A mum from the Isle of Wight is urging other parents to look out for the tell-tale signs of eye cancer this World Retinoblastoma Awareness Week, after their five-year-old son Arlo was diagnosed with retinoblastoma, a rare eye cancer that typically affects children under the age of six.
Mum Megan spotted an unusual glow in her son Arlo’s eye in August 2023.
Megan said, “I had noticed something and the next day my sister had him for the day and she called me and said that his eye was completely white while playing in his cousin’s room directly in the sunlight. I was pregnant at the time and had my health visitor coming that week so I thought I would ask her advice and she said to take him straight to the hospital. Arlo had just turned five.”
The Childhood Eye Cancer Trust (CHECT) says that typical signs of retinoblastoma include a white glow which may only appear in certain lights 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.
Megan said, “We took Arlo to our local hospital on the Isle of Wight. He had all the routine eye tests and then he was taken for more tests; at this point we knew there was something wrong. The doctor told us there was a very large mass at the back of Arlo’s eye, he then called another doctor out of surgery to have a look at the photos. This doctor was from Moorfields Eye Hospital, he didn’t confirm to us that it was cancer, but he made the referral up to the Royal London Hospital.”
Arlo travelled from the Isle of Wight to the Royal London Hospital for assessment.
Megan said, “Arlo was put under general anaesthetic, and they checked both his eyes. While Arlo was still in recovery and waking up, the surgeon came into talk to us and told us that unfortunately Arlo did have retinoblastoma and that he wasn’t able to see out of his right eye and wouldn’t have been able to for some time. The tumour was so large, they needed to perform an enucleation – a removal of the eye, as this was the safest option.”
Megan added, “Being 36 weeks pregnant at the time I was extremely emotional; I rang my mum first and told her and then she said that she would tell the rest of the immediate family for us. My husband also made phone calls; he was my rock throughout it all.”
Within the same month as being diagnosed, Arlo had his eye removed.
Megan said, “On the 23 August 2023 Arlo had his enucleation and as the tumour was so large, he did need to have four rounds of chemotherapy. He started the chemotherapy on the 21 September (four days after his baby sister was born) in Southampton hospital.”
Megan added, “After Arlo’s operation he was so strong, he took it in his stride; he was using his hand a lot to feel things and to play with his brother, we made sure we got him lots of toys he could fiddle with, just while he was healing. The days after surgery, Arlo’s working eye was very swollen.”
“Arlo really struggled the most with his central line, he wasn’t a fan of letting anyone see it and the chemotherapy was really hard on him, he was very sick, but he took it in his stride. Arlo didn’t lose any of his hair. Watching him go through the chemotherapy for me was very hard; I wasn’t able to be at appointments with him as I had just had a baby so my husband took on all the appointments with Arlo.”
Arlo, who turns six in May, has recovered well.
Megan explains, “Arlo is doing so well, we are so incredibly proud of him. He’s cleaning his eye himself; we’ve had his moulding done for his prosthetic eye and he stayed awake for his post-op appointment! He’s back as school full time and is loving it. His big brother is his best friend and such a good big brother always making sure Arlo is comfortable and okay at school.”
Megan added, “Retinoblastoma has definitely made Arlo more clued up on his body, we tried to explain everything to him in such a way he could learn about his body. Arlo’s sight had been gone for a while before his eye was taken so he had already gotten used to the sight loss.”
Megan said, “The Childhood Eye Cancer Trust helped us with financial issues, support and connecting us with other parents of retinoblastoma patients. The Facebook group has been so helpful to ask other parents questions and our support worker is always just a message away for us. I can’t thank her enough for her support.”
The Childhood Eye Cancer Trust (CHECT) are urging parents and healthcare professionals to be aware of the most common possible symptoms of eye cancer – a white glow in the eye in flash photo or in certain light, and a squint.
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 diagnose. In just under half of all cases, a child must have an eye removed as part of their treatment.”
Richard adds, “We are grateful that in Arlo’s case, his symptoms were recognised so that he could 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”.
Megan said, “Arlo is a very bouncy, loud, loving and funny little boy. He’s always playing tricks, mostly on me, and his dad is the best climbing frame for Arlo. He loves music and having dance parties in the kitchen and is obsessed with Pokémon. In fact, Pokémon Go and his Nintendo Switch was his lifeline when he was at appointments. He used to sleep a lot at appointments as he used to tell us that ‘time goes quicker when you sleep’.”
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.