Twenty-one months after being diagnosed with a rare and aggressive childhood cancer, Anya Bentham beat the disease.
The story of Anya, now 4, and her parents, Graeme and Naomi Bentham, began in the United Kingdom, where it included dozens of hospital visits, countless prayers and hundreds of thousands of pounds raised.
“We always hoped and prayed, but we never had an inkling of a guarantee. There’s never a guarantee in this world,” said Graeme, who lives with his family in Chester, a city in northwest England that is 200 miles outside London.
The journey had been horrible, in his words. After just six months of treatment in the UK, Graeme and his wife heard the news no parent could accept: ‘I’m afraid that your daughter isn’t likely to make it.’
“You can imagine some of the nights, some of the times we’ve had,” Graeme said. “We’ve had some really dark days, but on top of those dark days you find the courage to do some research and we realized there’s a chance for Anya.”
That wasn’t the case when the Benthams initially received that terrible diagnosis.
During the early months of chemotherapy, it was apparent from speaking to other families and through their own research, that there was an immunotherapy treatment option available in the United States. The treatment, they learned, might give Anya an extra 20 to 30 percent chance of long-term survival.
In conjunction with the Neuroblastoma Children’s Cancer Alliance charity, the family embarked on a journey to raise the money required to fund this treatment.
“I used to lie there in bed dealing with the turmoil and how we were going to get that money,” Graeme said. “Nobody was going to tell me that my girl died because we didn’t have the money to treat her.”
After only 11 months they met their goal. At the same time Anya continued to inspire and progress through the grueling treatment protocol.
“I don’t know why Anya’s done as well as she has and some children have the same treatment, the same drugs, the same diagnosis, and they don’t make it,” Graeme said. “I don’t understand it and I don’t think I ever will.”
At the 11th hour, Anya was offered a place on a European trial for immunotherapy, which meant the family could remain in the UK, surrounded by family and friends, and in familiar hospital surroundings at Alder Hey Children’s hospital in Liverpool. This trial was funded by the Cancer Research UK charity.
Five months of immunotherapy was completed in May 2014.
The next month Graeme and Naomi decided to enroll Anya in a research study at the Haworth Innovative Therapeutics Clinic at Spectrum Health Helen DeVos Children’s Hospital. The study was to evaluate a new investigational drug designed to help prevent relapse for children in remission from neuroblastoma.
Anya has been in remission since July 2013 and her chance of survival is approximately 70 percent, a long, long way from the 20 percent survival rate she faced at 18 months old.
“It’s absolutely blown me away. The people here are amazing, the facility is amazing,” Graeme said. “We met so many lovely people in West Michigan, the Renucci Hospitality House, and at the hospital in the DeVos’ brilliant facility.”
To keep the disease from reoccurring, Anya takes two tablets twice a day. Anya and her parents will return to Grand Rapids every three months for the next two years, to undergo scans and tests to check that the cancer hasn’t returned and that the medications aren’t causing side effects.
“It’s the thing that haunts Naomi and I and other families every night you go to bed,” he said. “You pray that it doesn’t come back.”
Naomi has used social media, including Facebook, to chronicle her family’s painful and arduous ordeal, but also as therapy for herself. Anya’s Facebook page is called Anya Bentham Appeal.
“It’s a journal for my wife,” explained Graeme, “for when Anya’s older to let her know how she inspired other people. One day we pray that we can sit with our big girl and explain why we are so proud of her and how she inspired many people through their own adversity, none more than her Mummy and Daddy.”
It, along with Twitter, helped spread Anya’s story throughout the world. It also helped her family raise not only money, but awareness of what families with children affected by neuroblastoma undergo. If you would like to show your support for Anya and her family, please visit her page on Facebook and say hello.
“We have close to an amazing 9,000 likes and we would love to reach 10,000 and beyond,” Graeme said.
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