When a child of any age is diagnosed with a brain tumor, it is often a journey the whole family will embark on. Zane Baker was diagnosed with an oligodendroglioma at age 20. He was hospitalized following a seizure and his first call was to his parents. While Leigh and Bert Baker were a hundred miles away, they dropped everything and came to Zane’s side. Since this time, they have balanced being caregivers and supporters for Zane and letting him make his own decisions about life post-treatment as he is a young man living on his own.
Zane’s first big decision was to continue the path of pursuing a higher education in music. He had recently changed the focus of his studies and enrolled to study music at McEwan University. He was diagnosed with a brain tumor just 10 days before the term started, and he made the decision to start anyway. Zane navigated seizures while he began his music school journey, and in 2018, following a debulking procedure he also experienced partial paralysis on his right side. And yet, he kept drumming and studying music all through his rehabilitation.
“Zane is an inspiration … he was able to keep his music alive” said his mother, Leigh. “I admire his perseverance and passion for music,” she added.
Finding Proton Therapy
Leigh began to research treatment options for her son and soon discovered proton therapy. The oncologist on Zane’s cancer care team was familiar with this type of radiation treatment and was supportive in the Baker family seeking information and options for proton therapy. Ultimately, they were able to secure a second opinion to see if proton therapy was a viable option for the next step in Zane’s treatment. The radiation oncologist in Zane’s Canadian care team recommended Jacksonville as he was familiar with UF Health Proton Therapy Institute.
Finding a Community Far from Home
“We felt supported from the beginning,” said Leigh about their arrival at the Institute in Jacksonville. Zane began a combination of chemotherapy and proton therapy. Leigh and Zane relocated to Jacksonville while Zane underwent treatments. Bert stayed home in Alberta to care for Zane’s three younger siblings.
The transplanted Canadians felt at home right away. For Zane, playing his music was instrumental in making him feel safe and helped him get through the hard days – dealing with a brain tumor at a young age. He was able to secure drum lessons in Jacksonville while undergoing treatment and it was something he looked forward to.
Zane and his loved ones lived at Third & Main and met two other families who had young adults in treatment at the Institute. Leigh says the network of caregivers in the proton community was most helpful in getting her through the hard days. She met other families and patients at the Institute who she has maintained a connection with in the four years since Zane completed treatment.
Leigh said she met a neighbor in the community – Sherry - who had a young adult child diagnosed and treated with the same type of brain tumor the year before Zane. She was incredibly welcoming to Leigh and her family while they were in Jacksonville. Sherry showed them where to go around town, welcomed them into her home for dinner and even helped Zane’s girlfriend find a keyboard and bicycles for them to ride.
A Beacon of Hope for Others
Leigh said she wants to share her son’s story and their shared journey in hopes that other parents going through similar situations won’t feel so alone. Through the Brain Tumor Association of Canada and other online support groups, Leigh welcomes the opportunity to talk about what Zane and their family have been through. She also likes to educate people about proton therapy for young adults with brain tumors.
In the six years since Zane’s diagnosis, his tumor has stopped growing and he is healthy. He recently graduated from his university with a Bachelor of Music- Performance Major. He immediately went out on tour as a member of several different bands.
“You don’t know what the future holds when you’re facing a brain tumor diagnosis, but Zane has always chosen to be positive and continue to move forward,” said Leigh.
Following his graduation, she is proud and happy to see him making plans for the future and living the life he dreamed of, playing his original music to crowds of people, and composing his own work.
“That daily anxious feeling has passed and there is so much to celebrate these days,” said Leigh.