She had defied the odds and rang the bell signifying the conclusion of treatment twice in celebration of becoming cancer-free.
However, Alice Wakeling questioned her distraught parents why there wasn’t a cure when she learned that it had come back a third time.
In October 2019, the seven-year-old passed away at home in Sevenoaks, Kent, from rhabdomyosarcoma, a rare cancer that appears in muscle or fibrous tissue.
Since then, Sara and David, who founded the charity Alice’s Arc in honor of their daughter, have made it their goal to improve the outlook for children with the most severe kind of cancer.
They realized how little research, information, or support there was for families affected by the condition six months after Alice’s first diagnosis in March 2015, at which point they founded the organization.
It serves as a focal point for fund-raising efforts to improve research into the disease, which has a very poor survival rate at the moment of recurrence and is now a support network for dozens of families.
Alice was quite irate in her last few days, according to Mrs. Wakeling, 44, who is also supporting the Daily Mail’s Fighting to Beat Children’s Cancer campaign. I should be in school, she would remark. I ought to be living a typical life. Why is there no new medication? Why doesn’t there exist something?
She was quite outspoken, very irate, and very interested about the illness. Since it must alter in the future, it is essentially what motivates us every day.
“It can only alter by introducing these new therapeutic choices that Alice wasn’t able to access.” Nobody wants future families to experience what this family did.
Prior to being eventually identified as having rhabdomyosarcoma in March 2015, medical professionals first believed the tumor they discovered in Alice’s neck to be an infection. Her family was informed that she only had a one in two chance of survival for five years since it had already gone to her lymph nodes and lungs.
Following a successful round of chemotherapy at Great Ormond Street Hospital in London, she was given the go-ahead to go to the US for proton beam radiation therapy. Alice rang the bell at the hospital informing the end of therapy in October 2016 after 20 months of treatment at the age of five.
After spending 15 months together, the Wakeling family was devastated to learn that the disease had come back, decreasing her prospects of life to 8%. Her best chance, according to doctors, would be relapse chemotherapy combined with specialized head and neck cancer surgery and radiation in Amsterdam.
In the beginning, it was successful, and Alice, who has the siblings Sophie, now eight, and the twins Rosie and Emily, now six, rang the bell a second time and was cancer-free for almost another year.
But in July 2019, when tumors were found in her belly and pelvis, additional therapy became ineffective, shattering their lives once again. Alice had used all of her alternatives. In an effort to find kinder and better therapies, Alice’s Arc is currently funding research into the illness.
As a patient advocate on the NexTGen project, which investigates immunotherapy for children with solid tumors, Mrs. Wakeling has teamed up with Cancer Research UK.
She urged readers to contribute to the Mail’s Fighting to Beat Children’s Cancer campaign, which is run in collaboration with Cancer Research UK, and lamented the fact that some people may eventually lose family members to the disease.
“I was sitting there naively 10 years ago, not knowing what it would be like to have a kid with cancer,” she said.
“Then it happens to you, and it has a significant influence on your life, the lives of your children, and the loss.” You don’t want others to go through it. I want to stand out for Alice and other families because, regrettably, Alice’s experience is not unusual when it comes to discovering new methods to raise a lost kid.
»Family establishes children cancer awareness organisation«