Florence’s story

In September last year, Flo started nursery school. She loved it immediately and quickly become best friends with her new teachers and playmates.

During October half term, Flo had an appointment at the Princess of Wales Hospital in Bridgend to investigate a dairy intolerance. But what started as a fairly routine investigation ended in something very different.

During the consultation, Demi mentioned, almost in passing, that Flo’s tummy seemed to be sticking out. Demi said: “Even when I mentioned it, I never thought it was anything sinister.”

The doctor examined Flo and noticed her stomach felt quite hard on the right side.

At a follow up scan on the 31st of October, Demi knew almost immediately that the news wasn’t good: “I could just tell by the sonographer’s face that something was wrong,” Demi remembers. She was alone with her two daughters while Alex was in work so the nurses asked Demi to call him in. When he arrived they were taken aside and told that there was a mass on Flo’s kidney.

Within hours, the family were transferred to the Noah’s Ark Children’s Hospital for Wales where they learnt that Flo had a form of childhood kidney cancer called a Wilms’ tumour.

“When they said it was cancer, I was broken,” Demi said. “I’ve only ever heard the worst-case scenario. I just kept saying – I can’t lose her.”

Though Flo had had no symptoms at all other than a swollen tummy, the tumour on her kidney had probably been growing for months. It measured 10 x 10 x 8 centimetres – an enormous size for a three-year-old. Though that appointment to investigate Flo’s dairy intolerance had been a traumatic one, Demi truly believes someone was looking over them that day, encouraging her to speak up about Flo’s stomach.

Flo was transferred to Birmingham Children’s Hospital for complex surgery to remove the tumour and her right kidney. The operation was particularly challenging because the tumour had grown into the vein, forming what’s known as a thrombus. But the surgery was a success and Flo spent another week recovering in Birmingham before returning to Wales.

Because of the tumour’s location, doctors had not biopsied it beforehand. They waited until it had been removed to test it.

Two days before Christmas, Demi and Alex were called again, already sensing that the news was not good. A biopsy of the removed kidney classed Flo’s tumour as high risk, meaning the cancer cells were more aggressive and carried a higher chance of relapse. She would need eight months of intensive chemotherapy. A day after that, on Christmas Eve, they were given more bad news. The cancer had spread to Flo’s lymph nodes meaning that she would also need radiotherapy.

“Then everyone was on Christmas break. We just had so many questions… but we had to wait.”

On Boxing Day, Flo began chemotherapy, which would be repeated in three week cycles for three days at a time. She also had to be put to sleep daily for 14 consecutive days to receive radiotherapy.

Last year, Demi saw posts on her socials about Childhood Cancer Awareness Day but says: “I never thought it would be us. I’ve always suffered with health anxiety and have been hypervigilant about anything with the girls, but I never thought something like this would happen to my family.”

Because of Flo’s high-risk diagnosis, the fear of relapse lingers like an invisible weight. But Flo is taking everything in her stride. She takes her medications orally because she doesn’t like the NG tube and stays awake for MRIs, where a child her age would usually be sedated. But Flo lies perfectly still for over an hour and a half – which is no small feat for a three-year-old.

“She’s just a really good girl,” Demi said.

Flo misses nursery school and her friends and her teachers. When she does schoolwork at home, she insists on wearing her uniform and talks about the day she can finally go back to school, to swimming, and to ballet.

Above all, Flo’s little sister Poppy has been her rock and has been such an important part of keeping her smiling.

Demi said: “The nurses are just so amazing. Flo loves them. She does little dances for them at the nurses’ station.”

Recently, Demi overheard Flo talking to a friend on the ward while they were playing. “I had a baddie in my belly,” Flo explained matter-of-factly, “and they took it out. But now I’m having lots of medicine to kill the tiny baddies.”

Demi said: “It made me realise just how aware and grown up she is. For a three-year-old, she just understands so much.”

Flo is one of the 188 children and young people diagnosed with cancer in Wales each year. Childhood Cancer Awareness Day is about raising awareness about childhood cancer and expressing our support for the children and young people effected by it.