Lovingheart

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...

Another uneventful hospital visit.  He doesn't need to go back for a month now.  Keeping an eye on the rash but it isn't serious.  They still haven't received approval for the chemo drug so he is taking the original one.  Ever so often he gets a strong hit of nausea. It's what happened afterwards today that has me shaking. We were driving towards Guelph, on a side road and there was a van on the side.  A guy flagged us down.  I stopped on the road as no one was behind me.  He didn't have much gas, his family was with him, and he needed help/money.  He said he'd give me his jacket.  I asked how he was going to get gas and he said he had enough to get to the station.  Trucks were coming and he asked me to pull over.  I was thinking I could give him $5.  As I was about to pull over, Marlon said it was a scam, he was going to rob us.  He was running towards the car and I continued driving. I felt lucky Marlon was with me as we...

Two weeks between hospital visits.  In no time, it will be three months. He didn't sleep well last night and there is a brief moment of concern when he looks off from lack of sleep.  But then I realize there is no need to worry.  We all have off nights.  Speaking with another mom whose son went through similar treatment.  She said it took a year before she could be ok with the colds and sickness and not feeling a sense of concern. Since he has a new system, his immunity has to rebuild.  He had a strong immune system to start.  We'll see how he makes it through the winter months especially once he is out and about more. I have been keeping very busy.  Marlon has commented on that a few times, wondering how I will be once back at work.  There is still so much to do.  After not having been organized for several years, there is catching up to do.  And always stuff to be cleaned.  And dogs to walk. Lovely Christmas cactus in full bl...