Story
During lockdown on 28th October 2020 we received the shocking news that's every parent's worst nightmare. Our 10 year old daughter Flora (the youngest of our 4 children), was diagnosed with Ewing Sarcoma, a rare form of primary bone cancer. From being a normal perfectly happy, healthy energetic little girl, Floras' and our family life literally changed overnight and we were suddenly thrown into a world of uncertainty, worry and many many months of intensive hospital treatment.
Over the course of 10 months Flora endured a grueling 14 rounds of chemotherapy to reduce the size of the tumour which was coming from her rib and compressing her right lung. Each time she had chemotherapy she had to be admitted to the Royal Marsden for 6 days or 3 days (depending on the cocktail of drugs she was given), then we had a few days at home before we were back in again for the next round.
The tumour responded positively to the chemo and on 15th March 2021 she had major thoracic surgery at The Royal Brompton Hospital, London. Surgery involved removing what was left of the tumour as well as having her diseased ribs removed. Sections of her lung and diaphragm also had to be removed and her chest wall was reconstructed to protect her organs. During her recovery from the surgery she had further 5 rounds of chemotherapy, plus 5 weeks of daily radiotherapy.
In-between her admissions for chemo, she was also regularly admitted to our local hospital at St Peter's hospital to patch her up from the side effects of her treatment, she required many courses intravenous antibiotics to prevent sepsis and a total of 19 blood transfusions. All in all me (her mum) and her spent over 100 nights in various hospitals.
Unfortunately as this all took place entirely during Covid, there were long periods where she was separated from her dad and adored 3 siblings, as no visitors were allowed. It was an extremely difficult time for the whole family.
Despite all this Flora has been incredibly brave and as well as developing a very expensive taste in hats (should have got shares in Vans!), she always had a big smile on her face throughout her treatment journey, we couldn't be more proud of her!
The Jarrett family would like something positive to come out of this and want to raise as much money as possible so that no other child has to go through what Flora has been through.
Sadly over the years, primary bone cancer has been neglected by the major cancer charities and receives very little in the way of funding, meaning that the treatments and outcomes Flora was given, have not moved forwards at all in the past 30 years! We firmly believe that children with all types of cancer, including primary bone cancer deserve the very best treatments, childhood cancer should not be a lottery!
We are supporting the amazing Bone Cancer Research Trust, so that more effective and kinder treatments can be found for sarcomas and in the hope that no other children have to go through this awful treatment and to beat childhood sarcomas. Any money raised on this page will go entirely to funding ongoing research into Ewing sarcoma.
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!
To find out more on signs and symptoms of sarcoma go to:
https://www.bcrt.org.uk/information/about-primary-bone-cancer/