Six weeks ago little Florence Bark was a princess-loving, kind-hearted girl living her best life in Corby with her mum Stacey, dad Andrew and brother Freddie, eight.
But when she became weak, suffering with mouth ulcers, night sweats, and a 15-day temperature that wouldn’t go away, her mum instinctively knew something was not right.
On the advice of doctors at Corby Urgent Care Centre, where Stacey works in the x-ray department, she took her girl to KGH and refused to leave until she was given blood tests.
When the results came back an hour later, ashen-faced doctors gave Stacey the crushing news that her daughter had blood cancer.
She was first sent to Leicester Royal Infirmary and then on to Nottingham Children’s Hospital in the Queen’s Medical Centre. On May 13 she was diagnosed with acute myeloid leukemia and, because of her genetic makeup, her prognosis was grave. There is also no exact match for her on the blood stem cell donor register.
Her parents have now launched a campaign to get as many people as possible signed up to the register and to raise half-a-million pounds should a stem cell transplant fail and the family has to seek expensive last-ditch treatment abroad.
Stacey said: “You just don’t expect your child to be diagnosed with something like this. I just knew something was wrong with her. She was weak as water. KGH said she had a viral infection but I said I wasn’t leaving until she had blood tests.
"I was taken into a room and told she had blood cancer and her numbers were really, really high. I was crying and Florence kept saying ‘tears aren’t going to help anything, we’re going to be OK.’
“We’re really running on empty at the moment. Florence isn’t allowed out of the hospital so we’re taking it in turns to stay with her. We’re being helped by a charity called Billy’s House so we have somewhere to stay together in Nottingham.
"We’re quite private and we never wanted to do this but we know we have to for Florence.
“I just keep thinking that they’ve made a mistake. She’s the most terrific little thing. She’s so concerned about the other children on the ward.
"The staff here are just amazing. I’ve always been proud to work for the NHS but I can’t believe how wonderful they’ve been to us.
"We’re just so grateful for all the support we’ve had from people in Corby and from further afield. It’s been overwhelming.”
All about little Florence Bark
Florence is five and turns six in July. She’s a year one pupil at Oakley Vale Primary School. When she grows up she wants to be a nurse.
Her mum Stacey works as a healthcare assistant at Corby Urgent Care Centre at and at KGH, and her dad Andrew is headteacher at Kingswood Primary School. She has a brother, Freddie, eight. She LOVES dressing up and wears a different princess dress every day.
She has her dresses with her in hospital and when she has to have really difficult medical treatments, she gets a new princess dress to cheer her up. Mum Stacey said: “She’s so brave and she’s made me so proud.
"She’s in hospital and seeing other children so scared but she just wants to make them happy and cheer them up.”
What’s acute myeloid leukemia?
It’s a quick-developing type of cancer that affects blood-producing myeloid cells in the bone marrow (the spongy material inside some of our bones). It usually affects adults and only 100 children are diagnosed in the UK each year with AML. Florence’s gene type means that she’s has very high risk AML.
Coincidentally, there is another AML patient on the same ward from Northampton that the Barks are hoping to work with to increase knowledge of the blood stem cell donation register.
What treatment is Florence having?
She’s already had one gruelling round of chemotherapy but this did not work as well as hoped so she’s starting another, more intense, round of emergency chemo today (June 20) which will take place over the next five days.
The next step is a bone marrow transplant – but there is no complete match on the donation register. Andrew and Stacey are hoping that the bone marrow transplant will work but, if it doesn’t, one possible last-chance route is Car T-Cell therapy. Cells are taken from a patient’s own body and changed to attack cancer cells before large numbers are grown and infused back into the patient’s body. This treatment is not offered on the NHS in the UK. It is offered abroad but it’s incredibly expensive – up to £500,000. Because of this, Andrew and Stacey are kicking-off their fundraising efforts right now.
If Florence is eligible for Car T-Cell, she may need to fly to Singapore for treatment. "We’ll try anything they can throw at us,” said Stacey. “We’ll sell the house if necessary.”
What’s happened this weekend?
Stacey and Andy launched their Just Giving campaign on social media to an absolutely overwhelming response from Corby people. £51,000 has been raised already and the total is rising minute-by-minute. Stacey said: “Corby is an amazing town. We’re so proud to be from Corby. People always pull together. This fundraising has filled us with a bit of hope and given us something to focus on.
"To raise 20k in less than 12 hours was amazing but we can’t believe it’s just kept going up and up.”
Because Florence’s leukemia is aggressive, time is of the essence. The family needs to get as many people as possible signed up to the blood stem cell donor register before a possible transplant in five or six weeks.
How can I help?
You can SHARE details of the campaign using the hashtag #bemorefab as widely as possible so that people across the country see it.
You can SIGN UP here to become a blood stem cell donor if you are OVER 30
You can SIGN UP here to join the stem cell register if you are UNDER 30
You can DONATE here to give directly to Florence’s campaign to raise half a million pounds
What happens if the money is not needed?
The family has signed up with Tree of Hope which means they can raise funds under the registered charity’s umbrella. Any money will be used directly for Florence’s treatment, family costs, rehabilitation or ongoing medical needs. If it’s not needed before she turns 18 then it will all go to a cancer research charity.