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Photo of Jade | lives with pLGG, lives for aerial acrobatics | personal story thumbnail

“Sharing my story is very rewarding, as it allows me to freely express myself in ways I never thought were possible.”

Everyone’s experience with pLGG is unique and will vary from individual to individual.


Lives with pLGG, Lives for aerial acrobatics

I am sharing my story to uplift, inspire, and give a smile to anybody who reads. Sharing my story is very rewarding, as it allows me to freely express myself in ways I never thought were possible. Living life with a pLGG has given me opportunities that I've never thought of having. I was diagnosed at age 13. I am now 19 and have been advocating for more research and awareness for pLGG. I have been given the chance to meet such incredible people, chances to speak in front of senators demanding more research for pediatric brain tumors, and I even had the chance of going to a summer camp where I felt at home.

Facing a pLGG Diagnosis

“Camp Make a Dream” is home to a ton of brain tumor/cancer thrivers. At the time of diagnosis, I thought my life had come to an end. Those cold, gloomy, white hospital rooms were intimidating. Deep down, my mind convinced me that I wasn’t ever going to be happy again. During this journey, I’ve had many tough days as well as amazing, extraordinary days. The good really does outweigh the bad. My hardest day was my first round of chemotherapy.

The confusion and anger I felt consumed me. As the needle got closer to my arm, I wanted to refuse. I wanted to shout, “why me?” The first year was the hardest year of my life. From bad results to treatment, to losing my hair. From relapsing and losing hope, to making lifetime friends who mean the world to me. I began feeling like a disappointment to everybody and started to isolate myself from the world. It felt as if my world had shut down. Having a brain tumor took a lot away from me such as vision, being able to drive, and I lost my ability to make friends.

As time went on, I started to smile again. These smiles and feelings of happiness were different. I’ve never felt it before. Chemotherapy visits became something I looked forward to. Wearing my favorite outfits and playing my favorite albums on the way to chemotherapy brought a sense of happiness that rushed through me. My smiles were as bright as the sun. The hospital rooms weren’t as dull. The most amazing days I had were during my clinic visits. I felt safe and secure. My nurses and doctors became my best friends.

Jade | Lives for Aerial Acrobatics

Navigating My pLGG Journey

Facing pLGG ruined my high school dream. I had no friends my age to turn to. The clinic was my escape. During treatment, I would paint my feelings away in the art room. The art therapists were my inspirations and told me everything was going to be okay, I felt reassured and protected. The kids in the art room were all going through similar situations like me. I no longer felt alone. The majority were younger, and I wanted to become somebody they looked up to. So, I did. I accomplished anything I wanted.

I painted with them and talked them through their sad feelings. Before I knew it, I had friends all around me! Having such a relationship with the other children with cancer made me decide my future career. A pediatric neuropsychologist is what I will be one day! Because of my diagnosis, I have ambition, a positive outlook, and the biggest heart.

You Can Be in Control

As far as treatments, I’ve had good luck with only 1. After 5 different drugs, we found 1 that works for me. The most challenging part about treatment is knowing whether it’ll work or not. Often after chemotherapy, I pondered to myself and asked, “Is this truly working?” Over time, I have learned to leave it up to the doctors. They’re intelligent and they truly do care. My doctors and nurses were my biggest heroes. To make sure I’m receiving the best care, I ask questions. I like to know what’s going on in my brain. The more we are aware of our bodies, we feel more in control.

Since being diagnosed, I’ve found hobbies I never imagined myself taking part in. Hobbies such as aerial arts, painting, dancing, exploring, traveling, eating, writing, and many more! My diagnosis doesn’t stop me from being who I’ve always aspired to be. A strong, talented, bubbly, happy young lady. One hobby that means the most to me is aerial silks. The flowing, long silks I climb allow me to break free from all the tension. I’ve never felt more at peace. While climbing stories high in the air, I create my own story. I imagine the silks being my book, and I am the author. I am in control of my own story and so are you.

Thoughts for Others

I love spreading my positivity to people in the clinic and even outside of the clinic. My wish is to inspire pediatrics and even adults. My outlook on life is beautiful. The best advice I’ve ever received was to be your own advocate and take treatment 1 day at a time. A positive outlook will get anybody through tough times. Be kind to yourself and realize that everything falls into place eventually. Time is all it takes, and during that time we can practice self-love and healing within. Psychology visits and seeking help was the best choice I made!

I want everybody to know that seeking help is the most beautiful thing this world has to offer. Once we find somebody we trust, love, and respect, we blossom and share from our hearts. If I could go back in time to talk to younger Jade, I would give her the biggest hug and tell her that she isn’t alone.

Nobody diagnosed with pLGG is alone. Being diagnosed with pLGG can be scary. It may feel like your life is being put in slow motion. It is significant to know that working through your emotions can bring out the best version of yourself, and you will become a success story.