Shining a light on rare childhood eye cancer
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 nappy size.”
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.”
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■■To donate please visit: donate. giveasyoulive.com/fundraising/ bright-eyes. For more information on childhood eye cancer, visit chect.org.uk