Edinburgh teenage cancer girl Kira lives life to the max thanks to wonder drug that calls for gentler treatments for children
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Kira Noble, 18, was diagnosed with aggressive neuroblastoma at the age of eleven and spent several years “institutionalized” in hospital undergoing grueling cancer treatments.
After enduring twenty cycles of chemotherapy, Kira is currently struggling with her sixth relapse – but she feels capable of living a more normal teenage life, after taking the wonder drug Lorlatinib.
The former Firrhill High student, known as ‘Kira the Machine’ for her resilience in the face of illness, suffered a heavy blow in 2019 when doctors declared her illness incurable but treatable.
However, her family said they have made tremendous improvements since starting the investigational drug two and a half years ago, when it was still in clinical trials.
Just weeks after Kira recovered from Covid-19, her mother Aud told the Evening News it was a ‘dream come true’ to see her daughter get her life back on track, after watching her undergo years of abuse.
Posting on her Facebook page for Childhood Cancer Awareness Month, Kira wrote, “This is why research is so important. Just look at the difference this drug has made for me. We need better, gentler treatments for children with cancer. “
Aud, 55, also wants more research into targeted treatments for children with cancer.
Neuroblastoma, a cancer that grows in nerve cells, affects around 100 children a year in the UK and has the lowest survival rate of all childhood cancers.
Aud, a mother of two, said: “We are in desperate need of gentler treatment for the children. Kira has undergone 20 cycles of chemotherapy in over four years. It is barbaric for children to endure this while their bodies are still developing. Chemo is like a wrecking ball for the body. The difference on this drug is incredible.
“Kira has a job in retail that she loves, she goes out with her friends and really loves health and beauty. She got a place in college but postponed it until next year. just wants to live a little bit, after so long institutionalized and tied to machines.Sometimes she was in the hospital for months.
“We were on a routine hospital appointment recently and I noticed Kira still had a tampon on her hand from a nightclub. I couldn’t believe it was my daughter. She was alive. life and having fun. It was a life affirming moment. “
“It’s so frustrating as a parent. It’s my job to be there for her, but with cancer I can’t fix it. It was horrible to watch my daughter go through these brutal treatments. protect her from the evil, but which was taken from you with cancer. At first, I thought she would get treatment and be cured. Instead, we had to accept that the cancer is incurable but that “It’s treatable. The fear never goes away. At the drop of a hat the cancer could progress again. There’s no guarantee. But she’s doing so well. Her life has never been closer to “normal.” I constantly hope and pray that the medicine will continue to work. “
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After months of forced isolation during the lockdowns, Kira fell ill with covid-19 last month. But she made a full recovery and got a taste for life again.
Aud added: “She is currently living her best teenage life to the fullest. I had lived the past year and a half completely worried about her getting covid-19. But luckily, it was. was a mild case. She’s starting to live her life again and enjoying every minute. I would never have dared to dream that she could have this life. It really is a dream come true. “
In 2018, almost £ 500,000 was raised in a matter of weeks to allow Kira to undergo the operation in the United States, which has been called a success.
Kira’s neuroblastoma harbors an anaplastic lymphoma kinase (ALK) mutation that is targeted by the experimental inhibitor drug in an “off-trial” setting, which means it does not have to travel to seek treatment. which is funded by the NHS. Alk inhibitor in a trial by pharmaceutical giant Pfizer.
The family kept supporters informed throughout their journey on the “Kira the Machine” Facebook page which Aud says has become a source of hope for patients around the world.
Aud added: “We never knew that the Facebook page we created would become this place where people from all over the world come for updates on Kira’s experience on Lorlatinib. People tell us all the time that Kira gives them hope.
“We are very grateful to the scientists, to Pfizer for granting Kira the use of this drug, to Kira’s medical team, to charities like Solving Kids Cancer and to everyone who supported us to make it happen. here.”
In a post on her Facebook page, Kira said:
“As an older patient with childhood cancer, I can use my voice to explain to people how brutal chemotherapy treatments are for children like me. The last chemotherapy I had was cyclophosphamide. It was developed in 1959 and is still used to treat children Children need more effective treatments.
“I continued to do well and the ALK inhibitor Lorlatinib kept my cancer stable. For two and a half years, I was able to live my best teenage life with minimal hospitalization. Two and a half years of life like any average teenager. Give me this milder treatment any day and not brutal chemotherapy that didn’t really work for my cancer. This is why research is so important. Just look at the difference this drug has made for me. We need better, gentler treatments for children with cancer.