Mia Chambers wasn’t born a rainbow warrior princess.
The 6-year-old from Wales became one by showing courage and strength in her fight against a rare childhood cancer.
The journey has taken her far from home—across the Atlantic Ocean to Grand Rapids, Michigan, where Mia receives medical treatment.
Her parents, Kirsty Mahoney and Josh Chambers, bring her to Spectrum Health Helen DeVos Children’s Hospital every few months to take part in a clinical trial for children with neuroblastoma.
Each trip requires nearly a day of travel. They rise early, drive to London and take at least two flights before they arrive in Grand Rapids.
But Mia’s parents make the effort because they hope the experimental treatment will keep their daughter’s cancer in remission.
“This (clinical trial) isn’t an option back home,” Josh said. “The treatment we get back home is amazing, and the doctors are awesome. But this is a couple of years in front of the U.K.”
Mia is enrolled in a clinical trial led by Giselle Sholler, MD, director of pediatric oncology research at Helen DeVos Children’s Hospital. The study tests whether the drug difluoromethylornithine—known as DFMO—prevents relapse of neuroblastoma.
As part of the trial, Mia’s parents bring her to Grand Rapids for regular checkups and to receive a fresh supply of the DFMO pills.
Relapse is our worst fear. Our biggest hope is that it never happens to us. We want Mia to live a normal happy life.
On a recent visit, as Mia bustled around the hospital playroom and cooked up meals in the toy kitchen, her parents talked about the extraordinary hometown support that made their trip possible.
Josh, a steel fabricator, and Kirsty, a cashier, first noticed the signs of illness in their only daughter, Mia, at age 4.
Like other children in her class, Mia experienced cold and fevers in May 2016.
One day, she also developed an upset belly. Mia said she had pain in her stomach, so Kirsty rubbed her tummy. After she felt a lump, she took Mia to the doctor.
The parents soon learned Mia had stage 4 neuroblastoma, a solid cancerous tumor that begins in the nerve cells of infants and young children.
For Mia, a little girl who loves coloring and dolls, skateboarding and playing outdoors, the diagnosis set in motion 16 months of tough treatments aimed at defeating the deadly disease.
Surgery and chemo
“We were told from day one that Mia had a 55 percent chance of beating the disease,” Josh said.
Over the next 80 days, Mia received eight sessions of chemotherapy.
“The tumor shrunk from the size of my fist down to less than a golf ball,” Josh said. “It was a drastic decrease in size.”
Next, Mia underwent surgery to remove the tumor, as well as a kidney that had been damaged. The surgeon also removed one ovary, because the cancer had spread there.
Mia then underwent high-dose chemo and a stem cell transplant.
She had trouble eating, and her doctors discovered an adhesion in her intestine. She went back to the operating room for another surgery. She then began radiation therapy.
Through both surgeries and the many chemo sessions, her parents marveled at their little girl’s strength. Their little green-eyed girl rarely complained.
“She was marvelous,” Josh said.
Although the cancer went into remission, her parents began to worry about what could come next.
About half of the children who beat neuroblastoma suffer a relapse. And for those who relapse, historically the odds of defeating the cancer a second time have been quite low, Dr. Sholler said.
Through the online network of parents of children with cancer, the Chambers learned about Dr. Sholler’s research into the potential for DFMO to prevent relapse.
So far, over the past five years, 87 percent of the children enrolled in Dr. Sholler’s study through the Beat Childhood Cancer consortium, have stayed in remission.
Colorful signs of support
When they decided to enroll Mia in the clinical trial, the Chambers knew they could not handle the cost of taking their child to the U.S. for medical care.
They turned to their community for help.
In an online fund drive, they dubbed Mia a “rainbow warrior princess.” The rainbow would be a nod to the rainbow ward in the pediatric oncology unit at their hospital in Cardiff, Wales.
The community responded with a generosity that stunned Mia’s parents.
Tattoos on Josh’s arms pay tribute to Welsh coal and iron mining, an industry with deep roots in Merthyr Tydfil, a community of about 60,000 people in South Wales. Although many factories have closed, the area once was known as the iron capital of the world.
“The area where we live is not a wealthy area,” Josh said. “It’s got a lot of history and there’s a lot of businesses there, but generally speaking, our area is not a rich town.”
Donations poured in. Businesses, residents, children and community leaders held fundraisers to support the little girl with cancer.
A florist led a team effort of making rainbow-colored ribbon rosettes and selling them to raise money. More than 30,000 bows showed up all around South Wales—on cars, lapels, wagons, ponytails and floral bouquets. The effort brought in thousands of dollars.
In all, the Chambers raised more than 308,000 pounds—nearly $430,000.
Donations came from throughout the United Kingdom, but “90 percent came from our borough and surrounding valleys in South Wales,” Josh said. “The poorest people in our town were the first to give. That says a lot.”
The Chambers and their fundraising agency have a plan in place to donate any leftover funds to help other children with cancer.
A long way from home
In August 2017, Mia and her parents made their first trip to Grand Rapids, Michigan, and met Dr. Sholler and the pediatric oncology team at Helen DeVos Children’s Hospital.
Coming from a valley tucked into the mountains, they were overwhelmed by the big city spreading out across the flat landscape surrounding the hospital.
“It’s lovely. It’s extremely massive,” Josh marveled. “You can drive the full length of Wales in four hours. It takes longer than that to get to your supermarkets.”
Although the trip seemed daunting at first, the family said they felt welcomed by the medical staff, including Dr. Sholler.
“She cared for us and cared for Mia,” Josh said. “You’d expect it to be quite scary, but they make you feel right at home.”
They made their second visit in November. Mia underwent scans and tests—which showed the cancer is still in remission—and then the family met with Dr. Sholler.
Shy at first, Mia soon reached her arms out to Dr. Sholler for a hug.
“You are so special,” said Dr. Sholler as she wrapped her arms around her. “I like rainbow princesses.”
She told Mia she hoped to have lots of snow on the ground for her next visit.
“We will go sledding,” she said.
“I have a sleigh,” said Mia.
A sleigh is a sled, her dad explained.
Like other families who travel long distances for the clinical trial, the Chambers turn the medical trips into family vacations. On their first visit, they made a side trip to Florida. On the second, they explored Grand Rapids.
After they left the clinic and entered the elevator, Kirsty held up a Ziploc bag containing bottles of pills: a three-month supply of DFMO.
“This is why we make the trip,” she said.
No harsh side effects
Although they know other children from England and Ireland taking part in the DFMO clinical trial, the Chambers said Mia is the first from their hospital back home.
The plan calls for her to take the medication for two years and then continue with checkups with Dr. Sholler for another two years. The visits will eventually be spaced six months apart.
Unlike chemotherapy, the medication has not had any harsh side effects for Mia. That’s one reason the Chambers decided to try the experimental treatment.
“If the treatment was harsh, I wouldn’t have done it,” Josh said.
Their main concern had been whether Mia would object to swallowing pills every day. In the past, taking oral medication proved tough for her. But when she started on DFMO, Mia didn’t put up a fuss.
“It’s like she knows how important it is,” Kirsty said.
While on the clinical trial, Mia continues to play with friends, go to school and live the carefree life of a happy, healthy 6-year-old.
And that’s exactly what her parents want to see.
“Relapse is our worst fear,” Josh said. “Our biggest hope is that it never happens to us. We want Mia to live a normal happy life.”