Joscelyne Kerr in a hospital bed with her mother Ann (Image: Brain Tumour Research/PA)
A 19 year old girl diagnosed with an incredibly rare is now fundraising for vital treatment. Joscelyne Kerr was completing her school in 2023 when she observed that her eye’s pupil had dilated to such an extent that its colour was barely discernible.
Initially, an optician in June of that year suspected it to be a rare condition known as Adie pupil. However, as her pupil continued to enlarge and she started experiencing double vision, she was referred to Ninewells in Dundee for a CT scan, which revealed the presence of a tumour.
Ms Kerr, from Kinross, shared: “My 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. So, as none of these applied, we didn’t think much of it at first until my symptoms worsened. After a second optician’s visit a few weeks later, they referred us to the hospital, where a CT scan found a shadow in my brain.”
She further explained: “An urgent MRI then revealed what they thought was a schwannoma tumour on my third ocular nerve. This type of tumour is rare, but having it located on the third ocular nerve sheath is even more unusual, with only about 60 known cases worldwide. At first, they thought it was a low-grade tumour and had been growing slowly for years, but as my symptoms were changing every few weeks and getting worse, we insisted on getting scanned again sooner.”
Brain tumours are the leading cause of cancer fatalities among those under the age of 4 (Image: Brain Tumour Research/PA)
The inspiring tale of Ms Kerr’s battle with a brain tumour began unfolding just as she was stepping into adulthood, celebrating her 18th birthday and embarking on her university journey; she recounted the terrifying moment, saying: “After celebrating my 18th birthday and starting my university course, we were shocked to find the tumour had doubled in size and was growing aggressively.”
Ms Kerr had to choose between radiotherapy and a high-stakes surgical gambit aiming for complete remova, she chose surgery and, in the closing month of 2023, survived the operation that eradicated 90% of her tumour.
The surgery brought unintended tribulations as Ms Kerr struggled with memory loss and diminished muscle functions, necessitating a reeducation in speaking, reading, and writing. Four gruelling days post-surgery, her body entered a state of arrest, unresponsive to pain or motion. Defying expectations, she miraculously recovered full functionality but was soon thrust into another ordeal.
Ms Kerr disclosed the devastating diagnosis received after tissue examination: “After a biopsy, doctors diagnosed me with an ultra-rare and cancerous tumour, with a prognosis of 12-18 months.” Compounded by medical uncertainty between an epithelioid glioblastoma (e-GBM) and an anaplastic pleomorphic xanthoastrocytoma (APXA), it was clear the situation was dire.
Joscelyne Kerr, 19, with her family (Image: Brain Tumour Research/PA)
Reeling from a harrowing diagnosis, she recounted: “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 further stated: “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.”
Enduring six weeks of treatment in January 2024, she was dealt a blow when scans in March showed that both radiotherapy and chemotherapy had failed to curb the growth of her tumour, now identified as AXPA – the only known case in Scotland.
The complexity of her tumour led to Ms Kerr being placed on the trial medications Dabrafenib and Trametinib, which represented a beacon of hope against her unique form of cancer. Remarkably, these drugs succeeded in diminishing the tumour back to its initial state.
Currently, Ms Kerr, supported by her family, is fundraising for an innovative treatment called DCVax-L, which commands an astounding £250,000, clinging to the possibility that it could be her lifeline. Despite it only having been tested on glioblastoma cases, its potential effectiveness against AXPA fuels their optimism.
Overwhelmed by the tidal wave of support she’s received, she expressed her heartfelt gratitude: “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 support Ms Kerr’s immunotherapy fundraiser or to donate to her cause,