Hope for Ben

After days of groundwork, there is some hope.

This has been the longest 5-6 days of my life so far. The entire Easter weekend was a roller coaster of emotions. From despair, tears, nausea, laughter, smiles and hope.

After hours of research, hours of phone calls, making connections and working with wonderful people, we believe that we have found the best course of treatment for Ben.

Ben’s rare brain tumor is called a Diffuse Midline Glioma and it has a genetic mutation called H3K27M. There is a clinical trial which includes photon radiation along with an oral medication that specifically targets the proteins in this genetic mutation.

Today and tomorrow, Ben and I will be in Columbus Ohio to meet with the team of doctors who are specialists that are passionate about finding a cure to this horrible diagnosis.

I’m praying and believing for a miracle, that when the radiation team scans Ben tomorrow, the tumor will be smaller or completely gone! Keep us in your prayers 💕