Emily Oliver, who was 19-years-old at the time, was diagnosed with a brain tumour in December 2017. She had recently started a nursing degree at Nottingham University after taking a gap year to volunteer in hospitals in the Dominican Republic, Jamacia and Costa Rica before joining her parents for a holiday in Brazil. This convinced Emily that adult nursing was her calling in life.
During her first semester, Emily started having symptoms including double vision, a loss of lateral vision, weakness down one side of her face and problems with her left leg which made it difficult for her to drive to her nursing placements.
Unbeknown at the time, Emily was displaying all of the classic symptoms of a diffuse midline glioma, also known as DIPG, which is one of the most common high-grade brain tumours found in children and young people.
She went to see a GP who said that she had Labyrinthitis. Yet, her symptoms progressed and she also began slurring her speech so Emily went back to the GP. She was then referred for an assessment by the neurology team at the Royal Surrey Hospital with suspected MS.
As 2018 got underway, a MRI scan revealed a lesion on Emily’s brain stem which was thought to be either a DIPG or a Glioblastoma – both of which are amongst the most aggressive types of the disease. It was then that Emily looked online for information about possible tumour types and she was shocked to see that she had nearly all the symptoms of a DIPG as detailed on The Brain Tumour Charity’s website.
Emily was given three months to live if she didn’t have immediate treatment. So, she urgently started courses of radiotherapy and chemotherapy alongside a private prescription of Avastin in the hope of it preventing new cell growth.
Emily’s mum Debi said: “At the time we thought that, in true Emily form, she had just overdone it during the semester at University. She loved being busy and active so she was always into everything. Looking back at her blog posts at the time, I now know just how bad Emily was feeling then and that she really wanted to go to A&E but she didn’t want to worry us.”
“Then, everything changed so quickly. All of a sudden, medical professionals were saying to me that I needed to tell Emily that she was going to die. I refused to do that. We always held onto hope in order to have the strength to just keep going.”
Debi.
“Emily’s diagnosis had a devastating impact on all of the family. Yet she said that it was best that she had the tumour rather than her older siblings, Charlotte and James, as she felt like she would cope with it best. She also told us that she had always had a feeling that something horrendous was going to happen to her which, as a parent, was just awful to hear.”
Three months later, the family were overjoyed to make it past the awful milestone which had been looming over them – but they were far from over the trauma.
As a retired GP, Debi looked up all the possible treatments which were available to them. Through a family friend, they also met Tessa Jowell’s widow, David Mills, at the House of Commons who had been through a similar trauma after the former MP was diagnosed with a Glioblastoma and passed away in 2018. David recommended Dr Castro in Los Angeles and Dr Saskia Biskup at CeGat genetic analysis centre in Germany, even though they had not been able to explore these treatment options themselves. So, Emily and her family travelled to LA and Germany to investigate these alternative options.
The Brain Tumour Charity is a partner of the Tessa Jowell Brain Cancer Mission and its collaborative initiative to establish accredited Tessa Jowell Centres of Excellence for brain tumour treatment and care in adults throughout the UK.
After returning to the UK, Emily went to St George’s Hospital in Tooting, where she had enjoyed a week of work experience in July 2017, to have a biopsy of her tumour. At the family’s request, a section of it was sent to CeGaT where a personalised vaccine was created for Emily. The family were confident that this could be a cure and it gave them the hope they so desperately needed during the most difficult time of their lives.
From October, Emily had six doses of the vaccine over a fortnight, including on her 21st birthday where the medical team also presented her with a cake. She then had monthly vaccines and regular blood tests to assess her immune response to it.
Debi said: “Emily was always so positive, enthusiastic and overwhelmed by the opportunity to go to the centre in Germany, especially alongside my medical training to be able to help her out. Our trips were incredibly special and gave us all hope. The tumour also responded significantly to the high-dose radiotherapy she also had there which was enough for her to be quite active and independent.”
Following a recommendation from a family friend, Emily was transferred to the adolescent unit at the Royal Marsden Hospital to continue her treatment. Emily’s GP also recommended the Care Oncology Clinic in London’s Harley Street based on their success in treating glioblastomas. Following the clinic’s advice, Emily started taking extensive medications including atorvastatin, doxycycline, vermox and metformin and she also researched cannabis oil.
This was alongside a long list of medications she was prescribed by the Royal Marsden Hospital which came with side-effects including adrenal insufficiency, nerve pain and anxiety. She also had botox to keep her left eye closed to protect the cornea from any damage.
The family say that they did struggle to get approval and support from some of the medical teams in UK for their exploration of alternative treatment options but the family praise the nursing staff at the Royal Marsden Hospital for respecting Emily’s wishes and her knowledge within the profession.
During the first six months after Emily’s diagnosis, the family made the most of their time together and travelled to their holiday home in Spain as well as to Dubai, Amsterdam and Emily’s favourite destination of Morocco.
To evoke memories of that holiday, the family threw a Moroccan-themed party at their home to celebrate Emily’s 21st birthday. A large gathering on one day featured belly dancers and a vodka luge and a more intimate celebration on another day was to the soundtrack of a live steel band. Despite the festivities, Emily heartbreakingly told her family that she didn’t want any presents but that she just wanted her health back.
It was at this time that Emily contacted The Brain Tumour Charity to start fundraising for the organisation. Within minutes, her fundraising target of £300 was hit and those who loved her have continued to support the Charity ever since to raise nearly £100,000 to date.
