Indi Powell, 18, was just 14 when she began experiencing severe headaches while living in the USA in 2021. While headaches might not seem unusual for a teenager, her paediatrician knew something wasn’t right, so she arranged an MRI scan. With her family by her side, Indi received the shocking news that she had a grapefruit-sized grade 4 glioblastoma on the right side of her brain.
Indi who is now working with the charity Brain Tumour Research to raise awareness of the disease has been living four years since diagnosis, Indi wants to give hope to those experiencing this same awful disease.
Indi Powell tells her story…
In January 2021, when I was 14 years old and living in America, I began experiencing severe headaches that became increasingly hard to ignore. At first, we thought it might just be stress or something routine. But my paediatrician agreed something wasn’t right and scheduled me for an MRI.
Nothing could have prepared me or my family for what the scan revealed: a grapefruit-sized glioblastoma on the right side of my brain.
Within an hour of the diagnosis, I was rushed to UNC Chapel Hill in North Carolina, where a full medical team was waiting for me. The following day I had emergency brain surgery.
Brain tumours aren’t something you come across every day or even expect to receive a diagnosis for. I was shocked and couldn’t comprehend what was happening.
The surgeon warned us about the risks, that I could lose mobility and would likely need to learn to walk and read again. It was incredibly hard to process at 14 years old.
After my operation I could talk, but I wasn’t able to communicate from my brain to my body. I knew I could read, but when I looked at words, I had no clue what they were.
The surgery was successful, but surgeons advised a second operation would be needed after treatment to remove the remainder of the tumour. I have permanently lost my peripheral vision and spent three weeks in hospital, and just learning to walk again took a week, though therapy continued long after. Those early days were extremely frustrating, everything I used to take for granted suddenly became a mountain to climb. When I got home, I spent weeks in bed, undergoing 32 rounds of radiotherapy and three rounds of oral chemotherapy over six weeks.
It was really hard going, simple tasks felt impossible. My brain wasn’t comprehending anything.
One of the turning points for me came later in July 2021 when I was accepted onto a clinical trial in Washington DC for T-cell infusion therapy. I was one of only 30 children selected. The first step was to distract the T-cells so they could “train” them to recognise cancer cells. I then was scheduled to go back to start the infusions.
Shortly after, I had my second surgery later in July 2021 to remove the remainder of the tumour. Following that, I had another round of chemotherapy. The emotional toll was just as heavy as the physical one. All of this took place during the COVID-19 pandemic, meaning I could only have one parent with me at a time. My brother Lewes couldn’t visit either, as he was under 18.
Being only 14, having both parents there would have made things easier. But my mum and dad stayed strong for me, even when I know they were scared. They didn’t want me to see it.
Watching friends graduate middle school, go on trips, and live their lives while I was stuck in clinics was deeply painful.
In September 2021, I went back to Washington DC to start my T-cell therapy which took place every six weeks until the end of February 2022.
The trial gave me hope. Out of everyone, my cells were creating the most T cells, so I was able to do three rounds instead of two which was the largest dose they could give.
Now, I’m back in the UK, finishing my secondary school education, and preparing to study child psychology at university. I still travel back to the US for routine check-ups, and while there’s always a fear that the tumour could return, I try to live in the present.
I feel very lucky that my tumour was found and that surgeons were able to remove all of it. I’m still living with the threat of it coming back but I live in hope.
I was also granted a Make-A-Wish, and I spoke at the Foundation’s annual gala, helping raise awareness for brain tumours. I’m now a passionate advocate for more funding and research.
People live thinking ‘it’ll never happen to me’ but brain tumours affect around 12,000 people a year in the UK alone.
My advice to those who have experienced this awful disease, is to remain positive and push through. It’s not a straight line, there are ups and downs. Every day I woke up, I felt thankful. I’d tell myself: just one more day. Keep going, and I hope you do too.
Indi Powell
April 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Indi’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure