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
May 9th, 2012 at 1:22 pm
My heart is just breaking and tears are streaming down my face. I’ve put Gus on every prayer list I have. I hope that you guys can get him comfortable again and find another plan of fighting action- he’s such a strong and brave little boy! Love to you all…
May 9th, 2012 at 1:39 pm
Not giving up yet!! God is bigger than cancer, I am crying out to Him!! I speak to that cancer in Gus’ body and I command it to leave IN THE NAME OF JESUS!!!!!!
May 9th, 2012 at 1:42 pm
It always hurts my heart to see precious children and their families go through things such as cancer, but just know that you all have some amazing prayer warriors on your side. I pray for God’s healing over your cutie pie Gus and over your family!!! Cherish each and every day as a celebration of happiness and what a blessing he is to you all!
May 9th, 2012 at 3:46 pm
My heart reaches out to you Erin. Mother’s should not have to endure what you have gone through and will go through. Please know your in my thoughts and prayers. I will call and put your names on the temple prayer role. I wish there was something more I could do to comfort you. Big HUGs from one mom to another <3
May 9th, 2012 at 6:14 pm
There are no words to let you know how much love and how many prayers we are sending your way. We love you all and are here for you with whatever you need, whenever you need it. XOXO
May 9th, 2012 at 9:09 pm
So many tears are flowing right now as we cry out to the God of love and peace. We pray that He will embrace Gus and give your family strength, guidance and peace. We love you and pray daily for Gus.
Elain & Joe
May 11th, 2012 at 12:11 am
Erin, my heart breaks for your family and little Gus! I’m praying that God will strengthen you and carry you through this agonizing journey.
May 12th, 2012 at 4:18 pm
Thinking of you all this morning. Sending love and strength your way.