Kira’s story: the parent's perspective
Kira was just 11 when she was diagnosed with Relapsing ALK-positive Neuroblastoma - a rare paediatric cancer that develops in the nervous system. Her parents Aud and Ronnie have scoured the world for expert care and leading-edge treatments. They share their remarkable story.
Kira’s mother Aud says, “Kira’s case has been so complicated. The biggest and first hurdle we hit was when our home surgeons categorised Kira’s primary tumour as unresectable, that is, inoperable. We immediately sought out a second opinion from a world-renowned surgeon at Memorial Sloan Kettering in New York. He was confident that he could resect this tumour which was wrapped around major blood vessels, and he did indeed get it all out.”
Aud shared that it’s not easy nor inexpensive to seek out leading-edge treatments in other countries. “We had to raise £340,000 to fund the surgery, pay for accommodation and flights to the USA. In the end, all that matters is that the surgery was successful,” Aud adds.
Ronnie, her father, expressed that it’s not been easy agreeing to have Kira undertake experimental and new treatments such as the ALK-positive targeted therapy Lorlatinib, which had not been used in children in 2019. He says, "It's a double-edged sword: it's so exciting to be leading the way and forging a path for others to follow. But it’s very scary to be at the forefront of research and being the trailblazer.”
Unfortunately, they experienced disappointment with some hard-won treatments such as the Proton Beam Therapy which Kira underwent after surgery. This is not funded by the National Health Service for Relapsed Neuroblastoma, so again they fundraised. “With the generosity of family, friends and complete strangers we raised money for this too. Unfortunately, Kira’s disease did not respond favourably to PBT and tumours multiplied during this treatment.”
Aud adds, “As a family, life is always an intense juggling act. Life, of course, continues at a great speed even though Kira has lived with cancer for the past eight years. Many aspects of life must be pushed to the side as we concentrate on Kira's treatments and even travel overseas when necessary.”
Her parents both agree that the best piece of advice they can give to parents of a child diagnosed with cancer would be to take it one day at a time. “If the day is too big to deal with - take it five minutes at a time. Also, don’t project forward too far. Just try to concentrate on the moment in time that you’re in. It can be so overwhelming otherwise,” adds Aud.
Aud and Kira naturally are strong advocates for research. “We naturally immersed ourselves in the medical system and ensured we understood the latest research to help manage the needs of Kira. Our own experience in ALK-positive cancers like Kira’s make us determined to help advocate for more research. There is so much that is not understood about these ALK-positive cancers – from why they occur to how to switch them off and even hopefully one day find a cure.”
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