A mum from London is urging other parents to look out for the tell-tale signs of eye cancer this Childhood Cancer Awareness Month after her three-year-old daughter, Jessy, was diagnosed with retinoblastoma – a rare eye cancer that typically affects children under the age of six.
Jessy’s mum, Lisa, said, “Jessy’s first complaint was in November 2023, just before she turned three – she had a red eye while being poorly, but this cleared up with antibiotics. In December 2023, she began to complain about the light hurting her eye and said her eye hurt. I immediately took her to urgent care. A referral was made to the eye clinic, but she also had tonsillitis, so that seemed to be what the doctor was concerned about treating.”
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.
Lisa said, “Eventually, the week before Christmas 2023, we received an appointment from the eye clinic. This was set for 20 March 2024, but I knew this wasn’t good enough. Over Christmas, Jessy’s pupil dilated and didn’t return to normal, and her iris began to go dark.”
Lisa called an optician in the New Year to request a second opinion before calling the eye clinic and asking to be seen sooner.
Lisa said, “We saw the optician on 12 January 2024, who made an urgent referral to the eye clinic at Queen Mary’s Hospital after she spotted something, but she was unsure what it could be. The doctor at the hospital was amazing. He told me he suspected either Coats disease or retinoblastoma and that someone from The Royal London Hospital would be calling me to see Jessy urgently. At this point, it didn’t seem real, and I don’t think I took it all in.”
Lisa added, “We were seen by Royal London on 17 January. Unfortunately, the ultrasound was inconclusive, so Jessy needed an MRI at GOSH. Jessy developed chickenpox, which slightly delayed things, and instead we saw them on 25 January. We were called on Zoom on 31 January and given the official diagnosis of retinoblastoma. We were told that, as Jessy had an advanced tumour (Grade E), eye removal – called an enucleation – was the only treatment. This seemed unreal, and we were shocked and scared to hear our baby girl had cancer.”
Lisa and her husband Bradley told immediate family and close friends first.
Lisa said, “We didn’t tell anyone else initially, because we just needed to get through the major operation. We also always updated one or two people and let them pass on updates and news.”
Lisa explained, “Jessy’s operation went very well, and she healed amazingly, with barely any bruising. The Clinical Nurse Specialist at the Royal London Hospital was amazing; we went to see her before the big operation, and she encouraged us to bring our son. She put our minds at rest, explained how the special prosthetic eye works, and showed us one. Jessy also had four rounds of preventative chemotherapy. Honestly, this felt harder than the operation. The cycles of drugs, managing the side effects, hospital admissions, and transfusions were a lot to handle.”
Lisa added, “Jessy is four now, and she is amazing. The year after chemotherapy, she had a lot of coughs and colds due to her immune system being weakened by chemotherapy. She starts school in September, and she can’t wait. Jessy thinks everyone has a special eye like her – she has adapted so well. She still isn’t comfortable when her eye is removed, but she is getting better.”
Lisa said, “Jessy is strong-willed and sassy; she loves dressing up as Disney princesses and loves Barbies. She loved the play staff at the hospitals, who kept her entertained during long chemotherapy days.”
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.
Lisa said, “Our CHECT support worker was amazing, a comforting voice at the end of the phone, checking in on us and seeing if we needed anything. She also put other charities in touch, who sent Jessy soft toys and books. CHECT also sent Jessy a Pip the Penguin toy – Pip has one removable eye and can be used by clinicians or family members to help explain and normalise the enucleation process for a child, siblings, and friends. Jessy had Nanny make Pip a party eye. Jessy also loved attending a CHECT family get-together day – meeting other families who truly understand what we’ve all been through.”
Lisa added, “My husband Bradley ran the London 2025 Marathon for CHECT. It’s vital that small charities receive as much funding as possible. Bradley enjoyed the day, the atmosphere was amazing and the crowds got him through especially on such a hot day.”
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: “Jessy’s story shows the importance of retinoblastoma awareness for health professionals. We are grateful that Jessy’s diagnosis was confirmed and that she was able to receive treatment, and we’re also thankful to Bradley for taking on the London Marathon in support of our charity. 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/signs-and-symptoms/
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