Family's appeal for help after two-year-old Flora diagnosed with cancer

Flora Gentleman, from Aberlady, was diagnosed with neuroblastoma in April after being misdiagnosed with a viral infection by her GP three times in March.

Flora’s parents, Stephanie Kent and Jamie Gentleman, said they took Flora, who is non-verbal, to the doctors for almost a year before their daughter was diagnosed with cancer.

Stephanie said: “I believe this has probably been going on a lot longer than we initially thought.

“For the previous year, we have been going back and forth to various doctors, we’ve seen specialists, we’ve delved into all different areas of Flora’s health and development.

"We have seen neurologists, digestion specialists, ultrasounds, blood tests – we have had so many investigations done.”

Stephanie said that Flora’s health deteriorated rapidly after being diagnosed with autism spectrum disorder in January.

She told the Courier: “She completely went off her food, I couldn’t get her to drink juice.

"Normally Flora would be at the cupboard every hour for snacks, and it was really hard to get a meal into her because she wasn’t hungry.

“Flora is normally very hyper and climbing all over the furniture, she’s so wild and she just wasn’t acting like that anymore, so I took her to the GP because I noticed that her lymph nodes at the back of her head were really swollen and I had never seen that before but the GP reassured me that that was totally normal when a child has a viral infection, so she told me not to worry.”

Flora’s parents, who have lived in Aberlady for two years, returned to the same GP for a second and third time with concerns about their child’s sleep deprivation, lack of appetite and upset stomach, but were turned away again with a viral infection diagnosis.

Stephanie, 29, said: “When I returned for the third time, I was frustrated because I knew I wasn’t being heard.

“The tricky thing with Flora is that she is non-verbal so she can’t tell me exactly what’s wrong, she can’t point to her tummy and tell me she feels poorly, so she will be whiny and upset so it is very much a guessing game.”

Stephanie said that in the last week of March, herself and her fiancé Jamie rushed Flora to A&E at Edinburgh’s Sick Children’s Hospital after their toddler developed yellow skin, bruising around her eyes and limpness.

It was there they were delivered the devastating news that their child had been diagnosed with stage four neuroblastoma.

Neuroblastoma, an aggressive childhood cancer with a long-term survival rate of 40-50 per cent, affects about 100 children in the UK each year and has the second highest morality rate in children, second to leukaemia.

Flora has now received five rounds of chemotherapy at the new Sick Children's Hospital and will receive her sixth treatment on Monday.

Stephanie said: “Flora is doing as well as we could right now. She is having chemo every 10 days and because her cancer is so aggressive, her treatment is really intense.

“These are really toxic drugs that are being pumped into her so they come with side effects like vomiting, diarrhoea, tummy pain, bone pain and when she is walking you can tell she is uncomfortable and so it is really hard to watch.

“When she wakes early in the morning screaming and vomiting, it is really hard to see your little girl go through chemotherapy, and this is only the beginning.”

Flora’s parents say that the side effects of treatment are tough, but Flora’s personality shines through the discomfort she is experiencing.

After her initial treatment, Flora will undergo surgery to remove a tumour in her abdomen, followed by up to four weeks of high-intensity chemotherapy, where she will be required to stay in hospital full time due to risk of infection.

A round of radiotherapy, bone marrow/stem cell replacement and immunotherapy treatment will follow the surgery.

Stephanie and Jamie are now fundraising money for further treatment to get their daughter into remission, the cost of which can be hundreds of thousands of pounds.

In less than 48 hours, Flora’s fundraising page has raised over £5,000.

Flora's parents, who got engaged at New Year, said that they wanted the whole of East Lothian, Scotland and the UK to get behind Flora’s battle with neuroblastoma.

The family say they are overwhelmed by the outpouring of love from the community and have been touched by other families who have reached out to share their experiences with childhood cancer.

Flora’s dad, Jamie, will run the 5k Tough Mudder at Dalkeith Country Park on July 4 with his brothers and close friends to raise money for Flora’s treatment.

The family are also planning to take part in a 10k run in Musselburgh on September 19, which will be Flora’s third birthday.

Stephanie said: “We want to get as many people involved as possible as it will be Flora’s birthday, so we thought of all the days for a race to be happening, we have to come out and run for Flora’s birthday."

The family say they are incredibly thankful for Flora's hospital team of oncologists, nurses, doctors and staff.

Stephanie added: “I have really needed their support, there have been nights I have been in hospital and I have been unable to sleep, lying there watching Flora, and they have been there every step of the way, giving me that support, but also they have gone above and beyond for Flora.

“Because Flora is autistic and non-verbal, the staff have gone out of their way to make her comfortable. We have even had nurses come round to the house for play dates with Flora to build a relationship with her.

“We appreciate all the staff so much.”

To help support Flora’s campaign, get in touch with the fundraising team on 0207 284 0800 or fundraising@solvingkidscancer.org.uk

To donate to Flora’s Fight Against Neuroblastoma, visit www.solvingkidscancer.org.uk/Appeal/flora