Introducing Kira
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Meet Kira who lives in Edinburgh, Scotland.
A typical teenager in many ways:
"I love music and going to live gigs. I enjoy times spent with friends, socialising, eating out, laughing, having fun – just enjoying myself generally,” says Kira.
But Kira’s not so typical in that she lives with Relapsing ALK-positive Neuroblastoma - a rare paediatric cancer that develops in the nervous system.
Kira was diagnosed with Neuroblastoma in 2014 at age 11. Two years later in 2016, she developed an ALK-positive mutation. Over the eight years of living with Neuroblastoma, she’s been through a lot including eight relapses.
Kira says, "It’s all about the right treatment with the right team in the right place at the right time. If that means having to uproot and travel to another country, we’ll do it.”
Kira has been treated at the Royal Hospital for Children & Young People Edinburgh since she was 11. But she’s also had to travel near and far, including the Glasgow Children’s Hospital, The Royal Marsden in London, as well as Memorial Sloan Kettering Cancer Centre in New York, and ProCure Proton Therapy Centre in New Jersey (both in the US).
Kira adds: “The hospitals and medical teams are absolutely amazing. I actually love my in-patient stays with all the socialisation and chats that go on. I’m ever so thankful to be surrounded by such fab people."
Kira has endured many gruelling treatments, such as:
26 rounds of chemotherapy (including high-dose chemo with Autologous Stem Cell Transplant – which uses healthy blood stem cells from your own body)
Four major abdominal surgeries – including a successful 6.75-hour operation in NY – and countless minor surgeries
Six months of Differentiation Therapy Radiotherapy in Edinburgh in 2015
Proton Beam Therapy in New Jersey, USA in 2018
Not all treatments work as hoped. Just four weeks after her Proton Beam Treatment in NJ in 2018, countless tumours appeared in her abdomen with a vengeance.
Unfortunately, in 2019, Kira’s medical team classified her disease as incurable. Undeterred, in April 2019, Kira agreed to try a targeted therapy called Lorlatinib that is used to treat ALK-positive lung cancer and was considered experimental as it had never been used in children. Thankfully, it was provided on compassionate grounds from the manufacturer Pfizer and Kira has never felt better since being on Lorlatinib.
However, in October 2021 Kira’s scans showed an index lesion in the region of her pancreas. Surgery and radiotherapy were ruled out and she completed a six-month treatment plan in June 2022 using chemo-immunotherapy, in addition to Lorlatinib. Kira has had a good response to the latest treatment plan, and she currently shows no evidence of active disease.
“I honestly try not to let cancer impact my life. Obviously, there are times when I don’t feel in tip top health, and I have to take things a bit easier. But generally, I just plough on as much as I can," Kira says
Kira adds, "My advice to anyone newly diagnosed is to squeeze the joy out of life where you can. In the eight years I’ve lived with Neuroblastoma, I’ve still had great times in between all my treatments.
“My plans for the future include getting back to work. I work in retail in the heart of Edinburgh city centre. I secured a placement at Uni to study paediatric nursing but put it on hold when I discovered I had to go back into treatment after disappointing scan results. I love my job and I work with a great team of people - so, I’m looking forward to returning."
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