Schoolgirl, 6, had brain cancer symptoms dismissed during phone appointments with GPs who recommended Calpol
The symptoms of brain cancer in a schoolgirl were dismissed for months as a virus that could be treated by GPs during telephone appointments with Calpol.
Indeg Glyn Roberts, from Rhoshirwaun in Wales, suffered from headaches and recurrent vomiting in the summer of 2020 – the early months of the pandemic.
Over the next few months, she had a series of telephone appointments with doctors at her local practice and was repeatedly told that her illness could be treated with over-the-counter medications.
The six-year-old was eventually given an in-person appointment and referred for testing when balance problems developed.
The results showed she had a rare brain cancer. After months of treatment, she is now being monitored as part of a trial to thwart her tumor.
Ceri, a mother of four, said they were told ‘if it had gone on any longer it would have been fatal’
Indeg Roberts was refused a face-to-face appointment due to Covid-19 restrictions and was prescribed a bottle of Calpol. Two years later she was diagnosed with cancer
ndeg, who lives in Aberdaron, Wales, underwent a grueling nine-hour operation, followed by two months of proton therapy at The Christie in Manchester
In the summer of 2020, Indeg suffered from headaches and vomiting, 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 by telephone due to Covid restrictions.
Every doctor said it was likely she had a virus and recommended Calpol.
Mrs Roberts said: ‘Nothing upset our little girl. She threw up in the morning and went to school all day as if nothing had happened.
‘I looked online for the cause of Indeg’s complaints and saw a page about brain tumors 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 arrange a personal appointment in November 2020.
When Indeg finally visited a doctor in person, initial checks revealed only that she was dehydrated and had low blood sugar.
But a CT scan revealed she had a brain tumor, which doctors diagnosed as a grade 3 anaplastic ependymoma.
Only 30 children are diagnosed with cancer in the UK every year.
Headache, nausea or vomiting, and loss of balance are among the symptoms, along with seizures, lack of energy, irritability, and neck pain.
The family were taken in an ambulance to Alder Hey Hospital in Liverpool, where Indeg had to undergo emergency surgery to drain the build-up of fluid that was causing her symptoms.
Mrs Roberts said: ‘I fell to my knees and sobbed at the news.’
A CT scan showed she had a grade three anaplastic ependymoma
Indeg’s family is desperately doing everything they can to prevent the cancer from coming back after doctors warned them there is a good chance it will come back
Before her diagnosis, Indeg – who was six at the time – became unfazed by her worrying symptoms, vomiting in the morning and then going to school as if nothing had happened.
Indeg is now part of a research project to improve outcomes for patients with ependymoma, as the family campaigns with the charity Brain Tumor Research to increase research funding
She added: ‘We were told that if it had been left any longer it would have been fatal. Everything happened so quickly. After an appointment with our local GP, we were miles away from home and Indeg was prepared for a second operation.’
Indeg then underwent a nine-hour operation to remove the tumor, followed by two months of proton therapy – a form of radiotherapy – at The Christie cancer center in Manchester.
As a result, the family was forced to live away from home for weeks.
Mrs 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 woke up from the anesthesia, she was out of the hospital bed and into the playroom.”
Indeg is now part of a research trial to improve the outcome of patients with ependymoma.
The family are campaigning with the charity Brain Tumor Research to increase research funding. You can sign the petition here.
Mrs Roberts said: ‘If we can throw everything at the cancer it can hopefully prevent the cancer from growing back and we know from her tumor type that grade 3 has a high chance of recurrence.
‘As parents of a child with brain cancer, we still have many unanswered questions, such as: how long did Indeg’s tumor grow? How did it begin? What makes it grow again?
‘I know many other patients and families will be feeling the same way. If we want to understand this disease, we must fund the research to find the answers.”
Brain tumors kill more children and adults under 40 than any other form of cancer, and the charity wants the government to ring-fence more investment in brain tumor research.