Joy as wonder drug allows courageous Kira Noble to ‘reclaim her teenage years’
A brave schoolgirl who has undergone 20 rounds of chemotherapy in her short life has managed to reclaim her teenage years thanks to new trial treatment which is shrinking her tumours and giving her “freedom” from her persistent cancer.
Kira Noble, 16, was first diagnosed with Neuroblastoma at just 11 years old and has undergone five years of gruelling treatment which left her “institutionalised” in hospital for months at a time.
Neuroblastoma is a rare type of cancer affecting around 100 children a year in the UK and has the lowest survival rate of all childhood cancers.
At the beginning of this year, the teenager was dealt another huge blow when she was informed that her cancer was categorised as “incurable but treatable” and care had to move from “curative” to “control and management”.
The gutsy teenager decided that she no longer wanted to subject her body to more “harsh” chemotherapy but instead made the brave decision to try an experimental therapy called Lorlatinib to manage the cancer she had lived with for over a third of her life.
Now seven months in, having started the new treatment in April, the decision has proved to be life-changing and Kira is busy living her “best teenage life” free from the fatigue and nausea of constant chemotherapy.
Mum Aud said: “I am gobsmacked with the positive change the medication has caused.
“I knew it would give her better quality but I didn’t think it could be this good. It is fantastic to see her living this wonderful teenage life.
“Relapsed Neuroblastoma is a hugely challenging cancer to treat. So many treatments / multimodal therapies fail and too many innocent children succumb to this despicable and deceitful disease. It is notorious for continuing to grow/ metastasise whilst treatment is being given.
“We are humbled and truly grateful beyond words to be able to say that recent scan results have shown a further reduction in disease with parts of the cancer being described as becoming ‘ill defined’ and ‘difficult to measure’ by radiologists. This means that the cancer is disappearing.”
With new energy Kira is back at school full-time, attending parties, gigs, and sleepovers with her friends just like “any other regular teen”.
Kira said: “I missed out on so much when I was stuck in hospitals for months on end but now I have been living my best teenage life every day.
“This is something I could only have dreamed of when going through gruelling treatments and socialising with friends and family is the best feeling ever.”
No longer are the teen’s days filled with hospital stays but with “regular teen things” including fake tan, acrylic nails and going to see her favourite bands with friends.
Kira has been back in full-time education for a year and is enjoying her favourite subjects, music and drama.
While she still struggles with “brain fog” due to the intensive chemotherapy she is happy to be back with her peers.
She said: “I’m sitting some National 5’s and Highers, music and drama are definitely my favourite subjects.
“My ability to learn has been affected by 20 cumulative rounds of chemotherapy and I have to put in more effort than your average pupil to achieve the same result but I love the socialisation that school brings into my life.”
The future looks brighter for Kira who is brimming with excitement about everything her new life holds.
She said: “I’m looking forward to Hallowe’en and enjoying the celebrations and parties that’ll bring.
“I’ve also signed up to do an abseil from the Forth Rail Bridge next year for IG2G .
“I’ll be pushing myself to the limit as I’m not that great with heights and my stomach is not the best after all my major abdominal surgeries but I’m up for it and hope to raise some cash.”
The new medication has allowed family life to “get back to normal” and has given mum Aud Noble, 53, and dad Ronnie Noble, 60, the “freedom” to spend quality time outside the hospital with their children, Kira and big brother Kyle Noble, 20.
The family of four managed to eat out for their daughter’s 16th birthday without worrying about her nausea and fatigue which is a “new luxury”.
The Nobles are enjoying their “freedom from hospital life” and the exciting opportunities it is bringing them which is “more then they could have ever imagined”.
Kira said: “I’d like to say thank you to all the Edinburgh Evening News readers who leave me good wishes. When my news wasn’t looking great the readers sent in lots of well wishes and stopped me in the street to wish me well.
“The support has been really lovely.”