My joyous lust for life, by girl who’s battled cancer 6 times
How inspirational Kira, 16, def ied odds thanks to bravery and sheer doggedness
I hope to be here in ten years’ time, still loving every minute of it
WHEN she takes her pet dog for his daily walk, Kira Noble is not being ‘brave’ – she just enjoys running through the fields with him to let off steam. When she throws herself into studying for her Highers, she is not being ‘inspirational’ – she just wants to get good grades so she can become a nurse and help treat patients, just like the many nurses who have cared for her.
And when she belts out songs by her favourite band, she is not ‘defying cancer’ – she is simply singing her heart out, because she can.
For although she is only 16, Kira has learned the hard way that life is too precious to be wasted.
Her determination to hit every day full-throttle is all the more remarkable when you consider everything she has had to endure – since the age of 11 she has battled neuroblastoma, an aggressive form of childhood cancer.
Through years of the most gruelling and invasive chemotherapy and radiotherapy treatments, she has improved and relapsed six times.
Time and time again, her long auburn hair has fallen out, ravaged by medicine that left her feeling constantly sick, confined to her bed, watching daytime TV and dreaming of a day she could feel well again.
But now, due to a new, experimental drug, her latest scans have returned miraculous results.
Last week, in an astonishing turnaround, doctors told her that her tumours are shrinking and there is no new evidence of the disease.
Kira is feeling so well that she is back at school and throwing herself into all her extra-curricular music activities, such as playing in the school band and going to gigs.
She is even planning to abseil from the Forth Road Bridge in June to raise funds for the charity It’s Good 2 Give, for which she is an ambassador.
As befits such an exceptional and determined young woman, she has also mapped out her ambitions for her future career.
Determined to give back to those that have helped her, she has revealed she would like to work as a paediatric nurse working in oncology to help children like her who have been diagnosed with cancer.
Last night, she told The Scottish Mail on Sunday how the new drug, called Lorlatinib, had changed her life.
Kira said: ‘It’s not just about still being here, but really enjoying life.
‘I’ve felt so ill in the past and it’s hard having treatment with side effects which stop you doing everything.
‘There are times I temporarily forget I have cancer and instead concentrate on the day I’m enjoying.
‘I’m living my best life now and I think I appreciate it because I know how ill I was. Things that other teenagers take for granted, like going to school every day, even sitting my prelims or doing chores, make my life the way it should be.
‘I hope to be here in ten years’ time, still loving every minute of it.’
Speaking of her career hopes she explained: ‘I know what it’s like and while my nurses and doctors have all been amazing in their help and encouragement, actually having had cancer gives me a completely different perspective.
‘One friend asked if I wouldn’t prefer to get away from all that.
‘However, I think I can really help, not just as a nurse, but because I will know exactly how they feel and that’s important in encouraging them to keep going and live their lives.’
Equipped with her favourite auburn, flowing wig – which she can choose to style in curls or straighten – Kira is determined to always look for the positives in life.
Kira had just started secondary school when she started to suffer from excruciating pains in her side and abdomen in 2014.
Doctors put them down to growing pains or hormones.
But her parents – Aud and Ronnie – continued to have concerns over the following seven months.
After numerous trips to the GP, Kira was eventually given an ultrasound scan where it revealed a huge mass in her abdomen.
Further tests – including a biopsy – allowed doctors to confirm a diagnosis and she underwent a gruelling 15 months of chemotherapy, surgery and radiotherapy, before going into remission in October 2015.
But in early 2016, the cancer returned – sparking her next round of surgery and treatment.
Initially, it looked as if she might have won her second battle, until a routine scan in 2017 showed the tumour was growing again.
Kira had more chemotherapy, followed by surgery in January 2018, but surgeons in Edinburgh were unable to remove all of the cancer.
In the summer of 2018, a pioneering surgeon based in New York offered Kira the best chance yet that she would be cured of the disease.
In a last-ditch attempt to save her life following the return of neuroblastoma,
the family set a target to raise £340,000 to pay for the specialist operation in the US.
Touched by her terrible plight, friends, relatives and even strangers helped smash their target, raising nearly £500,000 through sponsored afternoon teas, bagpacking and barbecues.
It allowed her to have the pioneering operation conducted by a surgeon who specialises in removing tumours other medics have written off as ‘inoperable’.
The seven-hour operation was a success, with the surgeon managing to remove all of the tumour.
In a remarkable display of resilience, Kira almost immediately bounced back after the treatment.
She was back at school and enjoying hobbies as soon as she could manage, such as playing with her dog, studying, performing at concerts with her band, spending time with friends and going to every gig she could fit in.
Her plucky, admirable determination, however, was not enough to keep the cancer at bay. And she has admitted that, despite her outward strength, she has struggled with dark days fearing for her life.
Last February, battling Kira had a particularly devastating meeting with her oncologist.
She said: ‘I’d had a scan in the middle of January and, on February 26, she told me my cancer was incurable but treatable.
‘I can’t describe how I felt. I was glad that nothing was being kept from me but the incurable word hit me hard. I felt better when she explained that incurable doesn’t mean terminal but it was still very hard. I told my teacher and my friends myself.
‘Some of my friends were really upset and I had to comfort them. I have had five years of various hospitals and normal life just stops.’
She added: ‘I was in primary seven when I first got ill and my close friends and I took it in our stride.
‘None of us understood how serious it was but I had to learn very quickly.
‘I thought I would be ill and then get better. I think through the years it’s got harder for my friends. Knowing that you have a friend who is incurably ill makes you fearful for the future and you realise anything can happen, so I’m really the only one who can reassure them.
‘I’m aware I’m known for just getting on with it and I’m good at just forgetting about it, but there have been dark days.
‘There have been times in hospital when I would stay in bed for a fortnight and the nurses and doctors would encourage me almost by bribing me.
‘They knew what mattered to me so they’d say things like, “If you get up today we’ll think about you going home for a day”, because they knew that’s what mattered most to me.’
Now, thanks to her new groundbreaking experimental drug treatment plan, Kira’s life has almost completely changed.
Lorlatinib works by targeting and blocking receptors found on the cancer cells to stop them from growing and dividing too fast. It can stop or slow the growth of cancer cells.
Astonishingly, medical experts told Kira on Friday that it was working – and that there is now no new evidence of the disease and her tumours are shrinking.
She is now able to be a ‘normal’ teenage girl.
Kira added: ‘I’m doing everything my friends are doing.
‘Gigs are the really big thing – I’ll go to everything I can.
‘I love them – singing along in the crowd and not having to worry about being well enough to be there. I just love having a normal teenage life where I can get up and go to anything my friends and I fancy.
‘I sing and play the xylophone and I’ve been able to perform at concerts without worrying if I’ll be tired or feel unwell.
‘I do a lot with my family, too, and the five of us, including Milo the dog, love just settling down at home. Our lives are not ruled by treatments and side effects any more and it’s wonderful.’
I am good at just forgetting about it but there have been dark days