Refusing to Give Up
- Aud Noble, 55, from Edinburgh, Scotland, has dedicated her life to researching treatment options for her daughter Kira, 19, who has been battling a rare cancer called neuroblastoma, which starts in the nerve cells, since 2014.
- After a mountain of setbacks, the family has finally found some relief through a new clinical trial out of London, as they display the most inspiring advocacy for their child.
- While it’s crucial to take care of yourself and learn how to relax through something something so major, it’s also equally as important to take charge of the situation and be as aggressive as you can when it comes to advocating for you or your child’s health.
After a mountain of setbacks since Kira’s 2014 diagnosis, the family has finally found some relief through a new clinical trial, as they display the most inspiring advocacy for their child.Read More
“I’ve spent years in and out of hospitals and normal life just stops,” daughter Kira shared of her ALK-positive disease, which is a gene mutation causing uncontrolled growth of cancer cells.
“After my diagnosis I thought the tumour in my abdomen would be removed, I’d have chemo and get better,” the teen stated. “So I thought I’d beaten the cancer when, in 2015, I was told I was in remission even though they hadn’t removed the tumour fully because it surrounded major blood vessels.”
Tragically, 12 weeks later, a scan revealed new tumors in her abdomen, which led to more chemotherapy and a second surgery
The cancer warrior was in remission yet again in August 2016, but roughly one year later, another growing tumor was found. Kira was then enrolled in a clinical trial at Glasgow’s Children’s Hospital.
“I then joined childhood cancer support groups online, in Edinburgh and globally, as well as a neuroblastoma-specific global support group and, recently, an international ALK-positive group,” Aud said. “Most parents I know whose children have cancer build up a good medical knowledge and the groups make me feel less isolated. I feel more in control if I’m researching.”
The self-taught medical expert expressed that the “information you get from doctors varies,” therefore she leans on support groups who are going through as well.
“Everyone passes on their knowledge, personal experiences and contacts,” Aud said.
“The treatment landscape is constantly evolving so we have to monitor what is available and most effective,” she added.
Facing ‘Incurable’ Cancer
After multiple setbacks and relapses, Kira’s cancer in her abdomen continued to get worse, and she had another major surgery in January 2018.
Just four months later, Kira’s support group raised over $350,000 to send her to a world-renowned surgeon, who specializes in more difficult surgeries of harder to reach tumors, at Memorial Sloan Kettering Cancer Center in New York City.
Despite the advanced level of care, nothing seemed to be helping Kira, and her disease was labeled “incurable.”
“I was offered chemotherapy but I couldn’t face it,” Kira said. “Mum says chemo is like a wrecking ball, but she and Dad obviously wanted me to have anything that could help.”
The family’s last hope was a clinical trial of Pfizer drug LORBRENA® (lorlatinib), which was commencing at the prestigious Royal Marsden in South London. The treatment “stops cancer spreading for longer, without the side effects of chemo.”
Aud said that they did not have time to wait for the scheduled start date, so she asked “on compassionate grounds” if her daughter could start in advance of the other participants, and they graciously agreed.
“Since then Kira has never felt more well in her eight years of living with cancer,” Aud said of the relief that her daughter has since experienced from this treatment.
“It’s a double edged sword though,” Aud said with cautious optimism. “It’s exciting to have the opportunity to have access to cutting edge new treatment but the downside is no one knows the long-term effects it could bring about. We don’t really have a choice. If we don’t use the drugs, the consequences of the cancer raging within your child is unthinkable.”
How a Cancer Diagnosis Impacts the Family
A child’s cancer diagnosis understandably affects an entire family in varying degrees. In an earlier interview, mother and caregiver Jayne Wexler describes how her son Justice’s cancer diagnosis impacted her family.
“We have to live each day and be thankful for what we have,” Jayne told SurvivorNet. “And it’s hard to remember that when you’re caught up in—especially in New York City and the craziness—it’s very hard just to sort of enjoy the moment, because we just don’t know what’s going to happen in the future.”
“And we know that, I mean, it could happen to any of us. And so many people have cancer or something terrible happened. So I try to just keep breathing and relax and enjoy my time with Justice,” says Wexler.
Advocating for Your Child’s Health
While it’s crucial to take care of yourself and learn how to relax through something something so major, it’s also equally as important to take charge of the situation.
“When it comes to your health, be a little pushy,” Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. When you see a doctor for a problem for yourself or for your child, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward.
“From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work.”