Lovingheart

The beginning of April when Marlon had swollen glands, I thought he had mono.  Even the doctor thought so (  https://www.lovingheart.ca/2025/04/april-14-2025.html ) Mononucleosis is a symptom of the Epstein-Barr virus. We soon figured out it was more serious than that. Yesterday we were informed that some tests that came back positive for EBV.  It isn't serious and is something that often lies dormant.  While he is immune compromised they are watching the levels. Otherwise he is much better.  Hands and feet are still sensitive. This was the rash on his front. His whole upper body was like that, even worse in places. Now it is mostly clear.

Those darn steroids.  He needs them to help with the GVHD but they have their own side effects.  High blood pressure.  I keep wishing we could lower the dose but the doctor warns that lowering the dose too soon can cause more harm. And I think of Mina.  Our dog was very sick as a puppy and had to be on steroids too in 2021.  I tried to wean her off too soon and her health went downhill. The skin on Marlon's face is all flaky.  Leftovers from the rash.  I wonder if his body will flake too.  Mostly just his feet and hands that are still irritated but getting better. On the sidewalk near the hospital.  There are many hearts.  I assume it was a commissioned creation.  I saw him out there a few times painting away.

The rash is getting a lot better.  Still the feet are the worst part. His blood pressure is high but that is because of the steroids which he is taking to combat the GVHD.  The GVHD is not an easy thing to go through but it is not bad.  It is a step that the doctors want to see but it varies in severity.  This means the new cells are working.  The body is learning to live with the new cells and the cells are bringing a healthier life. There are stem cell transplants where people can have their own stem cells removed then after undergoing treatment, the cells are reintroduced.  This is also stem cell transplant but in this situation there will not be GVHD.  Their own cells. Dog water fountain.  

We had three nurses changing the dressing, the BMT doctors, the pharmacogenetics person with results from a test, and the infectious disease doctor all arriving at the same time today. Sometimes the visits stagger well and other times it’s everything at once.   I think they have finally decided that the rash is in fact GVHD.  They said that an infection can trigger it.  The thing with GVHD is that there isn't a test that can be done to confirm it.  Often it is just looking at the big picture of the symptoms. The rash hasn't changed much since yesterday but the pain in his feet is a little bit less.  Overall things are calmer and definitely improving.  Last week, I went down to the water again.  I saw these letters floating in the water and it took a while to figure out what they spell.  “It comes in waves”.

Things are slowly getting better.  More itchiness but the pain in his throat is reduced.  The rash has changed, moving down his body.  The pain in his feet is probably the worst.  At first he was blaming the pain on too much walking.  He is using old shoes and didn't move much in hospital but it is the rash and nerve pain from the inflammation. These are the elevators.  Orange boxes open to the atrium with big windows. I didn't notice at first but a finger on Marlon’s hand in the last picture was making a statement.  When I asked him if that was intentional he said it was.  Oops, sorry for being rude.