A 19-year-old girl diagnosed with an incredibly rare brain tumour is on a mission to raise funds for her vital treatment.
Joscelyne Kerr was in the midst of completing her school studies in 2023 when she noticed a significant enlargement of her pupil, to the point where its colour was barely discernible. Initially, an optician suspected it to be a rare neurological condition known as Adie pupil.
However, as her pupil continued to expand and she started experiencing double vision, she was referred to Ninewells Hospital in Dundee for a CT scan. The results revealed a tumour.
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Ms Kerr, from Kinross, shared: "My dad used to be a medic in the Army and joked he'd only seen this happen on three types of people: someone who had a stroke, a drug addict and a dead person. Since none of these scenarios applied to me, we didn't initially worry too much until my symptoms began to escalate. After a subsequent visit to the optician a few weeks later, they referred us to the hospital, where a CT scan detected a shadow in my brain.
"An urgent MRI then identified what they believed to be a schwannoma tumour on my third ocular nerve. This type of tumour is uncommon, but its presence on the third ocular nerve sheath is even rarer, with only around 60 documented cases globally. Initially, they assumed it was a low-grade tumour that had been growing slowly over several years, but given the rapid progression and worsening of my symptoms, we insisted on an earlier follow-up scan."
As Ms Kerr's tumour began to spread towards the brain stem, an area once deemed inoperable due to the high risks involved, she was faced with two options: radiotherapy or high-risk surgery to remove the tumour entirely. Opting for surgery, Ms Kerr underwent an operation in December 2023, which successfully removed 90% of the tumour.
However, the procedure was complicated, resulting in memory and muscle function loss, forcing her to relearn basic skills such as speaking, reading, and writing. Just four days later, her body shut down, leaving her unresponsive to pain or movement.
Although she eventually regained all functions, further devastating news awaited her. Ms Kerr recounted: "After a biopsy, doctors diagnosed me with an ultra-rare and cancerous tumour, with a prognosis of 12-18 months. They weren't sure if it was an epithelioid glioblastoma (e-GBM) or an anaplastic pleomorphic xanthoastrocytoma (APXA), but they knew it was serious.
"Although 90% of it had been removed, the remainder – a crystallised mass – was wrapped around my carotid artery, the main blood supply to my brain. It was devastating, but my mum stayed calm and told me, 'It's just a number'. My grandparents had outlived grim prognoses before so we refused to give up."
She continued: "I was told I needed to undergo chemotherapy and radiotherapy, and figured if this was going to be my last Christmas, then we would make it the best one ever."
Following six weeks of intensive radiotherapy and chemotherapy in January 2024, scans in March revealed that the treatments had unfortunately not been successful. The tumour was identified as AXPA, marking the only confirmed case in Scotland.
Due to the complex nature of the tumour, Ms Kerr was put on trial drugs Dabrafenib and Trametinib, which are targeted cancer treatments used for small cell solid tumours. Subsequent scans indicated that these drugs had managed to reduce the tumour back to its chrysalis state.
In an effort to fund a trial drug named DCVax-L, which costs £250,000 and could potentially save her life, Ms Kerr and her family have embarked on a fundraising mission. Although the drug has only been tested on glioblastoma patients, it shows promise for AXPA.
She expressed: "I'm overwhelmed by the outpouring of love and generosity I've experienced since all of this happened. My community has done marathons, gym days, black-tie events and so much more to support me. I couldn't be more grateful to everyone.
"I am also focused on raising awareness about brain tumours, and it's exciting to see the new Brain Tumour Research centre has recently opened in Edinburgh, near my university flat. We desperately need more research in this disease because I believe the treatments people receive aren't always the right ones, and it's only with well-funded research that we can change this and save thousands of lives."
To back Ms Kerr's immunotherapy fundraiser or to contribute to her cause, click here.
