East Lothian family who were told two-year-old had tummy bug receive diagnosis of stage four cancer and are now raising awareness of disease
An East Lothian family who began sharing the story of their two-year-old daughter Flora following a diagnosis of autism this year have received the devastating news that the toddler has stage four high risk cancer.
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Now, Flora’s parents Stephanie Kent and Jamie Gentleman, from Aberlady, are using the platform to raise awareness of the condition which affects 100 children a year in the UK, and fundraise for potentially lifesaving treatment in the US.
At just two-and-a-half years old, Flora has spent much of the last year at doctors and hospital appointments as her health and development was investigated and in January this year was diagnosed with Autism Spectrum Disorder.
In the months following, her parents noticed she still wasn’t herself.
Flora’s mum, Stephanie, 29, said: “Within a couple of months of being diagnosed with autism, we noticed Flora’s health had started to go downhill.
“Flora is wild - she has so much energy and is full of beans normally, but we noticed she was quiet, really lethargic and irritable, she had an upset tummy. I just knew something wasn’t right.”
Flora’s parents took her to the GP three times only to be told she had a viral infection.
By the end of March the normally vibrant little girl had deteriorated further and was admitted to hospital, before her family were told the devastating news that she had a tumour in her stomach which was stage four, high-risk neuroblastoma.
“I get frustrated thinking about the past year and how it was handled,” said Stephanie, “I think I was treated like a typical new mum who was overreacting and was on Google too much - I knew something was wrong and I kept being told not to worry and it wasn’t taken seriously.
“Being told unexpectedly that your child is stage four and high risk is really scary, neuroblastoma isn’t a great diagnosis, there’s a high chance of relapse and the symptoms are so similar to other things you might think are normal. The past year has been a rollercoaster of emotions.”
Flora has a tumour in her stomach and the disease in the bones around her skull, eyes and in her bone marrow, and she is now at the beginning of a gruelling 18 months of treatment ahead.
“The treatment is really intense,” Stephanie added, “She has had five rounds of chemotherapy so far, and there are eight for her initial treatment, hopefully then she will be able to undergo surgery to have the tumour removed.”
Since treatment began in the new Sick Kids hospital, her parents have described her as ‘doing amazing’ - she is back up on her feet and they are finding it difficult to keep her to the hospital bed as she wants to run around and play, which is a bit more of the Flora her loved ones knew before the treatment began.
Stephanie added: “We are so proud of how she is doing, at two-and-a-half years old to be fighting this with the strength she is is incredible, she’s taking some really powerful drugs which is a worry in itself but she has been so strong.
“The past year, we’ve been strict in staying away from everyone and now that things are getting back to normal, we can’t. It’s been really tough because everyone wants to come see her and we want her to have some normality, but that is still probably another year away which is heartbreaking.”
Flora’s parents are documenting her journey on the Flora’s Fight Facebook page and Instagram, which was set up initially to keep family and friends up to date on how she was doing, but has since become a platform to raise awareness of the cancer, and to fundraise for treatment which is unavailable on the NHS.
“I’d never heard of neuroblastoma before Flora,” her mum said, “It affects around 100 kids each year in the UK and while treatment with the NHS has come a long way, the battle isn’t over at the end of treatment. The chances of relapse are around 50 per cent, with a survival rate of just one in ten, so we would like to fundraise for research into the cancer, but also for two potential clinical trials which are on our radar.”
The couple have teamed up to launch an appeal with the Solving Kids’ Cancer charity, which allows them a platform to fundraise for research into childhood cancer, while also keeping some of the money in a fund towards experiential treatment for Flora and other children battling the disease.
The charity also provides support to families facing childhood cancer, and assist with arranging with the hospitals abroad to get the children out for the clinical trials safely and quickly.
Flora’s parents have also expressed their disappointment that there is not more help available to families facing the life-changing diagnosis from the Scottish government,
They said: “We’re disappointed with how much we have had to take on ourselves since the diagnosis, particularly with the fundraising and looking into clinical trials.
“There is a distinct lack of support for families with this diagnosis, these aren’t new trials, they’ve been going on for years at reputable hospitals with amazing doctors, and they are seeing great results. But we feel like we have been left on our own.
“We want the government to back families and support them. This diagnosis is hard enough without the additional stress of looking for ways to fundraise or researching clinical trials. We just want to spend as much time with Flora as we can.”