I’ve never waited quietly for anything.
I’ve certainly never waited for (or ever thought about) good or bad white blood cells. Or bone marrow. Or Stem cells.
I’ve never waited.
I just plowed forward or I stopped trying altogether. Now, neither is an option.
Ashton is being changed, as I am. Difference is, he is learning as a five year old the patience I’ve been grasping for my entire life.
I have developed a daily schedule for him in hopes it will show that another day has passed and there is a method to the madness. I’ve been advised, even very sick children need structure and discipline, else we create a monster succumbing to their every whim out of guilt and fear.
He had a GREAT day today and nurses and doctors are a bit surprised he isn’t sick. Definitely low energy and pale still. But, his count was 1000 today and the doctor allowed him to go outside (with a mask) to the hospital playground! He got to swing with Nonni and me! It was last Sunday, the last time he breathed outside air.
It won’t be long until he cannot go outside at all. Yesterday I thought about his hair. Today, I’m thinking of the swimming pool and the lake and the water park, none of which he be able to go in to due to his port. I allow a few minutes of sadness each day.
Now I’m going to check out Acor list-serve for AML. AND PRAY.
Mitch Gilliam
Ashton, I am so, so proud of you. You are truly a “Super Hero”. I know how hard all of this is for you and I want you to know that, even though I can’t be with you because of my bad cold, I am there with you every minute. I see the picture of you in your Superman cape and I know you were just practicing for these days in the hospital. You truly are Superman and with God’s help, you will kick leukemia’s butt. I am thanking God every day for your complete healing. I ♥ you, Boy.
ashton.Admin
Love you, Dad/Grandpa! The strength Ashton has combined will all of ours, will get him/us through this. June of 2015, we won’t just be celebrating my wedding, we will be celebrating a new beginning for all of us.