Child with neuroblastoma given greater chance of survival with dinutuximab antibody therapy, now denied to children in the UK by the National Institute of Health and Care Excellence.
In May 2009, aged just 17 months, Stella Rogers was diagnosed with a rare type of cancer known as neuroblastoma. The tumour had originated in her adrenal gland and had grown to a large size. At diagnosis, Stella’s parents, John and Allison, discovered that she had just a 20% chance of survival.
Stella before her diagnosis
Stella’s initial treatment involved aggressive chemotherapy, major surgery to remove the tumour, a stem cell transplant, three weeks of radiotherapy, and six months of oral chemotherapy at the Royal Marsden Hospital in Sutton, Surrey.
Allison, a former accident and emergency nursing sister, said, “there were many times when we thought she might not pull through. “Even though Stella was so ill, I tried to do something small with her and her sister, Zoe, each day – going to the park or buying an ice-cream – so that every day she had, held a lovely memory for her.”
When Stella completed her treatment at the Royal Marsden, her chance of survival had increased to 50% and the options available in the UK had come to an end.
Not content to just wait and hope, Stella’s father, John, a scientist, spent many hours studying the latest research on this aggressive childhood cancer. To give Stella the best chance of survival, John and Allison decided to pursue further treatment in the US, which needed to commence within 100 days of Stella’s stem cell transplant.
Stella during her treatment
With the cost quoted at £250,000, and time running out, the Rogers family began frantically fundraising alongside the Solving Kids’ Cancer charity (then The2Simple Trust) to raise the funds needed to give Stella a better chance of life.
Speaking of their determination to give Stella every chance, John said, “Children with Neuroblastoma have a high risk of relapse. When you know a treatment exists that could give your child a significantly greater chance of survival, you do everything you can to give your child that chance. Now that dinutuximab is approved for use in Europe, UK parents should not have to be fundraising to access treatment abroad.”
Allison added “It isn’t just the difficulty of raising hundreds of thousands of pounds while your child is ill. Taking a sick child abroad, away from family and friends, is incredibly difficult for the child, siblings and the whole family at a time when that support is most needed”.
Day 2 of Unituxin Antibody Therapy
In February 2010, Stella began dinutuximab antibody therapy, shown to significantly increase the chance of survival, at the Children’s Hospital of Philadelphia. This treatment is approved by the FDA in the US and the EMA in Europe and is now the standard treatment for children with high-risk neuroblastoma in many countries.
Following this very intensive treatment, Stella’s test results in August 2010 showed that she was in remission and clear of cancer cells in her body.
Stella with big sister, Zoe
Today, both Allison and John volunteer for Solving Kid’s Cancer, the charity that helped Stella. Allison is the Chair of the Board of Trustees of Solving Kids’ Cancer and John acts as a research advocate. Stella remains clear of cancer and is now a robust 8-year old with an energy and love of life that belies the slim chance of survival she was given following her diagnosis.
In June 2016, Stella competed in her school swimming gala and first triathlon. She often talks about America and asks for “cookies”, putting the wrappers in the “trash”! Recently she has become very interested in the many people who helped to get her the medicine she needed – truly the gift of a lifetime.