A STUDENT died after her dizzy spells and tonsillitis were blamed on her overdoing it at university.
Emily Oliver was suffering from various seemingly harmless symptoms while studying nursing in Nottingham.
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Previously, she’d been the “life and soul of the party” who loved sports and going to festivals and concerts.
But when Emily came home for Christmas in 2017 after her first term, she was dizzy, looked “very tired”, and generally didn’t feel quite right.
“We just thought she’d overdone it as a fresher because there was always something going on with her, be it tonsillitis or glandular fever,” her mum Debi told the charity Brain Tumour Research.
“But 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.”
The doctor thought Emily might have an inner ear infection called labyrinthitis and noticed some weakness down her right side, but deemed both symptoms “not significant enough to raise concern”.
Days later, the family hosted a New Year’s Eve party at home, where more worrying signs started to emerge.
“She appeared to have been dribbling chocolate, but looking back at the photos, I can see now that she had a face droop,” Debi, 58, said.
After the get-together, Emily was due to fly to Spain but she suddenly became anxious and reluctant to go.
“She went, but the people who look after our villa said they’d seen her lying on the floor,” Debi, a retired GP, said.
“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 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.”
Tests at the Royal Surrey Hospital in Guildford initially came back normal, so the family felt “totally reassured”.
But Emily was later admitted with “full-blown symptoms that came on quite dramatically”.
She was then diagnosed with a diffuse midline glioma – an aggressive brain tumour that affects children and young adults – and given the steroid dexamethasone.
A neurosurgeon told Debi: “You’ve got to tell Emily she’s going to die.”
She died peacefully, and with bravery and dignity, having survived 18 months from diagnosis
Debi
The heartbroken mum said: “To then go back and try to be positive around Emily without being sick was absolutely horrendous.
“The oncologist told Emily she had just three months to live without treatment.”
To try to prolong her life, the student started radiotherapy two days later, before also undergoing chemotherapy and taking a targeted cancer drug called Avastin privately.
She was then moved to the Royal Marsden Hospital in London, where her “brilliant” friends rallied around her.
Despite everything, Emily kept up her “full beauty regime” – always making sure to do her hair, nails and eyelashes alongside treatment.
She visited Germany for further tests and was prescribed a personalised vaccine based on mutations found in her tumour.
Sadly, this made little difference, and Emily soon began to deteriorate further.
She did, however, have the strength to host a Moroccan-themed 21st birthday party with her pals.
‘Got her smile and giggle back’
By February 2019, she was “really struggling with her mobility” so she was admitted as an inpatient at a hospital in Germany.
While there, she took the vaccine in much smaller increments than before and also met with a speech and language therapist and had physiotherapy.
“The treatment did make a difference,” Debi said.
“Emily got her smile and her giggle back, and I think it gave her more time.”
Her parents remained positive, but in April 2019, while on holiday in Spain for Easter, it became obvious she was seriously unwell.
They flew home and eventually secured a bed at the Princess Alice Hospice in Esher.
On July 15, 2019, after 10 weeks there, Emily passed away.
“She died with Tim and me by her side, peacefully, and with bravery and dignity, having survived 18 months from diagnosis,” Debi said.
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Since her death, the couple have raised more than £200,000 for research into brain tumours – something Emily desperately wanted.
Instead of presents for her 21st birthday, she set up Emily Oliver’s Fighting Fund and invited friends and relatives to make donations.
“We will never get over the pain of losing Emily, but knowing we’re doing what she wanted, helping others by funding research into the type of tumour she had, gives us great comfort,” Debi told SurreyLive.
“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 the most deadly form of cancer for children and young people.
Around 16,000 people are diagnosed every year in the UK. Just 12 per cent survive beyond five years.
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There have been no new treatments in almost 50 years.
More than £500million is spent on cancer research in the UK every year, but less than two per cent is dedicated to brain tumours.
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What is a diffuse midline glioma?
DIFFUSE midline gliomas are the second most common type of primary high grade brain tumour in children.
They grow in the midline between the two halves of the brain.
Symptoms can be vague, but can include:
- Headaches
- Nausea
- Fatigue
- Problems with walking, coordination, balance
- Weakness in the arms and legs
- Difficulty controlling facial expressions
- Speech problems
- Issues with swallowing and chewing
- Double vision
A patient’s prognosis will vary depending on the tumour and how they react to treatment, but the average life expectancy after diagnosis is less than a year – usually between eight and 11 months.
About 10 per cent of people survive at least two years, and only two per cent live beyond five years.
Diffuse midline gliomas affect around 25 children every year in the UK.
Source: The Brain Tumour Charity