A mum and dad from Westgate are urging other parents to look out for the tell-tale signs of eye cancer as part of Childhood Cancer Awareness Month, after their two-year-old daughter lost her eye due to retinoblastoma, a rare eye cancer that typically affects children under the age of six.

Parents Gina and Michael Hickson first spotted an unusual white glow in the pupil of Darcey-Rose’s eye on 9th February 2021.   Gina said, “We just saw a mass, like a cloud in her eye that would change shape depending on where her eye was directed. Initially we thought it was ice in her eye from a snowball fight. I googled it and it took me to the Childhood Eye Cancer Trust’s website – which I instantly dismissed. I was still concerned so I got Darcey to pose for a picture and sent it to the GP straight away.”

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.

Darcey-Rose with a white glow in her eye

Gina explained, “She had a slight lazy eye, but I put it to her vision tracking. I don’t even think I mentioned it to anyone.”

Gina said, “The doctor referred us to ophthalmology. There wasn’t a sense of urgency or worry. However I made sure I didn’t tell anyone what I’d seen and avoided telling my best friend as I knew she would tell me it’s sinister and I was actively avoiding anything that could suggest it was. I was genuinely concerned she would need glasses, which is so, so silly; I definitely had my head in the sand.”

Darcey-Rose had a vision screening to determine what was causing the unusual cloudiness in her eye.

Gina explained, “When looking through her right eye, Darcey was able to identify every animal and loved the game. When we covered the right you could immediately see she was blind in that eye. Her whole body language changed, she became withdrawn and she was trying to find a way to see again.”

Darecy smiling with her mum playing with bubbles

Gina added, “When she then had a scan, in the room there were posters on the wall with visuals on what to look out for, and how different eye conditions are seen on the screen. I found the cancer image and just held my breath. The right eye on the scan was clear and the left eye had a huge black mass. When we left the room a woman came and gave Darcey a toy; I looked at Michael and told him to prepare himself as Darcey’s got cancer. We went into the room to be told she “potentially has a rare eye cancer but they can’t diagnose as only the specialists can”.

Gina explained, “We broke down. Michael was playing with her on the floor, I was sick in the corner. Our world fell apart. Everything stood still but was also blurry around us”.

Darcey smiling with a dog

On the 19th February, Darcey-Rose attended Moorfield’s Eye Hospital, where retinoblastoma was confirmed. She then began the first out of six rounds of chemotherapy on the 1st March 2021 at Great Ormond Street Hospital before going into remission.

Gina explained, “Covid meant I had to drive my baby to London alone and do everything on my own. She didn’t get to have her dad and it was just us, the amazing nurses and the unknown. It was especially tough for Michael. He wasn’t allowed to support his wife or his daughter and had to have lots of extra shifts. He was given the news his daughter had cancer, and then because of our circumstances outside of the diagnosis he had to work harder to support us and due to the pandemic, he wasn’t allowed physically to support us or her during treatment.”

In September 2021 she needed laser and cryotherapy treatments, and in January 2022 it was decided she needed to restart chemotherapy.

Darcey-Rose in a hospital bed drinking milk

Gina said, “It was devastating to watch her go back through it 11 months later. Before the chemotherapy started we just cuddled in bed and I watched her breathe.”

On the 23rd March 2022, the family were given the news that she had gone into remission.

Gina explained, “We had a 4-6 weeks wait until the next check to see if the cancer had gone, and even then it would still be frequently monitored. But for that day, she was in remission again, she had regained more sight, she was safe. And now mummy and daddy could breathe for a little moment. Darcey has always responded unusually to all of her treatment. It’s a running theme in conversation that the “less expected side effects and reactions” aren’t less expected. And the usual isn’t something we see.”

Gina said, “On the 15th June 2022 we were told Darcey-Rose could either have chemotherapy injections in her eye or have her eye removed, as they had found more cancer in her eye. We did consider both options and as the direct injections would be done under anaesthetic,  she wouldn’t know any different to her normal treatment. So we cancelled our mini break to Scotland, crashed Darcey’s holiday with her grandparents at the caravan, and just tried to forget in-between consultations.”

“We booked in the chemotherapy for the 29th June. Her vision was better and worth fighting to save. She was incredible, she went down happy and we went off to the cafe for a coffee, expecting it to go well. But after 20 minutes my phone rang, and we were told to come back. When I say we ran, we sprinted.”

Darecy-Rose playing on an iPad in a hospital

Gina explained, “Her tumour had spread around the retina, the chemotherapy wasn’t ideal choice anymore. When they said they were going to have to remove her eye, and the choice was taken, I felt pure fear. The scariest part for me was explaining to her that her needed to have the operation – I was scared she would be scared. The play specialists had props and toys to explain how she was poorly like this Dino was poorly. So to stop her body being poorly we were going to take her poorly eye and give her a special one to make her better. We answered her questions and she breezed through it.”

Gina added, “The operation went really well. The clinician fitted a prosthetic eye. Darcey-Rose did really well and understood why she needed a special eye because of her poorly one.”

Gina said, “She is just the funniest, sass pot I’ve ever met. She makes me laugh every day. She’s so clever, and inquisitive. She made every trip easier with her sheer zest for life. She loves sports and also horse riding, despite only having vision in one eye”.

Gina said, “The Childhood Eye Cancer Trust has been amazing support throughout all of this time. Our support worker is always checking in on us and sorted out a few grants for us which have been invaluable. We were not entitled to much financial support. We couldn’t take furlough as key workers in the pandemic, and we were not entitled to benefit support either so it really did financially become quite tough. I remember one point having the petrol station phoning to let us know the petrol was being delivered when there was a shortage, as they used to open one pump for us and let us fill up so we could get to London for appointments.”

Darcey-Rose smiling with her parents

Gina added, “The play specialists both at Great Ormond Street Hospital and at the Royal London Hospital have been our guardian angels. We learnt how to access dolls, medical play, distraction play, had normality, and built relationships. And most importantly, she learnt about the next stages in her treatment and reducing procedural anxiety.”

Gina will be running the London Marathon in October to raise funds for the Childhood Eye Cancer Trust. Gina said, “I am very excited to get to run the London Marathon. It’s nice to get out, but training has been hard.”

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 other certain lighting conditions 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, such as in Darcey-Rose’s case, a child has to have an eye removed as part of their treatment.”

Darcey smiling with two princesses

Richard adds, “We are extremely grateful that in Darcey-Rose’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 support@chect.org.uk and they will provide you with information to take along to your appointment”.

For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.  

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  1. 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.
  1. 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.
  2. 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.
  3. CHECT has been a registered charity since 1987 and was formerly known as the Retinoblastoma Society.
  4. 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.
  5. September is Childhood Cancer Awareness Month.

Media enquiries:

For all media enquiries please contact:

Isabella Greenwood (Communications Manager)

Email: isabella.greenwood@chect.org.uk