Birthday Boy Finishes Treatment!

Charlie Brimley was taken to the ER when he was eight weeks old because his legs stopped moving. They found out he had a large tumor that was compressing his spinal cord and causing partial paralysis. He was diagnosed with a rare form of cancer called Primitive Myxoid Mesenchymal Tumor of Infancy (PMMTI). This cancer only has about 30 reported cases worldwide and, therefore, no treatment plan. In fact, it is so rare that his oncologist had to reach out to other doctors around the world who had treated PMMTI before and came up with a plan based on concepts, instead of data.

Charlie started chemotherapy in April 2019. He received MRIs every six weeks of his treatment to monitor whether or not the chemotherapy was working. Thankfully, the chemotherapy shrunk the tumor! Through study and contemplation, Charlie’s oncologist realized that chemotherapy probably would never totally cure Charlie and that Charlie would need proton radiation therapy. Since PMMTI is so rare, there is little research on how to treat it. Despite the uncertainty, Charlie followed the treatment plan and had radiation therapy Monday through Friday.

The Brimleys shared that because of the rarity of PMMTI, it was difficult to connect with any other families who had experienced what they are going through. Over the next few months, they found more and more people in similar situations and created the first PMMTI support group through Facebook. They have been able to connect over ten families so far who experienced PMMTI and more come into the group almost every few months. It has proven a great resource to bring hope to families and share stories, just like Icing Smiles strives to do.

Charlie finished proton radiation in the Fall and continued to finish the determined chemotherapy regimen. In December of 2019, Charlie Brimley finished chemotherapy treatment the day before he turned 1 year old, just in time to celebrate! Amazing Sugar Angel Davida baked a beautiful black and gold cake, utilizing the colors of childhood cancer and the Brimleys’ favorite football team: The New Orleans Saints.

Charlie loved smashing his cake! The celebration was amazing. Six weeks later Charlie had his first post-treatment MRI and it showed, for the first time, no evidence of disease! Charlie was officially in remission!
You can read more about the Brimley’s incredible journey on their website: http://scottandshelbybrimley.blogspot.com.

With smiles,

Olivia Graupmann

The Blog Team 

www.icingsmiles.org