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Florrie was diagnosed with multi system Langerhans cell histiocytosis on 21 September 2020 when she was just 18 months old. Her mum Hayley tells their story so far:
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Florrie became unwell shortly after her first birthday. She began drinking excessive amounts of water and it seemed her body could not hold the water. Therefore, this resulted in wetting through her nappy several times a day. Florrie then began to lose a lot of weight and wasn’t developing as she should. After seeing several doctors, she was unfortunately misdiagnosed for some months.
She was unfortunately misdiagnosed for some months.
She became extremely poorly so we sought a private appointment with a paediatrician, who immediately insisted we take her to A&E as he suspected she had diabetes insipidus. After tests and an MRI, the team had seen Florrie had a lesion on her skull which had caused her pituitary gland, which is where her thirst hormone is controlled, to stop working. Because of this, Florrie was then referred to hospital for further tests. After several tests, including a lumbar puncture and skull biopsy, Florrie was finally diagnosed with multi system Langerhans cell histiocytosis which is rare disorder that damages tissue and she had to begin chemotherapy treatment straight away.
We also took part in a clinical trial as this disease is so rare. Florrie had her treatment plan for one to two years, depending on how she responded. She responded well so came off the treatment after one year. In this time Florrie had lots of hospital stays and unfortunately had a portacath infection which resulted in a long stay to try and clear the infection. Eventually, she had to have her portacath removed and new one placed.
Florrie rang the end of treatment bell in October 2021 after a year of treatment. Unfortunately, the damage to her pituitary gland means she will need lifetime medication, but this can be managed. We feel so lucky to have a healthy and happy four-year-old and this is thanks to her treatment, amazing consultants, nurses, and charities such as Children with Cancer UK.
Hayley, Florrie’s mum, May 2023
If you’ve been touched by Florrie’s journey, help us invest in the high quality research that really matters which would otherwise go unfunded.
This helps to support children with cancer so they can be with their families for longer.
Many of our supporters have been affected by childhood cancer – either through family, friends or their own personal experience. These patient stories can help inspire others to get involved with us, or can support our media work.
If you have a story that you would like to tell, .
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