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In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

Millie Stoner

Millie Stoner’s brain tumour symptoms, which included headaches, vomiting and a lack of balance and coordination, went undiagnosed for years, despite her having two MRIs and a CT scan. The 17-year-old, from West Sussex, was eventually diagnosed with cerebellar ataxia and it was during investigations for this that a medulloblastoma, later identified as high-grade, was discovered. She has since undergone surgery and proton beam therapy and has just finished her fourth of eight rounds of chemotherapy.

Here is Millie’s story, as told by her mum Shelley …

Millie was a really energetic, feisty, cheeky girl who was constantly running, jumping and bouncing. She was full of beans, into everything and obsessed with dancing and gymnastics.

When she was eight, I got a call from her school saying someone had kicked a ball and it had hit her on the side of the head. They were concerned one of her eyes hadn’t returned to the centre straight away and wanted me to take her to A&E. I took her straight to the hospital but they couldn’t make head nor tail of it. They gave Millie an MRI but didn’t see anything wrong and, after keeping an eye on her, signed her off after 12 months.

From the age of 13, Millie randomly started suffering from headaches, for which our GP prescribed medication for migraines. Then from January to June 2019, we had a really horrific time. At 14 Millie was vomiting up to nine times a day and having headaches that would last as much as 10 days at a time. She was getting into trouble at school because she was missing so much and her behaviour wasn’t good because she was so angry. She was struggling to keep up academically and wasn’t able to make friends.

“We went back and forth to the doctor.”

It was during one of these visits she noticed Millie suffering from left-sided weakness and gave her an urgent referral to hospital. Once there, Millie had another MRI but, again, it was reported as normal and she was discharged. She was also referred to an eating disorder centre. I was happy to accept help by anyone who offered it but didn’t understand how they could say Millie had an eating disorder when she would vomit spontaneously whilst sat next to me. I knew she wasn’t purging or putting fingers down her throat.

“The medical professionals convinced us Millie’s symptoms were the result of anxiety and mental health problems.”

From 2019 to 2020, COVID-19 hit and they stopped seeing her face-to-face. Each time she had a phone check-up, I told them she was still getting headaches and sickness.

In September 2020, social services became involved. They referred Millie to the Child and Adolescent Mental Health Service (CAMHS) for an urgent mental health assessment. Our GP said Millie needed counselling and so we paid for a private counsellor whom she saw for a year.

In August 2021, I told my husband I thought Millie was walking strangely. We decided to keep an eye on her, wondering if it was just a phase. By the time she started college that September, she was walking with her feet really far apart. It looked weird and so I took her to the doctor who wasn’t overly concerned but said she’d refer her. I must have taken her back four times between September and December. Millie had developed cuts on the back of her ankles from where she’d hit herself whilst trying to bring her feet in as she walked.

“She appeared drunk and often fell over, which was clearly not normal.”

On one occasion, Millie’s counsellor told us she’d practically had to carry her up the stairs after we dropped her off. She was concerned Millie was exaggerating not being able to walk and thought she’d benefit from being placed in a 28-day residential programme. At that point Millie had had two MRIs and everyone was telling us there was nothing physically wrong with her, so we believed them.

“Just before Christmas, Millie fell off of the school bus and knocked herself out.”

She was admitted to the children’s ward for observation overnight. They did a CT scan, which was reported as normal. They also noted she had a history of wobbly gait and a type of eye jerking known as horizontal nystagmus, which we were not aware of but can be quite subtle at first and explained her lack of coordination. I also took Millie to an optician who referred her to the hospital’s ophthalmology department after noticing something wasn’t quite right.

“In December 2021, my husband’s cousin, who works in an ataxia clinic, said Millie looked like one of their patients.”

She was adamant there was something neurologically wrong with her and strongly suggested we got a second opinion. Our GP told us ataxia was a broad term for a group of disorders that affect co-ordination, balance and speech. She wrote Millie an urgent referral but it took several months to come through by which time Millie already had a brain tumour diagnosis.

“In February, we went on holiday to Tenerife and realised that Millie couldn’t stand or walk without holding onto something or someone.”

She hadn’t been to college since her fall in December and was working remotely to get her coursework done. She could navigate her way around the house by touching things but when we were away she wasn’t able to do that and was having to hold onto us. She couldn’t get up and down stairs, and this became obvious as a result of the intense amount of time we had together on holiday. It was like watching a toddler walk. She could only manage a few steps before falling over or needing to hold onto something.

