Marko's Smile - Help Marko Beat Neuroblastoma



Marko is our youngest baby of three. He has the most precious smile and gentle, caring personality. Unfortunately, in the two short years of his life he's already endured more than most of us would in our lifetime.

Following almost six weeks of persistent tummy problems and a further couple of weeks of invasive tests, in April 2018, at only 16 months of age, we received devastating news that Marko had neuroblastoma. Although  a relatively rare form of cancer, neuroblastoma is one of the most common malignant tumours in children under the age of five.

Initially, Marko's tumour was classified as a low risk, localized neuroblastoma. The large tumour size of an orange was removed from his little body at the Royal Children's Hospital in Melbourne and we were reassured that he was cured - past clinical evidence indicated that children with this type of neuroblastoma have a 98% survival rate. 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.

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 daycare and life was getting back to normal. The whole experience, although horrifying, also provided us with an opportunity to do some extensive soul searching, gave us a new perspective on life and the values that shape us and made us much stronger as individuals and as a family too.

But this newly found bliss would not last long. In October 2018, Marko started to limp and developed a fever. As the symptoms persisted, we took him to the emergency department at Royal Children's again, where he was diagnosed with septic arthritis of his right hip. He underwent surgery to wash out the joint and was put on a 8 week course of antibiotics. 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.

Regrettably, the specialists were wrong. Marko's fever and limp never fully subsided, and following yet another admission to ED, orthopaedic surgeons ordered an urgent MRI, followed by a CT scan a day after. To the ultimate surprise 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 now has Stage 4 High Risk neuroblastoma which has about 50% survival rate. Our oncologist advised us that with addition of immunotherapy these rates have shown improvement in recent years, but one in four children in Australia still die within 5 years of treatment completion. Should Marko survive this treatment, there is still a high chance he would relapse, at which point the majority of patients are considered terminal.

Luckily, there is hope!

Following extensive research of various clinical trials available across the globe and consultation with other families going through a similar ordeal, we were made aware of a therapy available at Memorial Sloan Kettering hospital in New York, USA. The trial is led by Dr Brian Kushner, a renowned paediatric oncologist who specializes 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. This amount is needed to cover medical expenses as well as a year of having to live in New York for the duration of the trial, or make multiple trips back and forth. Should this eventuate, Marko and I will travel to NY alone once he finishes frontline treatment, and my husband will stay behind in Melbourne with the two older boys so that he does not lose his job and the kids continue their education.

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. We are raising our kids to be selfless, to show positive values in their every action and believe that the main purpose of life is to make this world a better place for everyone.

Please, please, please help us ensure that Marko gets this chance to achieve his full potential! No matter what the outcome of this journey is, our family will endeavour that our every action be directed towards giving back to the wonderful community that has shown so much love, strength and compassion to make one little boy smile again.

Any unused funds will be donated to charity to help further research into finding a cure for this terrible disease.

With our heartfelt gratitude,

The Magic family

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