Dialog Box

Helping Nicolas Ribbe

Helping Nicolas Ribbe

raised of
$100,000 goal
Thanks to
426 supporters
I have had the privilege of growing up within a small, tight-knit and loving family and have been lucky enough to see many wonders of the world. I’ve been on adventures; climbed mountains; ran marathons; bopped along at music festivals; and met the love of my life.

Throughout the first few years in the corporate world, I worked as hard as I could so my fiancée and I could start the next chapter of our lives together. We were planning on moving interstate from Sydney to Perth; we had secured work there, put a deposit on a house; packed up our two crazy fur babies; all ready for us to start trying for a family. All our hard work had seemingly paid off – that dream was firmly in our grasp, and we could hardly contain our excitement. A few weeks later, on the 21st of October 2021, everything changed.

Our lives were turned upside-down and inside-out, after an initial strong reaction to my COVID vaccination I ended up in the emergency room, where there was a devastating discovery of a large cancerous tumor on my liver. We soon found ourselves sitting with my newly appointed oncologist, who explained that I was diagnosed with advanced fibrolamellar hepatoma – an ultra-rare cancer approximately only 1 in 5 million people have it, with no real treatment protocol, and a very poor prognosis. My tummy sunk when he said I could expect a possible lifespan of between 3 months to 3 years. In that dark moment, I remember thinking that it was exactly 3 months until my 31st birthday, and whether I would live to see it and that it might be the last Christmas with my family.

Completely stunned, Vic (my fiancée) and I sank into darkness listening to all the medical talk, unclear treatment pathways, limited data and the harsh reality of not being able to start a family naturally. The doctors ran several tests and scheduled follow-up appointments, whilst our family provided positive encouragement from Europe, but we really needed them closer to us for emotional and physical support. With the world still firmly in the grip of the global pandemic, we started working to make sure our nearest and dearest, would be able to join us. We wanted to enjoy the little time we had left.

I was due to start systemic treatment at the beginning of November since surgery was not an option. We were recommended to conduct one more PET scan to review the spread of the cancer. I received a heart-stopping phone call the very next morning from my oncologist. Low and behold, some small medical miracle had occurred. My scans, which only 4 weeks prior, had shown what appeared to be metastatic disease, had significantly cleared. All of a sudden, the possibility of surgery was back on the table, which held the promise of a much better prognosis. It is safe to say my doctors were astounded by the scans. For me, it seemed too good to be true.

I had my surgery within a week. My whiz-bang surgeon removed half my liver, visible cancer around it and some enlarged lymph nodes. I am still recovering and in a lot of pain from the surgery and I will require cancer treatment to kill any remaining cells. I think about the fact that despite this good turn of events, fibrolamellar is aggressive and more than likely to recur, with an 80%-100% reoccurrence rate. The data around fibrolamellar is incredibly limited around the world, so I paid to have my tumor flown to America to have various cancer treatments tested on it, to help shape the best next steps for my treatment pathway. 

I know our dream of starting a family in Perth is unlikely and I know my life won’t be the same now, I will require regular scans, cancer treatment and likely more surgery. All of which have harsh side effects on Vic and I’s everyday life, mental wellbeing and financial income. No one knows how much time I have left but I am determined to fight my fibrolamellar, together with Vic, my family and friends, my fantastic medical team and amazing advocates. I want to make every day count, I will pursue medical testing, various treatment options, clinical research and holistic care pathways – whatever it takes.

So here is my plea to you: please give what you can so I can access medicines in Australia, which aren’t readily available and need to be funded by myself as the patient, for my first round of treatment. You may not only be sparing my life but other Australians who will be able to rely on the findings from my treatment regime to help them on their journey.

I will try every method to fight this little-known cancer and maybe even have a positive impact on any Australians who may find themselves on the same dark path. I want to keep loving life, and just maybe, I can help shine a light for all of us with fibrolamellar.

Thanks to our supporters