Thanks to enormous public generosity and huge fundraising efforts in response to their urgent appeal, Kira’s family raised more than the £340,000 needed for her life-saving surgery in 2018.
Kira’s been fighting neuroblastoma since she was 11 years old. She’s now 14 and has faced four gruelling rounds of treatment to try to get rid of her disease.
Despite 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 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 and the operation at the Memorial Sloan Kettering Cancer Centre was a success. Kira’s scans were clear in June 2018.
But by August 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. It was her second radiotherapy to this region, so Proton Beam’s acute accuracy was important in the decision making. This was paid for from funds already banked from Kira’s urgent appeal.
Sadly, Kira’s cancer continued to grow during Proton Beam Therapy and scans in January 2019 showed new spots of disease in her abdomen. The family are currently in discussions to decide on their next step and we will update you when we have news. They continue to fundraise in case Kira’s disease is resistant to her next treatment and she needs to travel overseas again to access a clinical trial.
Mum Aud, says: “Although this news is devastating, we thank you all first of all for your continued support. Figuratively speaking, Kira is undoubtedly swimming against the tide – but I think it’s so important to point out that she is indeed still swimming and we believe she will reach the shore… especially with her huge army supporting her.@
In January 2014, Kira, who was then 11 years old, began to periodically complain of feeling unwell. She had stabbing pains in her side and general abdominal area and would occasionally vomit. Over the following 7 months, Aud, Kira’s Mum, repeatedly took her to their local General Practitioner surgery. At times, in between visits, Kira’s symptoms would seem to improve and doctors thought it could be growing pains or hormone related.
Recalling that time, Aud reflects “I just knew, instinctively as a mother, that something wasn’t right.”
In July 2014, another visit to the doctors 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 her bowels.
Aud and Ronnie (Kira’s Dad), 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” says Aud.
Over the next few days Kira had more tests and scans, including a biopsy on the tumour so that doctors could confirm a diagnosis. “Our world as we knew it fell apart at the seams. Our 11-year-old gorgeous girl had a cancer called neuroblastoma.”
Neuroblastoma is a particularly aggressive form of childhood cancer and the most common cancer outside the brain in children under 5 years old.
The mass in Kira’s abdomen was believed to have originated in her adrenal gland above her right kidney. 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.
Astonishingly, there were no infiltrates in Kira’s kidneys and her kidneys were saved. Following her 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 but devastatingly Kira’s cancer has since come back twice. This means that although she was considered intermediate risk at diagnosis, Kira’s disease is actually now high risk.
Aud and Ronnie are so proud of Kira and how she’s coped with the demands of treatment and the horrendous side effects.
Kira’s Fundraising Campaign
Relapsed neuroblastoma is particularly challenging to treat and there are limited options to treat it; some of which exist in the form of clinical trials or surgery, of which some are in the UK and some abroad. Many families, just like Kira’s, will choose for their child to access options such as surgery in an attempt to get their child back into remission, or experimental therapies to help prevent a relapse occurring. By supporting Kira’s Appeal, you’ll be helping Kira to access potentially life-saving surgery in New York with the hope of bringing Kira back into remission. This will then enable Kira to continue cancer treatment thereafter in the UK to help maintain remission.
Aud and Ronnie say: “Kira takes on the challenges that cancer throws at her head on – with determination, power, resilience, humour and always with a big smile on her face, despite the gruelling treatments and debilitating effects she has to endure…
As a family, we are so incredibly proud of our gorgeous girl who bounces back from every obstacle and challenge she encounters. An oncology mum from our ward in Edinburgh named her Kira the Machine due to her persistent stamina, power and ability to recover. She is a real force of nature and a powerful warrior…”
How you can help Kira
There are many ways you can help Kira: by making a personal donation; holding a fundraising event; getting sponsored to take on a challenge; or simply following and sharing Kira’s story through her Facebook page “Kira the machine“.
Download our free Kira resources (below) to support your fundraising, and click here for even more resources, including fundraising ideas, templates and guidance.
You can make a donation via this page, or if you’d prefer to text donate, text KIRA89 and your amount £1 – £10 to 70070. If you’d like help supporting Kira’s campaign, please get in touch with the fundraising team on 0207 284 0800 | firstname.lastname@example.org.
Terms and Conditions for Appeals
All donations are paid into Solving Kids’ Cancer’s (SKC) general funds to further its general charitable purposes. The funds raised by this Appeal are not restricted for the child’s use. However, the trustees of SKC have agreed to designate 93% of funds raised by this Appeal to help pay for treatment costs and all other associated costs including travel and accommodation. We will use the remaining 7% to pay for Solving Kids’ Cancer’s administrative and fundraising costs.
If: the child no longer needs the funds; the fundraising target is exceeded; insufficient funds are raised to fund the treatment; or if the trustees decide, at their absolute discretion, that the funds should be used for a different purpose, they may redesignate all or part of the 93% for SKC’s general charitable purposes. We are very grateful for your charitable donation.
For further information about SKC and how we spend donations, please contact email@example.com .
Solving Kids’ Cancer Europe a registered charity no. 1135601 and registered company no. 7208648.