At a routine eye exam in January 2022, Makayln’s optometrist noticed she had swollen optic nerves. Her mother Nikkie mentioned other recent unexplained symptoms like vomiting and headaches to her optometrist. After consulting with her pediatrician, both doctors recommended she go to Oklahoma Children’s Hospital for further testing.
The family packed a bag and took the two-hour trip to Oklahoma City. They sat in the waiting room for over four hours before she was seen and routinely tested for COVID-19. Although she was asymptomatic, she tested positive. This added a layer of complexity to Makayln’s experience in the hospital and her ability to see family members. They were very thankful the hospital allowed her mother and grandfather to be with her so she wasn’t alone.
After a CAT scan and other tests, Makayln’s doctor found a mass in the cerebellum of her brain. She was diagnosed with juvenile pilocytic astrocytoma at age 15.
Days later she had a 7-hour surgery that removed the tumor. Makayln will need reoccurring scans to make sure there is no regrowth, but overall the surgery went well and she has few lingering symptoms. Although the thought of having a brain tumor was scary to her family, they remain very optimistic about her future.
Makayln stayed strong through her journey and she wouldn’t describe herself as nervous or sad about the process. She shared that “Even though brain tumors can be scary and dangerous, they can also bring a family together.”
Her brain tumor diagnosis pulled her family together in a different way and they are all stronger because of it. Her diagnosis and surgery happened so fast that they had little time to dwell, but they all found strength in each other to get through the fear of the unknown.
Children with brain cancer can’t wait another week, another day, another minute for your support. When you donate to the Pediatric Brain Tumor Foundation, you help fund life-changing research and provide families with the resources and support they need. Don’t let pediatric brain cancer steal another future.
Although it was nerve-wracking to go back to high school after surgery, Makayln’s friends helped her through the transition and made her comfortable and confident returning. Her family was worried that she would be bullied, but luckily that was not the case. Less than a month after her diagnosis, she went back to school and got back into her interests of drawing, painting, and pottery. Her art was even on display at an exhibit in Tulsa, Oklahoma just months after diagnosis.
Nikkie discovered the Pediatric Brain Tumor Foundation through Facebook and found comfort hearing other families’ stories who have gone through similar journeys. These family stories and PBTF’s resources were also helpful for her while their family educated themselves on the intricacies of a pediatric brain tumor diagnosis.
“When I was in a panic trying to learn anything and everything about brain tumors, PBTF’s Facebook page was so helpful. Google can only tell you so much, so it is nice to hear about real families who have a similar diagnosis as Makayln. PBTF’s Facebook page and resources gave us so much comfort.”
When your child is diagnosed with a brain tumor, you may feel overwhelmed and alone. The Pediatric Brain Tumor Foundation offers a community for you and your family every step of the way. Visit www.curethekids.org/family-resources to explore the resources we offer or fill out our Family Connection Form at https://curethekids.org/connect-with-us to connect with our team and learn more about our community of support.
My brain tumor experience is something I think about every day of my life, but the outside world likes to erase that and pretend it didn’t happen. It’s too “taboo” or “uncomfortable.” So, this year, on the 7th anniversary of my surgery, I want to talk about it.
In June 2018, Valentina was diagnosed with a pediatric low-grade glioma with a BRAF mutation. At the time, she was only one year old. Surgery was not an option, so her family had two choices for treatment—traditional chemotherapy or an experimental treatment suitable for her type of mutation.
Combining her love for reading and desire to give back to help kids with brain tumors like her, Zoe created Books 4 Brains to raise money for pediatric brain cancer research. Join her upcoming Books 4 Brains read-a-thon and support the Pediatric Brain Tumor Foundation's research funding efforts.
The Pediatric Brain Tumor Foundation (PBTF) proudly announces an infusion of $1 million to help researchers, led by Dana-Farber Cancer Institute’s Drs. Pratiti (Mimi) Bandopadhayay and Rameen Beroukhim, launch a study into a novel therapeutic target and expand their research into overcoming treatment resistance and rebound growth.
Recently, the Accelerating Kids' Access to Care Act gained significant momentum in Congress when Charlie, a 12-year-old brain tumor survivor and advocate with the Pediatric Brain Tumor Foundation, testified to the U.S. Senate Finance Committee about the hurdles families face when seeking treatment for their child. Now, to see it become law requires your immediate action.
