Sweet Sienna’s Brave Battle With Neuroblastoma

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by Lucy Jones

Sienna was born in London in July 2007 and was a perfectly happy and healthy baby girl. When Sienna turned seven months, we moved to Sydney, as we had always dreamed of living there and had visions of a wonderfully relaxed life by the beach.

However six weeks after arriving, Sienna had a temperature and she seemed a bit off colour so I took her to the doctor who examined her, thought it was a common infection and that paracetamol would sort it out.

 

 

When the temperature reappeared two days later we decided to take her to Sydney Children’s Hospital in Randwick to be checked. We believed we were probably being overcautious and typical first-time parents, but the emergency doctor told us he did think that further investigation was required, as her stomach seemed to be slightly distended. We were still not suspecting anything serious and waited innocently for the results of the CT scans.

Two doctors appeared to tell us the news that a very large tumour had been found and our world fell apart.

Oncologists and a social worker arrived and we were told that lots of tests were needed, but they could not confirm what exactly it was until the biopsy result came back from the US, which would take two to three weeks. During the tests and the weeks of waiting, Sienna’s tumour grew rapidly and when the result came back we received the worst news possible. Sienna had the most aggressive type of neuroblastoma and she needed to follow high-risk treatment, which involved six rounds of high dose chemotherapy followed by surgery, a stem cell transplant and radiotherapy. We were told Sienna had about a 40% chance of survival.

 

 

Sienna went through all the treatments and bounced back each time amazingly well and she hit all the milestones – she showed such a strength of character, even at the age of 12 months, and we were delighted when after seven months of treatment Sienna was declared to be in remission.

But it was not to last. During routine scans in September 2009, at two years and two months of age, we received the devastating news that there was a new tumour. Despite further treatment and hopes to start a clinical trial, the disease became increasingly aggressive and we were told the news that no parent ever wants to hear: our daughter would die from this disease and there were no further options. 

Our darling daughter was very brave and if personality alone could be the determining factor she would have beaten this disease hands down, but her neuroblastoma was just too aggressive. Sienna became a little angel on 3rd February 2010. She was just two and a half years old. Sienna missed meeting her little brother Jamie, who was born five days later. 

Though little-known, neuroblastoma is the number one cause of cancer deaths in children under five years of age. It is the most common solid tumour of childhood and is significantly underfunded compared with many adult cancers. Only 50% of children diagnosed with aggressive neuroblastoma will survive and these figures haven’t improved in over 10 years.

 

 

I started fundraising in 2009 shortly after Sienna was diagnosed as I was so shocked that I had never heard of this disease despite it being so aggressive with low survival rates. My fundraising developed thanks to the support of other families affected by the disease and in 2010 the charity Neuroblastoma Australia was established. To date more than $1.7 million for research into this disease. Our biggest annual fundraiser is the Run2Cure Neuroblastoma, which will be held this year on Sunday 2 June in The Domain. 

This family fun event features a range of running distances (1k,3k, 5k and 10k) and a huge array of children’s activities, making it an exciting day out for families. There really is something for all ages! Last year 6,000 people joined in and raised more than $300,000. We hope to go even bigger this year and now is the time to register!

Visit www.run2cure.org.au to sign up as an individual, family or group, and consider creating a fundraising page. There are some fabulous prizes available for reaching fundraising milestones, all for a very worthy cause.

The options are:

To find out more about Neuroblastoma Australia or to make a donation, visit www.neuroblastoma.org.au. We look forward to seeing you at the Run2Cure!

Run2Cure Neuroblastoma – because all kids deserve the chance of a long life.