Daily Archives: May 4, 2016

My Shoes Are Rosy Pink

Today’s #GoGrayForMay post is somewhat of a birds eye view into the spastic, forever insecure, roller coaster, which we #DIPG families call life.
A therapist told us recently that DIPG families walk out of their initial diagnosis with PTSD. The ups, the downs, the terminality of your child’s future. And it’s true…
Yesterday #KatherineTheBrave had a wonderful day. She smiled, she laughed, she walked with her walker, and posed. She sang a song… That brought us so much joy. In the evening she followed up her great day with coughing, choking, she couldn’t speak normally, see us, or breathe. Hospice was called. That was followed by her eagerness to make us believe she was fine. She was trying to ease our worries of her. She does this often.
We combined a video of her day for you all to see, and hopefully share to spread awareness. She went from a happy, carefree, little girl, to a cancer ridden, pain suffering victim, trying to bring up phlegm that her throat muscles would not do on their own because her cancer is invading her brain and pushing up against vital areas, telling functions to no longer perform properly.
Trust me when I say that we take our innate subconscious physical body functions for granted.
So within 12 hours, my child lost her ability to be a normal child. She was teased with normalcy. And this morning she was back to being a happy go lucky kid again.
#NotOK #MoreThanFour #DIPGMonster #KatherineDeservedMoreThanFour
Thank you #SuperSib Tori for putting this together. Sorry everyone for the graphic video. It hurts to share this, but Katie’s legacy will be the #truth about DIPG.