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At the age of four, Jamie became unwell at nursery. He was later diagnosed with stage four Neuroblastoma. Read Jamie's story below...
The cancer had spread from Jamie’s kidney to the femurs of both legs, some lymph nodes, around the orbital in his eye and to his his bone marrow. Given a survival rate of around 20-30%, Jamie began treatment in Dusseldorf, Germany, where the family were stationed with the Royal Army Medical Corp.
The initial chemotherapy Jamie received made him very ill, and his tumour became so large it began to affect his breathing, eating, drinking and movement. Over the eight blocks of initial chemotherapy, Jamie also developed pneumonia and suffered a sepsis (infection of the blood) which left him in critical condition.
However, over time, Jamie began to respond well to treatment and regained some movement with physiotherapy. Jamie then received surgery to remove his tumour and kidney. The doctors noted that Jamie had some residual neuroblastoma cells in his body. Jamie completed his treatment with high dose chemotherapy, a stem cell harvest, and a stem cell transplant in Dusseldorf, Germany.
Even though Jamie responded well to this initial treatment, the chance of relapse was as high as 40% due to the microscopic cells that survive chemotherapy (also called minimal residual disease or MRD). An antibody trial in America that was successful in targeting the minimal residual disease had potential to improve Jamie’s chance of survival by an additional 20%. To participate in the antibody trial, Jamie needed to begin treatment within 90 days of receiving his high dose chemotherapy. In March 2010, the Inglis family left the UK for the Children’s Hospital of Philadelphia (CHOP) after fundraising USD$500,000 with the support of their local communities in the UK and Germany, and the 2Simple Trust (now known as the Neuroblastoma Children’s Cancer Alliance).
Jamie’s treatment in Philadelphia began with 12 rounds of radiotherapy under sedation before beginning the ch14.18 antibody treatment – involving the antibodies given alongside IL2 and GM-CSF. At this time, Jamie’s scans and bone marrow biopsies showed no evidence of neuroblastoma.
Jamie had five rounds of antibody treatment at CHOP and experienced a multitude of side effects – shingles from the chemotherapy, an allergic reaction, fluid in the lungs, low unstable blood pressure, swollen lips, high temperatures, an ear infection, slow heart rate, dehydration and a hernia in his abdomen as a result of previous surgery. Throughout the antibody treatment, Jamie had further testing which found him clear of neuroblastoma. He returned to the US a few months later for follow up tests which were also found to be clear.
Jamie continues to be tested for neuroblastoma regularly. The Inglis family have since moved back to York in UK, and have Jamie’s testing done at their local hospital.
Please help us to help other children like Jamie. Find out more about our work and other children that need your help at www.childrenscancer.org.uk.
The work of the 2Simple Trust will be moving over to the Neuroblastoma Children's Cancer Alliance UK. The new charity is focussed exclusively on helping children with neuroblastoma and will drive the 2Simple Trust’s mission to improve the outcome for all children with neuroblastoma. We are an alliance of parents and communities who want to beat childhood cancer.
