44 Kilometres for 44Kids – Running a marathon for children affected by the aggressive childhood cancer neuroblastoma

Running for me is my daily meditation and the key to my health, well being and quality of life…this was reinforced for me after 14 days of home isolation for COVID19.

I was never a runner, when I was younger I had to walk at the 150m mark of the 200m.  In 2008 my husband ran the Melbourne marathon and at the start line I could not believe the variety and diversity of people that were running…I was inspired to give it a go.  I was running 50 meters and walking 100m for 4km when I started.   I signed up for the Mother’s Day classic and after 8 months training, I ran the 7km at 7.5min/kms. Next was the 12km City to Bay which I completed on my 40^th birthday.   I wanted to keep running so that I could keep up with my two boys who were 8 and 9 years old.

In 2014 my friend’s son Jai went into palliative care at 7 years old.  At four Jai had been diagnosed with neuroblastoma, a cancer where the average age of diagnosis is 2years old and the survival rate for the aggressive forms is 50%.  

After his original diagnosis Jai went through 18months of surgery, chemotherapy, radiotherapy and immunotherapy and the cancer went into remission.  He got to start school, play sport and play football with my sons.  When the cancer returned his Mum Karen, mentioned that supporting research into finding a cure was the only way to help.  As a community 85 of us ran the 12km City to Bay to raise over $35000 for research into childhood cancer.  Jai passed away in March 2015 just before his 10^th birthday.  I made a promise to “never Give Up” and to do what I could to continue to raise awareness for neuroblastoma.  Jai opened a window for me into childhood cancer.  I followed the stories of so many children and was in awe of the courage and determination they showed.  I wanted families to know that their children mattered.  In my trail runs I would write the names of the children on a rocks, one for each kilometre and place the rocks in a spot with the best view I could find.  This helped me to get through the longer trail runs.  

With my 50^th birthday rapidly approaching I decided to attempt my first marathon.  Jai’s favourite football player was Corey Enright from Geelong.  Jai had visited Corey at the Geelong Football Club and formed a friendship.  Corey wore a black armband, during a football match, in Jai’s honour.  Corey Enright’s guernsey number was #44 hence the reason for choosing the Great Ocean Road as my first marathon, 44km.  So I registered for the Great Ocean Road marathon on the 17^th May 2020.  My plan to run 44km for 44 kids.  Each kilometre would be for a child impacted by neuroblastoma.  I decided to fundraisie for Neuroblastoma Australia a registered charity which is focused on raising funds for critical research so more effective, less toxic treatments are developed and ultimately a cure for neuroblastoma is found.

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 lifelong 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 their stories so that others will begin to understand what neuroblastoma is and why we need to find a cure.

SO…

Training was going well with 8 weeks to go and COVID19 hit us.  The marathon has been postponed until August 22^nd.  I am determined to do it, but also committed to run it no matter what, so if the event is cancelled, I will run in my local area or even on a treadmill.  More than ever these families need to know we care.  If the Australian health system struggles, these children will be on the frontline.  When COVID19 has a vaccine and the world comes back to normal these children will still be waiting for better treatments and their cure.  

Read about all the children is running for  or donate $4.44  to Natalie’s page by visiting www.neuroblastoma.org.au

By Natalie Bunworth