About us
Our story so far...
In 2021 we started to plan our family; Our little happy, healthy little girl Valentina was born in December, just before Christmas. I was so happy to be a father and to share our life with this cute, smart little girl. We knew it would be difficult, with both our families far away and having responsibilities or situations which would not allow them help, at least not initially.
In June of 2022 when Valentine turned 6 months old, disaster struck. I was diagnosed with Terminal Stage IV Cancer. I spent the next months in hospital, fighting to stay alive, the family would visit when they could but it was difficult, to say the least.
After some rounds of chemotherapy and immunotherapy I was allowed to go home, but not in a good state. I would continue to go into hospital every two weeks for more therapies and then spend the majority of the fortnight in bed, sick and in pain. If I was lucky I might have two days a month where I would be able to spend quality time with the family.
The ensuing year continued in this manner
Things were getting better, I had started to recover, but after 30+ treatments my body could not handle chemotherapy anymore. My oncologist suggested another treatment. A drug called Enhertu, made by Astrazeneca.
This drug targets the specific cancer cells in my body, causing a fraction of the collateral damage of conventional therapy. The difference was like night and day. After just one dose I could sit, walk and even run comfortably and most importantly, play with Valentina who was now almost 2 years old.
The catch? Each dose costs almost $11,000 and is administered every three weeks. It is neither subsidised by the government or by our top-level private health insurance.
So what could we do?
I started a GoFundMe to alleviate some financial stress but also created a petition for the PBS to reconsider the decision to make this medication available to everyone who needs it. I managed to get 12,000 signatures in a month or two but the government would not accept it.
I contacted the news and managed to get a story, but still there is not enough awareness and we still do not have a solution. I have written letters to the members of the Pharmaceutical Benefits Advisory Committee and hope that someone will change their mind.
We are about to share our third Christmas as a family, I hope not our last...