Mail's Fighting To Beat Children's Cancer campaign gets festive

Special Christmas party for young people with brain tumours shows the good your money can do when you donate to the Mail’s Fighting To Beat Children’s Cancer campaign

• For the first time, Lapland UK went on the road to delight children with cancer
• The Daily Mail campaign will donate £25,000 a year for the next two years 
• You can donate to our appeal online at www.cruk.org/dailymailappeal

Father Christmas is dispensing presents, Mrs Claus is supervising the gingerbread and the reindeer are being introduced to a sea of small faces, each one lit up with joy. 

Because a dose of Christmas cheer is what these children so richly deserve. Some have undergone years of gruelling treatment; an endless rollercoaster of scans, surgery, radiotherapy, chemotherapy — never knowing what the next day, or week, let alone Christmas, holds. 

But for now, it’s all about soaking up the fun. This special Christmas party at Lanwades Hall, Suffolk, is being held by Brainbow, the incredible rehabilitation service for children and young people with brain tumours, based at Addenbrooke’s Hospital in Cambridge. 

And it is the first time that Lapland UK has taken its Christmas box of delights on the road. 

The faces of the children gathered here — and those of their siblings and parents — are a vivid illustration of just why the Mail’s campaign with Cancer Research UK (CRUK) for more investment in children’s cancer is so important. 

Wearing a fluffy pink jumper, Orla Hermitage, 11, is holding aloft her new teddy bear, courtesy of an elf. 

Her brother Eddie, eight, is busy colouring, while parents Susan and Simon are taking it all in. 

Orla was only ten months old when she was diagnosed with a brain tumour that transformed their lives. 

Susan, 42, who has travelled from Stevenage (Brainbow serves the whole of the East of England) says: ‘Orla was a very normal, happy baby. Then she started vomiting, but not like she had a tummy bug, it was something different. She also began not using her left hand. 

The faces of the children gathered here — and those of their siblings and parents — are a vivid illustration of just why the Mail’s campaign with Cancer Research UK (CRUK) for more investment in children’s cancer is so important

‘I took her to the GP many, many times and was always told it was just the normal bugs a baby picks up, but I remember knowing it wasn’t that, it was worse.’ 

That terrifying revelation came when Orla collapsed. Rushed to hospital, a CT scan revealed an enormous brain tumour and fluid that was pushing her brain down her spinal column. 

‘They said it was touch and go if she would make it,’ says Susan, looking with a proud smile at her daughter. ‘But she did.’ 

Her joy is mixed with anxiety, for in January, Orla will be back in hospital for yet more surgery. 

Her tumour is growing again; as with so many childhood brain tumours, treatment is often an ongoing cycle of care.

Orla’s diagnosis, a paediatric glioma, says Susan, is complicated. ‘It is a very individual tumour … which means there’s not a lot of treatment available. They [tumours] are all so different and not enough research is done into them, which is why the work of CRUK is so vital.’

Orla is a beautiful, glowing 11-year-old, yet the impact of tumour and treatment has caused neurological damage, meaning she struggles with cognition — so while meeting Father Christmas is enormous fun, preparing for the day requires work. 

‘What Brainbow do for us as a family is offer specific services tailored not just for children with cancer, but children with brain tumours,’ says Susan.

‘They have worked closely to help her, to create social stories and things that help her understand what is going to happen. They’ve given us tools to help calm her … if she is upset, we are all upset.’ 

Brainbow, created in 2013 and funded by four small local charities, is like a giant support blanket. 

Christina Lofthouse, 41,  who has travelled with her daughter Sophia, eight, from her home in Rushmere, near Ipswich, has welcomed that support in the five years since Sophia was diagnosed with a type of brain tumour called a pilocytic astrocytoma. 

The mother-of-three knew something was wrong when her three-year-old was so tiny she could still wear clothing meant for a 12-month-old. 

‘We were brushed off for years, but I persevered. I knew something wasn’t right.’ Her worst fears were realised in December 2017, when a scan revealed there was a tumour in Sophia’s brain stem that needed immediate surgery. 

‘They put her in a coma and I had to go and give her kiss goodbye,’ says Christina. 

‘They didn’t know at that point if they could do anything.’ Surgery was a success, but Sophia now needs a feeding tube and suffers from cognitive delays. 

Festive cheer: Sophia Lofthouse, eight, who was diagnosed with a type of brain tumour called a pilocytic astrocytoma, was among those who enjoyed the special Lapland Christmas party

The future is one of ‘watch and wait’. For all this, Sophia (­currently playing pass the parcel with an elf) and her family are determinedly optimistic. 

‘My view is we let her live life to the full. We could wrap her in cotton wool, but what does that do?’ says Christina. 

For Bethany Williams, 15, who travelled with mum Jenna, dad Kevin and sister Freya, seven, from Bury St Edmunds, this Christmas is rather different from last. 

‘It was just after Christmas that Bethany started being sick,’ says Kevin, 40. 

After she was diagnosed with a malignant medulloblastoma, surgeons removed as much as they could, but Bethany will remain on chemotherapy until the summer. 

Bright, she has reduced the number of GCSEs she is taking to four, but is determined to become a pharmacist and has A-levels in mind. 

‘Hopefully by the time that comes around, this will all be long in the past,’ says Kevin. Watching over proceedings in a cheery bowtie is paediatric oncologist Amos Burke, who leads Brainbow’s multi-disciplinary rehab team. 

He is passionate all the children Brainbow supports reach their ‘maximum potential’. 

He’s also delighted Brainbow’s unique input is being expanded into the new Cambridge Children’s Hospital, which aims to be a ‘world first in caring for children’s physical and mental health together’, as well as the first dedicated hospital for children in the East of England. 

‘There are almost as many types of childhood brain tumour as there are types of cancer — 200 different sorts,’ he says. 

The special Christmas party at Lanwades Hall, Suffolk, was held by Brainbow, the incredible rehabilitation service for children and young people with brain tumours, based at Addenbrooke’s Hospital in Cambridge

‘CRUK funds research which helps us, for example, to understand more about these different sorts of brain tumours,’ he says. 

‘We have better radiotherapy, more targeted chemotherapies, tools to help surgeons do their jobs better, but we don’t yet have a completely new paradigm of treating childhood cancer of the brain and I hope that some of the work being done and funded by CRUK will lead to that.’ 

To learn more about Brainbow, and the charities that support it, visit cuh.nhs. uk/our-services/brainbow/

For more details visit the appeal page.   

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