Solving Kids’ Cancer UK
Kira's Campaign
Kira’s been fighting neuroblastoma since she was just 11 years old. Kira and her family continue to fundraise for further future treatments she might need.
Story
Kira loves music and going to live gigs. She enjoys time spent with friends, socialising, eating out, nightclubbing, laughing and having fun – enjoying herself generally!
Over the past year whilst undergoing treatment for disease progression, Kira has completed her A Levels and secured placements at two universities to study Paediatric Nursing. Her latest scan results in July 2022 show she is once again in remission with no evidence of active disease.
Relapsed neuroblastoma is particularly difficult to treat, and treatment options are limited. Kira and her family are continuing to fundraise so that Kira can access any potentially life-saving treatment needed that is not available through the NHS, which could cost hundreds of thousands of pounds.
Kira’s story
In January 2014, 11-year-old Kira began to periodically complain of feeling unwell with stabbing pains in her side. Over the following seven months, Kira’s mum, repeatedly took her to their local GP surgery.
In July 2014, another visit to the doctor led to Kira having a blood test. As the results showed that coeliac markers were slightly high, Kira was referred to Gastroenterology for investigations, which included an ultrasound of her abdominal area to check the surrounding areas of her bowels.
Kira’s parents, Aud and Ronnie, were not prepared for what they were told following the ultrasound, that Kira had a huge mass in her abdomen.
"We were told that Kira would need further tests and scans to confirm but the mass was huge. Our world as we knew it fell apart at the seams. Our 11-year-old gorgeous girl had a cancer called neuroblastoma." Aud, Kira’s mum
Treatment so far
Soon after the diagnosis, Kira began frontline treatment for neuroblastoma. This included six rounds of chemotherapy, which reduced the tumour by 80%. This was then followed by major abdominal surgery, which removed a further 16% of the remaining 20% of the tumour. Total resection was not possible because the tumour surrounded major blood vessels. Following surgery, Kira then received radiotherapy followed by six months of an oral drug.
In November 2015, Kira’s end-of-treatment scan confirmed that she was in remission.
Relapse and fundraising for treatment
Devastatingly, Kira’s cancer came back.
Despite the best medical efforts, it was not possible to remove a growing tumour during a major operation in January 2018. To give Kira the best hope of continuing her life free from this disease, she needed potentially life-saving surgery at Memorial Sloan Kettering Cancer Center in New York.
Kira’s parents, along with her cancer specialist, identified a world-renowned surgeon who specialises in the most difficult to remove tumours. The family then launched an urgent fundraising appeal to raise the £340,000 needed to access the surgery, and thanks to enormous public generosity, the fundraising target was surpassed. Kira had the operation in 2018 and it was a success. In June 2018, Kira’s scans were clear.
But by August 2018 an MRI scan showed neuroblastoma in the pancreatic area and it was decided that Proton Beam Therapy in New Jersey would be Kira’s best treatment option. Kira was able to access the therapy because of the surplus funds raised through the fundraising campaign for surgery.
Disease progression
Sadly, Kira’s cancer continued to grow during Proton Beam Therapy and scans in January 2019 showed new spots of disease in her abdomen. Her family were given the devastating news that Kira's disease is incurable.
Since April 2019, Kira has been granted compassionate use of the third generation ALK inhibitor Lorlatinib drug, part-funded by Solving Kids’ Cancer UK. Due to Lorlatinib’s minimal toxicity, Kira has been able to live her life away from hospital.
In October 2021, scans showed disease progression in 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 currently shows no evidence of active disease.
"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
Solving Kids' Cancer UK's children's fundraising campaigns
Funds raised will go towards helping Kira and her family. If Kira no longer needs the funds or is in remission five years post the end of successful treatment, the funds will be used to support other children and families affected by neuroblastoma through our activities. For children with high-risk neuroblastoma, like Kira, the survival rate is much lower than other childhood cancers. Upon relapse, this rate reduces even further.
