Doctors have dealt a devastating blow to brave Kira Noble with the news that the cancer she has been fighting since she was 11, is incurable.
The 15-year-old Firhill High pupil, who has stood steadfast, and positive against the reprehensible roadblocks of Neuroblastoma for five years, has now been told the aggressive and rare cancer is not curable but, it is treatable.
She will now begin an taking experimental drug, Alk Inhibitor as part of a trial by pharmaceutical giant Pfizer.
Instead of letting the devastating diagnosis and uncertain future, Kira refuses to be deflated by a disease that has attempted to control her life.
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.”
Kira’s mum Aud said the news felt like being hit by a freight train.
“It sounds so cliche,” she said. “But it’s the only way you can describe it.
“It’s a gut pain that’s unbearable.”
The Nobles have been dealt a cruel hand but Aud, and Kira, are determined to get the best out of the life that they have got.
“It’s not the news you want but you’ve been dealt these rubbish cards in life...and you have to play the best game you can with the rubbish hand,” Aud said. “Kira’s reaction was initial disappointment but then she dusted herself down and got back to living life in a way that is so gutsy.
“She could sit around and mope - but she chooses to get out and about with friends and has been keeping so busy with doing teenage stuff.”
Enough to make even the most energetic exhausted, Kira has already packed her weekend full. She is singing at a school event, got going to a friend’s 21st birthday celebration and to a concert in Glasgow.
“She’s out there living her best life at every turn,” Aud finished.
Kira’s Neuroblastoma harbours an Anaplastic Lymphoma Kinase (ALK) mutation which will be targeted by the experimental inhibitor drug in an “out of trial” setting – meaning Kira will not have to travel for treatment, which will be funded by the NHS.
Results from a specialist Neuroblastoma test in January revealed that Kira’s cancer had continued to grow in her pancreatic area and new spots of disease have emerged in her abdominal area following treatment in Procure Proton Beam Therapy Centre; New Jersey last year.
Friends, family and the general public helped fundraise a mammoth £340,000 in just four weeks last May to help pay for intensive surgery to remove a tumour. The total fundraising then went on to smash half a million pounds, thanks to the generosity of Kira’s supporters.
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.
“This disease is relentless and constantly adapts and comes back despite the various treatments that are thrown at it,” Aud explained. “There are limited options to treat it - and we may find ourselves in the position of having to pursue treatments outwith the UK again.
“It won’t be easy - no cancer treatment is easy, but it should be so much easier than previous treatments. Kira will be monitored by Edinburgh Children’s Hospital to make sure she is well during treatment.”
The family hope the army of support behind them will continue as they move forward with Kira’s treatment.
“Personal support comforts us and makes us feel so loved as we travel these challenging roads throughout treatment” Aud said. ”We are continuously stopped in the street, in shops, in restaurants and in hospital by well wishers in Edinburgh. It’s lovely.”
And in the future support of Kira’s treatment the family have humbly asked that people continue to raise money for Kira, and for Neuroblastoma research.
“So much more funding and research is needed to find a cure for this despicable disease,” Aud added. “We continue to thank you all for taking Kira to your hearts and raising so much money for her treatment fund so far. We can’t do this without you all by our sides.”
To donate, visit https://campaign.justgiving.com/charity/solvingkidscancer/kiranoble
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