Meeting Nora, and a busy week

I was privileged today to meet with Nora, a wonderful 6-year-old from Christchurch, who is going on a clinical trial for CAR-T cell therapy in the USA. Nora was diagnosed with a liver cancer when she was just 5, and since then has collected 850 beads. If you’re not familiar with this tradition for childhood cancer, each bead represents a treatment or procedure. That’s 850 times Nora’s tiny body has been stuck with a needle, scanned in a machine or treated with chemotherapy. She’s got amazing resilience and keeps a big smile on her face.

Her resilience is matched by her family, with her parents fighting to keep her alive though the odds have been very poor at times. Miraculously, Nora has been accepted onto one of the first trials I am aware of for CAR-T cell therapy for a ‘solid tumour’ cancer, and soon she’ll be heading to the USA for her treatment.

As with others, this treatment is crazy expensive, and the family have been helped through the generosity of others to make it achievable – there is still time to contribute to the costs of her getting treatment if you have the means to. Check out Nora’s page on Give a Little.

Meeting Nora was a highlight in a week filled with special experiences. I talked earlier in the week with the real estate company Just Paterson in Wellington, who blew me away when they contributed $25,000 to my #DownWithCancerNZ campaign to bring CAR-T cell therapy to NZ. Then I was lucky enough to be hosted at Nelson’s Cawthron Institute, a research facility in Nelson where I could tell 100+ Nelsonians about the breakthroughs being made in cancer research.

And I ticked off a bucket list item when I lectured at a medical school… ok I just gave a talk, but it was in a lecture theatre to around 80 staff from Christchurch Hospital, alongside Dr Rob Weinkove from the Malaghan Institute.

Trying to look like a university professor… but I am pretty sure they tuck their shirts in

I’ve been so humbled over the past year to meet so many people going on their own cancer journeys. Like Nora, most have a determined approach and a smile on their face, but they also are facing the uncertainty, the cost and the heartache of having to battle, often also contemplating doing that in another country.

I hope soon we will see life-saving treatment more widely available.