Joscelyne Kerr, 19, from Kinross, Scotland, first noticed a blown pupil and double vision a few weeks after her prom. Initially misdiagnosed by the optician as hay fever and infection, her symptoms worsened, leading to an urgent referral to Ninewells Hospital in Dundee. After a series of scans, Joscelyne was diagnosed with a rare brain tumour, later identified as an anaplastic pleomorphic xanthoastrocytoma (APXA) – a condition with no known cases in Scotland and a prognosis of just 12 to 18 months. Despite undergoing radiotherapy and chemotherapy, these treatments have not been effective, and she is now exploring experimental options including immunotherapy. Throughout her battle, Joscelyne remains determined to live life to the fullest, continuing her studies in astrophysics and cherishing time with her loved ones.
Joscelyne tells her story, with support from her mum, Ann...
It all started in June 2023, just after my school prom. My friend joked that I had a blown pupil, and when I looked back at my photos, I realised my pupil had expanded so much that you could hardly see any colour in my eye. My dad used to be a medic in the army and joked he’d only seen this happen on three people: one was someone who had a stroke, the second was a drug addict, and the third was a dead person. So, I thought it was quite chilled and funny, but when Dad came home from being overseas, he suddenly said I needed to see the optician.
I went to Specsavers in Glenrothes, and they thought it was a reaction to hay fever, which they called Adie’s Pupil, an infection that caused the pupil to grow. However, by August, my eyelid had slightly dropped, my pupil had grown even more, and I was experiencing severe double vision. The optician referred me to Ninewells Hospital in Dundee, where I had a CT scan.
The results found a shadow in my scan, so I was referred for an urgent MRI scan.
This was not exactly a big shock at the time because I was admitted, and with what my dad had said, Mum and I thought it might be an aneurysm or a tumour, so we were somewhat expecting it. My main concern was that I was in a swimsuit at the time because I was planning to take my sister to the pool after the optician’s appointment, and I did not want to be stuck in it the whole time at the hospital. Thankfully, Dad brought me some clothes and my big tiger teddy, which I have always slept with. Mum had to leave in the evening but came back the next morning to keep me company during the MRI scan. 
That’s when they found what they thought was a rare schwannoma tumour (a type of nerve sheath tumour) in my third ocular nerve sheath, of which there’s only about 60 known diagnosed cases worldwide. As we understood it was low-grade, I was able to get discharged that night to join family and friends in celebrating my parents’ 25th wedding anniversary that weekend.
At first, they thought it had been growing slowly for years, only just reaching the point of affecting the third nerve. Mum and I spoke to my amazing Consultant Neurosurgeon, Mr Okasha, about halving the time until my next scan in three months instead of six because my symptoms were changing every few weeks and getting worse, so I wanted to get checked sooner. He thankfully agreed because, after celebrating my 18th birthday and starting my university course, we all received a massive shock.
By November, the tumour was causing concern, as it had nearly doubled in size.
That was tough for all of us because we expected to go in for my checkup thinking everything was okay but we were told it was growing aggressively, and we needed to discuss and make a decision as to whether I had radiotherapy to hopefully shrink it, or surgery to try and remove it. The tumour was growing down towards the brain stem; a part that was once called “no man’s land” due to the significant risks of operating there. After discussing this at length, Mum, Dad, and I went away for lunch to think about the options, but I was adamant that I wanted the surgery despite the risks and repercussions. I couldn’t take the possibility that radiotherapy might not work.
I thought about seeing my sister, Evie, turn 18 and enjoying all the firsts that come with that, so I knew I just needed to go for it.
On 5 December 2023, I was booked to go into surgery where the doctors would operate in “no man’s land” for six hours. I was still feeling really positive about this because I believed it would all be fine, but I was nervous about how it would affect those around me if I died. I even had a little game in mind to see if I could beat Mum’s record (counting to twenty-something) of fighting the anaesthetic before it hit her. I was incredibly proud to hit 27, meaning I had beaten mum’s time before I completely blacked out, and the surgeons went to work.
