Seeing 12-year-old Amelia gracefully skate on ice, you’d never guess her challenging journey. Her life turned upside down in February 2024 when she suffered a seizure in front of her family. It was the most alarming sign of what turned out to be a very rare brain tumor. Thanks to her determination combined with the expert care and state-of-the-art technology offered at Children’s Minnesota, Amelia is seizure free and back to enjoying a sport she loves.
Brain tumor symptoms
The symptoms of Amelia’s brain tumor began nine months before the diagnosis. First it was tingling in her hands and drooling. These would later be classified as minor focal seizures – or seizures that happen in one part of the brain. Then came the repeated headaches, usually happening at the same time each day. Finally, the more obvious seizures began.
The first one happened while she was in school. However, it was mild enough that it wasn’t recognized at that point. When she went home and told her family about it, she had another seizure – this one much more noticeable.
Her mom Danielle immediately took her to the local hospital in their hometown of Luverne, Minnesota, where a CT scan revealed a tumor in her brain. This led to a transfer to Sanford Children’s Hospital, a hospital in Sioux Falls, South Dakota, where Amelia was admitted to the intensive care unit (ICU).
First brain surgery and diagnosis
Just days after the seizure, Amelia had brain surgery. The surgeon removed as much of the tumor as possible before he had to stop because a vital artery was going through the tumor. Trying to remove the entire tumor risked Amelia losing strength in her left arm and leg which would have significantly impacted her daily life.
The surgery did allow the surgical team to get enough tumor for testing to confirm the type of tumor. Waiting for the official diagnosis was overwhelming for the family. “Waiting for the final diagnosis about what type of tumor and its grade was the most agonizing time throughout all of this,” Danielle shared.
The tests revealed that Amelia had a very rare type of tumor called pleomorphic xanthoastrocytoma (PXA). According to estimates from the National Cancer Institute, there are 1,400 people who are currently living with this tumor in the U.S. and about 320 of them are estimated to be under 20 years old.
Since some of the tumor remained following surgery, Amelia went through several rounds of chemotherapy. Unfortunately, the tumor was not responding to the treatment. In addition, she was still having seizures that felt like a tingling sensation in her hands and legs two to three times a day, despite being on medication.
Children’s Minnesota panel reviews Amelia’s case
A new option for Amelia and her family came in June 2024. Catherine Nelson, DO, a pediatric oncologist at Sanford Children’s Hospital, reached out to Anne Bendel, MD,research director of neuro-oncology at Children’s Minnesota, for a second opinion. Amelia’s case was reviewed by a panel of kid experts that included neurosurgeons, neuro-oncologists, neuroradiologists, neuropathologists and geneticists. The panel recommended that Children’s Minnesota had the experience, skill and technology to provide Amelia with the opportunity for best outcome – complete removal of the tumor.
Dr. Nelson shared the news with the family and soon after they had a virtual consultation with Meysam Kebriaei, MD, medical director of neurosurgery at Children’s Minnesota.
“Dr. Meysam – he was amazing,” Danielle recalled. “Right away he said, ‘I feel like we can remove this.’ We had our guard up. But he answered all our questions which made us comfortable moving forward with a second surgery for Amelia.”
Second brain surgery
In September, Amelia and her parents came to Children’s Minnesota’s hospital in Minneapolis for her second brain surgery. The delicate, nine-hour procedure to remove the tumor took place inside The Richard M. Schulze Family Foundation iMRI Surgical Suite – the first pediatric neurosurgery suite of its kind in North America. The scanner takes crystal-clear images mid-procedure to confirm if an entire tumor is removed – without leaving the operating room. The scan during Amelia’s surgery showed the procedure was a success.
“Surgical removal of tumors like Amelia’s are known to be more difficult which is why the iMRI suite and real-time imaging is so vital in cases like hers,” said Dr. Kebriaei. “We are thrilled to see her progress and believe she has a bright future ahead of her.”
Amelia was back home with her family a few days later and has been seizure free ever since.
Cleared for figure skating
Amelia continues follow-up care at Children’s Minnesota. In December, after an MRI continued to show no evidence of the tumor, she was cleared to resume figure skating – a passion she has pursued for four years.
Seeing Amelia back on the ice, in school and enjoying life, Danielle is grateful for the care and support her daughter received at Children’s Minnesota.
“If another family is going through something similar, I want them to know Children’s Minnesota is a place they can go and have a great team.”
