Alex Costa-Veiga, was just 14 years old when he was diagnosed with a medulloblastoma in December 2023. His symptoms began over a year earlier, presenting as morning sickness, vomiting, and balance issues.
Initially suspected to be anxiety related to a school change, the symptoms persisted and were investigated through numerous GP visits, blood tests, and paediatric reviews, but none revealed the tumour that was growing silently in his brain.
Here is Alex’s story as told by his mum, Melanie…
Alex had always been healthy, but around 12 to 18 months before his diagnosis in 2023, he started being sick in the mornings before school. Sometimes he would actually throw up, but would then be completely fine for the rest of the day and full of energy. At first, I thought it might be anxiety. He had recently changed schools, and I just assumed he was having trouble adjusting.
I became concerned, so I took Alex to the GP multiple times, Alex had blood tests, ultrasounds, and saw paediatricians.
They were looking into possible gastrointestinal issues or food intolerances, but nothing came up. They were thorough, but nothing pointed to anything serious. Eventually, he was referred for an endoscopy, which he was due to have just before everything changed.
Just before Christmas in December 2023, Alex mentioned he was having double vision. My husband Nick and I thought he might need a new glasses prescription, so we took Alex to the optician. But the optician was concerned about what they saw and referred us straight to the eye clinic at Shrewsbury Hospital.
Because Shrewsbury doesn’t have a paediatric department, we were sent to Telford Hospital for a CT scan. At the time, I couldn’t understand why he needed a scan, I thought this was still just about his vision.
The consultant sat us down and said they had found a mass on his brain. As soon as I heard that my heart sank. I knew it wasn’t good.
They referred us straight to Birmingham Children’s Hospital, and Alex was blue-lighted by ambulance with a doctor. They told Nick not to follow, to go home, pack a bag, and meet us there.
That’s when I really started to panic. They clearly didn’t want Nick driving behind the ambulance. I knew it was serious.
When we got to Birmingham Children's Hospital, they took us straight to Ward 10, the neuro ward. They showed us the scan, and everything suddenly started to make sense. The double vision was because the mass was blocking fluid in his brain, squeezing his optic nerve and cerebellum, causing the double vision, the vomiting and the balance issues.
I felt completely numb, then the fear hit. As a mum, you always want to protect your child, but in that moment, I felt utterly helpless. I was horrified and in total shock.
Months earlier, Alex had mentioned he didn’t think he would be any good at an upcoming school ski trip because his balance was off, and we’d noticed he was bumping into things more often. Once, he fell and broke his glasses. We just put it down to clumsiness or typical teenage boy behaviour, but now we know why.
On 24 December, Alex had a temporary shunt fitted to relieve the pressure on his brain. We were told he would need surgery to remove the tumour, but they couldn't yet say if it was cancerous.
Everything happened so quickly, one moment we were getting ready for Christmas, and the next we were in a hospital preparing for brain surgery. It was a complete blur.
We told Alex enough so he would understand what was happening, but not so much that it would frighten him.
On 27 December, Alex had a 10-hour operation. Those were the longest 10 hours of our lives. When we finally got the call to come and see him and he gave us a thumbs-up, we were so relieved.
A few days later, we were told it was medulloblastoma, and that it had spread. But the doctors said it was a very treatable type of cancer that often responds well to treatment.
We were alarmed but felt a sense of relief knowing that something could be done and that Alex would recover.
Following the initial insertion of the temporary drain followed by the tumour removal surgery, Alex required a third brain operation on 9 January to insert an internal shunt that drains fluid into his stomach. Just three days later, it became clear that the shunt wasn’t functioning properly, prompting a fourth surgery for revision. When that also proved unsuccessful, he underwent a fifth procedure the very next day to fit a programmable shunt, marking his fifth and final brain surgery. As a family, we were in survival mode, simply getting through one day at a time.
Still, we were warned about posterior fossa syndrome, a neurological condition that can occur after surgery to remove tumours, such as medulloblastoma, in the posterior fossa region of the brain, which can result in problems with speech, balance, coordination and motor skills. It affected his speech and emotional responses, he could only say “yes” or “no,” and when he was told he’d had the surgery and the tumour removed, he started laughing instead of crying. His voice became robotic and slow, but gradually, over time, these symptoms subsided and his personality came back.
Alex now has left-sided weakness and needs a wheelchair to get around. He also wears an eye prism and will have surgery in early 2026 to correct his vision. His growth hormones were also damaged, and it is expected that he will need hormone replacement therapy.
Initially, the plan was to have proton therapy, but Alex wasn’t well enough. Instead, he underwent 60 sessions of radiotherapy with regular travel between Birmingham Children’s Hospital and Queen Elizabeth Hospital. After a six week break he had four cycles of high-dose chemotherapy and a placement of a feeding tube due to severe weight loss from treatment.
Alex finally came home in mid-March 2024, but treatment didn't finish until July and chemotherapy had taken a huge toll. Any little progress he made between treatments would be wiped out again. By his third cycle, he was so weak. It’s hard to explain how exhausting and brutal these treatments are, especially for children. There has to be a better way.
Alex missed his GCSEs in June 2025, and he had to go back a school year. He’s now working hard to catch up. It’s been tough, but he’s determined.
He was accepted into The Children’s Trust in Tadworth for an eight-week neuro-rehabilitation programme, which focused on physiotherapy, occupational therapy, and speech therapy.
He still has regular MRI scans, first every three months, now every four. His hair hasn’t grown back and he continues to face challenges every day, even though treatment has ended.
People assume he’s better now because he’s off treatment, but they don’t see the lasting effects, the things he’s still working so hard to recover from.
He misses football and PE. He was always academic and is very hard on himself for not being where he used to be. He just wants to feel normal again.
We’ve tried to turn our experience into something positive. I took part in a 10,000 steps challenge in February for Brain Tumour Research.
We donated Alex’s tumour to the tumour bank at Birmingham Children’s Hospital so researchers can learn from it. If it helps prevent one more child from going through this, it will be worth it.
Brain tumours are not as rare as people think. I had no idea. Around 12,000 people are diagnosed every year in the UK, but the funding for research is nowhere near enough. There are only three treatment options, surgery, chemotherapy, and radiotherapy, and they are far too harsh, especially for children.
Early diagnosis is key, and yet we were back and forth to our GP for 18 months. More needs to be done to help doctors spot these signs sooner. Families also need more support when going through this, there were so many questions I didn’t know to ask it was very overwhelming.
On my husband’s side, his father had a low-grade benign brain tumour, and his brother died of a glioblastoma. They say it’s not hereditary, but we need more research and more answers.
Alex is doing amazingly well, considering everything he’s been through. He’s brave, funny, and resilient. Yes, he’s different now, his speech is slower, and he’s in a wheelchair for now, but he’s still Alex.
There were some children on the ward who aren’t here anymore. Every time we have a tough day, we remind ourselves how lucky we are. We take the small wins, and we keep going.
Melanie Costa-Veiga
September 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Alex’s 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.
