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Neuroblastoma UK

Neuroblastoma UK is a national charity dedicated to finding a cure for neuroblastoma, a rare childhood cancer. We do this by funding leading research projects to help find new, more affective and kinder treatments for this aggressive cancer.

www.neuroblastoma.org.uk

Charity

Registered charity no. 326385

Member since February 2021

Latest News

Florence's Story

Florence's Story

“Our beautiful daughter Florence was diagnosed with neuroblastoma in December 2015. On 11 February 2017, Florence passed away peacefully with her family around her. She was two and half years old.” Florence’s mum Carolyn shares their story. "In September 2015, when our daughter Florence was 14 months old, her carers at nursery noticed that she wasn’t eating much and was off her food. She was quite unsettled at home - she wouldn’t sleep, or would wake up crying, she was very hot and had lots of fevers. Florence was also constipated and we noticed that her tummy began to get bigger. We took her to the doctors at the end of September 2015. The GP recommended that we take her home and give her Movical for a few weeks. In total, we took her to the doctor three times. Along with the constipation, her tummy began to look really strange. We were persistent with the GP - perhaps it was “mother’s intuition” but I knew something wasn’t right. 

In November 2015, Florence developed a cough. After giving her some cough mixture, she slept really well. But she woke up screaming and her tummy was really hard so we took her straight to A&E. We were there for most of the day, being seen to in A&E and then paediatrics. Her blood pressure and heart rate were not normal for a child her age so we waited to see the paediatric consultant as we knew something wasn’t right. Florence was sent for an ultrasound and the two radiologists went very quiet. We were told that there was a huge mass in her tummy and they needed to investigate.

She needed a CT scan, but as she was only one year old at this point; we couldn’t keep her still so she had a general anaesthetic. Florence was admitted to the hospital and we were told that she either had Wilms tumour or neuroblastoma.

Following a biopsy, Florence was diagnosed with neuroblastoma, but the hospital didn’t know what stage she was at. She had a 9cm mass and needed chemotherapy straight away. Florence had the MYCN gene, but we weren’t told how important this is. If she didn’t have this gene, she would have been diagnosed with Stage 3 neuroblastoma.

She was later diagnosed with Stage 4 neuroblastoma.

Florence started the standard protocol in December 2015. She started chemotherapy straight away to shrink the tumour in readiness for surgery.  In March 2016, Florence had surgery and the doctors were able to remove 80% of the tumour. The tumour started in her left adrenal gland, wrapped around her aorta and going into her liver. After surgery, Florence had a stem cell transplant followed by high dose chemotherapy to reduce the remaining tumour more and to kill off any cancer still there. We were in hospital for two months. After high dose chemotherapy, she had four weeks of radiotherapy then immunotherapy, which was the last part of the standard protocol treatment.

At the end of November 2016, Florence had a pet scan and we were told that the tumour was growing again. She had to be taken off the immunotherapy treatment immediately. We were told that the only way we could hope for a cure was to get the remaining tumour out. So we went back to the surgeon but he told us no. Even after treatment, the tumour kept growing - it was so aggressive. Her stomach was growing and we were told that the tumour was growing into her stomach lining.

Florence received some more chemotherapy as part of the BEACON trial in December 2016, which sadly proved ineffective.  During treatment, Florence lost weight, had diarrheoa and her skin turned yellow. She’d want to eat and have food but just kept being sick. She became very irritable and very unsettled, it really affected her personality. Christmas Day and Boxing Day 2016 felt like months. Florence looked awful, so poorly. But she was still vibrant with a smile on her face and very strong willed. 

On 11 February 2017, Florence passed away peacefully with her family around her. She was two and half years old. The hospital was so caring and the staff were beautiful people. It’s where Florence was meant to be when she left for heaven. Funding research is so important. It’s where we really need to focus our efforts and raise more money.”