The mum of a four-year-old girl receiving treatment for a rare form of cancer says that more fundraising support from the community may be needed to get her daughter back on a vaccine trial.
Flora Gentleman, from Aberlady, was first diagnosed with stage four Neuroblastoma, which attacks the body’s nerve cells, in 2021.
People from throughout East Lothian and beyond joined forces to organise a series of fundraising events in aid of Flora to help enrol her on a vaccine trial in New York to help prevent the disease’s return after she had been in remission.
READ MORE: Family 'devastated' after Flora's cancer returns
Through collective fundraising, more than £300,000 was raised to put her on the USA trial, which would see her receive 10 vaccines, beginning last September.
However, in September this year, Flora’s family were given the devastating news that her cancer had returned.
Her vaccine trial in New York was stopped and Flora has been undergoing a mix of chemotherapy and immunotherapy at the Royal Hospital for Children & Young People in Edinburgh to treat the disease.
Stephanie Kent, Flora’s mum, told the Courier: “Flora will start her third round of chemo next week and is doing really well with the treatment so far.
“She’s coped with it a lot better than we thought she would and it is now just a case of seeing how the cancer responds to it.”
Flora was set to undergo a bone marrow biopsy on Wednesday and is awaiting two assessments tomorrow (Friday) to see how the disease is responding to treatment.
READ MORE: Family of Flora Gentleman, 3, thrilled to reach fundraising target for her cancer treatment
Stephanie said: “We’re hoping that the results show she is responding well to treatment. But if not, there are lots of other options. If she is responding well then we can keep up with treatment.
“Unfortunately, with neuroblastoma, there is no real timeframe for how long treatment will last. It is different for everyone, it’s such a deceitful disease and a hard one to manage.”
Stephanie said she remained in contact with the team providing the trial in the USA, as well as charity Solving Kids’ Cancer, which specialises in tackling the disease. She said she was hopeful of getting Flora back on the trial in the future.
She said: “Right now we’re just focused on the chemo and current treatment. But we are looking at our options for the future if Flora becomes eligible for the trial again.
“We would have to start treatment again, and that would mean paying another £250,000 to £300,000 again.
READ MORE: Family's appeal for help after two-year-old Flora diagnosed with cancer
“I know some people might think putting her on the trial again is silly given last time she went into remission, but we don’t think so.
“The trial was first designed for kids who had already been in remission and was proven to be good at stopping it returning. They then opened it to kids like Flora who had never been in remission.
“We’re listening to advice and also looking at other options in Europe too but that is a long way away.
“We managed to raise more than our target through fundraising before and we are so grateful for people’s generosity. We have money left over and we will be refunded for the vaccines she did not receive this time, but ultimately we will likely need to fundraise again.
“We aren’t fundraising yet but it is a possibility in the future.”
Updating those following Flora’s journey on social media, Stephanie added: “She’s had to adjust to regular trips to hospital again with unwanted pokes and prods, unpredictability, isolation and missing out on all of the fun things we had just started being able to enjoy again. And as her parents, we have front-row seats to it all.
“We watch helplessly as she feels pain, we hold her tightly when she is poked with needles, we isolate with her, and our hearts break with every tear she sheds. We spend hours upon hours trying to make sense of medical journals, getting second opinions and doing everything in our power to make sure Flora is one step ahead of this disease. It’s exhausting for everyone involved, but there is no other choice. This is childhood cancer.”
Looking ahead to her scans this week, Stephanie said: “It is hands-down the most anxious I’ve felt in the lead-up to scans. We need a whole lot of luck, prayer and positivity, so please keep Flora in your thoughts over the next week.”
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