L and B came Saturday night and we had such a nice dinner out in Hyde Park with Brian. I took them to the only restaurant I could think of: The Cock and Bull. So, naturally Blaise had to make comments about penises. (Penis’?) (Peni?) oh, nevermind.
We all shared the BMT Suite and some would think that would be awkward, but it isn’t. I was married to Brian and I am lucky that we are friends to the extent that we are. That he is supportive and a kind person. Or he can call me an idiot and I can laugh. I call that friends. It wasn’t weird that he was in his pjs next to our sleeping son in the morning. It was just an extension of a million years ago with boundaries long ago placed. We both love our children and he has taken on much more of the raising of them than I could ever have imagined.
I was very sad when they left. Bereft, actually. I am not a big fan of crying but I did. it’s just unnatural…not having them with me.
Nevertheless, we are making babysteps back to normalcy. Ashton’s skin looks 80% normal. Right now he’s being “tortured” by being washed. We are part way through the intestinal issues of GvHD. Not the pain part of it. High fevers.
He’s having photopheresis now and then we are going to try the move back to the BMT floor this afternoon. I am nervous about that. But if we can pull it off, it is a huge step.
I’m so proud of him.
Now, if he can stay out of ICU I need to go pack up my house. YAY.
Keep up the good work, baby… love
Carla Linkous
My thoughts and prayers for everyday to you. Ashton, mom, Linda and grandmother. Keep doing well and know you are loved from so many of us. Keep up your strength . Love you. Carla