A mum from Birmingham is urging other parents to look out for the tell-tale signs of eye cancer this Childhood Cancer Awareness Month, after her three-year-old daughter Esmae was diagnosed with retinoblastoma, a rare eye cancer that typically affects children under the age of six.
Elise first spotted that Esmae’s eye did not appear right while on holiday in July 2023.
Elise said, “We noticed that her iris changed colour and also looked a bit bloodshot on holiday. We just put it down to having chlorine in her eye. We came back from holiday and a few days later I had my 20-week pregnancy scan, so my mother-in-law and sister-in-law looked after Esmae. They mentioned when I was back that her eye looked strange. As I went to look, I just saw white cloudiness in her pupil.”
The Childhood Eye Cancer Trust (CHECT) says that typical signs of retinoblastoma include a white glow which may only appear in certain lights, or in a photo, 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.
Elise said, “I rang the opticians immediately and they saw Esmae the next day. They did an eye test and straight away they noticed Esmae could not see anything out of her right eye, which was very concerning They then explained that we needed to go to the A&E at the Birmingham and Midland Eye Centre, as they couldn’t see anything in the back of her eye. At this point Esmae’s dad and I were worried; we knew something was not right.”
Elise added, “When we went to the hospital, they were looking in Esmae’s right eye many times. Numerous doctors came in to have a look as well. One doctor did ask us if there was any eye cancer in the family. I think I knew then that it was really bad.”
Within two days, Esmae received her retinoblastoma diagnosis.
Elise said, “The hospital managed to get Esmae an appointment at the Birmingham Women’s and Children’s Hospital. Esmae was still in the recovery room there when they broke the news to us that she had retinoblastoma. They discussed the only treatment they could offer was an enucleation (a removal of the eye) as the tumour was so bad. The tumour was grade E and it made her completely blind in her right eye.”
Elise added, “We broke the news to both of our moms in the room where they told us. We wanted to do this as we were so upset and telling our moms would be so hard. So, we did this while Esmae was still in the recovery room. Our moms then told our family as Esmae’s dad Callum and I found it hard to break the news.”
Esmae had her eye removed on the 18th of July 2023 to stop the cancer from spreading. Esmae received high dose chemotherapy, a more intensive regime because of the cancer found in her optic nerve.
Elise said, “On the 3rd of August, the oncology doctors explained they found cancer cells in her optic nerve. Due to this, she had to have six rounds of intensive chemotherapy. Callum and I were heartbroken. They went through all the side effects of chemotherapy, and we were both so scared. Esmae was about to lose her hair and have an operation to insert her central line. They even mentioned she would have trouble having babies in the future, so they offered to have one of Esmae’s ovaries removed and freeze her eggs for when she is older. We just couldn’t believe our little girl would have to go through even more terrifying things. I had to explain everything to Esmae when we got home, as the next day Esmae had to get her central line inserted and begin chemotherapy on the 7th of August 2023. Esmae then went on to have an her ovary removed on the 31st of August just after her 4th birthday.”
Esmae, who has just turned five in August, has recovered well.
Elise said, “Esmae completed her treatment now and is doing so, so well after having her eye removed, central line put in, ovary removed, six rounds of intense chemotherapy, six lumbar punctures, six spinal chemotherapies, and many MRI scans. She has an MRI scan every three months for the first year to double-check everything. She is a happy, healthy, beautiful 5-year-old girl. She’s gone back into school full time now and enjoying the things she couldn’t do whilst having chemotherapy.”
Elise added, “I honestly think all of this has made Esmae more confident. She still struggles a little bit with taking her special artificial eye out, but I know she will get there soon. She is still doing things a 5-year-old should be doing and she enjoys life every day.”
Elise added, “CHECT has been amazing. Our CHECT support worker, especially, was always there playing with Esmae, making her feel comfortable at the hospital, and also always there for her dad and me. She would always ask how we were and if there was anything she could do to help us. She did a lot for us, and we couldn’t thank her enough. She also helped me through a tough time with work as they terminated my contract for being off with Esmae.”
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 a 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 added, “We are grateful that in Esmae’s case, her symptoms were recognised 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”.
Elise said, “Esmae has always been a funny, beautiful, happy, outgoing girl. She loves to go out with friends and family. She enjoys being spontaneous and going on trips with mommy and daddy and her little sister. Going through treatment was hard for Esmae. If some of her family members were poorly, she wouldn’t be allowed around them as her immune system was low due to having chemotherapy. We had to be very careful going out, with Esmae wearing a mask and sanitising her hands. Seeing her cousins and having a new little dog to look after and waiting for her sister to be born really helped get Esmae through this, as well as the love from myself and her dad during a really difficult time. Esmae also made it a lot easier to handle for me and her dad as she never complained and always did everything that was asked of her with her little cheesy smile on her face.”
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.