Ben has a rare cancer called Alveolar Rhabdomyosarcoma, first diagnosed in June 2018.
He has received and completed first line, high dose chemotherapy treatment through the NHS in December 2018. All was looking good as he moved onto low dose 'maintenance' chemo in January 2019. But this treatment did not work. He has relapsed and the cancer has come back.
Ben is now on an experimental clinical trial part funded by Cancer Research UK. We live in hope but the outlook is bleak. Outcomes for this cancer type has not progressed in 40 years.
There are cases where children with the same disease are doing comparatively well. We are looking to emulate some of those cases, if possible. This includes complementary supplements and nutrition. Some of these options are are expensive and not available on the NHS, and we may need to travel abroad too.
We aren't fully sure yet, but we think we will need funds to help pay for genetic and other testing to identify potential treatments, to pay for supplements, and to access treatments, and travel as needed.
Funds donated to this page will go directly to support Ben's treatment. Any unused funds will be redirected into research for Rhabdomyosarcoma via our parallel CCLG research fund. We will be transparent in all spending and no penny will be wasted.