In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Emily Oliver, a University of Nottingham nursing student, was diagnosed with a brain tumour, later identified as a diffuse midline glioma (DMG) – also known as diffuse intrinsic pontine glioma (DIPG) – in January 2018. She underwent radiotherapy and chemotherapy before travelling to a clinic in Germany, where, following a biopsy, she received personalised vaccines and another course of radiotherapy. She survived 18 months from diagnosis, passing away in a hospice in July 2019, aged 21.
Here is Emily’s story, as told by her mum Debi …
Emily, the youngest of our three children, was the life and soul of the party. She loved organising things with her friends, everything from festivals and concerts, to parties and trips abroad. She also loved sports and had her heart in tennis, netball, lacrosse, which she played for county, and swimming. She struggled a bit academically but was incredibly enthusiastic and found her vocation in life after doing work experience with a friend of mine, who’s a senior nurse. Emily also spent a day with the London Ambulance Service and with another friend of mine, who’s a neurosurgeon, and gained clinical work experience in the Dominican Republic and Costa Rica with Gap Medics, which was brilliant for her.
“We met her in Brazil after she’d finished and had the most amazing time making unforgettable memories together.”
When Emily came home from university in December 2017, she was dizzy and didn’t feel quite right. We just thought she’d overdone it because there was always something going on with her at Christmas, be it tonsillitis or glandular fever. I remember my husband, Tim, having a detached retina and being a bit wobbly and, with Emily wobbly too, it was a strange time. I decided to take her to see a private GP because I wasn’t sure what was going on and her registered doctor was in Nottingham, where she was studying nursing.
“The GP thought Emily could have an inner ear infection called labyrinthitis and noticed some weakness down her right side, but nothing significant enough to raise concern.”
“That New Year’s, Emily hosted a party at home and appeared to have been dribbling chocolate, but looking back at the photos I can see now that she had a face droop.”
After the party she was due to go and stay at our villa in Spain but she became suddenly anxious and reluctant to go. She went but the people who look after our villa said they’d seen her lying on the floor. When she came back, she looked like she’d had a stroke and couldn’t really open her eye. On reflection, I think I should have taken her straight to A&E then, but I thought she probably had multiple sclerosis (MS). I just didn’t think she had a brain tumour. In the end, I took her to see a doctor who told us she needed a neurological assessment.
After spending two days in an assessment unit at the Royal Surrey Hospital in Guildford, Emily was admitted. For me, the fact she’d had a clear brain scan the year before was a bit of a red herring. She’d been having a few problems with her eyes, so I had got her to go to an optician who reported seeing a swollen optic disc. According to my medical training – I'm a retired GP - this is a brain tumour until proven otherwise, but Emily was sent away. I finally managed to get hold of the report and sent it to our private GP who arranged for her to have a brain scan, privately, at the Royal Surrey. That MRI scan came back clear, so I felt totally reassured whatever was going on was viral. I have since reviewed it and confirmed that everything was perfectly normal at the time.
Exactly a year after that strange episode, Emily was admitted to hospital with full-blown symptoms that came on quite dramatically. The doctors weren’t sure if she had MS or glioblastoma (GBM) so gave her the steroid dexamethasone. Whilst we were waiting for a multi-disciplinary team meeting (MDT) to take place, I shared a photo of Emily’s latest MRI scan with my neurosurgeon friend who was sure it wasn’t MS.
“She said: ‘It’s definitely a diffuse midline glioma (DMG), you’ve got to tell Emily she’s going to die’.”
To then go back and try to be positive around Emily without being sick was absolutely horrendous. When the call came following the MDT meeting, Emily, who was 20 at the time, was determined to take it herself. I knew what they were going to say and she did eventually hand the phone to me. When we went to see the oncologist at the Royal Surrey, he told Emily she had just three months to live without treatment.
She started radiotherapy two days later and responded very well to it, making a significant improvement. Because it was thought she was more likely to have a glioblastoma (GBM), they also gave her temozolomide (TMZ) chemotherapy. We, meanwhile, sourced a targeted cancer drug called Avastin privately, following a suggestion from Emily’s oncologist. We then got her moved to the Royal Marsden Hospital’s adolescent unit. Her friends were brilliant and really rallied around. They were just as shocked as she was about her diagnosis but didn’t really understand she had cancer. Emily set up her own Instagram account to communicate with them.
