Friday, February 5, 2016


Sometimes I feel like my life is a passenger in a car that drives terribly in traffic, stop...go...stop...go. We live three months at a time not knowing if we will get tossed back into surgery and chemo. Last week we had an MRI for Gracie and yesterday we went back to her brain surgeon to discuss her results. He feels that she is still stable. We have three areas of concern we are watching, she has a shadow on her brain stem that may or may not be a tumor but right now it is not picking up enough contrast to be a huge concern. Her C1 vertebrae is still pinching her brain stem but there is enough spinal fluid getting to her brain that we do not need to surgically intervene. Last concern is her hypothalamus and optic chiasm, her right side is greatly enlarged compared to her left. It is causing hormonal issues and we are unsure if there is a tumor hiding in there making it appear large.

For now her team wants to just continue monitoring and put her in endocrinology for the hormone issues and physical therapy for her other issues. Since there are no local pediatric physical therapists we will be going to Stanford once a month and then I will be doing the exercises with her at home instead of going once a week. I am thankful she is able to avoid surgery and chemo but I must admit I was hoping for one or two issues to self resolve. It is so hard to live in this constant state of anxiety, unsure of what the future holds. If  our little warriors have taught me anything it is to enjoy the day you have today and never look too far ahead.

Thank you for all your continued prayers for Gracie. Emma is next up, on March 9th she has a minor surgery and an MRI of her head, spine, and pelvis. We are slightly concerned she might have a new tumor in her pelvis. It will be a very long day, starting in the OR and ending in the Imaging room.

On a positive note, Gracie's Make a Wish should be happening soon. We are still waiting to hear back on which wish they will grant and the time frame. I am hoping we can do it sometime late Spring before school gets out. That is a perk of homeschooling, we can vacation in the off season!