Two parents from Yorkshire are urging other parents to look out for the tell-tale signs of eye cancer this World Retinoblastoma Awareness Week, after their two-year-old daughter was diagnosed with retinoblastoma, a rare eye cancer that typically affects children under the age of six.
Mum Ewelina Skwarlo first spotted an unusual white glow in her daughter Olivia’s eye in February 2022, just after her second birthday.
Ewelina said, “One day when she was watching TV, I noticed a strange glare in her right eye. I was observing her eye in different angles as the glare was not easily visible. Oliver Philips, Olivia’s Dad, was away for a few days in Scotland, so I was at home on my own with Olivia. I just decided to take few photos when the glare was more visible and sent it to Oliver to see what he thought.”
“I did not think it was anything serious, but my instinct was telling me to check. I decided to send the photos to Olivia’s Aunt Laura, who is an optometrist. In the meantime, I started to search on google ‘glare and reflection’ in the eye. I came across retinoblastoma and started to read about it. I started to panic that the white glow may be retinoblastoma, which I had never heard of before. Laura confirmed an appointment and we went to have it checked.”
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.
Ewelina said, “For a two-year-old, having an eye examination is very difficult, and Olivia had no plans on making it easy, but Laura did amazing job to distract Olivia as much as possible to be able to check her eye. When the examination was completed, Laura confirmed there was a big chance it was retinoblastoma and she referred us to hospital as soon as possible. We were devastated, but I was still hoping it may be something else.”
Laura Leafe, Olivia’s aunt, said, “I was already concerned due to the photograph Ewelina had sent me, but I was shocked to see what I suspected to be a retinoblastoma. After the shock, I was very thankful to be an optometrist and, in the position, to be able to help at one of the most stressful times of my family’s life. I am so glad Ewelina asked about the ‘reflection.’ If I hadn’t been in this profession the diagnosis may have come much later.”
Laura referred OIivia to Pinderfields Hospital in Wakefield, where she was seen a few days later.
Ewelina explained, “After the examination, a diagnosis of retinoblastoma was confirmed. The very same day we had a call from Birmingham Women’s and Children’s Hospital confirming our appointment with the retinoblastoma team. I remember these few days as very difficult, we were heartbroken, but we were trying to behave as normally as possible in front of Olivia as she was as happy as usual.”
“After checking Olivia’s eye in Pinderfields Hospital Eye Centre, we started to do more research and were getting to know more about retinoblastoma and possible ways of treating it. It was very hard for it to sink in, as Olivia was no different than just a happy jumpy girl playing around as usual. As Olivia was only two-years-old at the time, we did not notice anything other than a glare when looking deeply in her eye at a certain angle. When we were told that she couldn’t see from her right eye we were surprised as it was not noticeable at all.”
Ewelina added, “Over the past year, Olivia has been under general anaesthesia around twenty times for various different treatments. She’s undergone two MRI scans, four sessions of intra-arterial chemotherapy (up to June 2022), five rounds of dual-agent intravitreal chemotherapy (up to August 2022), routine check-ups at least once a month, cryotherapy and laser treatments. The main tumour shrank and is under control, but there are still some small parts to treat. We keep hoping that Olivia will be cancer free soon.”
Ewelina said that the diagnosis had an effect on how she saw the world.
Ewelina explained, “This experience changed each of us individually, but also had a massive effect on us as a family. Olivia being only two at the beginning of this journey was not really aware what was happening. Constant visits in hospital, seeing nurses and doctors, going through various procedures did have an impact on Olivia as child. We can tell she keeps changing as she is growing up and she understands more now what is happening and that we keep visiting doctors to treat her eye. For us as parents it is a constant worry about cancer cells being under control and if there is a chance to get rid of it totally. Our visits and stays in Children’s Oncology at Birmingham Women’s and Children’s Hospital for a few days had a massive impact on our perceptions of seeing the world around us. We started to appreciate more what we have in life as you never really know what it may bring. Going through this experience made us stronger as a family, as we know it is important to be strong for each other.”
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 Olivia’s case, her symptoms were recognised by her parents, her aunt and the hospital teams, and an urgent referral was made so that she could receive treatment. If you are worried that a child you know may have retinoblastoma, please get them seen by a health care 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”.
Ewelina said, “We cannot stress enough how important it is to observe your child and if there is something suspicious to have it checked straight away. We were in a good position having an optometrist in our family and having Olivia’s eye checked quickly, but we are aware that not many places are that easy to have a two-year-old’s eyes checked.”
Ewelina added, “The Childhood Eye Cancer Trust (CHECT) has been with us from day one when we went to Birmingham Women’s and Children’s Hospital, offering advice when needed and making sure we are supported. I remember at the start when we found out about Olivia having a cancer it was hard to process and we were overwhelmed, but it was good to know that CHECT is there, and we can contact them whenever we need to. They kept checking how we are doing mentally and financially, letting us know we are not alone in this situation. Reading other people stories who went through retinoblastoma on the CHECT website was also helpful to have a better understanding what we may go through and relate to some scenarios. Our support worker from CHECT is such a friendly, cheerful, and kind person, she kept in touch asking how we all are doing.”
“We would also like to take an opportunity to say massive THANK YOU to our employer NEXT Distribution for donating a large amount of money to support CHECT a few months ago.”
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.
NOTES TO EDITORS
- The Childhood Eye Cancer Trust (CHECT) is a UK charity dedicated to helping people affected by retinoblastoma. It:
- Provides ongoing support and information to families and individuals.
- Funds research into the prevention and treatment of retinoblastoma.
- Raises awareness among health professionals and the public.
- Influences policy to improve services for patients.
- Retinoblastoma is a rare and aggressive form of eye cancer that affects babies and young children, mainly under the age of six. Around 50 cases are diagnosed a year in the UK – or one child a week. It represents 3% of all childhood cancers and 10% of cancers in babies under the age of one in the UK.
- Around 98% of children survive retinoblastoma in the UK but early diagnosis is crucial in order to save a child’s eyes, sight and life. The most common symptoms are a white glow in a child’s eye or pupil in dim lighting or when a photo is taken using a flash, and a squint.
- CHECT has been a registered charity since 1987 and was formerly known as the Retinoblastoma Society.
- World Retinoblastoma Awareness Week is the 14 – 20 May 2023.
- For more information on CHECT or retinoblastoma (also known as Rb), including signs and symptoms, diagnosis and treatment options, please visit www.chect.org.uk.
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Isabella Greenwood (Communications Manager)
Email: isabella.greenwood@chect.org.uk