In April 2018, after experiencing persistent tummy problems for almost six weeks, Marko underwent invasive testing over a two-week period.
“The results shattered our world. At the tender age of 16 months, Marko was diagnosed with neuroblastoma." Jelena, Marko's mum
Initially, the neuroblastoma was classified as a low-risk, localised tumour. Surgeons at the Royal Children's Hospital in Melbourne successfully removed a large tumour the size of an orange from his tiny body. We were assured that he was cured, as historical data indicated a 98% survival rate for children with this type of neuroblastoma. The only potential complication mentioned at the time was the slim chance of tumour regrowth, which could be addressed without significant implications for Marko's future development.
Relieved and beyond grateful for the positive news, our family slowly returned to our normal routines. My husband and I went back to work, our three boys went back to school and daycare, and life began to feel normal again.
“Although the experience was horrific and terrifying, it prompted us to reflect on what was important and it offered us a fresh perspective on our life and values. It made us stronger as individuals and as a family.” Jelena, Marko's mum
However, this newfound sense of happiness was short-lived. In October 2018, Marko started limping and developed a fever. We sought medical attention at the Royal Children's emergency department, and he was diagnosed with septic arthritis in his right hip. Marko underwent surgery to clean out the joint and start an eight-week course of antibiotics. During this treatment period, his oncologist reiterated that he was indeed cured of neuroblastoma and this episode was just a coincidence.
Unfortunately, the specialists were mistaken. Marko's fever and limp persisted, leading to another admission to the emergency department. Orthopaedic surgeons ordered an urgent MRI, followed by a CT scan the next day. To everyone's surprise, the scans revealed the presence of another tumour, measuring 10 cm in diameter, at the primary site in Marko's left abdomen. It had infiltrated his left kidney and spread to his pelvis, the long bones of his legs, and potentially his spine.
“Biopsies confirmed metastases in his bone marrow and testicles. Marko was now diagnosed with Stage 4 High-Risk neuroblastoma, which carries a survival rate of approximately 50%.” Jelena, Marko's mum
Although our oncologist mentioned that the addition of immunotherapy had shown improved outcomes in recent years, one in four children in Australia still succumbs to the disease within five years of treatment completion. Moreover, if Marko survived the treatment, there remained a high likelihood of relapse, at which point the prognosis is often terminal.
Thankfully, there was hope.
After extensive research, and consulting with other families facing similar challenges, we discovered a therapy available at Memorial Sloan Kettering hospital in New York, USA. Dr. Brian Kushner, a renowned paediatric oncologist specialising in neuroblastoma treatment, was leading the clinical trial. The Phase 1 trial of this therapy showed incredibly positive results, making it the best opportunity available worldwide to give Marko a chance at life.
Regrettably, this treatment came at a significant cost. As international patients we estimated that we would require approximately AU$350,000 to make this treatment accessible to Marko—a sum beyond our means, even if we were to sell all our possessions.
“The thought of being unable to provide our youngest child with every possible option to extend his life and allow him to grow and make his mark in the world devastated us.” Jelena, Marko's mum
We’re so grateful that the story takes a positive turn from here.
Thanks to the incredible generosity of supporters, friends, and family we were able to make it possible for Marko to travel to the U.S. for treatment. Marko successfully completed frontline treatment and received the bivalent vaccine in New York City.
He remains in remission, happy and healthy (touch wood) with the only known side effect being mild hearing loss caused by chemotherapy.