Inspirational Edinburgh teen Kira Noble - nicknamed 'Kira The Machine' for her incredibly brave approach to her neuroblastoma diagnosis - has received the very sad news that her recent innovative Proton Beam Therapy treatment in the USA was unsuccessful, and her cancer is now considered to be incurable.
Kira's family launched a crowdfunder for the 15-year-old Firrhill High student to pay for the treatment, and raised almost £500,000. Kira's scans came back clear in June 2018, but results from a specialist Neuroblastoma test in January revealed that Kira’s cancer had continued to grow in her pancreatic area.
Writing on Facebook, Kira's mum Aud said:
"After receiving the devastating news that Proton Beam Therapy was not successful and posting on our 'Kira the Machine' fb page in February , we have been informed that Kira's Neuroblastoma is incurable.
"To further position this - she is still treatable and the aim of treating her cancer will be to control and maintain it, as opposed to being curative.
"The last few weeks have been extremely worrying as Kira was experiencing headaches and we were very concerned in case there was disease in her brain.
"Despicable disease."
"Her MRI results for brain and spine came back clear and disease in her abdominal area and pancreatic area have grown, but this stands to reason as Kira did not want to have chemotherapy as a holding therapy as we await her new treatment arriving.
"The wait has been absolutely torturous but we know that our chosen treatment has been approved and should be in our possession very soon.
"Pfizer have granted her the use of a third generation ALK inhibitor drug called Lorlatinib in an "out of trial" setting. This means we don't have to travel afar for treatment and that the NHS will be funding it. It is a targeted therapy that we hope will be well tolerated and has so far shown minimum toxicity in adults.
"This disease is relentless -it constantly adapts and comes back , despite the various treatments that are thrown at it. There are limited options to treat it - and we may find ourselves in the position of having to pursue treatments outwith the UK again.
To that end, we are humbly asking friends family and supporters to continue to fundraise for Kira in case she needs these funds. If she does not use them, the money will be used to fund Neuroblastoma research. So much more funding and research is needed to find a cure for this despicable disease."
"We continue to thank you all for taking Kira to your hearts and for raising so much money for her treatment fund so far. We can't do this without you all by our sides and we know you've been busily fundraising for us since our post in February.
"Thank you from the bottom of our hearts."
https://campaign.justgiving.com/…/solvingkidscanc…/kiranoble
http://solvingkidscancer.org.uk/journey/Kira
Please text,"KIRA89 £5" to 70070
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