Our inspiration – Sienna Hoffmann born 27 July 2007 – 03.03.2010

Sienna’s story

2009 10 17_0019Sienna was born in London on 27th July 2007 and was a perfectly happy and   healthy baby girl. When Sienna turned 7 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 6 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 Panadol would sort it out.

When the temperature reappeared 2 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 so 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 arrived, a social worker 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 2-3 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 (called “mync” amplification) and she needed to follow high risk treatment which involved 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 10 months, and we were delighted when after 7 months of treatment Sienna was declared to be in remission.

Sienna flourished and developed a real zest for life – she was exceptionally busy and energetic and did not believe in sleep! Sienna loved going to the zoo to see her favourite “anmals”, loved drawing and painting, dancing and watching Playschool. She started to play with other children her age and often out-ran them.

2009 07 27_0184

We were of course getting increasingly hopefully that the disease truly had gone but during routine scans in September 2010 we received the devastating news that there was a new tumour.

We hoped it was a benign one which can at times happen, but the surgeon informed us after the operation that it was in every way like a neuroblastoma. We knew immediately the chance of survival after relapse was now around 1 percent. The new tumour however was in a new site and had not spread elsewhere so we embarked on some radiotherapy with some different chemotherapy to follow.

We hoped this would buy us time as a new drug would potentially be available in 2010 which was showing promise. Sydney Children’s Hospital had tried to secure Sienna this drug in 2009 but the drug was in very limited supply so the governing organisation decided it should only be given to children who had not yet relapsed.

Tragically, time was not on our side. Sienna relapsed again at the end of radiotherapy with 6 new tumours appearing.

We were then told the news that no parent ever wants to hear : our daughter would die from this disease. Still with a glimmer of hope, we started on the chemotherapy as we had been reliably informed it had had some very good results and our glimmer of hope in fact turned into a glow when scans revealed that 5 out of the 6 tumours had responded; the 6th tumour was in the original site and had just grown slightly – we hoped with more chemotherapy this 6th tumour would also respond.

Sienna was her usual self – busy as anything, giggling and being cheeky like any other toddler. Sadly, again our hopes were totally destroyed when the 6th tumour suddenly started to grow extremely fast and aggressively. 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. Sienna was just two and a half years old. Sienna missed her little brother Jamie who was born 5 days later. We all miss her dreadfully.

As parents who have lost their precious daughter, we are deeply saddened that there have not been any improvements in survival rates and treatments for neuroblastoma for over 10 years – we know from our 2 year fight that so much more is possible and the cure is definitely out there – it is just a matter of funding and research. In honour of our daughter we are, with other friends and supporters, determined to help raise the profile of this disease and help fund a cure.

Little children at the threshold of life should not have to endure the cruelty of this cancer or the extensive treatments which unfortunately have to be used – please help us find a cure and stop the suffering and save children.
Thank you
Lucy and Oliver

Neuroblastoma Australia
Ste 3, 165 Sailors Bay Rd
Northbridge NSW 2063
0406 991 606
info@nb.org.au
Neuroblastoma Australia Incorporated is a registered charity with GDR Status . ABN 74 173 375 414.