Heartbreakingly, Emily’s condition continued to deteriorate to the point where she needed help tending to even her most basic needs of washing and dressing. A scan in November also brought the news that the tumour had actually grown. She had chemotherapy at The Royal Marsden Hospital before travelling to Germany for 15 days of MRI-guided radiotherapy alongside a trial drug – BRD4 – which aims to reduce cell growth. The family say that this definitely helped with Emily’s laboured breathing.
Whilst in Germany for a month, Emily also had daily physiotherapy, occupational therapy and speech therapy to aid her overall wellbeing. Debi was with her every day in the hospital and stayed overnight in a nearby hotel so she could tend to her daughter’s practical and emotional needs at the time.
Debi said: “Emily needed a lot of care by this point – I helped her to shower every day and she wore a swimming costume to protect her modesty. I tried my best not to cry in front of her but it wasn’t easy. It was really quite a special time together as we watched a lot of true crime shows, she never complained and she remained reasonably upbeat. In fact, she got her trademark giggle back for a while.
“Emily’s dad, Tim, visited every weekend armed with her clean washing. She adored seeing her daddy and I will forever appreciate the incredible love, support and strength he also gave me during this horrendous time – I couldn’t have coped without him.
“Together, we explored the cobbled and hilly streets of old Tübingen and ate delicious German ice cream. They were incredibly special times but they have also left behind sad, tearful and emotional memories.
“Emily’s friends were and have continued to be amazing too. They stayed in regular contact with her throughout it all and they visited her whenever they possibly could.”
By Easter 2019, Emily was increasingly unwell. The family returned to the Royal Surrey Hospital and Emily was admitted to the oncology ward as she drifted in and out of consciousness. The family had a scare when the medical team said they didn’t expect Emily to make it through the night – but she defied the odds and spent the following day with loved ones eating ice cream instead.
Debi said: “Emily’s condition went up and down so often. But, before long, we knew that it was time for her to move to the hospice. That was really difficult because we knew that this was her final journey. I don’t think that Emily really knew where she was by that point – which may well be a good thing. Even then we refused to give up.”
The family decorated Emily’s room at the Princess Alice Hospice in Esher with photos and memorabilia from throughout her life. This included photos from her gap year as well as from the various events and occasions she had been fortunate to attend through charity Shooting Star including Strictly Come Dancing, The X Factor and Britain’s Got Talent as well as visits to Downing Street and Buckingham Palace. A particular highlight was when Emily highlight met Martin Kemp on ITV’s Good Morning Britain as it was the first time she had met someone else with a brain tumour.
Debi spent every day at the hospice, apart from a regular and much-needed Tuesday morning to herself to play tennis with Emily’s Godmothers. The rest of her time was spent helping to care for Emily and manage the steady stream of visitors which her popular daughter always had.
After 10 weeks at the hospice, Emily was coughing a lot and, in the early hours of the following morning, the hospice called to say that Emily’s breathing was deteriorating. She passed away at 4.40am with her parents by her side.
Debi said: “Emily always thanked everyone for their kindness and the team at the hospice were humbled by her fight and strength of character. She was so grateful for all the experiences she had too – she never saw herself as a patient but just a lucky person who was able to do all of these amazing things alongside her diagnosis. I will always remember the last Mother’s Day card she gave me – it broke my heart to see how much her writing had changed as she was losing the ability to use a pen properly. But the sentiment behind it will always stay with me.
“It was Tim’s support and pure adrenaline which kept me going through it all. I learnt so much about myself and about Emily during that time. She was so bright, brave and she was always the first to volunteer to help out – I miss her so much.”
“Emily never thought she was going to die. She was always so determined and our friends were completely in awe of her because of that as well as the incredible strength and bravery of her siblings and all of us as a family. Never once did Emily complain and never once did we give up hope for her.”
Debi.
A small funeral was held for loved ones in July and in September they had a big celebration of Emily’s life which Debi describes as like a wedding but without the bride. As a nod to Emily’s love of tropicana, she had a banana leaf coffin adorned with pale pink flowers. The Guildford High School choir performed and the headmistress paid tribute to Emily. There were also several eulogies including from Emily’s siblings, Charlotte and James as well as her best friends Adam and Georgia.
The family are relieved that Emily’s experiences were not affected by the pandemic at all so that they were able to travel to investigate medical alternatives and make lots of happy memories together including at the family’s villa in Spain.
They have also raised a huge amount of money for The Brain Tumour Charity for Emily’s Fighting Fund which they want ploughed into research to find a cure and try and answer the many questions they have about what happened to their daughter.
Debi said: “We’re so pleased that our fundraising has been such a huge success – we feel very fortunate to have had such an incredible amount of support from those around us. But we still need answers. We have been told again and again that it’s just bad luck but that’s not good enough.
“Emily had had problems with her eye sight and she saw an optician a year before her diagnosis who said she had a swollen optic disc and an MRI scan came back clear. She was diagnosed with a virus. Is this really what happened or could it be linked to the tumour? We may never know whether that was just a coincidence or not.
“For 18 months, I spent every minute of every day focussing on Emily and how I could do the best for her. I feel like I lost my fight. Emily was so thankful that I was a doctor as I knew what to look into and the options to explore. Not everyone will be in that position. So, that’s why we want to help people who are in a similar position to us and faced with an awful diagnosis and the many unanswered questions that can bring.”
There’s more information, including how to make a donation to Emily’s Fighting Fund, here.