Edinburgh cancer teen Kira living life to ‘absolute max’ on wonder drug calls for kinder treatments for kids
An Edinburgh teenager who is fighting a rare cancer is living her life “to the absolute max” thanks to a wonder drug, and has called for kinder treatments for children living with the disease.
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Kira Noble, 18, was diagnosed with aggressive cancer Neuroblastoma at age eleven and has spent several years ‘institutionalised’ in hospital undergoing gruelling cancer treatments.
After enduring twenty rounds of chemotherapy Kira is currently fighting her sixth relapse – but she feels able to live a more normal teenage life, after taking wonder drug Lorlatinib.
The former Firrhill High student, known as ‘Kira the Machine’ for her resilience in the face of the disease, was dealt a major blow in 2019 when doctors said her illness was incurable but treatable.
However, her family said she has made massive improvements since she started taking the experimental drug two and a half years ago, while it was still going through clinical trials.
Just weeks after Kira recovered from Covid-19 her mum Aud told the Evening News it’s a ‘dream come true’ to see her daughter reclaim her life, after watching her suffer years of harsh treatment.
Posting on her Facebook page for childhood cancer awareness month, Kira wrote: “This is why research is so important. Just look at the difference this drug has made for me. We need better, kinder treatments for kids with cancer. “
Aud, 55, also wants more research into targeted treatments for kids with cancer.
Neuroblastoma, a cancer that develops in nerve cells, affects around 100 children a year in the UK and has the lowest survival rate of all childhood cancers.
Mum-of-two Aud said: “We desperately need kinder treatment for kids. Kira went through 20 rounds of chemotherapy in over four years. It's barbaric for kids to endure that, while their bodies are still developing. Chemo is like a wrecking ball to the body. The difference on this drug is incredible.
"Kira has a job in retail that she loves, she goes out with her friends and is really into health and beauty. She got a place at University but has deferred it to next year. She wants to just live for a bit, after so long being institutionalised and attached to machines. Sometimes she was in hospital for months on end.
"We were at a routine appointment at hospital recently and I noticed Kira still had a stamp on her hand from a nightclub. I couldn’t believe this was my girl. Out living her life and enjoying herself. It was a life affirming moment.”
"It’s been so frustrating as a parent. It’s my job to be there for her but with cancer I can’t fix it. It was awful to see my girl go through these brutal treatments. I want to keep her safe from harm, but that’s taken away from you with cancer. At the start I believed she’d get treatment and be cured. Instead we’ve had to accept the cancer is incurable but it is treatable. The fear never goes away. At the drop of a hat the cancer could progress again. There are no guarantees. But she’s doing so well. Her life has never been this close to ‘normal’. I constantly hope and pray the drug keeps on working.”
After months of being forced to isolate during lockdowns Kira got ill with covid-19 last month. But she has fully recovered and is back to enjoying life again.
Aud added: “She is currently living her best teenage life to the absolute max. I had lived the last year and a half worried out of my mind about her catching covid-19. But fortunately it was a mild case. She’s back to living her life again and enjoying every minute. I could never have dared to dream she could have this life. It really is a dream come true.”
In 2018 almost £500,000 was raised in a few short weeks to allow Kira to have surgery in the US, which was dubbed a success.
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 doesn't have to travel for treatment, which is being funded by the NHS. The Alk Inhibitor as part of a trial by pharmaceutical giant Pfizer.
The family have kept supporters updated throughout her journey on the Facebook page "Kira the Machine" which Aud says has become a source of hope for patients across the world.
Aud added: “We never knew the Facebook page we set up would turn into this place people from across the world would come to for updates on Kira’s experience on Lorlatinib. People tell us all the time that Kira is giving them hope.”
"We’re so grateful to scientists, to Pfizer for granting Kira the use of this drug, Kira’s medical team, charities like Solving Kids Cancer and all the people who have supported us to get here.”
In a message on her Facebook page Kira said:
"As an older patient with Childhood Cancer I can use my voice to explain to people how brutal chemo treatments are for kids like me . The last chemo I had was Cyclophosphamide. It was developed in 1959 and is still being used to treat children. Kids need more effective treatments.”
“I have continued to keep well and the ALK inhibitor Lorlatinib has kept my cancer stable. For two and a half years I’ve been able to live my very best teenage life with minimal hospital attendance. Two and a half years of living life like any average teenager. Give me this kinder treatment any day and not brutal chemotherapy that didn’t actually work for my cancer. This is why research is so important. Just look at the difference this drug has made for me. We need better, kinder treatments for kids with cancer.”