A mum from Norfolk is urging other parents to look out for the tell-tale signs of eye cancer this Rare Disease Day after her two-year-old son, Brody, was diagnosed with retinoblastoma – a rare eye cancer that typically affects children under the age of six.
Brody’s mum, Laura, said, “I noticed a white glow in Brody’s right eye when he came into the kitchen. It was November 2024, so the nights were dark and the lights in the house were on. When he came into the kitchen, for a split second, I saw a reflective glow in his eye. The first time I saw it, I thought perhaps I hadn’t seen it properly, or that it may just have been the kitchen lights catching his eye a certain way.”
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.
“I remember being extremely worried after the second time seeing it; I was very sure that I had seen a glow. Brody had a doctor’s appointment a couple of days later that week for something unrelated, and I asked the doctor to have a look in Brody’s right eye because I had seen this cloudy, reflective glow. The doctor looked in Brody’s eye and told me all was fine. I came away from the appointment feeling reassured that everything was ok. However, a day or two later, I saw the glow again.”
Laura added, “I remember Googling what causes a white glow in a child’s eye. The only information that came up was retinoblastoma. I was worried, so I got an urgent appointment at Specsavers. The very kind optician said to me that he could see what I was saying about a cloudy glow in Brody’s eye and said that he was going to do an urgent referral to the hospital. Within an hour of leaving the opticians, our local hospital called to arrange an appointment. This is when I really started to panic, and I just knew that this was serious. My family tried to keep a positive outlook, but I felt certain something was very wrong.”
Laura reflected, “We were due to wait a week for the hospital appointment, and I couldn’t rest. My husband and I decided to find a private paediatric ophthalmologist to see Brody sooner. We originally found a local specialist and booked an appointment, but the day before, the secretary contacted me and cancelled as the consultant was unwell.”
“We searched everywhere for an urgent private appointment, and on Wednesday 27 November 2024, we travelled to Manchester to see a paediatric ophthalmologist who, after doing an examination, said he was 99.9% sure Brody had retinoblastoma. We were absolutely devastated and gripped with fear as to what this meant for Brody and for us as a family.”
Laura said, “We were referred from the private ophthalmologist in Manchester to Birmingham Women’s and Children’s Hospital and were seen within a week. Brody had an examination under anaesthetic, and the consultant confirmed to us that Brody had unilateral retinoblastoma in his right eye. He had one large Grade D tumour. They were hopeful they could save his eye, but said vision in that eye was unlikely due to the tumour’s location. We were told they did not believe it had spread to the optic nerve, but Brody would need to have an MRI to confirm this.”
Laura said, “Before Brody was diagnosed, I honestly don’t think I had much awareness of retinoblastoma. I vaguely recall seeing something about a white glow in the eye on Facebook, but my knowledge was very limited.”
Laura added, “The whole situation, looking back now, is a bit of a blur. The shock, fear and panic we felt, whilst trying to maintain normality and balance for Brody and my other children, was extremely difficult. I cried a lot initially; my worst fear as a mother had come true, and the unknown around treatment was a lot to handle.”
“Thankfully, the Childhood Eye Cancer Trust and the doctors and staff at Birmingham Women’s and Children’s Hospital were so supportive and really helped to explain and describe what lay ahead. When I spoke with family and friends about our situation, everyone was so supportive. I initially only told family about it until I had managed to process it to some degree.”
Laura said, “After the consultant spoke with us about Brody’s diagnosis, we spoke with an oncologist who explained to us Brody’s treatment options. Chemotherapy was required, but how it was delivered – either systemic chemotherapy (where the drugs circulate through the whole body via the bloodstream) or intra-arterial chemotherapy (IAC) (where the drugs are delivered directly to the eye through an artery) – was something we could decide on. After discussion, we decided that IAC would be the best option for Brody and would minimise side effects.”
Laura added, “Brody had IAC. We were advised that this would likely be three rounds, but we were extremely lucky that his tumour responded so well to it that we only needed to have two rounds of IAC chemotherapy. He is now having laser therapy, which has been ongoing since after the first round of chemotherapy.”
Laura said, “Brody is now three and doing great; he is a full-of-beans wee boy. We still attend Birmingham Women’s and Children’s Hospital monthly for examinations under anaesthetic and laser treatment. As Brody has gotten older, he now knows what is happening when we go to Birmingham. He knows the drill, so to speak, and gets very distressed when he has to have eye drops to dilate his pupils and go down to theatre. However, once he is out of the hospital, he is back to his happy, bubbly self very quickly. Hopefully, as he gets older, he will better understand how important these visits are for him. I don’t think he will ever like it but will hopefully understand how necessary they are.”
Laura explained, “Brody is such an outgoing character; he is switched on, plays football at toddler football sessions, and attends a lovely playschool where he has some wonderful wee friends. Brody is close to his key worker at playschool, and she and the other staff there have been excellent during all of this. They have brought stuff round to our house to keep him entertained during hospital visits and have been so supportive.”
“I think what has helped Brody the most is keeping things as normal as possible. As a family, we have maintained our normal life as much as we can, and I truly believe that sense of normality has helped massively. As hard as it is initially, I do think this is so important.”
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: “Brody’s story shows the importance of retinoblastoma awareness among health professionals. We are grateful that Brody’s diagnosis was confirmed and that he was able to receive treatment. 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. 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.”
Laura said, “I reached out for support from the Childhood Eye Cancer Trust and my Support Worker contacted me. At this time, our fears and uncertainty of the unknown were at their greatest. She really helped to calm me and reassure me. I was crippled with fear at the very start of Brody’s journey, but having a reassuring, kind and compassionate voice of reason was an absolute blessing.”
“I could contact CHECT with any questions. I was provided with information, nurtured through my pain and upset, and spoken to about potential benefits that could help financially. Brody was sent packages with books and a cuddly toy explaining chemotherapy after a referral made by our Support Worker. The care from CHECT has been invaluable and is still invaluable now, one year into this journey.
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.