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The Worst Thing a Parent Can Experience

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?

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.

Sienna's Appeal has now raised $525 000 which makes a significant difference to Children's Cancer Institute Australia. I am now working with other neuroblastoma families and local mums to create the first Australian Neuroblastoma Awareness Day. The main event will be on 2nd February in Sydney Park and will comprise of a large family fun day with lots of kids activities and then two fun runs – a 10km and a 5km. On top of that there will be Australia's first ever 1km fun walk for children under 5 years of age. We are asking families to come along with their toddlers and show their support – children are welcome to dress up as super heroes or to wear a frangipani which is our symbol for neuroblastoma as Sienna loved frangipanis.  Our 1km fun walk will be called the TOT 2 TOT and the idea is for little children to help little children – neuroblastoma claims the lives of children under 5 than any other cancer.
 
Visit our website www.neuroblastoma.org.au for more details.
 

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