Florence’s Story
Florence was just one year old when a 30cm tumour was found in her tummy and she was diagnosed with high-risk neuroblastoma. Over the last 18 months she has endured chemotherapy, major surgery, stem cell transplants, radiotherapy and immunotherapy but despite it all is still smiling and the “sunshine” for her family. Anna, Florence’s mum, shares her story…
There is a life before Florence’s cancer diagnosis, and a life after.
On 18th November 2024, our world didn’t just change, it stopped.
After weeks of being told it was severe constipation, a 30cm tumour was found in Florence’s tummy, with disease in her spine. She was diagnosed with high-risk neuroblastoma.
Since then, Florence has gone through 18 months of treatment no child should ever have to face: chemotherapy, surgery, radiotherapy, procedures under general anaesthetic, and long hospital stays that became our normal.
Florence had a 12-hour surgery to remove her tumour, during which she also had her left kidney removed. Afterwards she was taken to intensive care and ventilated to support her recovery. One of the hardest moments for us was seeing her afterwards, so still, her tiny hands and feet cold while her body fought a high fever and infections, and trying to process just how unwell she looked, with so many tubes and wires attached to her little body after everything she had already been through.
We cannot thank the incredible surgeons enough for what they did for Florence that day. They removed 90 - 95% of the tumour, and what they took out weighed around 2kg with blood flow, which still feels impossible to comprehend given how small she was.
As a result of busulfan high-dose chemotherapy, Florence developed pulmonary hypertension, a form of cardiac disease. This wasn’t something that had been seen before at Birmingham Children’s Hospital in this context, so Great Ormond Street Hospital was brought in for specialist input.
At one point we were told she may not be able to proceed with radiotherapy because she required daily general anaesthetics and the risks with pulmonary hypertension could be life-threatening. We were genuinely preparing for the worst at that stage.
For her first general anaesthetic after the PH diagnosis, she was supported by the intensive care team as a precaution. Though in true Florence style, she sailed through it, and went on to complete 12 days of radiotherapy under general anaesthetic.
Florence has faced significant respiratory complications throughout treatment. She has had long hospital stays for oxygen support, has been on and off oxygen, and has required intensive care on three further occasions for respiratory support, including ventilation.
In December 2025, home oxygen was finally arranged so we could bring her home and complete her immunotherapy in the place she loves most.
Her pulmonary hypertension is now managed with medication, which has made a real difference to her stability day to day. She currently still requires home oxygen, and has further respiratory tests and procedures planned to try and better understand things going forward
And yet despite all of this - every admission, every setback, every side effect - she still somehow comes out smiling, playing, and full of life every time.
She is our sunshine, our Florie, and we are so incredibly proud of her.
Cancer does not define who Florence is or who she will grow up to be. She is our brave, beautiful, clever, strong, courageous and resilient little girl who simply just wants to be Florie.
Florie has now finished her frontline treatment. She was due to start DFMO, a relapse-prevention treatment, but after it was withdrawn from the UK, we're now exploring private treatment options to access it.
Our greatest hope is that one day neuroblastoma will be just one chapter in Florence’s story, not the chapter that defines it. But high-risk neuroblastoma leaves families like ours living with uncertainty. Even when treatment ends, the fear of relapse remains.
Every day with Florence is a gift we will never take for granted.
A big thank you to Anna for sharing Florence’s Story.
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