Lovingheart

When Marlon recovered from cancer the first time in 2022 and was set free, it seemed life could go back to normal. This time around I expected it to be the same way.  Treatment is done, and check ups every three months. Side effects from treatment linger.  It has been several months that Marlon has been on steroids to help with the GVHD which has mostly affected his mouth.  Not confirmed but another aspect of GVHD is limited hair growth.  Since being on steroids his hair continues to grow.  His mouth is somewhat better.  It is still sensitive with occasional sores.  Very limited tolerance for spice.  More than a little and he is in pain. I have come to think that having a strong constitution means that his body is still concerned about the invading cells even though they have been integrated. Not completely unexpected is sickness.  After having his immunity reset, it is not surprising that he catches most of what is going around.  We sta...

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...

I was really hoping that at this time Marlon would only be going to the hospital every three months.  After seeing him last week they were debating GVHD and also his mouth which was swollen and irritated.  On Tuesday the 13th, we were back at McMaster again.  They had taken him off the chemo drug imatinib to see if that would help his rash.  There was back and forth about medication for his mouth.  They first sent him a rinse but he has used it before and it is too uncomfortable and makes the problem worse.  Marlon's primary doctor from sick kids wanted to see him and his symptoms first hand.  A last minute appointment was set up for Wednesday January 14.  Work was able to find someone for my shift and we drove to Toronto.  More blood work, lots of questions and checking.  The rash is subsiding so maybe it was the imatinib.  He has received approval for the alternative chemo drug which he will start in a while.  We are glad he ...

Day 154 post transplant and it seems he may still be dealing with GVHD (graft vs host disease).  Hospital visit today and especially the past few days he has been noticing some things.  Skin is more dry than usual.  His mouth is very irritated.  A rash of sorts, red spots around his elbows and knees.  Again GVHD is a guessing game.  Marlon felt quite certain that this was something completely different, that the GVHD was long gone. I did wonder if it was bugs or a reaction to the bed.  L was here for a visit and I switched out his mattress and he was not comfortable with the change. More pictures, more tests, possibly more hospital visits as they observe and figure out what to do next. As far as my hand and wrist go, I complain too much.  The pain is a bit less and I can use my fingers a little more.  Some say it is good that I am left handed as it is my right hand but I realize how much I use both hands.  The arms work together and each...

On the 24th, Marlon went to a friend's in the evening.  First social thing he has done since Halloween.  Still being careful however in January he will start to get out more.   It has been a rough season for people's health.  I do worry sometimes even being at work as I see so many dealing with colds and more.  I imagine at first Marlon will catch most things going around.  His body has to build up strength and immunity.  That said, he appears very strong and healthy.  Physically strong, active, and well.  Unfortunately, he has not received approval for the dasatinib so he is staying with imatinib.  This drug does seem to be harder on his system.  We are still playing around with the best time of day to take it so that food and drugs stay down.  Not always the case. Early in the morning on the 25th I woke up and noticed a disembodied arm lying next to me.   What a shock.  With my right arm I felt this cold limp a...