Jai introduced me to the world of Neuroblastoma. 

Jai went to school with my boys.  At 4 1/2 years, old Jai was diagnosed with Neuroblastoma. He went through chemotherapy, radiotherapy, surgery and a stem cell transplant, spending many months in hospital and continuous regular hospital visits.  As an outsider, I was oblivious to most of the details and naively believed that once he got through the treatment that would be the end it.   Jai’s cancer did go into remission. An enthusiastic sportsman, he got the chance to play basketball, cricket and football as well as start school and make many close friends. 

However, I clearly remember the first day of school in 2013 when Jai was not in the first assembly and one of the parents telling me “Jai’s cancer was back and he had been put into palliative care” …. now palliative care meant preparing to die and Jai was 7 years old, this could not be happening, but his parents had been told there were now limited treatment options.  I was to learn there is no cure for relapsed Neuroblastoma and Jai’s was an all too common story.

Jai opened a window for me into neuroblastoma and I was shocked and horrified by what I learnt. 

  • The average age of diagnosis for neuroblastoma is just 2 years old
  • Only half of the children diagnosed with aggressive neuroblastoma survive
  • The children that do survive often have long term side affects from the actual treatments used 

Jai battled neuroblastoma for 5 and half years and was taken from his family and friends on the 5th March 2015 just before his 10th birthday. Jai will forever be 9, as his mates grow older, go to high school, start dating girls, learn to drive, start work and even have their own families.  Neuroblastoma has stolen these milestones from Jai and his family and friends.  No family should be told there are no more treatment options for their child. I promised Jai I would keep fighting to find a cure and “Never Give Up”

While Jai opened my eyes to neuroblastoma and started me on my quest to raise awareness, what has kept me going is the most amazing and wonderful children I have met along the way.  I have been touched by so many children fighting Neuroblastoma and their families.  I have begun to understand just what is meant by terms such as "chemo", "radiation" "stem cell transplants", seen the devastating impact these have on small children, how helpless and heartbroken the parents are as they support their children through these treatments, knowing it is the only hope their child has but being told the side effects may be permanent of even fatal. The resilience and strength shown by these children is inspiring.   There is hope and joy in these stories as the children who do recover embrace life with amazing energy and determination to make every day count. 

What really stays in my heart is the children, like Jai who are taken by neuroblastoma.  I can only imagine the heart wrenching, crushing and life long grief that their families suffer. For a child that dies so much is stolen, as their lives are never lived.

So when I run, these children are with me. I see their faces and replay their stories.  I wonder what they would think of the location, the scenery and view.  Hoping some will get the chance to see it for themselves and grieve for those that never will.  I wish with all my heart I could bring them back.  I wonder how I can make a difference.  So as part of running the 44kms of the Great Ocean Road Marathon I want to share these stories so that others will begin to understand what neuroblastoma is and why we need to find a cure.