Sadly, precious 8 year old Olivia Lambert passed away on Tuesday 14 August 2012 after a 6 year battle with neuroblastoma, a rare and very aggressive childhood cancer. Her courage and determination to beat this disease against all odds captured our hearts and inspired those who were privileged to meet her.
Olivia's story is one of a bright and beautiful little girl with an infectious giggle and smile and a fun loving spirit. It is a story about a very special little girl who showed extraordinary bravery, who never gave up and who always put others before herself. It is a story of the boundless love and determination by her parents to give her a normal life while striving tirelessly to beat this insidious disease.
Here is Olivia's inspiring story.....
Olivia was initially diagnosed with neuroblastoma in September 2006 when she was just over two and a half years old. After many rounds of intensive chemotherapy, an autologous bone marrow transplant and radiation, Olivia went into remission.
A further 12 months of oral chemotherapy then followed, but despite this intensive treatment, Olivia relapsed in April, 2008. Her prognosis was grim and doctors gave her just 6 to 9 months to live. Notwithstanding this prognosis, her fight continued with further rounds of chemotherapy and radiotherapy which miraculously, again, put her in remission for almost two years.
Sadly, on 2 July 2010, after routine scans in Sydney, Olivia’s doctors advised that she had once again relapsed. This time the disease was more widespread, in her leg and bone marrow. Unfortunately, Olivia’s options for treatment in Australia were limited with doctors only offering her palliative chemotherapy.
The devastating news of 2 July sent the family on a relentless search for answers. Olivia’s mother, Kirsty spent countless hours desperately searching the internet for other treatment options from around the world for relapsed patients. Just when she thought all options had been exhausted, she stumbled across a pilot program being run by a professor at Greifswald University Hospital in Germany. This highly regarded medical specialist believed that Olivia would be a good candidate for his program which uses the ch14.18 antibody which helps the immune system attack and kill neuroblastoma cells. Not currently available in Australia this antibody has been widely researched and trialled in the US and has shown to improve survival by around 20 percent.
With the support of Olivia’s specialists at Sydney Children’s Hospital (SCH), her parents decided to take Olivia to Germany for the antibody treatment with the hope that it will save her life. Faced with substantial treatment and living costs, a fund raising campaign was launched to raise at least $300,000 to cover the six cycles of antibody therapy, possible chemotherapy, medications, tests and scans, as well as travel and living expenses.
Five months into this treatment in Germany, scans showed that the disease had again returned in Olivia's left leg. After repeat cycles of chemotherapy, Olivia's immune system was simply not up to the task! This devastating news was heartbreaking for the family but their quest for a cure was undaunted. In consultation with Olivia's treating specialist in Greifswald, the decision was made to return to Australia and have Olivia undertake a German-developed chemotherapy protocol called "RIST" (Rapamycin, Irinotecan, Sprycel and Temozolomide). Olivia arrived back in Australia on 13 February 2011 to commence this therapy at SCH.
The RIST chemotherapy coupled with radiation therapy cleared Olivia of disease for most of 2011 but the side effects of the treatment were severely debilitating and in November 2011, the decision was made by Olivia's parents, with the support of a leading specialist, to suspend the chemotherapy. Regular scans around that time showed that Olivia was still in remission, although some concerns were expressed about inconclusive findings on the images of her skull.
Scans on 18 January 2012 - three days after Olivia's 8th birthday - again delivered shattering news. Evidence of neuroblastoma was found in her hip and two sites on her skull. This is Olivia's fourth relapse and options are quickly running out to save this little girl. Olivia's parents have been urgently consulting medical specialists in Australia and overseas to try and identify treatment options. As if this news wasn't bad enough, further scans on 24 February disclosed that Olivia had a massive tumour in her right sinus cavity. She underwent a very traumatic biopsy at SCH on 25 February which confirmed the presence of the very aggressive ALK mutation of neuroblastoma. Subsequent MIBG radiation therapy at Westmead Children's Hospital failed to arrest the spread of the disease.
With no further treatment options available in Australia, Olivia's parents turned their attention to a Phase 1 pediatric clinical trial in the US using an orally administered drug called crizotinib. This particular drug is tailored for the ALK mutation form of neuroblastoma and although not effective in all cases trialled, Olivia's family and friends are praying that Olivia will respond. Efforts to get the drug manufacturer, Pfizer, to provide crizotinib in Australia for Olivia failed, forcing the family to relocate to the US. With several weeks lost waiting for Pfizer's decision and Olivia's condition worsening day by day, the greatest fear was that Olivia might not qualify for admission to the trial if the disease had spread to her vital organs. Thankfully, scans taken in the US on 31 May showed that despite widespread disease she has qualified to join the trial. Treatment under the trial commenced Friday 1 June at the National Institutes of Health in Bethesda Maryland. Thankfully the US National Cancer Institute is sponsoring the trial which means that the Olivia Lambert Foundation has stepped up to cover transport, living expenses, etc.
Olivia's scans taken after 4 weeks on the trial indicated no further progression of the disease. While her stable condition was of some comfort, it was disappointing not be seeing some regression of the disease. Olivia returned to Australia on 10 July with her family and remained on the trial.
Olivia continued to defy the odds and remains in high spirits but in late July with over 95% of her bone marrow diseased and evidence that the disease had spread to her liver, Olivia's condition started to decline very rapidly.
Needing blood transfusions every few days and on strong medication to control severe pain, Olivia fought against the odds with her customary courage and determination. Her final 10 days were spent in Clare Holland House, a hospice in the ACT where she passed away peacefully in the comfort of her parents arms in the late evening of 14 August 2012.
Rest in Peace beautiful Olivia....you will never be forgotten.
The foundation is committed to ensuring that Olivia's determination and courage will endure and inspire others facing similar battles to never give up.
You can read more about Olivia's journey by visiting