A mum is urging other parents to look out for the tell-tale signs of eye cancer this Childhood Cancer Awareness Month after her four-month-old son, Oliver, from Merseyside, was diagnosed with retinoblastoma – a rare eye cancer that typically affects children under the age of six.
Oliver’s mum, Olivia, said, “When Oliver was around four and a half months old, I noticed his right eye wasn’t focusing the same as his left. I only noticed this at certain times of the day; early in the morning not long after waking up or when he was starting to become tired.”
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 where flash has been used – a squint, a change in the appearance of the eye, or a swollen eye. Often, only one sign or symptom is present.
Olivia said, “At the start there wasn’t any glow in his eye, no turning of the eye. I’d always feared taking a picture of Oliver with the flash on because I didn’t want to hurt his eyes, so we never saw the glow from that (which I really kick myself over now). I would ask our family if they could notice anything, but nobody could. I would stare every day. To me, it felt like as the days were going on it was becoming more noticeable. In my head I honestly thought he may just need glasses.”
Olivia continued, “I rang my health visitor on 19 June 2025 and explained what I had noticed. She made an appointment to come out and have a look on 23 June; some days I wouldn’t notice anything. I really did start to feel like I was going insane or imagining things. When our health visitor came, she agreed that his eye wasn’t focusing like his left, but she wasn’t overly concerned. She put in a non-urgent referral into our local children’s hospital, Alder Hey.”
She said, “The following morning, I was giving Oliver a bottle. He was lying propped up facing upwards towards me in bed. He looked to his right towards the window when I saw the glow in his eye. I honestly thought I was going crazy. I tried taking as many pictures and videos as I could, screenshotting them. It was so hard trying to capture it in photos of a baby who had just turned five months old. I rang Tom, who was at work, and sent him the pictures. I showed my mum and we all agreed to ring the hospital.”
Olivia recalled, “I rang Alder Hey and explained we were on the waiting list for an appointment but hadn’t yet received one. I asked if I could send pictures of Oliver’s eye as we were worried by what I had seen that morning. At 12.30pm the same day they rang me back and just said, ‘the doctor has had a look at your pictures, and she has asked if you would be okay to bring him in today’. My heart was beating out of my chest.”
She continued, “We went in for a sight test. Oliver was doing so well. The ophthalmologist asked me to place my hand over Oliver’s right eye, and he was still following all of the lights, flashing cards and black and white lines perfectly. She then asked me to place my hand over his left eye. Suddenly, he was so distressed, shaking his head trying to move my hand. We went in for a further few tests, and I remember feeling increasingly sick. I looked at Tom and said, ‘I really think there is something wrong.’”
Olivia said, “The doctor came in and asked us to explain what we had been noticing with Oliver’s eye. After we had finished explaining, the doctor said, ‘I’m so sorry to be the one to tell you this, but your son has suspected retinoblastoma.’ Tom and I probably just stared, confused. She followed with, He has a cancerous tumour in his eye.’ The word cancer, how do you even wrap your head around it, especially for a baby. We were both crying hysterically. Straight away I honestly thought our son was going to die.”
She added, “The doctor explained it was treatable with chemotherapy but wasn’t too sure of all the treatment options. That’s when she told us we would be going to Birmingham Women’s and Children’s Hospital as they specialise in retinoblastoma. She told us she had only seen this four times in twelve years.”
Olivia said, “We didn’t sleep for four nights straight. We were Googling everything. This new word we had just learnt had literally taken over our happy little life. How did we go from our lovely baby bubble, newly engaged, to this – our lives really did fall apart. Luckily, the hospital was on hand to answer our questions.”
A week later, at Birmingham Women’s and Children’s Hospital, doctors confirmed Oliver had a large tumour in his right eye, with the possible start of a second tumour in his left eye, which was treated with laser at the same appointment.
Olivia explained, “The clinician felt that intra-arterial chemotherapy (chemotherapy directly to the eye) would be the best option, along with monthly laser treatments to his right eye. Things were moving so fast. It really was a lot to wrap our heads around.”
Olivia added, “Once retinoblastoma was confirmed, telling family and friends really was the hardest part for us. In some ways it felt more real saying it out loud, which made it even harder as we were still trying to understand it ourselves. I really did skirt around the word ‘cancer’; we both did, and to be honest we very rarely say it now as it’s still too upsetting. I was five months postpartum when we found out and I think navigating life with a newborn and getting used to parenthood are such huge changes anyway, but having this diagnosis as well really was difficult and definitely life-changing. We were lucky to have such a supportive network around us.”
Oliver went on to have four rounds of intra-arterial chemotherapy alongside ongoing laser treatment. His mum said, “The first round went amazingly, which the doctors had predicted. He then went on to have three more rounds after this, with much slower progress, which again we were told would happen. After his third round of chemotherapy, Oliver’s retina started to detach, which was then another worry, hoping each month it would slowly settle back down, which it did thankfully.”
She added, “After each round, Oliver really was just back to his happy little self after a few hours. You really wouldn’t think he was going through treatment. He was meeting his milestones earlier than normal; nothing was stopping him.”
A year on, Olivia said, “Oliver really is thriving. I think if we could have seen how he would be a whole year on we may have been more positive at the start. At his last appointment, the clinician explained there wasn’t much room left for any more laser, which was really positive. Because of the position of Oliver’s tumour, doctors feel he is more or less blind in his right eye but can’t be too sure until he’s slightly older. Honestly, even that doesn’t stop Oliver. He climbs on everything, he’s started running recently, he is obsessed with birds which he can spot from miles away.”
She added, “We can honestly say a year on from his diagnosis, life is as perfect as we’d planned from the second we found out we were pregnant. Oliver really is the funniest baby, he’s obsessed with flowers at the minute and smelling them, with the funniest little scrunch face when doing so. He loves shouting for his dad from the second he opens his eyes until he goes to sleep. He loves hide and seek pointing for us to go and hide repeatedly. Most of all, he is besotted with football, he even shouts “goallll” whilst punching his fist in the air when it is on the TV. Oliver really is just a happy little 18-month-old, living his life exactly how he should be. Nothing holds him back.”
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, which may appear in a flash photo or in certain lighting, and a squint.
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: “Oliver’s story shows the importance of retinoblastoma awareness among health professionals. We are grateful that Oliver’s diagnosis was confirmed and that he was able to receive treatment. If you’re worried that your child 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. The Child Cancer Smart campaign advises health professionals to refer to the local on-call paediatrician if a child has had three persistent symptoms, has visited their health professional three times or had unexplained symptoms for three weeks.”
Olivia said, “I don’t know how we would have got through any of this without Childhood Eye Cancer Trust (CHECT). What an amazing charity it is, especially our lovely support worker. Any questions we would feel maybe too silly to ask the doctors, she would be waiting for us to come back from seeing them and would sit down and speak to us for as long as we needed. She put us in touch with other services that benefited us as parents. Honestly, nothing is too much, a truly perfect team. We had the opportunity to visit Chester Zoo recently with the CHECT team. We met other amazing families; it’s refreshing to be able to talk to people who know exactly what you have been through. Without CHECT, we would never have had the chance to do that. We will be forever grateful.”
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.