Two weeks after Lily’s 1st birthday, her parents found a lump on her left thigh. After a trip to the doctor, she was admitted to the Royal Bolton Hospital for a couple of days for treatment for an infection.
During her stay, the hospital carried out further tests to establish exactly what the lump was. It was after having an ultrasound scan they decided it must be a tumour. Her mum was told to go home and pack for a stay at the Royal Manchester Children’s Hospital in Ward 84.
After further tests and examinations, Lily was finally diagnosed with a tumour called rhabdomyosarcoma, a type of soft tissue tumour. She started a 6-month course of chemotherapy, staying in the hospital every three weeks for three days. She also had surgery to remove the tumour which, by this time, had reduced in size significantly.
Lily sailed through her treatment and completed her last course of chemotherapy. But just one month later, she had a temperature and had to be admitted to the hospital to be treated for an infection. A week later Lily’s temperature had risen again and, after more tests, her parents were given the devastating news that Lily had relapsed. They had found four more tumours on her lungs. The cancer was back.
Lily again started chemotherapy but her breathing was deteriorating fast and she had to be put on oxygen. Lily was then transferred onto the Paediatric Intensive Care Unit, sedated and put onto a life support machine to help with her breathing.
She stayed there for three weeks. Doctors told her parents that the chemo had caused so much damage that her lungs were irreparable and Lily would never recover.
Lily passed away in the arms of her mummy and daddy.
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Nancy, 11, was diagnosed with rhabdomyosarcoma when she was just 2 years old. She was treated with Proton Beam Therapy (PBT) in Germany but unfortunately relapsed less than a year later. The family were then sent to Germany for a second round of PBT. Although treatment helped to cure Nancy’s cancer, she has been left with lots of lasting effects which will require ongoing treatment throughout her life. Here Nancy and her mum, Antonia, share their story in the hope it will help others, raise awareness, and raise more money for children’s cancer research.
Why I am a Trustee of CCRF
I have spent my professional career representing individuals and families affected by the devastating asbestos-related cancer, mesothelioma, which has no cure and for which there are only a limited number of palliative treatments available on the NHS.
I joined CCRF because I wanted to bring my understanding of the need to raise awareness of less well known cancers and passion for the need to secure improved funding for research to children facing a cancer diagnosis.
My role on the Board
I am responsible for oversight of our collaboration agreements with other charities to co-fund research into cures and treatments for childhood cancers. I also manage our challenge events and help with community fundraising.
My Background
I am a Senior Associate at Irwin Mitchell LLP and specialise in Asbestos Disease Litigation, acting on behalf of victims of asbestos related diseases and their families. Over the years, I have undertaken a number of fundraising challenges to raise money for cancer research, including a 1000 mile cycle ride from Glasgow to Southampton.
