Diagnosed in 2009; passed away in 2017

Jess was so excited about her first overseas trip to Europe and Egypt in July of 2009.  However, it was on that trip she experienced back pain which caused her to report to an emergency ward in a hospital in London.  After three hours, Jess and her friends gave up waiting and attributed the pain to a muscular injury.  On her return to Australia Jess’s legs were stiff, as if someone had punched her in the thighs.  Subsequent scans revealed that she had developed deep vein thrombosis on the flights between various countries.  But worse, the scans also revealed Jess had a significant mass on her liver, diagnosed as Fibrolamellar Hepatocellular Carcinoma.

This was the beginning of a roller coaster ride of scans, treatment, and surgery over the next 8 years.

Surgery removed that mass, which had encompassed half of Jess’s liver.  Unfortunately, the cancer surfaced again in Jess’s liver in early 2011 and Jess had further surgery.  She was then prescribed an angiogenesis inhibitor drug called Sutent.  For a period, the Sutent was effective at keeping the cancer at bay.  However, Sutent certainly carried some nasty side effects and was not a cure.

In another two years, the cancer reappeared, this time near Jess’s sternum.  Further surgery ensued, and Jess was placed on a drug called Votrient, another angiogenesis inhibitor whose side effects were not quite as harsh.  The Votrient also proved to be effective for a while but the cancer returned to other parts of Jess’s body.

Jess had two more operations to remove significant growths and began chemotherapy in late 2016.  The chemotherapy was ineffective.  Desperate, Jess also tried some alternate therapy, including whole body hypothermia and Intravenous Nutrient Therapy , but that also proved ineffective.  Jess passed away surrounded by family and friends on 24 March 2017 at the age of 28.

Amazingly, through the years from 2009 Jess continued to live life to the absolute full.  She worked hard, gaining a Bachelor of Justice (Policing) with distinction; she kept a very active social life making many friends; she kept fit; she read great books; saw great films and she travelled.  Gosh, did she travel! – New Zealand, Malaysia, Thailand, Singapore, the UK, France, Monaco, Germany, Spain, Italy, Switzerland, Egypt and Greece.

It is surreal to us that Jess is not with us in the physical form.  However, we most definitely feel she travels with us in some other form.  We include her in our conversations and read to her each day from her favourite books.

The thing that is most disturbing about Fibrolamellar Hepatocellular Carcinoma is that the disease appears to target young people who are health conscious and fit.   It is a cruel disease.  Anything that can be done to further understand, better treat and hopefully find a cure for this nasty disease, the better.