A dad from Wales is urging other parents to look out for the tell-tale signs of eye cancer this World Retinoblastoma Awareness Week after his one-year-old son, Kooper, was diagnosed with retinoblastoma – a rare eye cancer that typically affects children under the age of six.
Kooper’s dad, Shane, said, “My partner first noticed a white glow in Kooper’s eye in low-lights conditions. I dismissed it at first and then noticed it myself a couple of days later – then kept seeing it. We Googled it and came across some advice that said to take a photo with the flash on, and the white glow in his eye was obvious then.”
The Childhood Eye Cancer Trust (CHECT) says typical signs of retinoblastoma include a white glow in the eye – which may only appear in certain lighting or in a photo – a squint, a change in the appearance of the eye, or a swollen eye. Often, only one sign or symptom is present. Although a photo may reveal a white glow, it doesn’t always – so CHECT recommends seeing a healthcare professional even if no glow appears in a photo, but another symptom is present.
Shane said, “It was a Friday when I noticed it and we said we would take him to the doctors first thing on Monday, which we did. The weekend was full of panic, Google searches, and worst-case scenarios – it was terrifying. The doctor referred us to the local hospital a couple of days later. It was another scary time, not knowing what was wrong. We’d read that there could be a few other reasons for the obscured red reflex in his eye, so we tried to hold onto hope for a different diagnosis.”
Shane added, “We didn’t have a great experience at the hospital. Kooper was only a year old and didn’t want anyone poking at him – he wouldn’t put his face in the machine to have his eye examined. After an ultrasound, they told us he had a lump in his eye and that ‘it could be serious, or it could be not as serious’, which wasn’t overly helpful. They said he would be referred to Birmingham, but didn’t mention the retinoblastoma team. I think the heartbreak really hit when we left the hospital and got to the car park – and realised what we were dealing with.”
The family attended an appointment at Birmingham Women and Children’s Hospital in December 2024.
Shane said, “I don’t think anything prepares you to hear that your one-year-old has cancer, may lose his eye, or may never see out of it again – it was a very emotional time. We both phoned our parents and used WhatsApp groups to tell the rest of the family. They already had an idea after our first hospital visit that it was likely retinoblastoma, so this was just confirmation. We used the information provided at the hospital to reassure them and explain the treatment plan. The doctor discussed different chemotherapy options – and also offered genetic testing, which we chose, as Kooper has an older brother and for Kooper’s own future and any children he might have.”
Kooper has now started chemotherapy for his retinoblastoma.
Shane explained, “Kooper has had four rounds of intra-arterial chemotherapy, laser therapy twice, and one round of chemotherapy injections. Results have been mixed – the first two intra-arterial rounds were somewhat effective, the third was very effective, but the fourth had little impact. They said at his last examination that the tumour looks smaller but the spores in his eye are growing, so hopefully the injection has had a positive effect on that.”
Shane added, “After treatment, when he is on steroids, Kooper becomes very distressed for four to five days which has been difficult. My partner and I both work, and we can’t send him to nursery when he’s like that, but he does like going on trips to the hospital.”
Shane said, “Kooper is our second child – he’s wild, and he has no fear. He’s recently started talking properly and putting sentences together. He gives his big brother a hard time and is always the loudest child in the room! He loves Moana and Tangled. Things that have helped him while at the hospital include socialising with other children on the ward, having his iPad – especially when he needs to lie down for six hours after treatment – and the amazing staff.”
The Childhood Eye Cancer Trust (CHECT) is urging parents and healthcare professionals to be aware of the most common possible symptoms of eye cancer – a white glow in the eye in a flash photo or in certain light, and a squint.
Shane said, “CHECT have been great, we had the initial grant which helped with travel costs etc. Our support worker has been to see us every time we’ve been to the hospital, which probably has had the biggest impact, having an impartial point of contact to speak to and get information from, she always engaged with us and with Kooper. She also helped us with the DLA forms and also signposted us to different services. I took on the ABP Newport 10K for CHECT in April, and I’m taking on the Chepstow 10K in August to raise money for the charity.”
Richard Ashton, Chief Executive of CHECT, said: “Retinoblastoma is rare, with around one baby or young child diagnosed in the UK each week. Symptoms can be subtle, and children often appear otherwise well – which makes it hard to recognise when something is wrong. In just under half of all cases, a child must have an eye removed as part of their treatment.”
Richard added: “We’re grateful that Kooper’s symptoms were recognised early, allowing him to receive treatment – and equally grateful for Shane’s wonderful fundraising. If you’re worried that a child you know may have retinoblastoma, please take them to a GP or optician as soon as possible. You can also contact the Childhood Eye Cancer Trust support team at support@chect.org.uk – they can provide information to take to your appointment.”
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.