Today started beautifully. She called for me in the middle of the night to bring her into our bed. I happily did. We slept like we did when she was a baby…wrapped in each other. I breathed in her scent. She rubbed Tonys head and face and pulled him into her. She held her baby sister.
She even drank some water.
Tony brought her the radio he bought last night and she loved it. Then we headed to Palo Alto.
I am going to cut to the chase. Tonight I need to be with Tony and he needs to be with me . . . but we agreed to update on here. We belong to each other . .
What I posted about new tumors wasn’t exactly right. Its not brand new different kinds of tumors in her frontal lobes . . . Its a progression of sorts of her DIPG tumor. And some new ones “sugaring” on her spine as well as grown in her spine.
We accessed her port to get her some fluids and hopefully get her over this vomit cycle. Her last time in the hospital…should be cause for celebration . . . Its not.
It is very aggressive. Docs have never seen such a aggressive case.
1-2 months…mayyybbeeee 3 months. My momma sense says 1 month.
What we have decided..
We have chosen to start in home hospice care. We get on service tomorrow morning. They will help us keep her comfortable . . .
We could do chemo. But its been shown to be ineffective for DIPG and the side effects are just not worth it for us . . . well for her.
We have chosen to donate her tumors. All of them that Stanford can use. JLK will be part of the cure.
We have chosen to have the boys here off and on . . . but as much “on” as we can.
We have chosen to have Tony take this time off of work to be with her, and hopefully take time to rebuild ourselves and our family afterwards.
We have chosen to do our best to live, to embrace each other and every moment we can.
We have chosen life . . . her life. . . over the battle.
But she will never lose the battle to cancer.
It wasn’t a fair fight.