Mum of Evie Carey, 10, from near Bury St Edmunds, speaks of daughter’s fight for her life after brain tumour diagnosis
A girl who was fighting for her life last summer is now going from ‘strength to strength’ after an inoperable brain tumour disappeared with treatment.
Ten-year-old Evie Carey, from Norton, near Bury St Edmunds, left school for last year’s summer holidays just like other children, but on August 2 she was diagnosed with a fast-growing form of brain cancer.
Her mother Shelley Carey, 45, who works as a police civilian, said it ‘kind of came out of nowhere’.
She said: “She had been absolutely fine, a fit and healthy girl, and enjoyed her gymnastics and running and a few weeks before she had had a couple of headaches and in kind of the last week coming up to her being diagnosed she had more headaches and was sick, bless her, but the doctor wrote it off as hormonal headaches and we took her to A&E and they said it was migraines and they didn’t scan her.
“We persisted as she wasn’t right at all and kept phoning and eventually got a doctor who said he wanted her scanned and as soon as they did the scan at West Suffolk we were blue-lighted to Addenbrooke’s.”
There, Evie, a pupil at Norton CEVC Primary School, was re-scanned and underwent a biopsy, had a Hickman line fitted for her drugs and a shunt fitted to her brain to drain the fluid.
“We were told straight away it [the tumour] was inoperable,” said Shelley. “It was too much tumour in the wrong place and they wouldn’t be able to take it away. That was kind of the first blow.”
Evie had been diagnosed with medulloblastoma, which can affect walking, balance, and/or fine motor skills.
According to Cancer Research UK, it is the second most common brain tumour in children and is the most common malignant (high grade) children’s brain tumour. Around 52 children are diagnosed with medulloblastoma each year in the UK.
Within two weeks of being in hospital at Addenbrooke’s, Evie began chemotherapy, but within days she started to go ‘really downhill,’ her mum said.
“She was very, very poorly and taken up to the high dependency unit,” said Shelley. “We were told she was very unlikely to see the week out.”
They were told it was ‘a fight’ between the swelling on the brain and whether Evie would respond to chemotherapy in time.
“We were taken into a room with consultants and they said every second is critical,” said Shelley. “If the swelling had carried on it would have killed her, but fortunately the chemotherapy started to work and shrink the tumour.”
Shelley and dad James, 47, who runs his own plumbing business, were in hospital for just under seven weeks during which their daughter started to gradually be able to speak after a couple of weeks and be able to open her eyes and sit up.
When Evie left hospital in mid-September, she was still in a wheelchair.
Shelley said Evie, who has also had an intensive course of daily radiotherapy, had just been ‘improving more and more’ and her strength has returned. Her hair is also starting to come back.
“She’s just Evie now,” she said. “She’s doing cartwheels. She’s just amazing. On 16th December, just before Christmas, she had a scan and all the cancer has gone.
“After being told it was inoperable, then responding to chemotherapy and radiotherapy, she has just gone from strength to strength really.”
She added: “All the doctors came out of Addenbrooke’s to see Evie as she was written off really.”
Shelley said Evie had shown ‘such amazing humour and positivity throughout the whole thing’.
Evie is back at school part-time and goes up to Thurston Community College in September, which her mum said was a ‘massive step’.
She described Evie as ‘really sporty’ – she used to do the advanced gymnastics at Pipers Vale in Ipswich and was a member of the Saint Edmund Pacers running club’s junior team – a ‘proper wild child, always climbing trees, really free-spirited’.
“Just a happy little girl. Really gutsy and just a tomboy in lots of ways and likes to get stuck in,” she added.
Now Evie goes to play football in the park after school with her friends and has even climbed up a tree, which her mum said gave her palpitations!
“She loves going on bike rides and we go most evenings. She’s really getting into it, which is wonderful,” added Shelley.
As Evie and her sister Jess, 14, were gifted bikes from the charity Cyclists Fighting Cancer, this was one of the causes supported by Norton CEVC Primary School’s recent dance-a-thon.
The school said with Evie and another Norton Primary pupil diagnosed with cancer and other families touched by this disease, it chose to raise funds for Cyclists Fighting Cancer, Young Lives vs Cancer – which has also provided direct support to the Carey family - and Cancer Research UK.
Headteacher Lisa Sparkes said the day was ‘so special’ and there was a real sense of joy and purpose to the day. “Thanks to everyone’s support we have raised more than £2,500 to be shared between these charities,” she said.
Continuing through break and lunchtime, the whole school, staff and parents took to the dance floor together for a last dance at the end of the school day.
Shelley said: “The school have been absolutely fantastic and have been wonderful. It does feel like such a community.”
Speaking of the past year, Shelley described everything they had been through as a ‘whirlwind’ – you go along, normal life, and something knocks you off your feet.
Evie has a scan on Monday and if all goes well she has come to the end of her treatment. “We are just so grateful for every second we get for everything being fine,” Shelley said. “None of us knows what’s round the corner and that’s been the wake-up.
“People often say when you go through something like this you see things differently and that’s certainly done that for us. We are just trying to get that bit of normality back.”
