The Beginning

In mid-September, Bea developed persistent headaches, vomiting, and fatigue — what we thought was an innocent stomach bug. After a doctor reassured us, sending us home with Zofran and Pedialyte, her symptoms worsened. We took her to the ER at Westchester Medical Center, where imaging revealed a 5-centimeter mass in her right frontal lobe. We decided to transfer to Hassenfeld Children’s Hospital at NYU for surgery, where Dr. Harter performed a successful resection. Pathology later confirmed the diagnosis: Atypical Teratoid Rhabdoid Tumor (ATRT), a rare and aggressive brain tumor.

Thanks to generous introductions from our community, we were able to discuss the two different treatment protocols available for ATRT with leading physicians across the country, and had multiple institutions review Bea’s case on their cross-team tumor boards. Our conversations included doctors at St. Jude, Dana Farber, CHOP, Seattle Children’s, Johns Hopkins, Memorial Sloan Kettering, and more. After receiving nearly unanimous feedback, we ultimately decided to move forward with the ACNS0333 protocol, and to remain at NYU under the care of Dr. Clymer.

After surgery, Bea recovered well, but ended up requiring an additional procedure to place a ventriculoperitoneal shunt to drain cerebrospinal fluid buildup in her brain. Unfortunately, the shunt later became infected and her symptoms of vomiting and headaches returned - necessitating another scary trip to the ER. The team determined that the shunt needed to be removed immediately, so she underwent another surgery so they could replace it with a temporary external drain (EVD). This setback delayed the start of chemotherapy, and means that we will remain in the PICU until the drain is re-internalized (at least another month or so). Thankfully the infection has since cleared and Bea’s care team is confident she’s ready to move forward with treatment.

This week, Bea began her first round of chemotherapy, marking the official start of her treatment protocol. In the coming months, she’ll continue with four more cycles of chemo, followed by six weeks of proton radiation at the New York Proton Center.

It’s been a difficult start, but Bea has shown remarkable strength through every procedure and hospital stay, and is still laughing and smiling through it all.

We’ll use this space to share updates as her treatment progresses and to keep family, friends, and supporters informed along the way.

With love,
Shannon and Brooks