A dad from London is urging other parents to look out for the tell-tale signs of eye cancer this Rare Disease Day after his two-year-old daughter, Shuhd, was diagnosed with retinoblastoma, a rare eye cancer that typically affects children under the age of six.
Shuhd’s dad Faiz said, “We first noticed symptoms of retinoblastoma in Shuhd when she was around five weeks old. Shuhd’s mother had taken a picture of her with the flash on. We then noticed a glare or white reflection in her eyes. I had not heard of retinoblastoma before my daughter was diagnosed. It was completely unfamiliar to me, and I did not know anyone who had been diagnosed with this condition. It was a daunting experience, but learning more about it and receiving support has been crucial.”
The Childhood Eye Cancer Trust (CHECT) says that typical signs of retinoblastoma include a white glow in the eye which may only appear in certain lights, or in a photo, or a squint, as well as a change in the appearance of the eye or a swollen eye, although often only one sign or symptom is present.
Faiz said, “We were panicking and extremely worried. We didn’t sleep and felt utterly helpless at that point. The urgency and uncertainty of the situation were overwhelming, and our primary focus was on ensuring she received the best possible care as quickly as possible.”
Faiz added, “Initially, we consulted our local GP, who mentioned that a referral to a specialist was necessary. However, they advised that this process might take some time. I then took her to A&E at St. Mary’s Hospital. There, we were referred to Great Ormond Street Hospital due to the urgency of the situation. We received a call from Great Ormond Street Hospital the following day, informing us that they had referred us to the Royal London Hospital for an examination under general anaesthetic.”
Faiz said, “It wasn’t until she was eleven weeks old and after thorough examinations at the Royal London Hospital that the diagnosis was fully confirmed as bilateral retinoblastoma – cancer in both of her eyes. This period was incredibly challenging and filled with uncertainty, but receiving a definitive diagnosis was a crucial step in moving forward with her treatment.”
After Shuhd’s diagnosis was confirmed, treatment was discussed. Retinoblastoma can be present in one or both eyes.
Faiz said, “She had six cycles of chemotherapy, along with laser therapy and cryotherapy. During this treatment, she had an enucleation (removal) of the right eye while receiving chemotherapy. Each of these options carried its own set of challenges and implications, but they were all necessary steps to address her condition effectively and to keep her alive.”
Faiz added, “Shuhd continues to be monitored after receiving treatment. After the initial treatments that she received, there was a relapse of her tumours a few months later. However, after they were treated with laser therapy, we haven’t had any concerns during the last two or three visits. Despite this positive development, Shuhd will need to attend regular check-ups to monitor her condition in case of further relapse.”
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.
Faiz said, “I cannot express my gratitude enough for CHECT and for my CHECT support worker. The support from this team has been incredibly helpful during the most challenging time of my life. Every time we visit, our support worker is there to check on us and provide the most incredible emotional support. We always receive messages and emails from them to check in on us and see how we are doing and if we need any support. We are truly grateful for CHECT and the amazing work they are doing with families like mine.”
Richard Ashton, Chief Executive of CHECT said: “Retinoblastoma is rare, with around one baby or young child being diagnosed in the UK each week. Symptoms can be quite subtle, and children often seem well in themselves which can make it hard to recognise that anything is wrong. In just under half of all cases, a child must have an eye removed as part of their treatment.”
Richard added, “We are grateful Shuhd’s symptoms were recognised early, allowing her to receive treatment. If you are worried that a child you know may have retinoblastoma, please get them seen by a GP or optician ASAP. Contact the Childhood Eye Cancer Trust support team at support@chect.org.uk and they will provide you with information to take along to your appointment”.
Faiz said, “Shuhd is just like any other child. She loves to play, enjoys it when I read books to her, and adores walks in the park. She’s a very happy little girl who loves being out and about. She has an incredible zest for life, always moving around with joy, and everybody who meets her is charmed by her delightful personality.”
He added, “I found that it is far better to let those who love and care about you know what you’re going through. Their support can be invaluable during the most difficult times, providing comfort, strength, and encouragement when you need it most. It’s essential to lean on your loved ones, as they can offer the kind of emotional and practical support that makes a significant difference in navigating such challenges.”
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.