Florrie's Langerhans cell histiocytosis Story

It started with her uncontrollable thirst

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.

More tests

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.

The treatment plan

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.

Ringing the end of treatment bell

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

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