Dialog Box

Helping Sophie Stephenson

Helping Sophie Stephenson

raised of
$300,000 goal
Thanks to
80 supporters
After 18 months of brutal treatments for stage 4 high-risk neuroblastoma, our 3-year-old Sophie’s scans were clear. We let ourselves imagine returning to a “normal” life, with Sophie enjoying a childhood not stuck in hospital or isolation. We knew that relapse was a possibility, but we held out hope that all the treatment Sophie had been through had worked and the cancer would not return.

Sadly, it wasn’t long before our world was shattered again. Sophie’s 3-month follow-up surveillance scans showed that neuroblastoma has relapsed in her brain. Neuroblastoma relapse in the central nervous system (CNS) is rare and the survival statistics are poor. Without access to clinical trial treatments, the median survival time is less than 6 months. A clinical trial available overseas gives us hope for a cure, but we need help to make this happen.

We are absolutely devastated but are focusing on giving Sophie the best chance to beat this. In Australia, there is no standardised treatment protocol for CNS relapse as it is so rare. Any treatments currently available in Australia will not provide a cure. Our only option and Sophie’s only chance at surviving this is the CNS relapse trial overseas. Sophie's oncologist is in discussions with specialists around the world to develop a complex treatment plan involving treatment in Australia and participation in the overseas trial.

The first part of the treatment was brain surgery on 11th December 2020 to remove a tumour from Sophie’s temporal lobe. Such a daunting prospect, but thankfully the surgery went well and Sophie is making a good recovery. She has started chemotherapy along with craniospinal radiotherapy, which involves irradiating Sophie’s brain and spine. She will have daily radiotherapy sessions for several weeks and requires a general anaesthetic for every session to ensure the radiation is delivered precisely to the correct locations. This is to target the remaining neuroblastoma cells that are likely present throughout her CNS.

Even with all this treatment, it is unlikely to eradicate all the tumour cells. The best hope we have of curing Sophie of neuroblastoma is with a new drug called Omburtamab (8h9 antibody), which is only available through a clinical trial at several hospitals in the USA and Europe. This treatment involves radioimmunotherapy, where an antibody that attaches to neuroblastoma cells carries radioactive iodine to the cancer cells to kill them. While still only available through a clinical trial, this therapy is showing very promising results and is considered vital by international specialists in treating CNS relapse.

We are in the process of corresponding with the trial sites to establish their ability to take Sophie as a patient and to obtain quotes for the costs of medical treatment associated with participation in the trial. We are informed that the cost of this treatment will be substantial, but we will stop at nothing to ensure that Sophie can access it. Unfortunately, as the treatment is still in the clinical trial phase, we’re not eligible for any assistance from the Australian Government.

We’re on a very tight timeline, as we need to be heading overseas for this treatment within the next 2 months. We’d be so grateful for any assistance helping us to raise the much-needed funds to facilitate this crucial part of the treatment plan. We would need to be overseas for at least 2-3 months before returning to Australia for further maintenance chemotherapy.

It certainly seems like a long road, but Sophie is amazing and we’ll be right there helping her fight this as hard as she can. Please help us get her overseas for the treatment she desperately and urgently needs.

The Beginning of Sophie's Journey
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 a 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. 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. Thank you!

The Stephenson Family

Thanks to our supporters