A mum has appealed for help after her son tragically died from a brain tumour misdiagnosed as a lazy eye.
Holly Roberts’s son Larsen, from Nottingham in England, was “a very clever child” his mum said and was learning phonics and how to read.
Ms Roberts, who is campaigning with the UK’s Brain Tumour Research, said in March 2018 one day he didn’t want to read.
A teacher at his nursery suggested maybe she was pushing Larsen too hard but she “thought it was strange” since he seemed to enjoy it.
He began suffering conjunctivitis at age three and a half and Ms Roberts discovered he had no vision in his right eye.
“He was referred to an optometrist by our GP and they said he had a lazy eye,” she said.
“We were then referred to the orthoptics service, which had been commissioned into the community rather than being at hospital, so our appointment was at the optician’s.”
She said the appointment “was odd” and feared the worst. Unfortunately, her worst fears were later confirmed by an orthoptist in August who referred Larsen for a CT scan.
It was confirmed Larsen had an optic pathway glioma which is a type of brain tumour. An oncologist deemed it low-grade and the family were told to sit and wait. Surgery was also deemed too risky at the time.
But things got worse. In November 2018, an MRI showed it had grown, which doctors were not expecting. It was recommended Larsen be given 12 rounds of chemotherapy.
“He went into hospital for his chemo every Monday and he was such a good boy. I think I felt more grief over it than he did,” Ms Roberts said.
In February 2019, more scans showed the tumour had grown. He underwent a biopsy in May, which involved cutting into his skull but this found he never had an optic pathway glioma but instead a rare, high-grade medulloepithelioma which is far more aggressive.
“During that consultation, I broke down. I felt so betrayed, having been told repeatedly that Larsen’s tumour was low-grade and not suitable for surgical removal,” she said.
“His oncologist admitted that my ‘mother’s intuition’ had been right all along and that if they’d done what I asked of them, we’d be in a very different place.”
According to the Indian Journal of Ophthalmology, most patients with medulloepithelioma present between ages 2-10 with pain and loss of vision.
Surgeons went to work but had to remove Larsen's right eye. There was also the chance he would go completely blind.
The surgery was successful and he underwent recovery. Months later though, more tumours were discovered at the base of his spine.
One night in December 2019, Larsen began to have a seizure and was rushed to hospital.
“It was really violent. I just thought: ‘that’s it’. They managed to stabilise him on a life support machine and they took him for a CT scan. The next thing I remember is an on-call neurosurgeon came and told me that he wasn’t going to wake up,” Ms Roberts said.
He tragically died the next day. Larsen was just five years old.
His mum is now appealing for more funding for brain cancer research. Larsen’s medulloepithelioma is known as a rare type of tumour.
“Gradually, I’ve been able to channel some of my grief into raising awareness of the lack of options for brain tumour patients like Larsen. I supported the #BrainTumourPetition calling on the Government to stop the devastation caused by this horrendous disease,” Ms Roberts recently told Brain Tumour Research.
Ms Roberts said she has spoken with her local MP and the Secretary of State for Health and Social Care.
“I will continue to engage with her and other politicians to encourage them to address the injustices surrounding this disease,” she said.
“I can’t change what has happened but I am determined to influence what will happen.”
Australians are no stranger to brain cancer either. According to Cancer Australia, 1896 Australians have been diagnosed with brain cancer this year as of September. More than 1100 of them were men.
Between 2013 to 2017, it was deemed to have a survival rate of just 22 per cent.
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