An 11-year-old girl was diagnosed with a second brain tumour the day after she started senior school.
The family of Lucie-Joan Fagan, from Bootle, are now waiting for results from tests to see whether her cancer as spread before she can undergo further treatment. She received the news that there was a second tumour in her brain just months after finishing treatment for another tumour.
The ECHO first reported on Lucie’s treatment last year after she was diagnosed with ependymoma, a rare form of cancer.
READ MORE: Girl, 10, who complained of toothache had brain tumour the size of golf ball
It was found after she complained of toothache before trips to the dentist and then an optician revealed a growth in her brain. She had to undergo surgery to remove the golf ball sized tumour before being taken for gruelling further treatment.
Her mum, Jayne Fagan, said the family had to move to Manchester for months so Lucie could get proton beam therapy at the Christie Hospital.
She said they were delighted when Lucie “rang the gold bell” to signal the end of her treatment and soon returned home to Merseyside to continue her recovery. A number of further scans showed no other tumours growing on her brain.
But early last month, just a day after she started senior school, Lucie and her family were told that another tumour had started to grow in her brain. Soon afterwards, Lucie had to have another operation to remove that growth and the family now faces a wait as doctors measure its success.
However, Jayne told the ECHO the family have already been informed that Lucie is unlikely to be eligible for proton beam therapy, the treatment she had after her first operation, again on the NHS.
She said this is because it is her second tumour and the demand for the treatment. The family are set to meet with doctors later this week to discuss what treatment is available but Jayne has now set up a GoFundMe to see if the family can seek private treatment for Lucie, who they call “our beautiful little liver bird”.
Jayne said proton beam therapy is offered privately in a number of countries but the nature of the treatment means the cost runs to tens of thousands of pounds.
She said: “They offer it at St Jude’s Hospital in America but it’s more expensive there. In Germany it costs about £58,000. They offer it in Australia as well but because of the level of care there it is the most expensive.”
Following Lucie’s initial diagnosis, Jayne set up the Ependymoma Parents UK Facebook group to connect with other families dealing with the disease.
She said she has continued to receive support on the group as well as getting messages from as far away as India asking questions about the types of treatment Lucie had. She hopes the group will continue to act as a support mechanism for people dealing with Ependymoma.
Despite the shock of the latest tumour, Jayne said Lucie is still doing well and is focused on school work and her education and remains set on her goal of going to university.
Jayne said: “My baby is my world. With everything we have been doing for the last two years it has made her even stronger. You do not fight a battle for two years to lose.”
Lucie’s GoFundMe page can be found here.
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