Call it a mother’s intuition or a gut instinct but Jelena knew there was something wrong with her two-year-old son, Marko. The doctors, however, kept telling her he was fine. They were wrong. Terribly wrong. And now Marko is literally fighting for his life.
Marko has Stage 4 High-risk neuroblastoma. Up until January this year, doctors believed that the neuroblastoma they removed from his stomach when he was 16 months old was low-risk and he was cured.
“The only complication advised at the time was the slight chance that the tumour may regrow, in which case it would be removed again with no serious implications for Marko’s future development,” explains Jelena.
“The whole family felt relieved and eternally blessed to receive such positive news after several months of the most gut-wrenching thoughts and expectations of the worst. As Marko was slowly recovering, my husband and I returned to work, our three boys to school and day-care and life was getting back to normal.”
But this new-found peace did not last long. In October last year, Marko developed a fever and started to limp. Rushed to the emergency department of the major children’s hospital in Melbourne, Marko was diagnosed with septic arthritis of his right hip. He underwent surgery to wash out the joint and was put on an eight-week course of antibiotics.
Despite his stay in hospital, doctors failed to pick up any sign of cancer.
“During the course of this treatment, he was seen by his oncologist who once again reassured us that Marko was cured from neuroblastoma and that this episode was purely coincidental,” Jelena says.
“I trusted that the doctors were right. Who was I to question them? And yet I couldn’t shake my gut instinct that the doctors had missed something.”
What they missed was a little body riddled with cancer.
After the surgery, Marko’s fever and limp never fully subsided. Jelena knew there was more to Marko’s condition than just post-operative recovery.
“He just didn’t look right to me but, because the doctors reassured us that it was unrelated to cancer, we trusted them.”
Following yet another admission to hospital, orthopaedic surgeons ordered an urgent MRI and CT scan. To the utter shock of everyone involved, the scans showed that Marko had developed another tumour at the primary site in his left abdomen, 10cm in diameter which had infiltrated his left kidney. There were multiple tumours in his pelvis, the long bones of his legs and potential spinal involvement too. Bone marrow and testicular biopsies confirmed that these organs had been affected by metastases too.
Marko’s diagnosis: Stage 4 High Risk neuroblastoma.
Marko now needs to undergo 5-6 cycles of aggressive chemotherapy, followed by surgery, radiation therapy, double bone marrow transplant and painful immunotherapy. This is the most advanced type of treatment available in Australia, yet children facing this diagnosis have only a 40-50% five-year survival rate. The ones who survive face a high likelihood of losing their hearing, fertility, major organ damage and may suffer from both physical and cognitive developmental delays. Furthermore, there is still a high chance of relapse, at which point the majority of patients are considered terminal.
But there is hope.
The family have spent countless hours pouring through research on clinical trials currently being undertaken around the globe. Their research has led them to discover a therapy offered at Memorial Sloan Kettering hospital in New York, USA. The trial is led by Dr Brian Kushner, a renowned paediatric oncologist who specialises in neuroblastoma treatment. The Phase 1 trial of this therapy has shown extremely positive results to date, and it seems that this opportunity is the best hope available in the world at the moment to give Marko another chance in life.
Unfortunately, this treatment does not come cheap.
“As international patients, it is estimated that we would need approximately AU$350,000 to make this treatment available to Marko – this is money we do not have even if we sold all our possessions.”
“We are absolutely devastated at the thought of not being able to provide our youngest baby with every possible option to extend his life and give him an opportunity to grow up and make his mark in the world.”
“I trusted that the doctors were right and I live with the guilt that I should have been more aggressive and pushed for more tests. But that’s in the past, and I don’t believe the specialists were truly negligent. However, I do wish to appeal to all parents to trust their gut instinct and push, push, push for more tests if they feel something is wrong. After all, doctors only see your child for 10-15 minutes at a time; you are the ones who know how to read their every tear.”
“Our family is now focusing on the present and Marko’s future. We are determined to save his life which is why we have set up a gofundme page: https://www.gofundme.com/markosmile”
Marko’s family are extremely grateful for all donations. If you can’t donate, you CAN still help. Share this story on your Facebook page or other social media forums. The more people this story reaches, the greater Marko’s chances at life. Let’s get Marko smiling again!
Any unused funds will be donated to charity to help further research into finding a cure for this terrible disease.