Two parents from Putney are urging other parents to look out for the tell-tale signs of eye cancer this Rare Disease Day, after their fourteen-month-year-old daughter was diagnosed with retinoblastoma, a rare eye cancer that typically affects children under the age of six.
Parents Rebecca and Charlotte Palul first spotted an unusual eye movement in their daughter Isla’s eye over Christmas 2020.
Rebecca said, “I remember playing with Isla on the floor, and her looking down at a toy then looking up at me. When she looked up, her right eye whizzed out to the side and back again as if it couldn’t focus. We also noticed her iris would sometimes wobble. Both happened only a few times, they were quite subtle things. We assumed she had a lazy eye, and perhaps needed glasses. I remember not feeling very worried about it.”
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.
Rebecca added, “Between Christmas and New Year, we phoned the GP. It was during lockdown, so we had a phone appointment. We told the GP what we’d seen Isla’s eye doing. I remember the GP saying that it sounded like something might not be quite right, and she would refer us to the Paediatric Clinic at St George’s Hospital in Tooting.”.
Rebecca explained, “Because of lockdown, Charlotte wasn’t allowed in, so she waited outside for us during her in-person appointment. The Doctor performed a red reflux test and noticed that while her left eye appeared normal, her right eye did not. The Doctor said she would refer us to Moorfields, who run a clinic once a week at St George’s. She also said she would book Isla an MRI appointment. On the way home I remember us discussing Isla having an MRI and being really worried about her having a general anaesthetic, which looking back, shows how little I was prepared for what was to come.”
It was at this point that Isla’s parents googled her symptoms.
Rebecca said, “Retinoblastoma came up as a possible option, but I remember us both thinking that was the worst it could possibly be, so surely it wouldn’t be that. Perhaps this was us in denial.”.
Rebecca explained, “We went to the appointment at the Moorfields Clinic at St George’s. I still thought it could just be that Isla needed glasses. Charlotte had to wait outside in the car, so Isla and I went in on our own. It was difficult trying to take in everything, ask questions and look after Isla without Charlotte there. It was equally hard for Charlotte having to wait outside for news.”
“During these checks, the nurse put a pair of special sunglasses on Isla. The glasses only had one lens, on the left-hand side, so the nurse could only see what Isla’s right eye was doing. Isla was sitting on my knee facing away from me, but with her left eye covered, I could see that her right eye couldn’t focus on anything and was moving about all over the place. I remember being really shocked.”
The nurse dilated Isla’s eye before the doctor examined her eye.
Rebecca explained, “I remember her saying to me, “Unfortunately, there is a tumour in her right eye”, and being completely blindsided. I cried and Isla looked at me perfectly happy probably wondering what was going on. I remember asking the doctor how bad it was, but I don’t remember her reply.
“Charlotte was still outside in the car at this point. I started getting our things together to go out and find her, but then stopped and thought how can I go out and tell her that Isla has cancer? The doctor was very kind and said Charlotte could come in. Charlotte knew straightaway that something was wrong, and the doctor then explained what she’d seen.” Rebecca said, “We went home, calling our parents on the way to let them know. Those phone calls were very, very hard to make. We had so many questions and were so grateful that one of the Retinoblastoma Clinical Nurse Specialists from the Royal London rang us that night. She spent a long time answering our questions and said they would see us the following week. That week felt very long. We both had time off work, and it snowed so we spent lots of time together playing. We tried to make things as happy as possible for Isla, not knowing what might happen next.”
Six days later in January 2021, Isla’s retinoblastoma diagnosis was confirmed at the Royal London Hospital.
Rebecca said, “Isla had a stage D tumour in her right eye. The doctors explained that it was a smaller stage D, and because of this they hoped Isla’s eye could be saved. Instead of removing Isla’s eye, we decided systemic chemotherapy was the best route to take.”
Rebecca added, “Before they could start this Isla needed to have a lumbar puncture and an MRI to make sure the cancer hadn’t spread outside of her eye. She also had a port fitted into her chest to make it easier for the chemotherapy to be administered, and for regular blood samples to be taken. Isla and I went into Great Ormond Street six days after her diagnosis thinking she was just going to have some blood taken, and we ended up staying for four days! Charlotte again had to wait at home for updates.”
Isla had her first of six rounds of chemotherapy the day after her port was fitted and had regular examinations under anaesthetic at the Royal London Hospital. It was only when Isla’s parents took a photo outside of her with a flash that they spotted a white glow in her eye, the most common sign of retinoblastoma.
Rebecca said, “Chemotherapy was hard. Isla often got infections, so we had lots of stays in hospital for antibiotics, and she lost a lot of her hair. But the chemotherapy did its job”.
Rebecca added, “Isla battled through chemotherapy like a little trooper, and although she must have felt terrible, she kept smiling. She kept us all going! The chemotherapy did its job, and the tumour shrank and is now stable, which is amazing. There are some tiny tumour seeds which keep appearing and growing in Isla’s eye, so she has needed to have lots of cryotherapy to treat these. Isla has had periods of quite a few months where everything seems to be looking good. However, she’s also relapsed a few times and needed some more cryotherapy. She is currently still needing the cryotherapy – and although with each check-up we’re hopeful she won’t need any further treatment, there’s no way of knowing what might happen. The unknown is difficult.
Isla has reduced vision in her right eye, which wasn’t noticeable before she had her first eye check-up. Rebecca said, “Sometimes she struggles with walking down steps and her balance, but it is only when her left eye is patched to help with the vision in her right eye that you can really notice.”
Isla won a CHECT Champion award from the Childhood Eye Cancer Trust in 2022.
Rebecca explained, “Isla is so brave. She’s taken everything in her stride and has just kept going! She’s been through more in her first few years than anyone should have to. She is amazing. She is an inspiration to us every day. She loves Frozen, really enjoys swimming, and has just started gymnastics. She’s very busy! While she was going through chemotherapy, we discovered Tractor Ted. It became a regular fixture and is now her song of choice when she has her anaesthetics. The whole room of doctors end up singing along!
“Isla became a big sister to baby Theo last summer, and they adore each other. Isla is so caring with him and loves giving him kisses and cuddles.”
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 Isla’s case, her symptoms were recognised, 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 email@example.com and they will provide you with information to take along to your appointment”.
Rebecca said, “From the beginning of our journey CHECT have been there to support us. The support workers have helped us with practical things like applying for Isla’s blue badge, as well as signposting us to other organisations for a short break last year. They have also provided us with never-ending emotional support and advice.
“The staff at the Royal London have been incredible. Going there for Isla’s EUAs, although stressful, is strangely something we sort of look forward to now. Isla loves the nurses and the play worker; they are like family up us now. Our local hospital, the community nurses, and GOSH have also been amazing. We saw all of them regularly when Isla was having chemotherapy, and everyone made the journey that much easier. We say often, how grateful we are for the NHS, for CHECT, and for the people that support them.”
Rebecca added, “Our family and friends have been so supportive, not only to us, but also to the Childhood Eye Cancer Trust. Charlotte’s best friend Katie ran the distance from Grantham to GOSH. Charlotte’s Dad and his friends put on a golf day, and Isla’s nursery made and wore eye patches to raise money and awareness.”
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.
- Rare Disease Day is held on the 28 February 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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