On the 22nd of March 2019, Sophie (aged 19 months) was sent to the Women’s and Children’s hospital after a visit to her GP. Nothing could have prepared our family for the diagnosis ahead. Testing over the next few days confirmed that Sophie had stage 4 Neuroblastoma, a rare and aggressive childhood cancer affecting about 40 children in Australia each year.
Sophie’s cancer was classified as ‘high-risk’, given the extent to which it had spread throughout her body. The primary cancer had developed in her adrenal gland and was pressing on her spleen and kidney. Her bone marrow was 86% invaded by cancer cells and Sophie had secondary cancers on her sternum, arm bones and throughout her face. We barely had time to process the diagnosis as Sophie had to begin treatment immediately, especially as the cancers in her face were close to her optic nerve placing her eyesight at risk. A central venous catheter, used to administer chemotherapy drugs, was inserted in Sophie’s chest and she began her treatment. Our lives as we had known them were never to be the same again. Our hearts ached not only for Sophie but for our 4-year-old daughter who would have to endure the trials of having a sister with cancer.
Since her diagnosis, Sophie has endured months of chemotherapy, scans, biopsies and a major operation to remove the primary Neuroblastoma in her abdomen. She has one more cycle of high-dose chemotherapy in October, followed by radiation treatment and then five months of immunotherapy. After all her treatment in Australia is completed, there is the very real chance that Sophie’s Neuroblastoma could relapse (come back). If this were to happen, there are very few options for treatment here in Australia and Sophie may not have enough time to receive treatment overseas. The majority of children who relapse with Neuroblastoma in Australia are considered terminal.
Statistics show there is around a 50% chance of stage 4 high-risk Neuroblastoma returning. As a parent that is much too high a chance for us to sit around and do nothing. We have researched extensively to find a treatment that will give Sophie a better chance of remaining relapse-free. A clinical trial in New York is using cutting-edge science involving a cancer vaccine. The vaccine helps to train the body’s immune system to find and attack any remaining cancer cells that could cause relapse. Initial results have shown this treatment to be very promising and the company that produces the vaccine has announced plans to commence commercial-scale production.
Unfortunately, this treatment won’t be available in Australia any time soon, so Sophie’s only chance is to travel to the US. Participation in the trial would require multiple trips to New York over the course of a year. However, this treatment comes at a cost of approximately $300,000. This is where we need your help!
Those who know us, know that we are fiercely independent people who struggle to ask for help. Cancer has taught us that we can’t do this alone. They say “it takes a village to raise a child” and we are asking people to be that village. Please, please, please help us to get Sophie to New York so that she has a chance to live a long and happy life. Even if we had the time to sell everything we own, we could not come up with the large amount of money needed to access the treatment for Sophie in New York. By helping Sophie access this treatment, you may play a role in helping to prove its effectiveness in preventing relapse. One day we hope it can be available to children in Australia, without them having to travel overseas.
We appreciate you reading our story and are so touched by the support we are receiving to help Sophie in her fight. Please share Sophie’s Go Fund Me page and Rare Cancers Australia page far and wide. Any unused funds from Sophie’s Go Fund Me belong to furthering research in finding a cure for this insidious disease and would be directed into Neuroblastoma research.
With deepest gratitude,
The Stephenson Family
The human spirit is stronger than anything that can happen to it.
C. C. Scott