Olivia's family visited Ben's Retreat in August 2023.
Over the last 7 years, Olivia has had 8 operations as a result of her condition....brain surgery and then multiple surgeries to remove neurofibromas (tumours) from various parts of her body, about 20 tumours removed in total!
In June last year, Olivia had surgery to remove 6 tumours, including 1 which she found in her groin only days before her surgery date.
In September after a delay with histology, sadly we got the news that the 1 in her groin had been confirmed as a Malignant Peripheral Nerve Sheath Tumour (stage 3 sarcoma). Another surgery was performed in October to remove the tumour again and the surrounding cells and then in December she started a 6 week course of Proton Beam Therapy...daily treatment for 30 days.
Olivia is now being monitored every 3 months in case it spreads or reoccurs.
In May she underwent more surgery to remove 6 more neurofibromas.
Following her surgery in May, one tumour removed was also confirmed as a low-grade MPNST, and 2 were Atypical neurofibromatous neoplasms of uncertain biologic potential (ANNUBP).
Olivia has just had another PET scan and is due nerve tests this week, but even after all she has gone through she remains happy and positive, most of the time! Everyone she meets loves her smile and her nature. We are very blessed to have Olivia as our inspirational daughter.
Thank you once again to everyone at BSF we are looking forward some much needed family time,
Karen, Lee, Olivia and Damien
If you are interested, please look on the website www.nervetumours.org.uk and you will see Olivia's face smiling at you 😊