Lulu was a bright, bubbly, joyous child with no health issues or concerns – but when she was eight months old, she had a fever that wouldn’t go away and her family knew something was up.
At first, her parents thought it was teething issues, so they took her to the family’s local hospital for a check-up. Many doctors and tests later, Lulu’s fever was still refusing to dissipate and she was sent to the Sydney Children’s Hospital, Randwick for a second opinion. They never made it back home.
It was there that doctors found a tumour, the size of a grapefruit, in her abdomen and extensive cancer in her bones and bone marrow. She was diagnosed with stage 4 neuroblastoma and started immediately on chemotherapy.
Neuroblastoma is the most common solid tumour of childhood arising from nerve cells which run up the child’s abdomen and chest and into the skull following the line of the spinal cord. The most common site for the tumour to grow is in the abdomen.
The average age of children being diagnosed with neuroblastoma is just two years of age and children with aggressive forms of the cancer only have a 50 per cent chance of beating the disease. In addition to overall poor success rates, a third of the children who do survive will have long term side effects from their treatments. Neuroblastoma is the number one cause of deaths in children under five years of age.
Lulu did not respond to the first four rounds of chemotherapy which meant her case was upgraded to high-risk. At only age three, she had undergone a dozen rounds of intensive chemotherapy, several surgeries, a transplant, radiation and an immunotherapy trial.
Lulu’s mum, Josi says: “When your child is diagnosed with cancer, your whole world comes crashing down and life as you know it will never be the same.”
“Some people never get the chance to meet their hero, but I gave birth to mine. My precious Lulu really is a superhero with an invisible cape. The courage, bravery and resilience she has shown during years of grueling treatment is nothing short of phenomenal.”
Lulu with Mum Josi at Run2Cure
Lulu’s family knows full well the utter importance of the need for breakthroughs in scientific research that lead to new and innovative drug discoveries that are safer, more effective and less toxic.
In 2010, two families, both with children diagnosed with neuroblastoma, established Neuroblastoma Australia – a charity that has since raised over $1.3 Million for dedicated research projects into neuroblastoma.
Neuroblastoma Australia’s mission is that, via vital research, all children with all types of neuroblastoma can survive and lead long and healthy lives, free from the side effects of their treatment.
The charity’s main fundraising event is Run2Cure Neuroblastoma and it takes place on Sunday, 4 June in the Domain, Sydney. There is a timed 10km, 5km, 3km fun run with a 1km Little Heroes fun run for children 5 and under with their families – prams are very welcome too.
There will also be lots of fun children’s activities including pony rides, face painting, kindy farms, jumping castles and food stalls. Neuroblastoma Australia need the support of the whole community to help raise $150,000 for research from this year’s Run2Cure Neuroblastoma. Please visit run2cure.org.au to register and further information on the fun run. Early bird prices finish 2nd April.