How my son’s ‘bulging’ eyes turned out to be a brain tumour: Mum shares shock symptoms that left her 11-year-old blind

How my son's 'bulging' eyes turned out to be a brain tumour: Mum shares shock symptoms that left her 11-year-old blind

When Jack Eckworth’s eyes ‘started to wobble’, his parents never expected doctors to blame a brain tumour.

Yet that’s exactly what happened when she was just 14 months old.

More than a decade on, karate-loving Jack, now 11, is still fighting the slowly growing mass.

Jack, visually impaired by his optic nerve glioma, is currently enrolled in a ‘life-changing’ drug trial, which he has been taking since he was five.

His mother Miriam, from Basingstoke, praised the drug for giving him a ‘chance to live a relatively normal life’.

Jack Eckworth, from Hampshire, has been battling cancer for a decade after his parents noticed his eyes were twitching and took him to hospital when he was just 14 months old.

The now eleven-year-old was diagnosed with an optic nerve glioma, a type of brain tumor, and has been in and out of the hospital ever since.

Jack didn’t ‘get to be a kid’ growing up, as he was forced to undergo a gruesome bout of chemotherapy while his peers played.

Doctors are hoping that dabrafenib, the drug Jack is taking, will make his tumor go away.

They will monitor how the mass — located on the nerve that connects the eye to the brain — responds to treatment over the next few years.

Discussing her son’s battle, Miriam, 46, said: ‘It was hard for Jack and it was hard for us not to have him as a baby.’

But he said he has a good quality of life which will allow him to ’emotionally recover from his experience’.

Recalling his symptoms, his parents said they noticed his eyes ‘wobbly’.

Miriam and her husband Colin took Jack straight to the GP.

Jack was referred to specialists at London’s Great Ormond Street Hospital and underwent several rounds of chemotherapy.

Jack is quite visually impaired as a result of his brain tumor – he suffers from hydrocephalus, a build-up of fluid on the brain

He was referred to an eye clinic, where he was sent straight to Harlow’s Princess Alexandra Hospital for an MRI scan.

After an overnight stay in the hospital, doctors then diagnosed Jack with an optic nerve glioma.

Masses make up about 5 percent of all childhood brain tumors, the data suggest.

Early symptoms affect vision due to the location of the tumor inside the brain. Children with tumors may squirm, have double vision, blind spots, or tilt their heads. Others may get ‘sparkly eyes’ like Jack.

A week after his diagnosis, Jack was referred to specialists at Great Ormond Street Hospital. He underwent multiple rounds of chemo there.

Tests showed that it was stable after the first batch.

But after nine months, it continued to grow and Jack had to undergo more rounds of chemotherapy.

Jack’s parents say his quality of life hasn’t diminished despite battling cancer and being visually impaired – he enjoys various hobbies and even has a black belt in karate.

Jack is now in a drug trial with the anti-cancer drug dabrafenib, with his mother Miriam saying the treatment has given them more quality time as a family.

Miriam, who works as a canine behaviourist, said: ‘It’s been a very difficult time for the family.

‘Our daughter had also just been born, and we knew what chemotherapy would bring for Jack.

Doctors eventually found Jack’s tumor carried a mutation that made him eligible for dabrafenib, an experimental drug.

It works by targeting certain proteins created by genetic quirks that help the mass grow, effectively preventing it from increasing in size.

Jack responded well to treatment, which his mother described as ‘life-changing’.

Miriam said: ‘It has allowed Jack to live a relatively normal life.

‘We are grateful for research which means Jack can do many of the things 11-year-old boys do.’

However, her tumor does not hold her back.

He is almost a black belt in karate, plays the keyboard, likes to DJ and plays video games in his spare time. He also enjoys playing goal ball – a visually impaired sport.

His school is very supportive, he is learning Braille and they provide him with large print texts.

What is Optic Nerve Glioma? A slow-growing tumor that usually affects children

Optic nerve glioma, also known as optic pathway glioma (OPG), is a slow-growing tumor that usually affects children.

The tumor grows in or around the optic nerve, which connects the eye to the brain, and as it progresses, it puts pressure on the optic nerve, causing vision problems.

Three quarters of optic nerve glioma cases are diagnosed in children and adolescents rather than adults.

Optic nerve gliomas account for 5 percent of all childhood brain tumors.

What usually causes brain tumors is not known, but studies have shown that about 50 percent of optic nerve gliomas diagnosed in children and adolescents are linked to a genetic condition called neurofibromatosis 1 (NF1).

A blood test can confirm whether a patient has NF1. It can be inherited from parents but in about 50% of cases the child will be the first affected in the family.

What are the symptoms of optic nerve glioma?

Deterioration of vision making it more difficult to read Glaring eyes Double vision Blind spots Tilted head Stretching in front of the eyes

If the pressure on the head increases due to the size of the tumor, symptoms may include:

Nausea and vomiting Lethargy and irritability Headache

How is an optic nerve glioma treated and diagnosed?

Optic nerve glioma is usually diagnosed by CT and MRI scans, ocular inflammation evaluation, or endocrine evaluation.

Treatment may include chemotherapy aimed at shrinking and stabilizing the tumor, and radiotherapy which is usually given to patients after chemotherapy – except for those who test positive for NF1, where the risk of secondary tumors after radiotherapy is considered too high.

Surgery is another treatment option, however, is not always used for optic nerve gliomas due to the risk of damage to sensitive areas.


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