Lovingheart

Blood counts at the hospital again.  His neutrophils and white blood count, which used to be so low, are now high, but that is because of the steroids. Overall his counts are good.  They continue to watch, mostly just keeping an eye on the GVHD to make sure it is well under control. He just said that once the layer of skin from his feet is fully peeled, he'll be a millimeter shorter.  Walking is going well considering the fresh skin is sensitive.  Each floor has a set of unique wooden rocking creatures.

A Chimera is a Greek mythological beast with a lion's Head, goat's body, and a serpent's tail. In transplant they use the term chimerism.  They do a check post transplant to determine whose DNA the recipient has. The results have come back from Marlon's blood test which they did on day 22.  100% donor cells.  This is a very good sign and bodes well for continued health. His immune system continues to be suppressed to make sure nothing changes back but it definitely feels that the worst is behind him. Pretty shocking but getting rid of the old…

There have been so many drugs involved in this process.  It is mind boggling.  They started steroids to combat the GVHD.  Steroids are helpful but bring along a load of side effects that require more drugs.  They are slowly weaning off the steroids to make sure he doesn't get more rashes.  Each week there are fewer drugs. When we played ping pong today he had a paddle in each hand which gave him a greater challenge.  Hitting left- and right- handed consecutively.  We had a little boy (3 or younger) wanting to play along so we fit him into our game.  He could “ serve” - throw the ball across the table.  He used the paddle to push the ball around.  He was very upset when his dad said it was time to go. This building was glowing pink as it was catching the morning sunlight.

I was talking with another mom today who really misses her life back home.  In a weird sort of way, I am having a holiday from my everyday life.  I miss the dogs.  I miss some other things but I don't miss my home life and I feel wrong.  I find happiness wherever I am.  I don't know. The last person a teenager wants to be stuck with is their parent.  He has had enough of me.  We played ping pong (I am hoping this will be a regular thing) and I smile and laugh at silly moves and he never cracks a smile. We make sure to get plenty of time apart. It looks so painful and uncomfortable.  The smaller toes are just sensitive skin now.  A process.

Quick hospital visit for blood work.  Shortest visit we've had yet.  They sent off the blood, determined the doctor didn't need to see Marlon, and they said come back Monday. I swept the room today and we were both surprised (but not really) at the amount of “dust” that accumulated in a couple of days.  As the rash is healing his skin is flaking and peeling as if it was a sunburn. A stone ping pong table.  Marlon has played on various surfaces but said this one was completely different.

Dragged Marlon out for a walk this morning.  Even though the skin on his toes is peeling from where the rash was, he is still able to walk a bit more. I want to take him down to the water and the island but that is a bit more of a walk than he is up for.  And he doesn't really care.  For English he has to write and then speak about something he is passionate about.  I laughed and suggested online schooling and unclear questions.  He does not show much passion for anything but about school he can have a lot to say. He gets frustrated when a question is phrased in such a way that it can have different answers but one is expected.  He can be quite expressive. Not the water around here but the peace and tranquility…