About Neuroblastoma Family stories Indianna's Story In July 2017, At 12 months of age, only two weeks after her first birthday Indianna was displaying signs and symptoms of a urinary tract infection. Then she stopped eating. After three trips to the family's local hospital and an ultra sound of her tummy Indi was transferred to the Children’s Hospital at Westmead. Test revealed a growing 15cm tumour. Two days after arriving at the Children’s Hospital an MIBG scan and a bone marrow biopsy showed that Indianna had Stage 4 High Risk MNYC Amplified Neuroblastoma that encased most of her vital organs. During the Bone Marrow biopsy Indianna had her central line inserted into her chest so that the first round of chemotherapy could be started in the following days. In the months that followed Indi endured countless days in hospital monitoring her blood levels and temperatures. She withstood five rounds of extremely strong Chemotherapy, 18 blood transfusions, 12 platelet transfusions and over a 100 blood tests. Before the tumour was reduced enough to be removed. The removal of the tumour saw Indi battle through an 18 hour surgery and then another 4 hours in interventional radiology. Following this mammoth battle she then spent seven days in ICU as her body battled to recover. Once she was released from ICU in November 2017 the doctors challenged her poor little body with another round of chemotherapy so that she would be ready for Bone Marrow Transplant. During these five rounds of chemotherapy Indianna lost most of her hearing, this required her to be fitted with hearing aids in order for her speech to continue at an age appropriate level. In January 2018 just five days before the transplant was due to start, a routine CT scan revealed that the tumour had not only grown back but covered almost her whole body. In less than three months after the doctors told us they couldn’t see any more tumour they were now telling us we could apply for compassionate use of a drug from the states!!! Rebecca, Indianna's mum With the help of the drug from the states Indianna bravely fought for another three months before she was taken from us at 22 months of age. Indi was funny, cheeky and outgoing. She loved to be the centre of everyone’s attention and even while enduring high strength chemotherapy She found the strength to play peak a- boo with the nurses and charm the doctors with her smile and incredible dimples. Indianna will always be remembered for riding her IV pump through the Hospital with a huge grin on her face and the largest chocolate muffin in her hand!! High Risk MNYC Amplified Neuroblastoma is like a wildfire, it is extremely hard to contain let alone beat, and this is why more research is needed to be able to give children like Indianna a higher chance of survival. No family should have to endure Christmas without their 22 month old daughter! Rebecca, Indianna's mum Indianna tragically passed away in April 2018 at the age of just 21 months. Neuroblastoma Australia aim to support families who have been diagnosed with neuroblastoma. Visit our Family Support Section to connect with other families who are dealing with this devastating disease. Manage Cookie Preferences