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Being a parent is one of life’s best experiences. Losing a child to cancer is one of the worst.

Sienna.

In February 2010, I lost my beautiful daughter, Sienna, to one of the most aggressive, unrelenting, deadliest childhood cancers, called neuroblastoma. She was only two and a half years old. Since then, normality has seemed a foreign concept.  The life I had expected to live was suddenly no longer the life my partner, Oliver and I would ever have.

My little girl was normal in every way. She was a fun-loving toddler and had a real zest for life. At nine months, doctors found a tumour on Sienna’s abdomen. It wasn’t a benign, harmless tumour. It was neuroblastoma. And Sienna had the worst possible diagnosis.

What followed was seven months of gruelling treatment at Sydney Children’s Hospital Randwick. Our baby endured seven rounds of high dose chemotherapy, two operations, a stem cell transplant, four weeks of radiotherapy and about 40 general anaesthetics.

We were told a number of times that Sienna could also face secondary cancers due to the treatment or, in fact, die from an infection due to her immune system being shot to pieces. Sienna did amazingly well – she got through every treatment and at the end of those seven months she was in remission. We were so hopeful that this was the end of it.

11 months later, in September 2009, all hopes were shattered as a new tumour was found. We were told if Sienna relapsed she would have a 0-1 percent chance of survival. Our world fell apart. How were we going to save our daughter from this awful disease?

I emailed professors all over the world and generally the outlook was one of gloom, until we found an amazing professor at Royal Marsden in the UK who got Sienna on a clinical trial for a new drug. We had a plan and we had hope, but while we were waiting for the trial to commence six new tumours appeared throughout her body and the cancer spread to her bone. We started chemotherapy to try to hold the disease at bay. We saw five of the tumours responding to treatment and the sixth tumour had also seemed to have slowed down… But just before the next cycle of chemotherapy, the sixth tumour started to grow out of control.

What happened next is beyond words. We watched our beautiful girl helplessly while this disease ravaged her. Sienna lost her battle on 3 February 2010 and her baby brother was born just five days later. I lay in bed next to Sienna. My little boy was kicking inside me as my little girl was being taken away from me.

It was such a strange and unusual feeling. It was like a cross over of two different worlds – worlds so far apart and disconnected from one another, that it almost felt unreal. But it was very real and Sienna was gone.

I started fundraising for Children’s Cancer Institute when Sienna was first diagnosed. I chose to fundraise for neuroblastoma research because I knew back then – and I still believe today – that neuroblastoma, and all childhood cancers for that matter, can be cured – through medical research.

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There is hope.  A lot of people tend to think they can’t make a difference but I have seen how small donations add up. I have organised 4 Gala Dinners in honour of Sienna and these have raised over $300 000 for Children’s Cancer Institute.  In 2010 I co-founded a small not for profit, Neuroblastoma Australia,  with another family that had experienced neuroblastoma. The purpose is to increase awareness and funding for neuroblastoma research and also to develop more of a network for families who are going through the terribly isolating and traumatic experience of neuroblastoma.

Last year we held our first Neuroblastoma Awareness fun runs and were thrilled with the response. This year we have named the event Neuroblastoma Run 2 Cure, to take place on 22nd June in the Domain and the Royal Botanical Gardens. There is a 10km and 5km fun run/walk and a very special 1km fun walk called the Little Heroes 1k, for children aged 5 and under with their siblings and parents.  The theme is superheroes and gives little children the opportunity to help other little children – as neuroblastoma claims more lives of children under 5 than any other cancer. It is a young child’s disease which simply should not still be here.

Lucy and Sienna.

With everything I have experienced I am still dumbfounded six  years after Sienna was diagnosed that more has not been done about neuroblastoma –  the world of research is a numbers game and as neuroblastoma is considered rare, it has attracted relatively little funding. For me it is inhumane to allow more than 25 little children to pass away every year in such a cruel way. More money needs to be raised now so we can support and build on current research to save children diagnosed in the future.

We hope to raise over $100,000 at this year’s  Run 2 Cure for neuroblastoma research. This amount of money makes a real difference to Children’s Cancer Institute, which undertakes several neuroblastoma research programs and is launching a clinical drug trial in Australia for a new drug to treat children with the disease. Visit www.ccia.org.au for more information.

Neuroblastoma Run 2 Cure will have lots of fun activities for children including live entertainment, pony rides, kindyfarm, jumping castles, face painting, Little Kickers (soccer),  Little Rugby and fun cricket. The Sydney Sixers are also very kindly supporting this event. Please visit run2cureneuroblastoma.gofundraise.com.au to register and for more information.

There are lots of good causes out there, but it’s up to us to give children with neuroblastoma  the chance to live.  We don’t need a miracle for this to happen – just more research.

Lucy Jones lives in Neutral Bay, Sydney and is the Mother of Sienna and Jamie Hoffmann. Sienna tragically passed away in 2010 from neuroblastoma , aged two and a half years old, and is the inspiration for Neuroblatoma Australia’s website,  and her  fundraising efforts. Lucy is a dedicated community fundraiser for Children’s Cancer Institute for neuroblastoma research projects and has helped raise over $650,000 over the past 5 years. For more information,  please email [email protected] or visit www.neuroblastoma.org.au.

Please share this post to help raise awareness for Neuroblastoma Run 2 Cure.

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