The worst thing a parent can experience.

Lucy Jones Monday 30 January 2012 9:57am

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Lucy and 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, February has been a devastating time of year for me and my partner, Oliver.

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 0-1percent chance of survival. Our world fell apart. How were we going to save our daughter from this awful disease?

Sienna

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 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 woke up every morning for the first year hoping that what had happened was really a nightmare – I then had that terrible feeling and realisation that Sienna, my precious little girl was not there and would not be coming home.

I started fundraising for Children’s Cancer Institute Australia (CCIA) when Sienna was first diagnosed. I chose to fundraise for neuroblastomaresearch because I knew back then – and I still believe today – that neuroblastoma, and all childhood cancers for that matter, can be cured. But not without medical research.

There is hope. February marks Gold Ribbon Month, a month dedicated to childhood cancer research and run in David Jones stores across Australia. International Childhood Cancer Awareness day also falls on February 15 – but the problem is, I just don’t think there is enough awareness.

Every February, I hold a Gala Dinner in honour of Sienna. This February is no different with the dinner being held on February 17. With the help of a remarkable team of family and friends, I’m hoping to raise over $120,000 at this year’s dinner. I’m lucky enough to have continued support from Peter Overton, Mark Beretta and Natalie Barr. This year Jack Vidgen will perform and we have been given some truly amazing prize packages. Our website is called Neuroblastoma Australia and all information can be found there. It is a website not only used as a means to fundraise, but also as a support network for families affected by the disease.

In the past three years, my friends and I have raised nearly $300,000 and every cent has gone towards CCIA’s research into neuroblastoma. And progress is being made! There are clinical trials underway for neuroblastoma, thanks to CCIA’s research. Just last year, CCIA scientists made a new breakthrough, a discovery that can lead to big changes and great success. You can read about it here.

Sienna and I are also the face of Gold Ribbon Month. I started to support this campaign last year because I thought my story might encourage people to donate, to buy a gold ribbon or pen next time they visit David Jones. I hoped my story would make a difference. I still hope to make a difference, to contribute to the cure that I know CCIA can find. I don’t want to see children dying, I want to see them surviving and living healthy lives. That’s what CCIA is dedicated to achieving.

If you can afford nothing more, please buy a gold ribbon and wear it proudly in February. For $3, you’ll be raising the profile of a cause that sadly affects 600 Australian families each year, and takes the lives of three Australian children every week. We can turn these statistics around. But we need your support.

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 years, and is the inspiration for Lucy’s website and her  fundraising efforts. Lucy is a dedicated community fundraiser for Children’s Cancer Institute Australia’s (CCIA) neuroblastoma research projects and has contributed nearly $300,000 over the past three years. Lucy’s biggest fundraiser of the year is Sienna’s Frangipani Gala Dinner, held every year in February in honour of her brave daughter. All funds raised from the event are donated to CCIA’s neuroblastoma research.