Surgical Oncology Center

Raegan and Neuroblastoma

Collaboration and Expertise Help Raegan Reach Remission

The good news was that the cancer hadn’t spread.

The bad news: Raegan was diagnosed with high-risk neuroblastoma and would require a “very intensive” 14-month treatment course. 

Her parents, Kelly and Steve, were determined to do everything in their power to make sure their 15-month-old daughter received the expert care she needed.

Treatment began at Akron Children’s, near their home in Northeast Ohio, but eventually shifted to include Cincinnati Children’s thanks to an ongoing collaboration between the two hospitals.  

“Right away, my husband and I went full-blown into the mindset of, ‘What do we have to do to save her life?’” Kelly said. “We refused to believe anything other than that she’d be fine, and we refused to let anyone tell us anything other than that.”

They looked for hope after being told the unthinkable during a routine well-child visit: Raegan had a large mass in her abdomen. 

“At the pediatrician’s office, Raegan’s hemoglobin count came back low, and it was still just as low after I asked the nurse to retest it,” Kelly said. “And thank God it was low because there was nothing else of concern. Raegan looked and acted like an extremely healthy, just-over-a-year-old baby.”

Because of where the mass was located—stemming from the adrenal gland on Raegan’s left kidney—doctors in Akron believed the culprit was neuroblastoma, the most common cancerous solid tumor found in children. Still, because Raegan had no signs or symptoms, they also didn’t believe it was an aggressive form of the disease.

A Tough Road Ahead, Finding Cincinnati Children’s

Neuroblastoma is like a fungus. It grows between organs and winds around vessels. Raegan’s tumor wrapped around the vessels that supplied blood to her left kidney.

Testing revealed that Raegan’s tumor cells were positive for a specific genetic marker—one that made the cancer especially fast-growing and less likely to respond to standard treatment.

Her treatment regimen would include several forms of therapies, including chemotherapy and immunotherapy at Akron Children’s. While surgery, radiation therapy and bone marrow transplant, a form of cellular therapy that replaces unhealthy bone marrow with healthy stem cells, would take place at Cincinnati Children’s. 

Akron Children’s collaborates with Cincinnati Children’s for complex cases in several pediatric specialties, so Raegan’s care team recommended the family go to Cincinnati.

“We also did our own research and learned that Cincinnati Children’s is fantastic in pediatric cancer care, so we agreed with the recommendation,” Kelly said. 

“We sought out people who were like-minded and who would help us save her life in a way that would inflict the least amount of harm on her. I think that’s why we ended up with Dr. Gurria.”

Preserving Raegan’s Quality of Life

Juan Pablo Gurria, MD, MSc, is a pediatric surgeon and director of surgical critical care in the Division of Pediatric General and Thoracic Surgery at Cincinnati Children’s.

He met Raegan and her parents for the first time after Raegan had already started chemotherapy paired with immunotherapy at Akron Children’s, where she had been accepted into a clinical trial that would introduce immunotherapy at the beginning of the treatment regimen rather than at the end. 

The next step was harvesting Raegan’s stem cells ahead of two successive bone marrow transplants—called autologous tandem bone marrow transplant—that she’d need later. The family traveled to Cincinnati Children’s to have Raegan’s central line placed ahead of the cell collection.

Dr. Gurria was the on-call surgeon tasked with placing Raegan’s central line.

“He walked into the room and had such an amazing presence,” Kelly said. “After he told us about the line placement and what to expect, he asked if we wanted to talk about surgery or any other treatments Raegan would need.”

Kelly and Steve instantly formed a connection with Dr. Gurria, who explained that he could remove 90% of their daughter’s tumor while sparing her kidney and still giving her the best possible shot at a good outcome. He also felt confident that any part of the tumor he couldn’t safely remove surgically would respond to therapy.

“I told them I wanted Raegan to survive, but I wanted to help her do so in a way that saved her organs and gave her a good quality of life,” Dr. Gurria said. "I was confident that along with my surgical oncology partner, and also neuroblastoma expert, Meera Kotagal, MD, MPH, we could achieve that." 

In addition, Dr. Gurria connected Kelly and Steve with specialists from the Comprehensive Fertility Care & Preservation Program to learn about fertility-preserving options for their daughter, since the therapies she was receiving could cause infertility.

“What Dr. Gurria said aligned with the goal my husband and I had of saving our daughter’s life while preserving her health and future as much as possible,” Kelly said, so she and Steve made plans for Raegan to have both her surgery and tandem bone marrow transplant at Cincinnati Children’s.

A Successful Surgery

Thanks to the treatments she’d already received, Raegan’s tumor shrank significantly before her surgery, and Dr. Gurria was able to remove 95% of the remaining mass. That left only a small portion of the tumor—a little piece that had wrapped along the backside of one of her blood vessels.

“It was such a success,” Kelly said. “They got the huge beast out of there, and she recovered fantastically.”

After the surgery, the family returned to Akron Children’s to finish Raegan's fifth round of chemotherapy and immunotherapy treatment. A month later, they rented a house in Northern Kentucky so they could live close to Cincinnati Children’s for the roughly four months they’d need to stay for transplantation. After the transplants, Raegan began proton therapy—a form of radiation therapy that destroys cancer while minimizing damage to surrounding tissues and organs—at the Proton Therapy Center.

Raegan’s imaging tests before her first bone marrow transplant showed no signs of disease.

“Going into transplant, that was exactly where we wanted to be for long-term success,” Kelly said.

Another positive: Raegan tolerated the tandem transplants—a series of high-dose chemotherapy treatments—without any serious complications.

“The high doses of chemotherapy are followed by a ‘rescue’ of us infusing the stem cells we harvested back into the body,” said Christopher Dandoy, MD, a pediatric hematologist-oncologist and member of Cincinnati Children’s Division of Bone Marrow Transplantation and Immune Deficiency. “That allows the body to tolerate an intense treatment that otherwise would be fatal.”

Dr. Dandoy adds: “We have roughly 20 doctors who specialize in bone marrow transplant, and they perform the largest volume of transplants in the country. That not only gives us experience with the procedure, but also the ability to predict and prevent potential complications that can occur.”

While the transplant process can be “terrible,” Dr. Dandoy said, “it gets patients through. They survive, and they get to the other side and into remission and go on to live full lives.”

Growing Stronger Together

Raegan has five cycles of stand-alone immunotherapy left in her treatment regimen, which she’ll receive at Akron Children’s. Her local care team continues to work hand-in-hand with Raegan’s team at Cincinnati Children’s.

“Akron has been wonderful in working with us,” Dr. Dandoy said.

Raegan remains cancer-free and on pace to finish therapy within 14 months.

In addition to the “outstanding care she received,” Kelly attributes part of Raegan’s treatment success to her spunk.

“She’s a spitfire. Nothing’s going to get her down.”

Whether it’s spunk or strength, Dr. Dandoy agrees it’s served Raegan and her family well.

“When you go through hardships or something as awful as neuroblastoma and its treatment, it can either break you or make you stronger,” he said. “Raegan’s family is definitely one that’s grown stronger.”

“She’s a fighter,” said Kelly. “We’ll take it as it comes, but we expect Raegan to live a long, happy life.”