We met with Dr. Claire on Wednesday to look over Gus’s MRI. She was thrilled to inform us that things look amazing! There has been over 50% tumor shrinkage thanks to the radiation treatments. This was a far better outcome than any of the docs expectations. That’s our mighty warrior though, continuing to amaze us all. Many of the smaller areas of disease are very tiny or completely gone. The 2 tumors he has by his auditory canals have never shown any shrinkage until now, they are significantly smaller. The spinal area also showed much improvement. We are now able to actually see spinal fluid in the MRI, where before radiation, tumors were completely blocking the area. Obviously, we were hoping for a complete response, but the response we did get is miraculous in itself. I had 2 big questions for Dr. Claire. 1. Will the radiation treatments he had continue to work/ do we have a possibility of continued shrinkage?  She said that Gus’s radiation treatments could possibly continue to work for up to 2 years and yes, we could very possibly see continued shrinkage. She even gave us some hope and shared a story about a similar patient eventually having a clean scan several months after radiation. 2.What’s next? More chemo. When Gus’s blood counts eventually return and his body recovers enough from radiation, we can start chemo. Gus is still needing platelet transfusions every week and blood transfusions every 2 weeks so not anytime soon.

We got Gus back in physical therapy and he is going twice a week to help with weakness, balance, and gait training. We also got him a new walker to help him get around. He can walk without it, but not very far, and not without falling. This will help him walk further distances when we go places.

We will be getting his eyes and ears checked soon for any damage done during radiation. This is something that could worsen over time as well, but we will cross those bridges if we reach them. He is continuing to battle nausea aswell.

Please keep Gus in your prayers for continued healing and continued shrinkage of disease. Also if you can spare a prayer for Tony and I as well as we continue to navigate our family through the treacherous waters of this disease.

Hugs and kisses to you all!

Mama E