At the age of nine Giles, who lives in Gibraltar, was diagnosed with a diffuse astrocytoma after experiencing severe headaches and double vision. Existing medical conditions meant that treatment options for Giles, who is now 15, were restricted. His parents, Lynette and Ruben sought a second and third opinion to give their son the best chance of a future. Eventually he had an operation to remove the three tiny lesions on his brain. The teenager is now monitored with MRI scans to check for any re-growth.
Here is Giles’ story, as told by his mum, Lynette…
Like many other families navigating a brain tumour diagnosis, the last six years have seen much turbulence for our family. The worry, uncertainty, and complexity of what we are dealing with is still as present as it was in 2017 when Giles was diagnosed with his tumour.
Since he was born, Giles had always had underlying medical conditions including issues with his endocrine system which is responsible for organ function as well as growth and development. At six weeks old he had his first surgery for pyloric stenosis – a condition which blocks food from entering the small intestine.
Around a year before he was diagnosed with the tumours, he started to feel tired and complain of headaches. We were told he had an underactive thyroid which is something that was common in our family. He was given medication however this didn’t seem to make a difference and Giles’ symptoms worsened.
We were out shopping and I held up two necklaces asking Giles which he preferred as a present for his granny and when he replied ‘the middle one’ I knew something wasn’t right.
“He told me ‘Mum I can’t see properly’ and he had to hit his head against something to stop his double vision. At any age this isn’t right, let alone a nine-year-old.”
Yet another visit to the paediatrician saw the next series of tests and investigations and Giles was referred for an MRI scan in Spain.
Days later, in January 2017, we were told they had found a lesion in his brain and my world collapsed, the unwelcome icing on a cake of misfortune.
For the next six weeks Giles underwent more tests at Great Ormond Street Hospital (GOSH) in London, miles away from our home in Gibraltar. A biopsy was inconclusive until we had a healthcare team in the North of Spain look at the results and it was revealed the tumour was a diffuse astrocytoma. Due to where the pea-sized tumours were growing, they were deemed inoperable. He had a lumbar puncture to see if the tumour had spread and he had more MRI scans all under the care of GOSH.
It was a bizarre time, being away from our youngest son who was six at the time. Giles was a fully functioning child; he didn’t look or act poorly considering the news we had received.
From the moment we found out about the diagnosis, I went on autopilot to learn more about brain tumours. I needed to know everything including what could happen to my son. That’s when I came across Brain Tumour Research and discovered the gross underfunding which this disease has received historically.
My own research led me to seek a second and third opinion on exactly the type of tumour Giles had and how we could fight it.
Despite it confirming there were three lesions, the trip to a hospital in Spain and a video consultation with the neurosurgeon Conor Mallucci, from Alder Hey Hospital in Liverpool gave us hope of a future with Giles.
We felt well-informed to make the decision for Giles to undergo an operation to remove the tumours despite the risk of life-changing injuries due to their placement.
“Throughout the whole diagnosis, Giles understood he had something growing on his brain that shouldn’t be there and he wanted them gone.”
I wanted what Giles wanted and on 12 May 2017, he had surgery at a hospital in Northern Spain to remove the lesions. There was a sense of relief that they were gone.
Samples of his tumours were sent as far as Germany and America to help us understand its intricacy. We’ve been told it behaves like a grade 1 but it appears like a grade 2. We found ourselves living in limbo with a ‘wild type’ of tumour, meaning it is rare. The current offering of treatment for brain tumours would likely not stand up in a battle against any future mutations of the disease for Giles so surgery would be our only option.
We are now under the care of a hospital called Clinica Universidad de Navarra – based in Spain and Giles has check-up scans to monitor for any re-growth of the tumour.
He’s missed many days at school and has to inject himself daily with growth hormones to help his development. Although the tumour causes some loss of his peripheral vision, he is leading a ‘normal’ life for a 15 -year-old boy, which is something we didn’t know if we’d ever see.
I will continue to raise awareness and fight to find a cure for this disease which has opened my eyes to a community of young people and families going through something similar.
To date we have raised more than £15,000 for Brain Tumour Research by hosting an annual Wear A Hat Day in March. It’s always a great event to get people of any age involved whilst educating people about a disease where by one in three people know someone affected by a brain tumour.
Lynette Rodriguez
January 2023
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been inspired by Giles' story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure