Tobias was diagnosed at just eight weeks old with Infantile Fibrosarcoma – a tumour so rare that only 50 children in the last 20 years in Europe have been diagnosed with it.
When Tobias was just eight weeks old he was putting on very little weight and had stopped feeding. The GP found a suspicious lump on Tobias and referred them to the hospital. They found a mass on his ultrasound and his parents were told it was cancer.
His parents held him as he slept as the lump protruded out of his side and back. They were convinced he would die as the lump seemed to be growing by the second. He was diagnosed with a mesoblastic nephroma – a very rare type of kidney tumour. They were told it would be treatable by removing the kidney and the tumour together. However, the surgery was not as straightforward as hoped. The tumour was wrapped around the kidney with a difficult blood and nerve supply. During the surgery he lost his body weight in blood and was in ICU.
They then found a tumour on Tobias’ spine that had been missed and would need chemotherapy. During his second round of chemotherapy he suddenly became much worse.
Another ultrasound and CT scan revealed a new tumour near his liver. He would need another surgery and stronger chemo which would make him extremely ill.
Thankfully, his surgery was a success and Tobias responded well to the chemo. He still relies on a feeding tube that goes into his tummy to get his important nutrition and he struggles with his speech. At the time of writing, Tobias is now five years in remission.
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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.
