Story
In August 2020 Sophie had just turned 9, she was a healthy and happy girl who had never spent one night in hospital. After suffering for a few months with tummy pain and then bleeding she was diagnosed with a very rare and aggressive form of cancer, Rhabdomyosarcoma in September 2020.
Sophie had a major operation to try and remove the 12cm tumour in her abdomen. The amazing surgeons managed to remove 95% of it but sadly couldn't get it all out. Sophie also didn't get one clear margin which increased our risks of some cancer cells remaining. This meant Sophie had to endure very aggressive and intense chemotherapy for 9 months as well as 7 weeks of daily radiotherapy in London. In April 2021 Sophie only had a 1cm tumour left and she went onto maintenance chemo. In June 2021 during a routine MRI scan it showed a new tumour had grown in her abdomen.
Given Sophie was still receiving chemo and she relapsed so quickly after the intensive chemo had ended we knew our chances of ever getting Sophie into remission were extremely low. The relapse options for Sophie reduced due to the toxicity issues she was suffering with from her bowel. The only option we had was a palliative chemo which we tried but sadly this didn't make any difference and the tumour continued to grow at the same fast rate it had been growing at. We've always said as her parents that quality of life is so much more important than quantity. Sophie didn't want to have anymore treatment and we felt it wasn't fair to keep putting her through more treatment when the end result was always going to be the same. We therefore made the most difficult decision to stop further treatment knowing we have to now watch our beautiful daughter die.
Sophie wrote a bucket list at the end of June and everyone has been incredible in helping us achieve everything she wanted.
We now want to ensure vital funds are raised for Alice's Arc. Since Sophie was diagnosed with cancer we've learnt the shocking statistics that only 4-5% of funds go to children's cancer. The 6 different chemo drugs that Sophie received were created in the 60's and no research or medical changes have happened for rhabdomyosarcoma. If children with rhabdomyosarcoma relapse only 1 in 5 children will survive. This statistic is shocking. Alice's Arc was set up to improve research and funding into rhabdomyosarcoma. Their aim is to find kinder treatments for children with better outcomes.
Children like Sophie deserve so much more, more research, more funding and kinder treatments. They're given the same treatment as adults yet their bodies aren't developed in the same way. This therefore means that if a child is 'lucky' enough to survive then they have around 80% plus chance of having lifelong medical issues as a result of treatment. This has to change.
As a family we want Sophie's legacy to be changes in medical advances for children with cancer. We therefore need your help to raise as much money as possible to make this happen. We won't save Sophie but it might just save a family member, friend or the next generation of yours who could receive the awful news we received.