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22nd January 2016

Lying to save her daughter’s life

When doctors missed her three-year-old’s brain cancer, Amanda decided she had to do whatever it takes to get a diagnosis for her child.

Amanda Davies knew something was wrong. Over the course of a year, her daughter, Lil, had gone from being a bubbling and busy toddler to a very sick little girl.

It began with difficulty walking upstairs. Lil would drag herself up the stairs using her hands instead of running up as she had done before.

Then walking became difficult and, within months, she started deteriorating rapidly. Lil would frequently complain of headaches and gradually become quiet and withdrawn.

On several occasions, Amanda had taken her sick little girl to see the doctor but on each occasion she left dissatisfied.

She began to fear that something more serious may be afoot and wanted a CT scan on Lil’s brain. The trouble was that not everyone seemed to grasp the urgency of the situation.

So Amanda took matters into her own hands. She brought Lil to the emergency department of her local hospital and decided she would have to do something she had never done before: tell a bare-faced lie to a doctor.

‘It was totally out of character for me, but I felt I had no other option,’ she told the Daily Mail.

10-hour operation

Despite her nerves, Amanda told the doctor that her daughter had fallen, hit her head and vomited. When the doctor observed Lil’s laboured style of walking, he grew concerned.

A CT scan was ordered and Amanda found herself confronted with terrible news: Lil had a brain tumour the size of a lemon. She had finally been given a diagnosis but it was the one she had feared most.

After a ten-hour operation to remove the tumour, strong medication to control swelling of the brain, and a blast of radiotherapy, Lil was on the road to recovery.

New tests

It was a frightening and dramatic experience. But it could have been much worse.

Brain cancer kills more children than any other type of cancer and early diagnosis is crucial. If the tumour had been picked up weeks or months later, the outcome for Lil may have been much worse.

Sophisticated CT scanners can show doctors to size and location of brain tumours, and smart new tests are helping to save lives by monitoring cancer.

If doctors know what kind of tumour their patient has, and can observe how it is responding to treatment, they can choose the right therapies for their patients.

One way to do this is to take a sample of brain tissue – a risky and invasive procedure. A blood test will not provide enough information on which to base clinical decisions but researchers believe cerebrospinal fluid (CSF) could provide an alternative to tissue biopsy.

CSF contains high concentrations of tumour DNA. By taking a so-called ‘liquid biopsy’ via lumbar puncture, doctors may be able to extract enough information to offer patients an accurate prognosis for their cancer.

Informed decisions

Genetic information about the tumour could guide treatment choices and allow doctors to track any genomic alternations in the tumour.

And, because lumbar puncture is less invasive than tissue biopsy, the tumour can be monitored regularly – keeping medical specialists one step ahead of the cancer they are fighting. This research could transform the prognosis for brain cancer patients in the years ahead.

In the meantime, Lil continues to make progress. She needed intensive physiotherapy, as well as speech and language therapy, to restore her speech and movement, and was discharged after a month in hospital.

She is still a bit ‘wobbly’ on her feet, according to Amanda, but thanks to early diagnosis, swift intervention – and a little bending of the truth – there is reason to hope.

‘If I had not gone to A&E that day and effectively lied, I think Lil would be dead or her cancer would have been inoperable,’ Amanda says. ‘I’m so glad I did what I did. I just wish I had done something sooner.’

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