I'm participating in the 'Neuroblastoma Run2Cure' event that will be held on Saturday, 4 September 2021. The event aims to raise: 

1. awareness for the leading cause of cancer death in children under five years old; and

2. funds for research to get better and safer treatments for children diagnosed with neuroblastoma. 

For those who know my family, it is no surprise that I would be getting involved to help raise awareness for this disease.

In December 2019, my gorgeous nephew, Thanasi, graced us with his presence. However, our family's excitement was short-lived, as he was diagnosed with stage 4S neuroblastoma that same day. The unexpected cancer diagnosis left our family heartbroken as we struggled to comprehend what this meant for our baby boy. 

Within the first five days of his life, Thanasi underwent a procedure, had a central line inserted into his chest and had his first round of chemotherapy. He endured the same side effects that adults have experienced with this treatment; nausea, vomiting, fever, lethargy, hair loss and weight loss. It was difficult watching my sister and brother-in-law fight to stay positive each day. Even more so, watching Thanasi fight to stay alive.

Thanasi spent three weeks in NICU before being transferred to the hospital's oncology ward, where he underwent four rounds of chemotherapy - all before he was three months old. Although the treatment helped save his life, it has also had lifelong consequences. Doctors had difficulty sharing the news that Thanasi would experience hearing loss due to the chemotherapy used as part of his treatment. 

Although we feel blessed that our little boy has come out of this as a survivor, we know that this is not the case for many other children diagnosed with neuroblastoma.  

Only 40 children are diagnosed with neuroblastoma in Australia each year. Diagnosis varies - with benign tumours resolving spontaneously and unexplainably on one end of the spectrum and aggressive tumours with an average survival rate of 50% on the other. That's one in two children diagnosed with aggressive neuroblastoma who don't make it home.

Neuroblastoma is a rare and complex disease that requires attention.

It would be greatly appreciated if you could show your support by participating in the event and/or donating. Your contribution would help us get closer to our goal: no child or family ever experiencing this horrible disease.

Thanasi's name in Greek means eternal life/immortality. We think it's a name fitting and deserving of a boy who came into the world fighting and who continues to show us the meaning of true courage and strength. His start does not define him, but it could help determine the approach to neuroblastoma in the future and help others.

Thank you for your support!