, he takes a heavy duty painkiller. The primary doctor has decided he has chronic GVHD of the mouth. What this means to him right now is that he is back on steroids. I am relieved to have a diagnosis and a plan of action. It is very frustrating to know that something is wrong but not know what to do about it.  I have been stepping up the probiotics to help address the candida but now can understand why it wasn't helping. The new course of treatment will take about 6-8 weeks but the hope is that after this it will not come back.  The good part is that his organs and joints do not seem to be affected as can sometimes be the case.  On the 18th Marlon had his 16th birthday.  School buses were cancelled...

Still going around and around or so it feels. He still isn't down to visits every three months and his mouth issues are still there. At the beginning of February, Marlon started back at school.  Though he isn't liking too much about it, he feels actual school is better than online. When he started grade nine, first time attending school, he spent a long time imagining that online school would be better and less of a waste of time.  Having almost completed four online courses (two exams yet to write), he now feels that neither option is a good one, but attending school is a little better. He was allowed to go two weeks without a hospital visit.  After trying different drugs and approaches, his mouth is still irritated and uncomfortable.  Maybe that is GVHD but then what?!  We'll see. His skin is also very dry and flaky.  Another symptom.  Ho hum. My wrist is much improved and I am using it like normal but I am surprised how much the wrist still hurts, n...