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‘The best word ever’

She’s a survivor: Lily-Mae Morrison, the “Tiny Dancer” from Ireland, completes a clinical trial.

What does a cancer survivor look like?

Picture a 9-year-old girl, leaping in the air with her brother, feet kicked up, arms raised high.

You’ll get an idea of the joy that comes when a childhood cancer battle has become just a memory.

That was Lily-Mae Morrison―vaulting off a bench outside of Spectrum Health Helen DeVos Children’s Hospital. The little girl from Ireland had just wrapped up an appointment with her doctor, who declared her a five-year survivor of neuroblastoma.

“It’s amazing, just hearing that word (survivor),” said her mother, Jude Sibley. “That’s the word we all dream of but were too frightened to ever look forward to. It’s the best word ever.”

It’s incredible. It’s the reason I come to work every day―to see results like this.

Dr. Giselle Sholler

Lily-Mae, who became known as the “Tiny Dancer” in Ireland, has made 10 trips in four years to Helen DeVos Children’s Hospital to take part in a clinical trial led by Giselle Sholler, MD, the director of pediatric oncology research.

On each visit, she came with her parents and 7-year-old brother, Evan. With their long blond hair and blue eyes, and standing close to the same height, Lily-Mae and Evan often are mistaken for twins. They play together and keep each other entertained through their travels and Lily-Mae’s medical appointments.

“They have amazing imaginations,” Sibley said. “We are so lucky to have the two of them. They really are best friends.”

Lily-Mae took part in a study that tests whether a drug called DFMO (difluoromethylornithine) can prevent relapse of neuroblastoma. She took the oral medicine every day for two years and then continued to receive periodic scans and checkups for another two years.

In their trips back and forth across the ocean, the family from Claregalway in western Ireland found a second home in West Michigan.

“It’s wonderful. It’s brilliant,” Sibley said. She smiled and looked out at the wintry landscape and added, “Even with the snow.”

With her recent visit, Lily-Mae officially ended her participation in the clinical trial and transferred to a survivorship clinic. She will continue to follow up with doctors in the U.S. and Ireland, monitoring for any long-term effects from her therapy.

But seeing Lily Mae reach the “all clear” point warmed her doctor’s heart.

“It’s incredible,” Dr. Sholler said. “It’s the reason I come to work every day―to see results like this.”

In search of hope

Lily-Mae does not remember much of her cancer treatments. But her parents can’t forget the fear they felt in June 2012, when they learned their little girl, then 4 years old, had cancer.

“We had very little hope,” Jude said.

Lily-Mae had stage 4 neuroblastoma, a deadly cancer of the sympathetic nervous system that primarily affects infants and young children.

She is a little miracle. We are so grateful.

Jude Sibley
Lily-Mae’s mother

She underwent a tough course of treatment―chemotherapy, radiation treatments and a bone marrow transplant.

Her doctors declared her cancer-free. But they also told her parents she had a 70 percent chance of suffering a relapse. And the odds of surviving a relapse were slim.

“It’s hard to comprehend the level of relapse for this disease,” Sibley said. “When it comes back, it’s a very dangerous disease.”

Her parent looked for ways to keep the cancer in remission. In November 2013, they enrolled Lily-Mae in the DFMO clinical trial led by Dr. Sholler. As Lily-Mae began to take the pills every day, her mother dubbed the medicine “hope in a bottle.”

To pay for her treatments and the expenses involved in their cross-Atlantic travels, Sibley and her husband, Leighton Morrison, started a fund drive. Both professional dancers, the couple reached out to singers in Ireland to record the Elton John song “Tiny Dancer.” The song became a bestseller in Ireland and made Lily-Mae famous―while raising the funds needed for treatment.

Growing up

On her 10th visit, Lily-Mae greeted Dr. Sholler with a hug. She showed off her little stuffed animals―a unicorn, a gorilla and a pink flamingo―she received after undergoing an injection and a scan.

Dr. Sholler marveled at how tall Lily-Mae had become.

“She was so little (when she first arrived.) And now she’s such a big kid,” she said. “She’s all legs.”

“She’s doing great,” Sibley said. “She’s perfect.”

Unlike chemo drugs, the DFMO pills did not cause uncomfortable side effects for Lily-Mae.

“The only side effect that she had is she lost her hair on her temples,” Sibley said.

The phase 2 DFMO clinical trial found a 97 percent overall survival rate at two years for the 101 children taking part in the study. Typically, over 10 deaths would have occurred in that population, Dr. Sholler said.

A second phase 2 clinical trial is underway.

Future rock star

After the appointment with Dr. Sholler, Lily-Mae and Evan led the way to the Balk Café downstairs, where they bought ice cream.

As they have grown and matured, both children have become curious about the cancer Lily-Mae has battled.

“They ask about all the treatments and what neuroblastoma is and why she got it and what caused it―and all those questions I can’t answer,” Sibley said.

She explains the best she can: “I tell them it’s a cell that went wrong that made all the other cells around it go wrong. It’s a DNA fault. It just happened. There is no explanation.”

Sibley said she plans to remain an advocate for children’s cancer treatment and research into neuroblastoma.

But the family also looks forward to moving on with life and making the most of Lily-Mae’s good health.

For Lily-Mae, who loves to dance and sing, that means working toward her career goal as a rock star.

“She is a little miracle,” Sibley said. “We are so grateful.”

Read more about treatment of pediatric cancers and blood disorders at nationally ranked Spectrum Health Helen DeVos Children’s Hospital, including phase 1 and phase 2 clinical trials through the Haworth Family Innovative Therapies Clinic.

Your donations can fund neuroblastoma research. If you are interested in making a lifesaving charitable contribution please go to the Spectrum Health Foundation page and, on the drop-down menus, choose “Helen DeVos Children’s designations”  and “Beat Childhood Cancer.”