A Warrior’s Journey – Research, Clinical Trials and Treatments Tailored to Beat Brain Tumors

Saige Maxville is a proud member of the Choctaw Nation of Oklahoma. Her heritage and family are incredibly important to her, affecting how she lives her life and what she hopes to achieve. At 24, Saige is enrolled in college studying to be a teacher, with dreams of teaching history. She is also a vibrant member of the Tulsa Oilers Ice Girls team. But Saige has been on a difficult medical journey that few would ever suspect.

In 2012, as a young teenager, Saige had her first noticeable seizure. She remembers it clearly as she was at a friend’s house. Her mother took her to see the doctor, and as there was no obvious reason for the seizure, they decided it was an isolated incident. Up to 11% of the U.S. population will have at least one seizure in their lifetime, so without an identifiable cause, the doctor wasn’t concerned at the time.

However, the seizures continued and grew worse, but the cause remained a mystery. Brain MRI’s showed nothing of concern and in every other way, Saige was physically healthy. Certain triggers for the seizures were noted; stress, anxiety, depression and sleep deprivation, and also, the seasons. Saige’s seizures increased over spring and summer with the heat, and this was also the time when she started dancing more in the run-up to hockey season in the fall.

Saige Learns Cause of Her Seizures

The seizures continued for years, and when Saige transferred from a pediatric neurologist to an adult neurologist, an MRI revealed that Saige had a brain tumor.

“We have no idea when that tumor got there,” she said. “To this day we have no idea when it showed up. We don’t know if it is something I was born with and it gradually got bigger, or if it was something that had just started growing within the last few months or weeks. This remains a mystery.”

The good news from the doctor was that the tumor did not look cancerous, so they decided to just monitor it for a while. Statistically, about 71% of all brain tumors are benign, with meningiomas being the most common intracranial tumors.

Once Saige turned 20, her seizure activity increased and the neurologist ordered another MRI. The results revealed the tumor had grown and Saige was referred on to see a neurosurgeon. The neurosurgeon confirmed that the brain tumor was slow growing and appeared to be benign, so advised that it be left alone for the moment. Within a few months Saige was experiencing daily seizures.

Saige recalls having seizures almost every morning and missing work because of them. The seizures were affecting her mental health so her neurologist set up another MRI. The MRI was performed and Saige received a call advising her to set up an urgent appointment with her neurosurgeon.

“That scared us,” Saige said. “The results showed that the tumor had grown substantially.”

Saige’s neurosurgeon agreed that with the acceleration in growth, the tumor needed to be taken out, even though he still believed it was benign. Shortly after the tumor was removed, Saige and her family were told that it was in fact, a malignant tumor. This shocked not just her, but all of the doctors involved in Saige’s care. Saige was referred to an oncologist and radiologist where she was told that her tumor was a glioblastoma grade IV, which is a fast-growing and aggressive cancer with an average survival time of 12-18 months.

Saige said, “I was told that a lot of people don’t make it past 15 months with that diagnosis, and the most they make it is two years. For someone in their prime, in their 20s, to be told they are possibly going to die, that’s a very traumatizing experience. I didn’t know how to react, I was frozen solid. I couldn’t move and I remember thinking that time had stopped.”

A Rare Type of Tumor and the Will to Survive

Saige and her family were advised to do everything they wanted to do together, while they had time, and they took that advice. But Saige refused to stop fighting and allow the cancer to take her.

“I knew that if I just sat down and took it, it would kill me and I was not ready to die. I told myself I wasn’t going to die and I was going to fight, and do everything I had to do to live.”

Saige was referred to OU Health Stephenson Cancer Center neuro-oncologist James Battiste, M.D., for a second opinion. The first thing Dr. Battiste and his team did was re-assess the tumor sample slides. They deduced it was either an epithelioid glioblastoma (WHO Grade IV), or a pleomorphic xanthoastrocytoma —most likely a combination of the two. Molecular testing revealed a mutation called BRAF V600E. This meant that they could target the tumor cells with two specific inhibitors against that mutation.

Saige’s particular brain tumor was rare. “I believe that each patient’s tumor and experience is unique,” said Dr. Battiste, “but Saige’s tumor was more so than most.”

Dr. Battiste started Saige on six weeks of radiation combined with chemotherapy. Due to the aggressive nature of the chemotherapy, she was extremely unwell and struggled with debilitating side effects. Despite the sickness and fatigue, it was the loss of her hair that was so devastating to Saige.

“To a lot of native American cultures, our hair is so important,” explained Saige. “It is an extension of our ancestors and to lose something so important to you is traumatizing. We did a special hair burning ceremony —my family and I —as we didn’t want that hair to go to waste. We wanted to give it back to the creator.”

Following the six-week treatment, Saige continued with a maintenance dose of chemotherapy for another 12 months.

Clinical Trials and Being a Warrior

Saige did beat cancer and her moment of victory came when she rang the bell for cancer survivors at Stephenson Cancer Center.

Dr. Battiste was encouraged by Saige’s fight for her life. He said, “Saige had a lot of energy and she never said no. She was fighting and wanted to keep going even when she was struggling with the effects of chemotherapy. I cannot say enough good about Saige and how hard she fought.”

Saige attributes her strength to her culture.

“My passion for my culture and my people is what helped me fight. When you are interconnected with something that is deeper than your individual self, you feel like you have power behind you. Being able to do the same practices that my ancestors were able to practice is something very powerful to hold onto,” she said.

A top enroller in Phase 1 clinical trials in the nation, Stephenson Cancer Center researchers at OU Health Sciences are committed to contributing to the future of cancer treatments and changing the standard of care. While Saige did not herself take part in a clinical trial, she benefitted from those who had participated before her, helping to individualize her treatment in a much more specific way.

“Saige benefitted from the knowledge we gained from those clinical trials,” explains Dr. Battiste. “A huge thank you to all the patients and their families that participated in those other trials, as they laid the ground work for our treatment going forward.”

Saige is filled with gratitude to the doctors in her care, “I wouldn’t be sitting here without their expertise and knowledge and ability to take something that hasn’t been in existence before —my tumor, which is something new —and to make a treatment regimen for that. As my tumor hadn’t been diagnosed before they customized a treatment that was the best method for me.”

Saige wears a T-shirt that says, A Warrior’s Journey, in Chata Anumpa, the Choctaw language and explains, “I consider myself a warrior — someone in the tribal community who is a leader; someone who can stand up to anything, look in its face and say, ‘You are not going to take me, I’m going to take you instead.’ And someone who can make an impact for the community, especially for the youth.”

Learn more about brain and spine tumor treatment at OU Health Stephenson Cancer Center, or request a second opinion by calling (855) 750-2273.