A mum from County Caven is urging other parents to look out for the tell-tale signs of eye cancer this Childhood Cancer Awareness Month, after her five-year-old daughter Rachel was diagnosed with retinoblastoma, a rare eye cancer that typically affects children under the age of six.
Geraldine and her family had never imagined the journey they would embark on following a routine school eye check. “I had never heard of retinoblastoma before,” says Geraldine. “The school noticed that Rachel might need glasses because her sibling wore them, so she was referred for a further eye appointment. It wasn’t until months later, on October 12th, 2022, that our lives changed forever.”
During the eye appointment, after Rachel’s pupils were dilated, the tumor was discovered. “Up until that point, there was nothing different about the appearance of Rachel’s eye,” Geraldine recalls. “Her appointment was in a hospital, and within minutes, a consultant was in the room. I was alone when I was informed that a tumor had been found behind Rachel’s right eye. I was told to go home and pack, and the next day we were in Children’s Health Ireland in Temple Street, where Rachel underwent an eye and brain MRI. We were in such shock; our family was changed forever in a split second. Thankfully, the cancer was contained.”
Geraldine adds, “I was told about intra-arterial chemotherapy (IAC) and chemo injections in Temple Street, but I was informed that they couldn’t be done in Ireland, and it would be the best treatment for Rachel. I traveled on my own with Rachel over a period of 22 months, as my husband stayed at home to mind our two other kids and the family farm.”
The news that Rachel would need to travel to the UK for treatment was an additional shock for the family. “Six days later, we were in Birmingham Children’s Hospital, where we met the specialist retinoblastoma team. We were very lucky to be supported by The Gavin Glynn Foundation, who help families travel abroad for treatment. They supported us from day one, and our community raised €92,000 for the foundation.”
During their time in Birmingham, Geraldine also connected with a support worker from the Childhood Eye Cancer Trust (CHECT). “The support worker was always there for a chat and to offer support in any way she could. She told me about Daisy Lodge in Co. Down, which offers family breaks for children with cancer, and we enjoyed a stay there this year.”
Geraldine also found support from the Irish Cancer Society. “The Irish Cancer Society was very good, and I rang their helpline for support in the days after we got the devastating news.”
Despite the challenges, Rachel responded well to all her treatment. “Rachel’s eye was saved but she does have vision loss in that eye. Her vision loss has not affected her as she has excellent vision in the other eye,” Geraldine explains. “Rachel is aged seven now in great form, finished all her treatment, and was discharged from the UK in August. She will have her check-ups in Dublin now. Rachel is a loving, caring girl, and she’s full of fun. She liked the VIP treatment she received while flying over and back to England. We took 44 flights in total, and the Aer Lingus crew were amazing, fast-tracking Rachel through the airport.”
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 added, “We are grateful that in Rachel’s case, her symptoms were recognised during her eye examination so that she could receive treatment. If you are worried that a child you know may have retinoblastoma, please get them seen by a GP or optician 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”.
Geraldine adds, “We will not miss all the travelling. We will be forever grateful to the amazing retinoblastoma team in Birmingham.”
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.
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