Dr. Mazewski called me around 7 pm tonight and I was surprised to hear from her. She is not one of the doctors running the trial and did not order the MRI. As soon as I heard her voice, my heart sank. She was calling to inform me that we could stop the Novartis Hedgehog drug as it was not working, the cancer has continued to spread. I could hear the disappointment in her voice and she could hear my voice cracking, on the verge of tears. The coating of tumors along the spinal cord has continued to thicken and is now causing actual spinal damage. The small scattering of tumors on top of his brain have all continued to grow. The major new growth is unfortunately around the brain stem.
At this point the cancer progression is too great and our options of chemo and radiation are to provide relief of symptoms and prolong his time with us.
We will be meeting with both Dr. Mazewski and the radiation oncologist at Emory to discuss our treatment options. We certainly have not given up and we still have hope. It is just going to take some time for us to process everything and adjust. My main priority now is to get Gus feeling better. Now that we have a clearer picture of what is causing the pain we can start managing it properly.
Thank you so much to everyone out there praying for us and sending us messages of hope and love.
May is Brain Tumor Awareness Month and I can’t think of a better time than now to share Gus’s story with others that you may know in order to spread awareness–WE MUST FIND A CURE!
My lovely friend Mary made this. Please feel free to download, use it as your facebook photo, etc. to help share our story and raise awareness.
I will post more details as they come.
xoxo Mama E