A mum and dad from Cheshire are urging other parents to look out for the tell-tale signs of eye cancer this Christmas after their two-year-old son, Thomas, was diagnosed with retinoblastoma, a rare eye cancer that typically affects children under the age of six.
Sarah and Ross said, “Our goddaughter’s brother, who was born the same year as Thomas, was diagnosed with retinoblastoma in May 2023. His family had been sharing details of his journey and raising awareness. As a family, we felt quite helpless but tried to offer whatever support we could.”
The family never imagined they’d find themselves in the same position months later. “We were sitting down for Sunday lunch on Bonfire Night and as Thomas gazed toward Sarah, Ross noticed a crescent-shaped reflection in Thomas’ left eye. Ross tried to photograph what he saw using his mobile phone camera without flash.”
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.
Sarah and Ross said, “In light of the awareness that we already had regarding retinoblastoma, we decided to take more photographs with various cameras, both with and without flash and in different settings. We noticed using a DSLR camera with flash that Thomas’ left eye presented a white glow at certain angles. When looking directly at the camera, both eyes had red-eye, but this looked slightly duller in his left eye. We feared that the signs pointed to retinoblastoma, but we kept thinking about how rare the condition was and that it was unlikely, particularly given our goddaughter’s brother’s recent diagnosis.”
After a sleepless night of worry, Sarah contacted an optician, but since the specialist was unavailable, an appointment was set for two days later. Still concerned, she visited another optician, who advised a GP visit. The GP reassured them after an eye exam, but Sarah remained uneasy.
Sarah and Ross said, “We just couldn’t shake the feeling that something just wasn’t quite right and on Tuesday evening when Sarah was settling Thomas to sleep, she took another photograph using her mobile phone with flash, which showed a white glow. Sarah decided to contact the optician who provisionally diagnosed our goddaughter’s brother. After reviewing the photographs, they arranged an urgent appointment for Thomas that afternoon. After spotting a large white mass in his left eye, the optician sent an urgent referral for Thomas to be assessed by the retinoblastoma team at Birmingham Women’s and Children’s Hospital. We will be forever grateful for the care and urgency that the optician’s team gave in Thomas’ case.”
Thomas was diagnosed on 10 November 2023 with Grade D retinoblastoma in his left eye.
Sarah and Ross said, “The hospital team delivered the news in a sensitive and caring manner. However, hearing that our son had cancer was devastating. Although we had our suspicions, nothing really prepared us, and we felt numb and overwhelmed. To be totally honest we also felt scared and angry, particularly when we began to discuss Thomas’ treatment plan. The team shared that the aim of any treatment was to get rid of the cancer and to try to preserve the sight in Thomas’ eye, with the least possible side effects, both in the short and long term.”
Sarah and Ross added, “Telling our loved ones was very difficult, we tried to have those discussions in person but Sarah’s family lives down south, so those conversations happened over the phone. We had so many questions and fears and we knew that family and friends shared these too as we’d been in the unique position of seeing the situation from both sides. Telling Thomas’ sister Evelyn was hard, she was five at the time. She understood that Thomas had a poorly eye and a lump had formed which required special medicine to help make it go away. We told her the special medicine had to go into his body through the central line. She was so brave about it all, we just tried to answer her questions in an honest and age-appropriate way. We were blessed to have an amazing support network, family, friends, parents of children in our daughter’s class and work colleagues, their acts of love and kindness meant so much to us.”
Thomas underwent four rounds of systemic chemotherapy and three rounds of chemotherapy injections directly into his eye, as well as cryotherapy and laser.
Sarah and Ross said, “Treatment started mid-November, Thomas had his central line inserted on Ross’ birthday. Christmas was around the corner, but it felt like a burden rather than something to celebrate. Before Thomas’ diagnosis, we arranged to spend the festive period with Sarah’s family, staying in converted barns. The medical team encouraged us to go, if Thomas was well enough, and ensured we had a referral for the local oncology department in case of emergency. As difficult as it was for us as parents, it was important to us that Thomas and Evelyn had as near-to-normal a Christmas as possible. Having that to focus on was probably a blessing in disguise and thankfully we were able to all enjoy special time with family.”
The parents added, “Thomas was very poorly at times, particularly during the systemic chemotherapy which lowered his immunity, having to have many hospital visits and admissions. Thomas has understandably found the process difficult and sometimes even basic observations have been too much to bear. The distress and upset he has displayed at such a young age has been very hard to witness. Despite it all Thomas has kept his playful, gorgeous and mischievous little personality shining for all to see because he’s just absolutely ace.”
Thomas continues to visit Birmingham monthly for observations and laser treatment.
Sarah and Ross said, “Thomas hasn’t had an easy time since his diagnosis and his treatment isn’t over yet, but he has overcome many challenges, and he continues to smile his perfect cheeky smile. Thomas is attending preschool and is hitting all milestones. So far, it is understood that Thomas’ vision has been impaired only slightly and it’s hoped that the patching therapy that he’s currently undergoing will help to improve this.”
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 a flash photo or in certain light, and a squint.
The parents said, “Our Childhood Eye Cancer Trust Support Worker has been an amazing support. She wrote an employment support letter explaining how retinoblastoma is rare and a very complicated cancer which is hard to predict, hence the regular monitoring and treatments of children under anaesthetic. Each child has their own treatment pathway which is dictated from appointment to appointment. This can be very difficult for families and future planning – getting back to work can require some flexibility and understanding of this complexity. This really helped Sarah to feel less guilty about the lengthy absence and lack of clarity she was able to provide to her employer. She also supported Sarah emotionally, with chats in person when Thomas had examinations under anaesthetic, but also with telephone calls in between. The guides, resources and real-life stories of families affected by retinoblastoma which are available through CHECT continue to be an invaluable source of information for us.”
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 that in Thomas’ 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”.
Sarah and Ross said, “Thomas loves being outside, he likes to whizz around on his bike or in his police patrol car. Thomas likes to explore, he is happy to go on adventures with his family, taking in all the sights and sounds of nature. Thomas was well supported by amazing play therapists, with one giving him his treasured ‘Chemo Duck’ who has attended every hospital visit since! Stickers always helped, and strangely he enjoyed role-playing doctors, even attending some appointments dressed as ‘Dr Tom’. His sister, Evelyn, was very supportive and tried hard to make Thomas smile during difficult times. Evelyn loved to visit Thomas in the hospital and would often bring a new toy for him to play with or a special drawing for him to put on the wall. She gave Thomas her very best cuddles and kisses. Thomas has faced his journey with so much strength and bravery, he’s an example to all around him. When things feel tough, we often say to ourselves ‘Be more Tom’. We are so proud of Thomas and the strength he has shown.”
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.
To make a donation to CHECT, visit our website or get in touch with our fundraising team.