PENOCH016

Working through the news of Miles’s recurrence has been heart-wrenching and sombering.

Seattle Children’s has accepted Miles in their trial for Fimepinostat or PENOCH016. This involves an oral medication and a tumor resection/removal surgery.

We will likely be meeting with their team in the next week and moving forward quickly. The first month of the trial including surgery will involve living in Seattle again.

After the first month, all monthly follow ups can be at OHSU in Portland.

The side effects of the medication are very mild. Miles is excited to be a part of science as part of this trial is measuring if the medication can reach the tumor directly. Imagine the possibilities in the future for kids or anyone with brain cancer!

His MRI today showed a 10-20% growth in the tumor from the MRI on 12/22. We know that a surgery is the best and most effective way to eliminate the cancer.

Our family finds hope in the amazing team at Seattle who leads the country in Medulloblastoma in pediatrics and we are ready for another battle.