Ava

Ava was a true testament to strength, courage, and hope. She remains a guiding light whose presence, even in death, continues to guide those who knew her through our paths in life. To know Ava was to understand the immense impact a beautiful soul can make on the world.

Throughout her 6.5-year journey fighting ATRT, Ava never complained. She was the absolute definition of bravery, sweetness, and love, and the silliest, most joyful human to everyone who knew her. Her laugh was contagious, and her radiant smile and beaming light brought hope to every single situation.

Her family shares this beautiful reflection on her life and legacy:

"I can’t help but believe that she was given to us as a gift. I believe that her passing on Christmas Day was a sign and testament of her ATRT journey and God's plan for her. Even though her life didn’t end the way we hoped, the fact that she lived 6.5 years fighting ATRT means her treatments will provide hope for those just starting this journey. We believe we are getting closer to finding something that can stop this type of cancer. Her joyful spirit will live on forever."

Honor and Remembrance: Ava’s Fighter Journey

Below are the archived updates and milestones from Ava’s time as an active ATRT Fighter. We look back on her miraculous journey with endless pride and love for the beast she fought so hard against.

The Diagnosis

On May 18th, 2019, 10-year-old Ava woke up, played in her soccer game, and later developed a headache. By the next evening, the pain worsened, leading to an ER visit that changed everything. Ava was diagnosed with ATRT in her right frontal lobe. She underwent a gross total tumor resection, cranial/spinal proton radiation, and a modified Dana Farber protocol.

Overcoming Recurrences (2020 - 2021)

Ava faced recurrences in June 2020 and June 2021. Through a second craniotomy, trials with Alisertib, a third craniotomy, IT Topitecan, and eventual access to Tazemetostat, Ava remained strong, brave, and resilient. Surrounded by an amazing support system of family, friends, and medical teams, she continued to fight.

Update: June 8, 2022 (13th Birthday)

Ava remained on Tazemetostat with stable MRIs following photon radiation and gamma knife surgery. With her next set of scans scheduled for late July, she looked forward to entering the 8th grade and couldn't wait to enjoy the summer with her friends.

Update: June 8, 2023 (14th Birthday)

Ava was on Tazemetostat for 15 months, maintaining stable MRIs for over a year. Facing a new hurdle at the end of April when she developed T-Cell Lymphoma and started Consolidation treatment, she still received great news: her brain MRI at the beginning of May was negative. Ava vowed to fight and defeat both cancers at once.

Update: June 8, 2025 (16th Birthday)

One-third of the way through lymphoma treatment, Ava navigated severe treatment complications, including a 100-day hospital stay fighting sepsis, renal failure, a brain bleed, and seizures. To top it off, at discharge, her stable ATRT brain tumor grew. 

In the Summer of 2024, she underwent a successful 12-hour craniotomy and gamma knife radiation on the residual tumor with good results. 

But in December 2024, the tumor returned in new area that had not been treated by radiation yet. So, in January 2025, Ava had gamma knife again, and started a modified MEMMAT protocol, achieving stable scans by March 2025 with no lymphoma return.