- A CT scan revealed she had a grade three anaplastic ependymoma
- Around 30 children are diagnosed with ependymoma every year in the UK
A schoolgirl’s brain cancer symptoms were dismissed for months as a virus that could be managed with Calpol by GPs during phone appointments.
Indeg Glyn Roberts, from Rhoshirwaun in Wales, began suffering from headaches and repeated vomiting in summer 2020 — the early months of the pandemic.
In the following months, she had a series of phone appointments with medics at her local practice and was repeatedly told that her illness could be managed with the over-the-counter medicine.
The six-year-old was eventually given an in-person appointment and referred for tests when balance problems developed.
Results showed that she had a rare brain cancer. After months of treatment, she is now being monitored as part of a trial in a bid to thwart her tumour.
Ceri, a mother of four, said they were told ‘if it were left any longer, it would have been fatal’
Indeg Roberts was refused a face-to-face appointment because of Covid-19 restrictions and was prescribed a bottle of Calpol. Two years later, she was diagnosed with cancer
Indeg, who lives in Aberdaron, Wales, had a gruelling nine-hour surgery followed by two months of proton beam therapy at The Christie in Manchester
Indeg began suffering from headaches and vomiting in summer 2020, as well as a sore throat and cough.
Her mother Ceri Roberts, 42, said Indeg had appointments with a ‘handful of different doctors on multiple occasions’, all of which were over the phone due to Covid restrictions.
Each medic said it was likely that she had a virus and recommended Calpol.
Ms Roberts said: ‘Nothing fazed our little girl. She would vomit in the morning and go off to school for the day as if nothing had happened.
‘I searched online for the cause of Indeg’s symptoms and saw a page about brain tumours and I couldn’t shake the feeling that it was something more sinister than a virus.’
It was only when Indeg became unsteady on her feet that her parents were able to secure a face-to-face appointment in November 2020.
When Indeg eventually saw a doctor in-person, initial checks only showed that she was dehydrated and had low blood sugar.
But a CT scan revealed that she had a brain tumour, which medics diagnosed as a grade 3 anaplastic ependymoma.
Only 30 children are diagnosed with the cancer in the UK each year.
Headaches, feeling or being sick and a loss of balance are among the symptoms, along with seizures, a lack of energy, irritability and neck pain.
The family was taken in an ambulance to Alder Hey Hospital in Liverpool, where Indeg had emergency surgery to drain the build-up of fluid which was causing her symptoms.
Ms Roberts said: ‘I dropped to my knees, sobbing at the news.’
A CT scan revealed she had a grade three anaplastic ependymoma
Indeg’s family are desperately doing everything they can to stop the cancer from coming back after doctors warned them that there is a high chance it will return
Before her diagnosis, Indeg – who was six at the time – became unfazed by her worrying symptoms and was throwing up in the morning and then going to school like nothing had happened
Indeg is now part of a research trial to improve the outcome of patients with ependymoma as the family are campaigning alongside the charity Brain Tumour Research to increase research funding
She added: ‘We were told if it was left any longer it would have been fatal. Everything happened so quickly. From an appointment with our local GP, we were then miles away from home and Indeg was being prepared for a second surgery.’
Indeg then underwent a nine-hour operation to remove the tumour, followed by two months of proton beam therapy — a type of radiotherapy — at cancer centre The Christie in Manchester.
As a result, the family was forced to live away from their home for weeks at a time.
Ms Roberts said: ‘Although that was still miles away from our home in Wales, we had the option of going to Germany for the same treatment, which I understand some families are forced to do.
‘Indeg had the expected side effects such as hair loss. However, she was always on the go and wanted to be active. As soon as she would wake from the anaesthetic, she would be out of the hospital bed and in the playroom.’
Indeg is now part of a research trial to improve the outcome of patients with ependymoma.
The family are campaigning alongside the charity Brain Tumour Research to increase research funding. You can sign the petition here.
Ms Roberts said: ‘If we can throw everything at the cancer, it can hopefully stop it growing back and we know from her tumour type that a grade 3 has a high chance of recurrence.
‘As parents with a child living with brain cancer, we still have many unanswered questions such as: how long was Indeg’s tumour growing? How did it originate? What causes it to grow again?
‘I know that many other patients and families will have the same. If we are to understand this disease, we must fund the research to find the answers.’
Brain tumours kill more children and adults under 40 than any other cancer and the charity wants the Government to ring-fence increased investment in brain tumour research.
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