Ava

On May 18th 2019, Ava woke up, played in her soccer game and later that evening developed a headache. That headache continued into the next day and became worse as the day went on. We ended up in the ER that evening and our lives changed forever.  

My then 10 year old daughter Ava was diagnosed with ATRT in her right frontal lobe. She had a gross total tumor resection. We did cranial/spinal proton radiation followed by a very modified Dana Farber protocol. She has since had recurrence twice in the same tumor bed, once in June of 2020 and again in June of 2021. 

In 2020, she again had a gross total tumor resection followed by Alisertib. The Alisertib did not work for her and again, she had recurrence. She went through yet another craniotomy. Unfortunately with this surgery, she had some tumor residual, as it has now moved over to the left lobe. She is currently receiving IT Topitecan and we are awaiting to obtain Tazemetostat.

Throughout this whole journey, we have been blessed with the best family, friends, and medical teams! Our support system has been amazing! Ava remains so strong, brave, and resilient, as we continue to fight this nasty beast!

Update for Ava's 13th birthday, June 8, 2022:

Ava remains on Tazemetostat and continues to have stable MRIs following photon radiation and  gamma knife this past year. Next set of scans are scheduled for the end of July. She will be in 8th grade next year and can’t can’t wait to enjoy the summer with friends!

Update for Ava's 14th birthday, June 8, 2023:

Ava was on Tazemetostat for 15 months with stable MRIs for over a year! Unfortunately, at the end of April, she developed T Cell Lymphoma and is starting the Consolidation portion of treatment. The good news is her last brain MRI at the beginning of May was negative! Ava will continue to fight this fight and defeat both cancers now!!!

Update for Ava's 16th birthday, June 8, 2025:

One-third of the way through T-Cell Lymphoma treatment, Ava had another battle to face: complications from treatment. She spent 100 days in the hospital with sepsis followed by renal failure, then a brain bleed complicated by seizures. To top it off, at discharge, her stable ATRT brain tumor grew. 

In the Summer of 2024, Ava went through a 12-hour craniotomy. The surgery was pretty successful, with only a small area of residual tumor left. She then had gamma knife radiation surgery to the residual tumor with good results. But in December 2024, the tumor returned in another area. She was very fortunate that this area had not been treated by radiation yet. In January 2025, Ava had gamma knife again, and started a modified MEMMAT protocol.

We are so happy to report that her most recent MRI in March showed stable disease and no disease progress! And as a bonus, her T-Cell Lymphoma has not returned!!