A brave schoolgirl battling incurable cancer shares how a new wonder drug has given her a “normal” teenage life and allowed her to stop chemotherapy.
Kira Noble, 16, was first diagnosed with neuroblastoma—a rare type of cancer that develops from immature nerve cells found in several areas of the body—at the age of 11 and has undergone five years of exhausting treatment.
The teen has endured 20 rounds of grueling chemotherapy since being diagnosed, leaving her “institutionalized” in hospital for months at a time.
Neuroblastoma affects around 100 children a year in the United Kingdom and has the lowest survival rate of all childhood cancers.
At the beginning of 2019, Kira was informed of the devastating news that her cancer was categorized as “incurable but treatable.”
Her care had to move from “curative” to “control and management,” and that is when Kira decided she no longer wanted to subject her body to more “harsh” chemotherapy. Instead, she decided in April 2019 to start an experimental therapy called Lorlatinib to manage cancer.
Kira’s mother, Aud, 53, has described the treatment as a targeted therapy that has so far shown minimum toxicity in adults.
After seven months, it has proven to be life-changing for Kira, who is now busy living her “best teenage life,” free from the fatigue and nausea of constant chemotherapy.
Kira has a new lease of life and is back at school full-time, attending parties, gigs, and sleepovers with her friends.
The delighted teenager said in October 2019: “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 grueling treatments and socializing with friends and family is the best feeling ever.”
Kira’s days are now no longer filled with hospital stays but “regular teen things,” including fake tan, acrylic nails, and joining her friends to watch her favorite bands perform.
She has also been back to full-time education for a year and is enjoying her favorite subjects—music and drama.
Although Kira 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 favorite 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 socialization that school brings into my life.”
Proud mother 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/metastasize 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.”
The new medication has allowed family life to “get back to normal.”
It has given Aud and dad Ronnie Noble, 60, the “freedom” to spend quality time outside the hospital with their children: Kira and their son, Kyle Noble, 20.
The family of four also managed to eat out for their daughter’s 16th birthday without worrying about her nausea and fatigue, which is surely a “new luxury.” They said they are enjoying their “freedom from hospital life” and the exciting opportunities it is bringing them, which is “more than they could have ever imagined.”
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