In January 2024 our world was turned upside down when our beautiful Immy was diagnosed with a very rare bone cancer Ewing's Sarcoma at the age of 19.

When Immy was learning to drive at the age of 17 she experienced a week of very intense pain that then subsided. Later that year, she experienced the same pain and this time she did go to her GP who prescribed painkillers and advised to have some physio which she did. The pain did then go away but then in January 2023 when she was studying for her A level mocks the pain returned, the worst it had ever been and she went back to the doctors and was prescribed even stronger painkillers. The doctor referred Immy for an X-ray and more physio. In August 2023 the pain returned but not so intensely and Immy thought she had just pulled a muscle. She went off to University in the September and despite going to the gym and trying to build strength she felt her leg was very weak and not right. At this point we went to Bupa privately and Immy was referred to a hip specialist who insisted on an MRI as he believed it was a mechanical issue with the hip. At the end of January 2024 over 18 months since the first episode we received the devastating news that the MRI had shown a tumour, most likely a Sarcoma - a very rare bone and soft tissue cancer.

Immy was immediately referred to the Oxford University Hospital Sarcoma Unit. Unfortunately, the day before the planned consultant appointment with the Sarcoma team the tumour caused a pathological break to Immy's left femur and she was admitted to hospital in Oxford. Immy was in traction for two weeks whilst we awaited the official diagnosis. Ewing's Sarcoma - a rare aggressive bone cancer with about 90 people a year being diagnosed (mostly Teenagers and Young Adults). Immy had to start a very intense aggressive Chemotherapy regime within days. Luckily, Immy was offered Ovarian Cryopreservation just before her treatment started as the chemotherapy would most likely make her infertile - 4 days after her diagnosis she started Chemotherapy.

Sadly treatment has not change much over the past 30 years which means survival rates have not improved. The chemotherapy is brutal and is given every two weeks over 14 cycles.

Immy also had Proton Beam Therapy, a focused radiotherapy that delivers a high dose of radiation to the tumour every day for 6 weeks at UCLH in London.

And after all that in September Immy had major surgery - a full hip replacement and 20cm of her femur replaced. The surgery was complex and it has been and continues to be a very long rehabilitation.

This has been the hardest time of our lives but Immy has and continues to be an absolute inspiration, never complaining and trying to stay positive in the darkest of times. We are so so proud of her. Immy has returned to year one of her English Literature degree at University of Bristol. Her mobility is a challenge but she is making it work with intensive physio, swimming and the gym! She’s enjoying being back with her friends and all that comes with student life. Her first maintenance scans were clear and we now wait till March for the next ones. Onwards and upwards for our amazing girl ☺️

Sadly, we are not alone in Immy's story, with many sarcoma patients receiving a mis- or late diagnosis, meaning survival rates are much lower than other Children, Teen and Young People cancers. As sarcoma and its many subtypes is so rare, less funding is invested for research which means a lack of progression for treatments.

The Bone Cancer Research Trust is dedicated to saving lives & improving outcomes for people affected by primary bone cancer. Despite being small, they fund more research projects exploring primary bone cancer than any other organisation. Other large UK cancer research charities do not prioritise bone cancer patients, in 2019 just 0.028% of their research spend went to bone cancer – not even close to 1%!

Last year alone, Bone Cancer Research Trust committed an incredible £807,824 to pioneering bone cancer research - to save lives!

I am running the London Marathon to help raise vital funds for BCRT.

PLEASE PLEASE contribute anything your can to help improve outcomes for young people like Immy.