Summary
A mum is urging other parents to look out for the tell-tale signs of eye cancer this World Retinoblastoma Awareness Week after her three-year-old son, Isaac, from Dorset, was diagnosed with retinoblastoma – a rare eye cancer that typically affects children under the age of six
Isaac’s mum, Maria, said, “We noticed a glow in Isaac’s right eye, but only in certain lighting and at a certain angle. We first properly noticed it on his third birthday once everyone had gone. I spotted the glow and mentioned it to Isaac’s dad, who instantly knew which eye I was talking about. That’s when I realised it wasn’t just a trick of the lighting, but that something really was there.”
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 went straight onto the internet, and a quick Google made me realise it could be serious, so I booked an appointment at Specsavers for the next day, which was a Sunday, but I just didn’t want to wait. I wanted them to reassure me that it was all fine.”
Maria added, “Specsavers were great; they were so patient with Isaac, and the optometrist really was very thorough. He eventually said that he could see something, but that Isaac needed to be referred to the local eye unit to have a proper examination with diluted pupils. I asked him if he thought it was cancer and he said that I should try not to worry as it was super rare.”
Maria reflected, “I remember calling my GP every day that week to see whether he had already sent the referral. On Friday I received a phone call from my local hospital saying they had an appointment for that day. They did an eye test which Isaac passed without any problems. The consultant quickly checked his reflexes and said all seemed fine. I thought, okay, maybe everyone was right and I was too worried about it all. The consultant went quiet and asked his assistant for the ultrasound machine. He then said that he could definitely see a mass at the back of Isaac’s right eye and that he would like to refer him to the Royal London Hospital. I knew then that he thought it was retinoblastoma and I started crying and so did Isaac’s dad. Isaac was very confused and asked me why I was crying and I just didn’t know what to answer so I just hugged him. That afternoon was horrible for us; we just didn’t know what was going to happen. Would Isaac be okay, or will he die? It was just a horrible day.”
Maria added, “In the evening came some relief. A Clinical Nurse Specialist from the Royal London Hospital called us as she wanted to speak to us before the weekend. She explained a lot about retinoblastoma in general and answered so many of our questions. We got an appointment for the following Wednesday – that’s when Isaac was diagnosed with unilateral retinoblastoma, cancer in one eye.”
Maria said, “Telling our family and friends was hard, but the hardest part was explaining to Isaac’s brother Simeon what was happening. Simeon is older and had questions and worries. We valued the support we got a lot, but it was still hard trying to keep everyone informed.”
Maria explained, “We were given some treatment options, and we decided on systemic chemotherapy which we felt was the best option for Isaac at the time. One of the hardest things for me personally was the fitting of the central line and all the tests before treatment, maybe because everything was very unfamiliar to us.”
“Isaac then received six rounds of chemotherapy, which he took in his stride. I was absolutely amazed by him. He managed to form so many positive relationships in the hospitals we went to. Despite all the pain and scary things that he had to endure, he was always loving, caring, and made us all laugh sometimes.”
Maria added, “During chemotherapy we were in hospital a lot, he kept getting high temperatures. Isaac’s best medicine was definitely his brother, Simeon. We were so proud of both of them, Simeon was a star big brother who really cared for his brother a lot.”
“After chemo, Isaac was given the all-clear but with regular check-ups. We celebrated a happy Christmas without any hospital visits or overnight stays. Unfortunately, at the first check-up after Christmas they discovered some seeds (retinoblastoma ‘seeds’ are small pieces of the tumour that have broken off and dispersed in the eye), which they treated with cryotherapy (a freezing treatment which can be used on small retinoblastoma tumours). Several rounds later, they discovered a small relapse of Isaac’s tumour. We felt so deflated but decided to give it another try. So, we got booked in for plaque treatment. A plaque is a tiny piece of radioactive material which is attached to the outside lining of the eye to kill targeted cancerous cells inside. It was done at the Royal London Hospital, and we had to isolate for most of our stay. Isaac really struggled with the plaque treatment; he was in pain and very uncomfortable. He refused to open either of his eyes for two whole days, but we were hopeful the plaque would finish the tumour off for good. After the plaque, Isaac had to have some more cryotherapy. But luck was not on our side again, and only three months after the plaque, he relapsed again.”
“We decided that Isaac had endured enough and that we were not willing to take any more risks. We opted for an enucleation – removal of the eye. It was a hard pill to swallow after over a year of trying to save his eye which had very good vision, but we just wanted him to have some peace.
For the enucleation, we all went to London, and Simeon was prepared in a really lovely way about what would be happening with Isaac and his eye. The staff at the Royal London were truly fantastic, as was our support worker from the Childhood Eye Cancer Trust CHECT; they made it all that little bit easier to cope with.”
Maria said, “Isaac is now nearly five and a very happy, confident boy. Isaac loves everything about dinosaurs and monster trucks; he is very caring and has made some good friends. Sometimes he is a bit wary in new locations and realises that he does not have a full field of vision. But all in all, he manages amazingly. He is aware and understands what happened to him. He still talks about the playworker at the hospital who he calls his best friend. We are very open about it all and have been throughout the process. We found it the fairest to Isaac.”
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: “Isaac’s story shows the importance of retinoblastoma awareness among health professionals. We are grateful that Isaac’s diagnosis was confirmed and that he was able to receive treatment. If you’re worried that your child 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.”
Maria said, “Our support worker from CHECT was a big support throughout it all. Not only was she a great listener and so caring, but she also managed to organise some financial support for us, which we valued so much. We also got the little extras that were great for Isaac. Pip the Penguin – a teddy where you can remove the eye – which he received after his eye removal is still a much-loved toy at home. He likes to show others how he can remove its eye.”
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.