Kira’s Neuroblastoma Story

Kira was diagnosed with neuroblastoma in 2014 when she was just 11 years old. She and her mum, Aud, tells their story so far.

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Early symptoms

This resulted in a referral to gastroenterology for further investigations. During an ultrasound scan, a large mass, about the size of a watermelon, was discovered, and more tests and scans revealed the fact that I had neuroblastoma. The tumour they found in my abdomen equated to about two litres in mass. This was quite a rare diagnosis when I was 11 years old as it most commonly affects children who are under five.

The diagnosis

This resulted in a referral to gastroenterology for further investigations. During an ultrasound scan, a large mass, about the size of a watermelon, was discovered, and more tests and scans revealed the fact that I had neuroblastoma. The tumour they found in my abdomen equated to about two litres in mass. This was quite a rare diagnosis when I was 11 years old as it most commonly affects children who are under five.

Treatment

Over the next 10 years, different treatments were tried including high-dose chemotherapy, major abdominal surgery, conventional radiotherapy and proton beam therapy in America. This cancer relapsed eight times, and once neuroblastoma relapses, there is no known cure, and there is no designated treatment path set out to follow. After many long surgeries, doctors sat my mum down and told her that there could be no further surgery on a growing active tumour that was encased within my major blood vessels. They said the mass would be life-threatening to remove. Through many streams of support, donations were received to mean that we could fly to a specialist surgeon in New York who operated on my inoperable tumour and successfully resected all of it.

Current life

Having cancer nine times has undoubtedly shaped me, but I still live life large at every opportunity. I always squeeze the joy out of life as I go, in between treatments.

I always squeeze the joy out of life.

More tumours

When Kira returned to Edinburgh, after having had Proton Beam Therapy in New Jersey USA in December 2018, a scan in January 2019 showed uncountable tumours to be growing in various locations within her abdomen. Proton beam therapy had devastatingly not worked and Kira’s cancer continued to grow throughout this therapy. Not only had it not worked, but the tumours had multiplied and spread.

Aud, Kira’s Mum

SMPeads Trial

Despite this, Kira was undeterred. Together with her oncologist and myself, she made the joint and pivotal decision to try a third Generation ALK inhibitor, called Lorlatinib. This treatment had never before been used in children. She enrolled on SMPaeds Serial Blood Testing, which would track her response to treatment alongside the targeted treatment. She was one of the first children in the UK to receive this serial blood testing alongside Lorlatinib.

Additional treatment

Her cancer further relapsed at the end of 2021 and her liquid biopsy showed that the same ALK mutation remained but had increased in percentage in her bloodstream. So, we knew it was crucial to remain on the ALK inhibitor and add in an additional therapy such as chemoimmunotherapy.

We knew it was crucial to remain on the ALK inhibitor.

No evidence of disease

After six months of this, the tumour became inactive, with no evidence of active disease on a scan, and has remained that way to date. Her blood tests continue to show her to be in sustained molecular remission since the beginning of 2022, which means that there are no detectable mutations in her circulating DNA. Over the past six years, Kira’s tracking of her ct DNA in her bloods has correlated perfectly with her clinical course & imaging.

Support from Children with Cancer UK

We are hugely grateful to Children with Cancer UK for investing invaluable funds into SMPaeds Serial Blood Testing for all children with relapsed cancers and believe it will make a positive difference to outcomes for children living with cancer. Thank you to Children with Cancer UK and to their supporters for all they have done and continue to do. Kira’s story is an important example of precision medicine having the desired effect on cancer and allowing her to live life as a typical 21-year-old.

Kira and Aud, March 2025

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