My husband called our hospital’s medical director to tell him about the appalling situation we found ourselves in with Millie and to stress that something needed to be done. We didn’t hear back quickly and so he contacted an ataxia specialist in Massachusetts. He described Millie’s story and asked him to see her. The specialist didn’t want Millie getting on a plane and instead recommended she saw an ataxia specialist at the National Hospital for Neurology and Neurosurgery (NNHN) in London a few days later.

“The NNHN professor spent six hours with Millie at the beginning of March, after which she was able to give a definite diagnosis of cerebellar ataxia.”

They did 21 blood tests and are continuing to do more even now but they also ordered another MRI scan. We got a call just hours later to tell us Millie had a brain tumour. They said it looked like a low-grade astrocytoma or meningioma in her cerebellum but they would need to do a biopsy to confirm.

“It sounds strange because you’d never wish for your child to have a tumour, but we were relieved to finally have an explanation for everything that had been wrong with Millie.”

Since then we’ve been surrounded by a team of oncologists, neurologists, neuro surgeons and specialists who have tried hard to improve her outcome and quality of life, and that too has been a relief.

On 7 April 2022, we returned to the NNHN for Millie’s biopsy. A week after she was discharged, we were asked to go back. That’s when we learned her tumour was a grade four medulloblastoma. We were also told they had recalled her 2019 scan and could see something on there that wasn’t normal. Millie went back for a full resection on 27 April. We were told the operation was a success and they had managed to remove most of her tumour.

“Millie did however suffer lots of complications, including developing an infection in her brain tissue and getting meningitis.”

For three weeks, they administered antibiotics into her brain via an external ventricular drain (EVD). She also developed hydrocephalus, an abnormal build-up of fluid in the brain, which required her to be fitted with a shunt. Millie was in hospital for at least 40 nights from April to June and by August she had started proton beam therapy. She had 30 sessions over six weeks. She was hospitalised for a week after her first session and said she didn’t want to do anymore but the University College London Hospitals (UCLH) and NNHN were amazing and really helped to get her through it. She moved onto chemotherapy after that and has just finished her fourth of eight cycles. Sadly, she seems to feel worse with each round.

“I feel like I’ve aged 10 years in the last 12 months.”

We’re cautiously optimistic that by the end of Millie’s treatment she will be cancer free, but she’ll still be profoundly deaf in one ear and she’ll still have cerebellar ataxia. We don’t know what that means for her future. She has lost a large part of her left cerebellum and now her tumour has almost fully gone, I fear that’s how she’ll be for the rest of her life. The tissues in that side of her brain have suffered atrophy, which means the nerve cells aren’t able to make the connections that help them communicate. Her doctors aren’t sure exactly why this has happened but it could be that her tumour cut off the blood supply to them. We pay for her to have physical therapy and UCLH has organised six weeks of intensive rehabilitation for her in a brain injury centre when she finishes and recovers from chemo. We just hope this helps.

“For three years, Millie suffered horrifically as she lost more and more of her mobility and I can’t help but think things might have been different if the abnormality on her scan had been detected in 2019.”

Instead of trying to throw medication at people who have symptoms like headaches, I’d like to see GPs, hospitals and paediatricians consider the possibility of them having a brain tumour. For some, their failure to do so could result in death. For others, like Millie, it could have a huge impact on their lives.

“We can’t change what’s been or what is, but we can help raise awareness of brain tumours to help other people in the future.”

Most days I wake up really grateful that Millie is alive but there are days I wake up angry. I’m hoping she’ll have a great life and, as parents, we’ll do everything we can to ensure she lives as full a life as possible, even though we know it’s going to be challenging. Brain tumours aren’t spoken about enough and doctors don’t recognise their symptoms well enough, and that needs to change.

“If Millie’s story can prevent someone else from suffering the same catastrophic damage she has then that’s something positive to come out of this.”

So much more can be done to change the outcome for other people’s futures and, ultimately, this comes down to research, which is why I support Brain Tumour Research and will be taking part in its 10,000 Steps a Day in February challenge.

Shelley Stoner
January 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.

Brain Tumour Research is determined to change this.

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