The family of a boy suffering from a rare brain tumor has claimed doctors dismissed his cancer as migraines and told him to stop “using his phone”.
Oscar Fairs, from Benfleet in Essex, was an otherwise healthy teenager.
But in 2022, the 14-year-old suddenly began experiencing panic attacks, severe headaches, and even heart palpitations.
His worried mother Natalie took him to the GP but claims she was told Oscar’s problems were mental health related and he was referred for counselling.
Over the course of eight months, other appointments attributed his symptoms to headaches and advised him to sit “in a dark room.”
Oscar Fairs, from Benfleet in Essex, was an otherwise healthy teenager. But in 2022, the 14-year-old suddenly began experiencing panic attacks, severe headaches, and even heart palpitations.
Ms Fairs said: “I need to pass this on to anyone who can help who specializes in ependymoma and can offer us treatment or surgery.” I am desperate to find a cure to give my son a life. ‘If there is anyone who can help save my son, please get in touch. My son is priceless’
Only after she took him to A&E did scans reveal he had a 7cm tumour, known as ependymoma, a rare cancer that affects the brain and spine.
Only after she took him to A&E did scans reveal he had a three-inch tumour, known as ependymoma, a rare cancer that affects the brain and spine.
Recalling Oscar’s terrifying experience, Ms Fairs said: “I think all children up to a certain age should have mandatory MRI scans to save more lives.”
‘Someone takes responsibility for the previous eight months in which Oscar was diagnosed with the tumor, as well as mental health and migraines.
‘I gave them five or six symptoms in May and they still haven’t done an examination.
‘The doctor who finally took him to their unit was speechless when I told him it had been eight months until we were finally seen for a brain MRI.
“They think the tumor could have been in his head for two years before.”
She added: “I have to be grateful that we have the NHS, where I would get the chemo and radio, as well as the pediatric surgeons, oncologists and radiologists, but it hurts that it took eight months as they are supposed to be the professionals”. .’
Fewer than 50 children in the UK and around 200 in the US develop ependymomas each year.
The survival rate is usually high: more than 60 percent of patients are still alive after five years.
They begin in the ependymal cells, which line the fluid-filled areas of the brain and spinal cord.
Symptoms of ependymoma include vomiting, seizures, and increased head circumference.
Some children may have symptoms for a few weeks or months before they are diagnosed with ependymoma. But they can often be confused with other less serious diseases.
Brain tumors are also the leading cause of cancer death in children.
Young people can generally only receive radiation therapy; Chemotherapy is rarely given, because it is often ineffective since few drugs can cross the protective blood-brain barrier.
It also carries the risk of side effects such as decreased bone marrow and cranial damage.
After Oscar began experiencing heart palpitations and numbness, the doctor asked him “if he was feeling anxious,” said Ms. Fairs, an emotional literacy support assistant.
“They told me if it happens again, to bring him back,” he added.
But when weeks later he suffered a panic attack while climbing the stairs, Doctors dismissed his concerns as a mental health issue, he said.
Ms Fairs said: “You can’t tell me, looking at a child when a mother tells you her heart is pumping out of her chest and she has weakness in her arm, that it is about mental health.”
It was only when she later took him to A&E at Southend Hospital and “told (the doctors) he was dying” that he was referred for scans.
She said: ‘The doctor asked Oscar to smile and one side of his face didn’t move. He was convinced it was a stroke. He was unaware of brain tumors.
‘He went for an MRI and they told us that we had saved our baby’s life.
His worried mother Natalie took him to the GP but claims she was told Oscar’s problems were mental health related and he was referred for counselling. Over the course of eight months, other appointments attributed his symptoms to headaches and advised him to sit “in a dark room.”
‘I’ll never forgive myself for telling him to lean the other way when he had that pain in his arm.
“But in the end no one listened to me.”
Despite seven operations to remove the tumor in his head, the family were told to prepare Oscar, who played football for West Ham U14, for palliative care.
However, thanks to chemotherapy and radiotherapy, the tumor shrank and he was allowed to participate in a clinical trial.
“A week into January they told us there was a contraction so they were going to open a trial and no one with ependymoma had had a trial like this before,” Ms Fairs said.
‘We burst into tears, running around the house with happiness and I asked the oncologist where this would leave us now.
Despite seven separate surgeries to remove the tumor and cancerous lumps on his head, the family were told to prepare Oscar, who played football for West Ham U14, for palliative care.
However, thanks to chemotherapy and radiotherapy, the tumor shrank and he was allowed to participate in a clinical trial.
He was put on trial and every fortnight he had a pic line imported into his body and every fortnight he was given chemotherapy through the port in his system for four months.
‘An MRI showed that there were no significant changes since January.
‘So we met with the radiotherapy surgeon again and now he is being given 54 volts of radiation for 30 days.
“We’re six weeks in and we’re still fighting.”
He added: ‘I need to tell anyone who can help who specializes in ependymoma and can offer us treatment or surgery.
‘I am desperate to find a cure to give my son a life.
‘If there is anyone who can help save my son, please get in touch. My son is priceless.’
Dr Karen Noble, director of research, policy and innovation at Brain Tumor Research, said: “There is a chronic lack of therapies and clinical trials available for children like Oscar.
‘There is no one-size-fits-all solution when it comes to treating brain tumors and our Center of Excellence in Plymouth continues to research ependymomas and their complexity.
‘It is vital that adequate research funding is put in place so parents like Natalie and Russell do not feel forced to look for hope abroad after exhausting what is currently available in the UK.
‘We should provide it here. “We are grateful to Natalie and her family for helping us raise vital awareness about brain tumors to help future generations who receive this devastating diagnosis.”
