Let Oscar Shine – Help Oscar Beat Neuroblastoma!
In February 2019 only a few months after celebrating Oscar’s 3rd birthday and finding out he was going to become a big brother, we received the news that no parent should ever have to hear. Our beautiful blue eyed boy, with a gentle heart and soul, had been diagnosed with stage 4 high risk neuroblastoma, a rare and aggressive childhood cancer. Oscar being 1 of 40 children who are diagnosed in Australia each year. In an instant our families hopes and dreams were shattered.
Within 48 hours of initial scans and biopsies, Oscar had complications under general anaesthetic and ended up intubated in ICU. It was terrifying how quickly things had escalated. We spent the next two months in hospital having chemotherapy whilst recovering. It was brutal, he was violently ill and temporarily lost mobility to sit up and walk. Further investigation also found a lymphatic fluid leak which required drains in both sides of his lungs to remove the fluid.
Over the following 16 months Oscar endured 5 rounds of chemotherapy, stem cell retrieval and transplant with further high dose chemotherapy, a 10 hour surgery to remove his remaining tumour, 12 sessions of radiation, six months of immunotherapy, multiple other surgical procedures under general anaesthetic including insertion of a PICC line which was later replaced with a Hickman line, biopsies, bone marrow aspirates, blood and platelet transfusions, weekly dressing changes and nasal gastric tube replacements.
Throughout Oscar’s treatment although he continued to respond, it took the entire 16 months to hear the news our boy was "NED – no evidence of disease". It was the news we had waited so long to hear. We were overjoyed and naively looked forward to becoming a normal family again.
Unfortunately, our newfound hope was shattered just three months later when routine scans showed Oscar had relapsed in his leg. With only two small spots we proceeded with a biopsy and radiation. However, in just six short weeks Oscar’s disease had spread into his ankle, femur, hip, multiple spots in his spine, shoulder, arm plus in his bone marrow. Results of his leg biopsy showed Oscar’s tumour tested positive for both the ALK and TERT genes making his cancer extremely aggressive.
At this point it had been close to two years of treatment and we were almost back to where we had begun. Our oncology team advised us we had options to continue with chemotherapy and immunotherapy which could give us time but heartbreakingly there is no cure for relapsed neuroblastoma in Australia.
While Oscar will continue to have treatment for the remainder of this year with chemotherapy and immunotherapy every three weeks, we have researched worldwide for further treatment options in hope of finding a long term cure.
Memorial Sloan Kettering hospital in New York have a neuroblastoma vaccine currently being evaluated in clinical trials. It targets two proteins found on neuroblastoma tumours. They train the immune system to identify and destroy neuroblastoma cells which remain in the body. The early phases of this therapy has shown extremely positive results to date and participating in this is Oscar’s best chance for survival.
Currently the trial requires 7 vaccinations over 12 months however it is expected that Memorial Sloan Kettering will this year announce an increase to 10 vaccines over the course of 2 years. This would require us to travel back and forth to New York. Unfortunately, this treatment comes at a large cost for international patients to cover medical bills, accommodation and travel expenses. With the increase to 10 vaccines over 2 years, it is estimated we will require up to AU$450,000.
Asking for help is not something that comes easily to our family. However the longer we have been on this journey, the realisation that this is beyond our abilities has become very evident. And that is so incredibly heart breaking to say. As a parent all you ever want to be able to do is protect your children and raise them happy and healthy.
Please help us get Oscar to America for further treatment so he has a chance to live the life he so truly deserves.
We are so grateful to everyone for donating, for sharing Oscar’s Go Fund Me page far and wide, and for the love and support we continue to receive from everyone. THANK YOU for helping to give our son another chance.
Any unused funds will be donated to Neuroblastoma research in the hope of finding a cure for this horrible disease.
With our heartfelt gratitude,
The Dixon & Rotherham families.
A link to the trial can be found below and although it suggests this will only run until May 2021, it is an ongoing trial. We are in regular contact with Dr Modak at Memorial Sloan Kettering hospital and can confirm this trial will continue with expected changes to the number of vaccines and the time frame it will run over.
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