The surgery was successful in removing 90% of the tumour, but I lost all memory of who I was or who was around me for the next few days, so I have to rely on what others, including Mum, tell me about what happened. I lost muscle function in my left eye, and I was aphasic, so I had to relearn my processing function of how to speak, read, and write. Four days after surgery, there was a major scare when my body shut down, and I couldn’t respond to pain or movement. It was terrifying for everyone around me, but slowly, I regained my functions.
On 20 December, I received the worst news possible – the tumour was cancerous.
Doctors said it was either an epithelioid glioblastoma or an anaplastic pleomorphic xanthoastrocytoma (APXA), as a crystallised mass wrapped around my carotid artery, and I was given a prognosis of 12 to 18 months. It was a devastating blow, but Mum was calm and positive, saying it’s just a number. My grandparents had received similar prognoses for other diseases and lived for years beyond them, so we weren’t going to give up hope.
I decided then and there that I wasn’t going to waste any time. I would prioritise treatments but also celebrating time with my family. If this was going to be my last Christmas, then it would be the best one ever, and that’s what we did. We were exhausted after going all out on Christmas Eve shenanigans, drove down south to see close family and friends, ice skating, and then ended on a high with a black-tie New Year’s dinner. I couldn’t have imagined a better way to spend what could’ve been my last holidays.
Two weeks later on 8 January 2024, I started six weeks of daily radiotherapy and chemotherapy. It’s meant to be a terrifying experience, but because my degree is in physics, I was more interested in what was happening than scared. I had too many questions to ask the medical staff, so I resorted to asking a new question every day about the physics behind what they were doing. It passed the time well, and the staff were lovely.
On 14 March 2024, my latest scan results showed the chemo and radio hadn’t worked.
The tumour was now confirmed as an APXA, and studies had shown neither chemo nor radiotherapy had worked on this disease, so I had gone through that for nothing. There’s also been no cases of APXAs in Scotland, and although the doctors wanted to put me directly on the next drug for treatment, Mum fought back on this and asked for information on all the possible treatments that could help. The tumour had also grown out of the chrysalis form in the sheath of the nerve and began branching out into other parts of my brain.
I was lucky at this point to be put on a new trial drug called Dabrafenib and Trametinib, targeted cancer drugs used to treat small cell solid tumours, as I had the BRAF gene, however there was no guarantee this would work for me.
We decided at that point, to start fundraising in the hope of exploring alternative treatments. Enter DCVax-L, a beacon of hope. This breakthrough development drug has been in clinical trials since 2016 and creates a personalised antibody against the tumour. This offers a form of immunotherapy that can penetrate through the blood-brain barrier (BBB) and has the potential to combat my tumour. However, it has never been tested on APXA, so we were entering experimental territory.
Mum, Dad, and I went back to the hospital in May 2024 after being on the trail drugs for 8 weeks. That is when I think we got our first break and a bit of positive news, as the drugs seemed to be working.
The doctors said my tumour had shrunk back into its chrysalis state.
The medications gave me all sorts of side effects, including sickness and tiredness, but I was relieved to hear this news as it gives me more time to raise funds, find a better treatment, and hopefully live longer.
I couldn’t be more grateful to my family, friends, and community, who have been incredibly supportive. They have done marathons, gym days, line dancing, black-tie events, the Scotland Hat Walk this year, and so much more to support me. It’s so humbling to see how many thousands of people have donated to my JustGiving page.
Despite everything, I’ve continued with my studies at the University of Edinburgh, where I’m studying astrophysics. I’ve also taken up archery since I can no longer play rugby or compete in the university’s competitive dance team. I’m just so pleased that I've managed to pass my exams, even though my memory isn’t what it used to be.
My motto is “Go Big or Go Home,” and that’s exactly what I’m doing. I went in for that MRI scan on my 18th birthday then went straight to Dunfermline to get a tattoo, so I’m still enjoying everything about living my life to the fullest.
I’m not letting this tumour define me. I’m going to keep fighting, keep smiling, and keep inspiring others to do the same.
Joscelyne Kerr
February 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 Joscelyne’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.