Imagine at 13, you are told you have an inoperable brain tumor, there are no viable treatment options, and you only have months to live.
Sounds like a dramatic scene from a movie, but the real-life outcome of this storyline is better than any Hollywood ending.
Instead of accepting a devastating diagnosis, this determined, creative teenager went on to curate the life of her dreams.
Grace Wethor is an award-winning actress, director, best-selling author, and brain cancer legislation advocate. After her diagnosis, Grace refused to accept her diagnosis – but she decided to live like she only had six months left. She followed her passions, moved to LA, and made it happen. She worked with Vogue, hosted awards shows, and landed television roles at Disney, ABC, and the E! Network. Grace gave her first TED Talk at age 15, released her first book at 16, spoke at the United Nations at 17, and released her first original television series at 18. At 21 years old, she is the CEO of GRAE Entertainment.
Eight years later, stable and still fighting, she hopes to use film to share stories that show other young people that they can pursue their dreams despite their circumstances or illness.
She is unstoppable.
To honor Brain Tumor Awareness month, we interviewed Grace to understand what keeps her going, how she found the courage to live out her wildest dreams, and what being a long-term survivor of an incurable disease means for her everyday life.
When I was 13 I began feeling sick and tired, and I started losing passion for things in my life. No one could figure out what was going on. I saw a lot of doctors and went to a lot of hospitals who dismissed my symptoms as those of a common teenager.
One doctor thought I had mono and ordered blood tests. The results were abnormal red and white blood cell counts, making them think I may have had leukemia. I went to Children's Hospital in Minneapolis, and had so many tests done, including imaging of my head that finally gave me a diagnosis: a brain tumor. Specifically, my tumor is a glioma of the brain stem.
The location of the tumor - in the pons of my brain - made it very complicated to treat. I was considered “inoperable” because too many vital structures were close by, which also took radiation off the table. Chemotherapy isn’t deemed effective for my kind of tumor because of the protective blood barrier of the brain. The roadblocks to treatment for tumors in the brainstem usually means there is an 8% chance of survival for six months.
Because of the lack of options, I never received any traditional treatment. Treatment would have done more harm than good. But I spent a lot of time in and out of hospitals during the first couple of years.
My tumor isn’t behaving typically. I have to get regular scans to monitor my tumor, and I’ve been stable for 8 years. The tumor has not progressed or impacted my abilities.
The diagnosis was just words. I knew it wasn’t going to be my story. Looking back I felt lucky to have things I was passionate about. I decided to start living them out.
Three things kept me going. The number one thing was my mom. She always supported me getting up and doing things. She helped me acknowledge my illness and move past it.
Number two was the idea of the person I was becoming and could continue to become after this experience. I was in seventh grade when I was diagnosed. I thought life was great. After my diagnosis I felt empowered to try different things. I wanted to be outside of the hospital, living. I moved to LA and started to pursue my creative passions. Every day I had a reason to get out of bed and explore the things I loved doing.
And third – I made it my mission to learn. I dove into books - lots of books! I also began reaching out to others in the brain tumor community which completely changed my life. I gained a perspective of the world that I’m extremely grateful for.
Music was my main source of energy. When I felt sick and tired, playing the right song never failed to get me out of bed. I had (and still have) headphones in my ears almost 24 hours a day. I also focused on being nice to my body and learning about my new normal. Finding that balance and getting to know myself really helped me understand my limits. I was also very lucky that the hospital I was treated at had an integrative medicine clinic with a range of therapies. That was extremely helpful.
Besides integrative medicine, I also think there is a lack of attention to the mental health aspect of cancer. We are often labeled as “fighters,” but a lot of the experience goes unaddressed when we try to be “strong.” If we can begin to focus on the emotions alongside the physical, I think the overall toll on patients could be greatly reduced.
There are many experiences that I didn’t think would be relevant until they happened to me. As I began sharing what I was dealing with, I realized my issues were very common among those with cancer. Things like friends distancing themselves, adjusting to the new normal after diagnosis and treatment, and the massive shift in your perspective. This side of the story isn’t shown in movies or media. People think you get chemo, you’re cured, and you move on with your life. Until you experience these things first-hand, you don’t realize what a huge part of the story change is amongst patients.
Such a life-changing event broadens your perspective. You can't go back to being oblivious or naive. After being diagnosed, I knew I couldn’t sit and wait any longer to pursue my goals. Fear went away. Eight years later, and still fighting, I now work in the entertainment industry and strive to combine my passion of stories with advocacy. My hope is to merge the two – creativity and storytelling with action and change. My mission is to elevate unseen stories through films and documentaries, which continue to lead legislation advocacy. I will continue to work alongside congress, The White House, and nonprofits to raise awareness.
I’m also not the typical cancer patient – I look fine. I look healthy. My experience has made me realize that people often aren't how they appear. We make assumptions about people. We don’t know what they’re dealing with. It's made me look at people differently.
For me, my entire outlook and journey changed when I met other patients and survivors. I know it sounds simple, but connecting with others can be an incredible experience. You can often feel isolated with this illness because you are experiencing things that many around you never have and never will. But when you find a community, you realize people who understand are all around you. And the gift of being truly seen and understood is one of the most amazing things.
Brain tumors are tricky and very difficult to treat. A lot of my close friends in the same position have unfortunately passed away. I feel a responsibility to continue fighting on their behalf and to be a voice for those who no longer had a voice of their own. I’ve worked in cancer legislation advocacy on Capitol Hill, helping lead bills that would provide research funding and awareness efforts for pediatric cancer that will hopefully find a cure one day. I was also presented with the opportunity to serve as the chairwoman of CureFest x TeenTrack, which collaborated with The White House to bring young patients’ concerns to the President. Ultimately, my goal is to expand broader to address overall health.
I truly believe that without universal access to quality healthcare and universal focus on health, we won't be able to keep improving long-term in other areas. I am a representative for the United Nations Sustainable Development Goal 3: Health & Well-Being. The UN has a list of goals that they believe are needed to create global peace, and for me personally, I find this one very close to home. Without my health, I am not able to do the other things that I want or need to do. I believe if we can provide healthcare, diagnostic testing, and education around illnesses, the world would function and vibrate at a much higher level and we would ultimately be able to achieve more, faster.
Follow Grace on Instagram, and go to her website to learn more about her story, projects, and her advocacy work.