“She found it exhausting explaining things to people, so much so I became her voice, as well as her full-time carer and mother.”
Emily always had hope and insisted on making her own decisions about her treatment. She was well-informed and I had to respect the fact she was a young adult. She had a lot of energy because of the dexamethasone, and it was exhausting watching her continue her beauty regime of hair, nails and eyelashes alongside everything else, but that’s what she did. She also, through a local children’s hospice Tim is associated with, got the chance to visit Buckingham Palace, meet famous people like Robbie Williams and attend events like the X Factor, which she very much enjoyed.
“We met Dame Tessa Jowell’s widower, David Mills, and had a long chat with him about what we could do.”
Emily knew how poor her prognosis was and was determined to do more so, through David, we got an introduction to Dr Michael Castro at the Beverly Hills Cancer Center in Los Angeles, USA, and Dr Saskia Biskup at CeGat in Tuebingen, Germany. We went to Germany in April 2018 where, as well as blood tests, Emily had a lumbar puncture to see if they could find any evidence of tumour in her spine. The ‘spinal tap’ was clear so Emily made the decision to have a biopsy, which she underwent back in the UK, at St George’s Hospital, London. Her sample was preserved in wax and couriered to Germany, which wasn’t straightforward to organise.
“When Emily woke up after her biopsy, she was elated she’d survived.”
Her feeling was if she didn’t have the biopsy, she was going to die anyway. As a result of having it, CeGat identified mutations in her tumour and were able to create a personalised vaccine, which she started taking in October.
We held a Moroccan-themed 21st birthday party for Emily one month earlier, by which point she was starting to get symptomatic. Despite having a corneal abrasion and using Botox to close her eye, Emily sourced a local make-up artist to help her look good for the party. As she deteriorated in the coming months, she no longer wanted her friends to visit because she didn’t want them seeing how bad she had got. In total, Emily had four vaccines, including one on her birthday. The trips to Germany were exhausting, especially when she was in a wheelchair, because we’d go there and back in a day.
“I’m not sure Emily ever actually responded to the vaccine; when she got symptomatic she was put back on dexamethasone, which CeGat warned could affect her immune response, but we were pleased to have something to try.”
Emily hated the way people looked at her, especially on flights. It was always quite a challenge but we went back to Germany in February 2019, after she’d started deteriorating, so she could have another course of radiotherapy. The Royal Marsden Hospital, although initially against it, finally agreed she could, so we stayed there a month so Emily could do it as an inpatient, in much smaller increments than before. By then she was really struggling with her mobility, so inpatient treatment took the pressure off me as her main carer and was a huge relief for us all. Whilst she was there she also met with a speech and language therapist and had physiotherapy.
“The treatment did make a difference; Emily got her smile and her giggle back, and I think it gave her more time.”
We had hoped the vaccine would start working, especially after Emily had another dose, but instead she began deteriorating. She remained positive and extremely brave throughout, but whilst we were in Spain for Easter in April 2019, it was obvious she wasn’t right. Emily was confused on the flight home. She was then admitted to the Royal Surrey for two weeks, until a bed became available at the Princess Alice Hospice, in Esher. We had looked into installing a hospital bed at home but then Emily had a seizure and it made more sense for her to be moved.
“Her friends were brilliant and decorated her room with photos, including those from her gap year.”
After 10 weeks in a local adult hospice, where she was allowed a constant stream of friends and family visiting, in July 2019 Emily passed away.
“She died with Tim and me by her side, peacefully, and with bravery and dignity, having survived 18 months from diagnosis.”
Since her death, Tim and I have continued to raise funds for research into brain tumours, because that’s very much what Emily wanted, to find a cure and to help others. Instead of presents, for her 21st birthday she set up the Emily Oliver Fighting Fund and invited friends and family to make donations. Incredibly, that fund has now raised almost £190,000.
“We’re extremely passionate about continuing this, particularly for high-grade paediatric gliomas, which is why we’re so keen to support the fourth Brain Tumour Research Centre of Excellence at The Institute of Cancer Research.”
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.