Brave Edinburgh teen Kira Noble ‘responding well’ to new cancer treatment

The 16-year-old - known as ‘Kira the Machine’ for her fortitude - learned earlier this year that her Neuroblastoma was incurable and announced she was going to stop chemotherapy.

The Firrhill High pupil instead began using an experimental drug and was told earlier this week that her tumours had shrunk.

Neuroblastoma affects around 100 children a year in the UK and has the lowest survival rate of all childhood cancers.

However, latest scan results have provided Kira with a major boost - allowing her to “live her best life and enjoy being a teenager”.

Kira’s mum Aud Noble said: “We are absolutely delighted to announce that latest scan result shows Kira’s Neuroblastoma to be responding well to the experimental ALK inhibitor drug Lorlatinib.

“There is marked decrease in disease which is fantastic news.

“What an amazing piece of news to be receiving on Kira’s final visit to the Royal Hospital for Sick Children in Edinburgh before it moves.”

Ms Noble said Kira let out a huge “whoop” and punched the air when the scan results were revealed.

“One of its biggest side-effects is the appetite stimulant,” Ms Noble said. “She is constantly hungry and wants to eat often.

“This side effect could however potentially be a good one though for kids who are under-nourished due to the harrowing effects of chemotherapy and the affect it has on kids’ abilities to eat.”

Kira has relapsed four times in five years since she was first diagnosed and has undergone various treatments.

Late last year she travelled to New Jersey in America for Proton Beam Therapy - a less intrusive form of radiotherapy.

However, speaking in March, she said: “I just want to start the next treatment and get on with it.

“I’ve been out every weekend and after school, doing as much as possible.

“Last year I was in hospital for eight months so missed the whole summer and didn’t get to see people. It’s nice to go into school and see people, and just be a teenager.”

The family have kept wellwishers updated throughout her journey on the Facebook page ‘Kira the Machine’.

In 2018 almost £500,000 was raised in a few short weeks to allow Kira to have surgery in the US.

The seven-hour operation, by a world-renowned surgeon at the at the Memorial Sloan Kettering Cancer Centre in New York, was dubbed a success at the time.

In March, Ms Noble revealed Kira was beginning to take an taking experimental drug, Alk Inhibitor as part of a trial by pharmaceutical giant Pfizer.

Kira’s Neuroblastoma harbours an Anaplastic Lymphoma Kinase (ALK) mutation which is be targeted by the experimental inhibitor drug in an “out of trial” setting – meaning she did not have to travel for treatment, which is being funded by the NHS.

Writing on Facebook, Ms Noble said: “We are ecstatically happy with these results. As you all know, we live in the moment we are in due to Kira’s cancer - and this is the best result we could hope for at this moment in time. We want to say the hugest thanks to all of Kira’s supporters for all your encouragement and love that you outpour to Kira . We are so appreciative of you all standing with us through her extraordinary journey.”