Frustratingly for Emma Copeland, 42, no one else seemed to be able to see the white glare in her baby daughter’s left eye, but it concerned her enough to make an appointment with her family GP.
The doctor did some tests and reassured her there was nothing to worry about, so Emma tried to push her worries to the back of her mind.
But several months later, in August this year, the staff at Elise’s nursery also noticed the white spot and so had Emma’s partner, Anthony Carroll, 37.
“I couldn’t stop thinking about this strange white glare,” said Emma, who works in TV production and lives in Ealing, West London. “I called the GP surgery and requested we get referred to Moorfields Eye Hospital in London, but they were taking so long to get back to us we emailed the hospital directly to get a private appointment.”
Aged 21 months, Elise was seen the following day and the consultants were very concerned. They told Emma and Anthony that Elise was completely blind in her left eye and that they were referring her to the Royal London Hospital for additional tests. They also told the worried parents that they should be prepared for a diagnosis of retinoblastoma.
Retinoblastoma is a rare and aggressive form of eye cancer that affects babies and young children, usually under the age of six. On average, around one child a week is diagnosed with the disease in the UK, and it can either affect one or both eyes. While retinoblastoma has one of the best survival rates of all the childhood cancers, with 98% of children surviving, early diagnosis is incredibly important.
Signs of retinoblastoma include a white glow in your child’s eye, a squint, a change in vision, no red eye in photographs or a change in iris colour, although these symptoms can be caused by other things.
“It was a shock to know your child is blind in one eye, but now we were worried it was something even more sinister,” says Anthony, a barrister’s clerk.
Elise underwent tests under general anaesthetic which confirmed that she had retinoblastoma. But even worse news was still to come. As well as a large tumour in her left eye, Elise had a smaller tumour in her right eye too, although it was not yet obstructing her vision.
While in some cases doctors are able to take out the affected eyeball to remove the cancer all at once and avoid the need for further treatment, the discovery that Elise had bilateral retinoblastoma meant this was ruled out. In her case, the second, smaller tumour would require chemotherapy.
The family and doctors agreed that Elise would go ahead with chemo and, after a lumbar puncture, bone marrow extraction and MRI scan to make sure the cancer hadn’t spread, in September she began six rounds of systemic chemotherapy – one every three weeks – on her tiny body. “It was so much for her,” says Emma. “She had a series of general anaesthetics for the tests and to get a Hickman line fitted. She would struggle and fight every time we put the mask on for the general anaesthetic. It was heartbreaking.”
The Hickman line connected to a vein in Elise’s chest to allow the doctors to take blood, give transfusions when necessary, and treat her with the chemotherapy drugs.
“Her first session was on September 5, which was also our son Raphael’s first day back at school,” says Emma. “So I did the school run as normal, then met Anthony and Elise at Great Ormond Street Hospital to start the treatment.”
There’s a long road ahead for Elise, who will be in treatment all through this Christmas until January next year.
The gruelling rounds of chemotherapy take six hours, which means after all the tests and preparation, little Elise is in hospital for the whole day.
“It’s really hard to keep her
still,” admits Emma. “She gets very restless and fidgety, especially as we’re on the children’s ward and there are lots of toys around.”
Understandably, the chemo has been hard on the toddler.
“She was sick after the first time and it has really affected her appetite,” says Emma. “She’s lost weight and has gone down a
Once the chemotherapy is complete, assuming it is successful, Elise will still need to be checked every six weeks to make sure no new tumours appear.
“The longer she goes with clear results, the more we can stretch out the gap between checks,” explains Anthony. “If she gets to six with no recurrence then she only needs to be checked every year.”
Elise’s retinoblastoma is genetic – the result of a mistake in her genes rather than inherited from her parents. “The chain has started with Elise,” says Anthony.
“It means that if she goes on to have children there’s a 50% chance that they will also have the same condition.”
But for now, the family is fully focused on getting their daughter through her treatment.
“She’s a tough little cookie,” says Emma who is keen to share her story so that other parents know the signs to look out for. “We’re getting so much support from Barts hospital and The Childhood Eye Cancer Trust (CHECT). They’ve really helped us both emotionally and with practical help too.
“I’ve been reading up on a lot of things and we’ve set up a fundraising page in Elise’s name. Hopefully it can fund research that, even if it can’t help her, will help others going through this in the future.”