Leila from Northampton died in 2016, six years after she was diagnosed with a craniopharyngioma. As a former carer turned mechanical engineer, Leila’s family thought her seizures, headaches and fatigue could be from overworking. Soon after the birth of her second child, in 2007, Leila’s symptoms worsened and eventually in 2010, a scan confirmed a tumour on her brain. She underwent radiotherapy and multiple surgeries to drain the fluid on her brain which left her with life-changing injuries. Leila died in December 2016, she was 41.
Here is Leila’s story, as told by her mum, Janis…
Leila should have been out clubbing, working and caring for her two children who were nine and 10 at the time. She was one of twin girls and had an older brother. When she was four, we moved to Scotland, a heritage she was abundantly proud of, embracing Scottish traditions and hosting huge gatherings for Hogmanay, her Burns suppers were famous amongst her friends.
She worked as hard as she socialised and, growing up, she was a typical teenager, rebellious but also very caring. She ran many half marathons, raising money for charity. In fact, in a poem read out at her funeral, her friends described her as a ‘super-mum’, because she seemed to do everything. After her diagnosis, setting up a Facebook group of the same name which her friends used to keep me in the loop as I was living in Scotland, providing me with a network of support when I visited Leila.
The first signs that there was anything wrong came in her early 20s when Leila had a seizure. She was working as a carer in a mental health facility in Edinburgh at the time. Her shift patterns were erratic and she worked long hours but continued to live life to the full. We put it down to overworking, not eating enough and too much alcohol. She never was someone to do anything by halves.
She was involved with the Air Training Corps (ATC) and taught cadets how to fly gliders, holding a glider licence herself. Her plans to join to Royal Air Force (RAF) were scuppered due to the fact that she suffered with seizures and her focus turned to caring. She worked for an agency and cared for people in their own homes all over the UK and sometimes abroad too. In 2000 she signed up to study mechanical engineering at the University of Northampton.
One night in 2003, she fell after having her seizure, fracturing her skull. Over the next two years she suffered from bad headaches and was seen by a consultant. She went to hospital for a scan and I remember quizzing the doctor, asking if they were sure it wasn’t a brain tumour. Her paternal aunt had died from the disease in her mid-twenties almost three decades earlier and my mind raced, thinking Leila could have the same.
Leila continued with her busy life, marrying in 2005 and two years later giving birth to her second child.
By this time, Leila’s headaches became more frequent and she complained of feeling tired and lethargic. She became short tempered and forgetful. We wondered if Leila could be suffering from post-natal depression.
The GP seemed to be working through a list of conditions; she was tested for an underactive thyroid, which was common in our family. The doctor suggested she stop taking the contraceptive pill and gave her medication for migraines.
Her symptoms persisted and it got to a point where we needed answers. This time her husband went with Leila to the GP, and insisted that they find the cause of Leila’s symptoms. She was referred for a scan, ten years after her initial scan. The results confirmed our worst fears and we were told Leila had a small tumour growing on her brainstem.
In August, after a biopsy, doctors told us Leila had a low-grade craniopharyngioma and fluid-filled cysts were occupying space in her brain causing her confusion, mood changes and headaches.
She was treated primarily with radiotherapy which calcified the cysts and after the first operation – she had half a dozen – Leila seemed calmer and more aware of what was going on. Her dad died nine months earlier and it seemed now that the grief of his death had finally hit her, she was visibly upset.
Each time she went into hospital for the cysts to be drained, she seemed to come out worse off. She struggled with her balance, she couldn’t remember her daughter’s early years, and she went through early menopause. Leila still fought the tumour and managed to stay on at work, be a wife and mother and kept her driving licence for another two years until the tumour took over.
For as long as she could, she kept her independence, but there came a time where is was unsafe for her to walk her children to school alone, cook meals at home and iron clothes, for fear that she would have a seizure or forget what she was doing.
In 2014 she was admitted to Northampton Hospital after a fall at home, this was followed by an emergency brain operation at The John Radcliffe Hospital in Oxford in an attempt to remove at least some of the tumour, despite previously being warned of the risks.
This operation left her in a coma from which she wasn’t expected to recover. Leila spent her 40th birthday in a hospital room surrounded by her family and friends trying to celebrate her glorious life. She came out of the coma that night; crying and howling, the only way I can describe it is like a wounded animal in a lot of pain. This continued to be her only means of communication.
Leila was transferred to a special unit for brain injury in Leamington Spa, where we saw slight improvement when she spoke one day when asked who I was she answered “that’s my Mum”. The recovery was short-lived however and her condition worsened. She was moved to a special residential facility nearer to her home, so her children could visit easily and friends were able to pop in for short visits.
My lovely daughter, a bright, happy person, a real party girl, who could rebuild a car engine, and could turn her hand to anything from gardening, DIY, sewing and baking; ended up not being able to see, speak, eat, drink, walk, hug, and became incontinent.
She could hear but could only communicate with the heart-breaking howls of pain and frustration, no one could hear that noise without being deeply affected. To me it was as if she was saying help me, I don’t want to be here.
Throughout her diagnosis and treatment, Leila insisted that should she get to a point where the tumour takes over her body and ability to function for herself – she didn’t want to live.
Leila was tube-fed and prone to chest infections. She developed sepsis and was admitted to hospital once again. Doctors were talking about stopping her medication but continued to treat her, I knew that isn’t what she wanted.
It was a horrendous time. As a mum whose natural urge is to protect her child, I found myself going against everything you think a mum should, and said I wanted them to stop treating her and let her die. It took six weeks for Leila to die, in December 2016.
It haunts me every day, what Leila went through. She should have been enjoying her family and a career that she had worked so hard to shape. We need less invasive treatments than those currently available for brain tumour patients.
In October, I was invited to tour the lab at the Brain Tumour Research Centre of Excellence at the University of Plymouth. Seeing the work of the enthusiastic and dedicated scientists at the centre was truly motivating, to know that research is taking place is fantastic but we must build on this momentum to find a cure for this devastating disease.
Janis Wadge
October 2023
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 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 touched by Leila’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