Five-year-old girl’s ‘ear infection’ turned out to be a brain tumour the size of a tangerine Liliana Lyzwinska also began experiencing personality changes in being irritable and arguing with her older sister

When little Liliana Lyzwinska began arguing with her older sister Nicola, who is 13, her mother thought it was strange because they normally get on so well.

The ‘happy-go-lucky’ five-year-old had become unusually sensitive and irritable, complaining that she didn’t want to do stuff at school and bursting into tears.

A couple of months later, the youngster then felt wobbly on her feet but doctors put it down to an ear infection, which can cause imbalance or dizziness. She had just recovered from a respiratory infection.

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But the youngster also began suffering headaches in the back of her head which were always worse in the morning and vomiting. Kinga Kurdziel began to worry that something wasn’t right with her daughter, but doctors believed she was still just shaking off the chest cold and told her to continue with her antibiotics.

Her ‘beautiful smile disappeared’

Then a few weeks ago, Liliana, known as Lilly, woke up in agony and Kinga rushed her to A&E. “She was holding her head in her hands and screaming and that’s when I knew my feeling something was really wrong was right.”

After an MRI scan, medics sat the single mother down to tell her the most devastating news any parent can hear – Lilly had a brain tumour.

“They told me it was the size of a tangerine,” she said. “It was a huge shock to be told your child has cancer. I couldn’t speak for a while.”

Lilly had an ependymoma tumour, the third most common type of childhood brain cancer. It has the potential to spread to the spinal cord via the cerebrospinal fluid.

Almost overnight since she had that strong headache she changed into a different child Kinga Kurdziel

“Almost overnight since she had that strong headache she changed into a different child,” said Kinga. “Her beautiful smile disappeared.”

Two days later, Lilly had a 12-hour operation that successfully removed the mass.

Kinga, 31, originally from Poland but living in Ipswich, said it’s hard to explain to such a young child why they are ill.

“Lilly was barely talking, it’s been a very confusing time for her. I haven’t explained to her about the concept of cancer. I’ve tried to keep it simple and told her she’s being kept in hospital so that the doctors can make her head better.

“I think she sensed the seriousness of it, she asked me, ‘am I going to be in here for 100 years?’ It’s been heartbreaking to see her like that.

“Now, after the operation, she is starting to talk more. She feels more positive and has told me she believes the doctors can work ‘magic’ on her.”

Proton beam therapy

Lilly’s doctors have told Kinga that she is a suitable candidate for pioneering proton beam therapy, which she will have either in Germany or in Manchester and will be funded by the NHS.

This is a type of radiotherapy that uses a beam of high energy protons, which are small parts of atoms, rather than high energy x-rays to treat specific types of cancer. The dose can be precisely targeted at the tumour, reducing the damage to surrounding healthy tissues and vital organs which is an advantage when the cancer is in delicate parts of the body such as the brain.

“The doctors said the type of tumour she has can come back, and she is best having proton beam therapy because of that although the surgery was successful. Just in case any tiny parts of the cancer has been left – as they can never guarantee it’s 100 per cent gone,” she said.

However, Lily’s treatment has been delayed because she has come down with an infection. She may also need chemotherapy after.

“We’re hoping as soon as she’s strong enough she will start her treatment. I can already see such a difference in her, she’s much calmer and happier.”

Proton beam therapy coming to the UK In the coming years, the UK is expected to have at least six proton beam centres. The first run by the NHS, at Manchester’s Christie Hospital, opened this summer. The second, at University College Hospital in London, is due to open in 2020. Four run by private company, Proton Partners International, are also being planned. Since April 2008, eligible patients who required proton beam therapy have been able to access NHS funding to be treated abroad. Some patients will still need to travel abroad for treatment until both NHS proton beam therapy centres are fully operation. However, almost a fifth of UK cancer patients who have applied for proton beam therapy treatment have had their pleas rejected by the NHS. Health bosses have refused 170 of of 907 applications made in the last 10 years, according to the Proton Therapy Center in Prague, Czech Republic, which got the figures through a Freedom of Information request.

Fundraising appeal

Kinga’s friend started a GoFundMe appeal to help treat support her with extra costs, such as transport to the hospital, while Lily is getting treatment.

She wrote: “Lilly’s mum is struggling to provide financially for herself and Nicola, her other daughter. She’s spending every minute possible by Lilly’s side.

“I decided to open this fund for Lilly’s mum to take off her shoulders at least this one struggle.”

Kinga said: “It’s very touching that my friend started the appeal. If I have any money left over it would be lovely to take Lilly to Disneyland after she’s had her treatment so she has something nice to look forward to through this traumatic time.”

To donate to the fund, visit here.