Focusing on the positive. Trying, still, to ascertain which doctors are painting a pretty picture and which ones are just so used to their jobs they don’t mind being straight with you. Dr. Grimley came in yesterday (and I love his name). He was the one who diagnosed Ashton in the ER months ago and I cursed him like a sailor. He also has a fantastic sense of humor, has a great way of relating to parents and does not mince words. He’s the BMT guy who went to get the cells.
Yesterday he said, yeah, he’s doing pretty much what we expected, “but we haven’t won the lottery yet”. Also, his liver is enlarged so, “don’t go taking him to any frat parties.”
Yesterday was ‘cray-cray’, to quote my eldest children. Day four of steroids. I will never understand why a grown man would purposely inject that in to their bodies. It changes you, and not in a nice way. They did it to make his God-awful vomiting and fevers go away. That was successful 85%. He did throw up still and had a high fever overnight anyway. And yesterday, wow, that kid was meaner than a junkyard dog, to quote his Nonni. I thought he was gonna pop a vein somewhere. This went on for 11hours. Just non-stop abuse toward anyone who opened the door, even his favorite people, like Melissa and Deja.
Melissa is his physical therapist and she’s been a mainstay since Central (two months ago) when he was not in isolation and she could take him UP! the elevator to a WHOLE! different floor to a GYM! and play basketball. They forged a cool friendship. He trusts her. He screamed at her when she came in then decided he remembered her. Her job is to get him out of bed. I saw him smile once yesterday while she was here :). That smile so tucked in to his puffy lil’ steroid face. Poor Deja, she is the teacher. She hasn’t earned her stripes yet. He roared her out of the room. Wonder if she’ll come back?
We really need this engraftment to occur. We really need NO GvHD. We really need to go home.
I really need to fly to Chicago on the 19th for Blaise’s birthday. I’m really afraid of putting out that cash as I have not been working and don’t see work in my future. Struggling with that this morning. Driving seems futile as it would be almost as much in gasoline as to fly and I could spend more time there if I flew. It would be another first: missing a birthday party.
2014: A Year Of Firsts.
Praying for all things good and for Hulk to be able to just be Ashton again.
Love you all….
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