Grace Wethor’s journey with a brain tumor began when she was 13 years old. She spent nine months in and out of doctor’s offices since she consistently felt sick and suffered from headaches. No one could figure out what was wrong.
A pediatrician said she was making it up — that she was depressed and wanted attention. After going to many specialists in the Minneapolis area, she was eventually diagnosed with a brain stem glioma on January 9, 2015.
She was told the same day that the tumor was inoperable. Her family was shocked, assuming most tumors could be taken out. In addition, standard chemotherapy and radiation treatment would not help because of the tumor’s location inside the blood brain barrier. She was sent home with no next steps and an 8% chance of surviving six months.
Seven years later, Grace is twenty years old and continues to fight while working towards her dreams every single day.
“After being diagnosed, I had a completely different perspective on time and still have a very weird relationship with time. I think when you’re told you have a very little amount of it, you become hyper-aware of every day. Suddenly it seems like you have a lot more and you want to do a lot more. So I started taking my dreams more as reality because if I was already being told I was rare, if I was already surviving very low percentages, I might as well see what other odds I can beat,” said Grace.
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.
Her next odd to beat was striving for a career many people would not attempt to pursue. She always wanted to be an actress, create films, and be a director; however, it was never something she realistically thought she would be able to do. She moved to Los Angeles once she was done with school to pursue her dream.
Grace’s mother, Angela, was an incredible advocate throughout her journey — finding things Grace would love to do while keeping her safe. Grace had to reevaluate the activities she participated in during her childhood as many things were no longer safe for her. Before diagnosis, she was a dancer, figure skater, and aerial artist in a youth performing arts circus. However, those activities were no longer options for her. Angela brought Grace fashion magazines and signed her up for online classes she was interested in, which developed her interest in the fashion industry.
Grace’s love of fashion is how she originally learned about the Pediatric Brain Tumor Foundation. Her mom discovered a fashion show fundraiser in Atlanta and thought it would be a great way to combine Grace’s interests. Before this event, Grace had never met another family who had faced a brain tumor. It helped her find a community after her diagnosis and connect with others who had similar stories. This community was vital for Grace as her journey shifted and she became a long-term survivor.
“You don’t have to explain to other patients and survivors how you’re feeling. You don’t have to explain to them what your day looks like. They get it and they have empathy without having to use words. And to have that connection with people and to have a foundation that allows us to have those connections and find other people like us, I think that is extremely valuable. It can change a family’s fight and give them hope.”
Although it was difficult for Grace to share her story at first, she urges everyone to try to look for a speck of light in the darkness and share their story when they are ready. Sharing her story with others opened up an extremely helpful and supportive community.
Grace continues to use her platform as an award-winning actress, director, and best-selling author to advocate for children who are facing a brain tumor diagnosis. In 2018 she created a book called “You’re So Lucky” that shares stories of fourteen brain tumor survivors. In 2021, she expanded on her journey, caught up with some of these other survivors, and talked about her work with Congress on brain cancer legislation.
As a pediatric brain tumor advocate, Grace loves that PBTF is there to fight alongside families throughout their journey.
“PBTF has impacted my family through being a silent energy that lives in our everyday lives. Knowing that there are people fighting for us even on days when we don’t want to get out of bed or don’t have much hope and are exhausted. Knowing that there are others whose job it is to work every single day for kids like me and for our community. Having that energy, even if it’s in the back of our mind, is life-changing and comforting. It dissolves a lot of anxiety that comes with being a family facing this illness.”
No matter where you are in your journey, PBTF is here to support you. Stay connected with us for the latest news on upcoming initiatives and patient family resources: www.curethekids.org/stay-connected
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.
