A mum from Cheshire is urging other parents to look out for the tell-tale signs of eye cancer this Childhood Cancer Awareness Month, after her six-month-old daughter was diagnosed with retinoblastoma, a rare eye cancer that typically affects children under the age of six.
Katherine O’Neill had noticed her newborn Amelia had been rubbing her left eye since being born in September 2020.
Katherine said, “I was first advised by the health visitor to put breast milk on it. There was a noticeable redness on the eyelid, but the eye appeared normal – she had passed her newborn sight check and I was advised the redness could be eczema.”
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. Another symptom can be a sore or red eye, without an infection.
Katherine said, “As Amelia was a bit premature (4 weeks), a twin (she has a twin brother Jake) and their birthweight had dropped, I’d had quite a lot of contact with the health visitors and had kept mentioning it. I was told to mention it at the 12-week check. As I wasn’t sure that the 12-week check was with a GP, I had called the GP the day before as the rubbing was getting worse. They requested I send some pictures and thought that the redness could be a birthmark. I didn’t think that this was the case, but I was told that we’d be seeing the GP the next day. It was a different GP to the one who had suggested it might be a birthmark, but she concurred and said she wasn’t concerned.”
Katherine added, “As the problem continued and it was becoming increasingly distressing for Amelia and for us trying the stop her rubbing, I contacted the GP again. They would only allow a phone call due to COVID-19 and it was the same GP as the 12-week check. She said that I should bathe her eye to see if that helped. She didn’t seem to be concerned and said that they weren’t seeing patients during lockdown. Amelia also had a squint in the same eye which I spoke about and the GP said that they wouldn’t do anything about it until Amelia was 12 months old.”
In March 2021 when Amelia was 6 months old, Amelia’s Grandma noticed something wasn’t right with Amelia’s eye during dinner.
Katherine said, “Amelia was in her highchair when my mum said, “What’s wrong with Amelia’s eye?”. I hadn’t noticed anything about the actual eye before, but under the spotlights in the kitchen, you could see that it was protruding and looked kind of ‘dead’.”
Katherine added, “We called the GP the next morning and they fitted us in that day. I had walked to the surgery with the twins not expecting to hear what I was told. The GP examined the eye and shined a light into it. She quickly told me that it could either be a cataract, or a very rare cancer called retinoblastoma, but she thought it was the latter. She gave me a leaflet and said she was referring us under the 2-week cancer rule. I was devastated – I didn’t call my family as I couldn’t break down yet as I had a half an hour’s walk home with the babies. Two ladies stopped me to make a fuss of the babies and I remember just not being there – It felt so surreal, and I couldn’t believe what I had been told.”
“I couldn’t bear the thought of waiting 2 weeks to be seen so I contacted my local independent optician, and he advised that I go and see him and if he was concerned, he’d refer us straight to my local hospital and we could expedite things that way which is what happened – we were seen at Leighton Hospital that evening. They were not able to confirm a diagnosis there and referred us to Manchester Children’s Hospital where we were seen a week later. Manchester confirmed that it was retinoblastoma and that Amelia had no sight in the left eye but that we needed to be seen by specialists at Birmingham Women’s & Children’s Hospital for further confirmation and assessment.”
Amelia was diagnosed with a Grade E tumour in her left eye (the largest tumour size).
Katherine explained, “The first initial suggestion was to remove the eye rather than trying to shrink the tumour, but a decision would be made after the team meeting with the oncologist. Later that day, we were brought to a meeting and the team had agreed that they would try with chemotherapy to see if they could save the eye.”
Katherine added, “One week after diagnosis, Amelia was admitted to Manchester Children’s Hospital to have her line fitted. The line was fitted in surgery in the afternoon and her first round of JOE Chemotherapy was administered to her through the night. I slept in the bed next to her, she was hooked up with wires, and it was awful to watch. The next morning, she looked very pale and as soon as she woke up, she vomited. It made her very sleepy and sick.”
Amelia had six rounds of chemotherapy at Manchester Children’s Hospital between March and August 2021.
Katherine explained, “The tumour shrunk but Birmingham Women’s & Children’s Hospital would laser it each time to prevent the recurrence. Unfortunately, the cancer started to grow again very quickly, and they needed to give chemo injections straight into the eye. She had four chemo injections but there were new areas of growth – even the consultants were surprised at how aggressive the cancer was. I took the decision there and then to have Amelia’s eye removed – she had been through enough and by then, we realised that her eye didn’t look like her eye anymore and as she couldn’t see out of it, at least if she had a prosthetic eye, the cancer would be removed.”
One week later, the family set off from visiting friends in London to get to Birmingham for 8am after being called in by the hospital.Katherine said, “We had Jake with us too and left at 4am to be there on time. They removed Amelia’s eye at approximately 6pm on 8 December 2021 in an almost three-hour operation. It was so awful taking her through to theatre, after everything she’d endured; I felt like she’d gone through it for nothing as she lost her eye in the end. I was so relieved to get her back in my arms afterwards and so grateful to the consultant. Unfortunately, when Amelia’s prosthetic eye was first fitted, her body rejected it and she had to have a fat graft.”
Katherine said, “Amelia is doing fantastically now. You really wouldn’t notice that she only has sight in one eye – she has just as much confidence as Jake, if not more. Amelia will be three in September. She still has to have check-ups in Birmingham every three months. She is a superstar. She has such a wonderful, feisty and kind personality. She is always keen to try new things and make new friends. She loves Peppa Pig, baking with Grandma, scooting to the park and helping in the kitchen.”
Katherine added, “What we have all found really helpful, is a local charity called The Joshua Tree where we spend a lot of time and they have offered support for all the family. We have met lots of people and children who have been affected by childhood cancer and even two children with the same condition.”
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, “If you are worried that a child you know may have retinoblastoma, please get them seen by a healthcare professional 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”.
Katherine said, “Our support worker from CHECT is always so lovely and supportive in the clinic. She makes sure that she spends time with each family to see if there is anything they need and any way that CHECT can help. She put us in touch with a charity that provided a tablet for Amelia to watch her favourite programs on when she has to attend clinic appointments which has been great. I know that if I needed any advice or support that I can contact CHECT.”
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.