Marko's Smile - Help Marko Beat Neuroblastoma

$247,207 of $350,000 goal

Raised by 3,210 people in 7 months

We are thrilled to advise that with all sources combined, WE HAVE REACHED OUR TARGET required to access the vaccine treatment for Marko. Thank you all for your amazing generosity, we have no words to express how grateful we are!

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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

https://www.facebook.com/markosmile/



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Please, please, please if you can, urgently support little Eleanor to access a neuroblastoma trial in the USA.

She is also Royal Children’s patient with the same disease as Marko, and has unfortunately relapsed in her brain just 3 months after completing her treatment in Australia. Australia does not have any treatment protocols for treating brain relapse, and an antibody trial in New York is her only hope. Her family is in need of funds urgently, and any amount you could contribute will be hugely appreciated!

Thank you!!!

https://www.gofundme.com/f/eleanorsfight
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Celebrating the last day of Marko’s radiation therapy, woohoo!

Four weeks have flown in the blink of an eye and, all in all, it’s been quite a pleasant experience. Ok, pleasant might be an overstatement, but let’s say it’s been very pain free. The team at Peter Mac Cancer Centre were super organised and so so welcoming and friendly that Marko really made absolutely no fuss about his daily trips and daily “sleeps”, as the kids like to call the general anaesthetic. And he’s experienced no side effects whatsoever from the radiation itself, which is absolutely amazing. Of course, there may be some long term issues such as short torso, because the two spinal vertebrae close to the original tumour could not have been adequately protected. He may also get high blood pressure later on in life and there’s a small chance the radiation could cause another tumour to appear, but in the grand scheme of things these are risks very easy to ignore. We are happy that this chapter of his treatment has now been succesfully ticked off and look forward to moving onto the next one, which is immunotherapy. It is actually very scary to think that for children in Serbia and other Eastern European countries government covered cancer treatment stops here! We sometimes take for granted the access to novel therapies available in Australia for granted, and complain about not being supported to explore the overseas trials, but all in all we are so grateful for all the opportunities we have been able to receive in this country. I just pray that all children all over the world be given the same chance at life. If anyone deserves it, it is them.

But back to Marko - following the appointment at Peter Mac (and our celebratory lunch), we went down to the Royal Children’s to meet Marko’s principal oncologist to check on a few things and discuss next steps. There’s a whole shabang of scans booked for the 28th of August (CT, PET MRI and mIBG) to make sure he is still disease free, and then we’ll start immunotherapy with neuroblastoma antibodies on the 2nd of September. The whole therapy runs over a course of 100 days. We’ll have to be in hospital as inpatients for 6 days, then have a couple of weeks off followed by another 6 day admission, and it goes over 5 cycles in total. So if all goes to plan, Marko will complete his treatment in Australia by Christmas!

Now that we know the plan and dates, we’ll get in touch with the doctors at the Sloan Kettering in the USA to start the negotiations regarding the vaccine trial and set provisional dates for our first trip to New York. Still cannot believe we are so close to the end of his treatment!!! The worst is behind us, and we continue to keep all our fingers and toes crossed that never ever again we have to subject any of our kids to toxic chemo and damaging radiation. Please continue to keep our family in your thoughts and hope with us for the best possible outcome!

Sending our love to all,

Jelena, Andrija & Co
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Received this beautiful collage yesterday from wonderful Zuki Sadinlija and her colleagues from Norwex.

With support and positive energies coming from so many wonderful people, it is no wonder that Marko is handling his illness so well. We have no words to describe how fortunate we feel to feel that much love coming our way - thank you from the bottom of our hearts! ❤️❤️❤️
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I haven’t posted for a while as we needed to take a break after the whirlwind of events that had happened a few weeks ago. It felt good to just feel normal again, focused on ourselves, the boys and Marko’s recovery. He is feeling much better overall. His walking is improving daily, there’s more colour in his cheeks, he’s starting to put on weight and his hair is growing back too.

But we’re now back to the high-paced mode of this cancer journey, as this morning Marko had his first radiation therapy session. He’ll have 20 sessions all together, every weekday for next four weeks. Even though he’s cancer free at the moment, the area of his primary tumour still needs to be irradiated to ensure the tumour does not come back. Treatment itself is much less intensive than previous chemo rounds, but we still have to drive in every morning and he has to be under general anaesthesia every time, which is a nuisance. But our little monkey has become such pro at following the procedure that he readily puts the gas mask on his own face and puts himself to sleep... don’t know whether to laugh or cry, but it does make the whole experience much easier to handle.

And so the next stage of Marko’s treatment starts, wish us luck!!!
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Raised by 3,210 people in 7 months
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