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Eleanor’s 3-year-old well-child checkup went from routine to terrifying in a moment. There was a mass in her belly. She needed a blood test and scan right away.
“Her dad and I were in shock,” Amy Sues recalls. “We had no idea. There were no symptoms. When they sent us to an oncologist, we kept asking ourselves: What’s going on? Could this be cancer? It couldn’t be.”
Eleanor was diagnosed with hepatoblastoma, a cancerous tumor in her liver. It’s a rare cancer that strikes young children, typically 3 and under.
Fortunately for Eleanor, one of the nation’s best centers for treatment of hepatoblastoma was just an hour’s drive from her home in Springfield, Ohio.
At Cincinnati Children’s she found a comprehensive liver tumor care team that included experts in cancer, liver disease and transplant surgery − and a support team that helped her parents get through the scariest time of their lives.
“We met amazing people. I can’t say enough about them,” Amy Sues says, listing the doctors and surgeons, the care coordinator who guided her, the chaplain who comforted her, and the child life specialists who made sure Eleanor had fun, even while going through chemotherapy and transplant surgery.
Nine years later, Eleanor has prevailed over cancer.
There are perhaps 150 to 200 new cases of hepatoblastoma a year in the United States. In about 40 patients a year, the best or only option for a cure is liver transplantation.
Not every children’s hospital has the multidisciplinary expertise and institutional commitment to build a program targeting a disease so rare and complex.
In fact, the wide range of highly specialized programs at Cincinnati Children’s is one of the reasons we are consistently ranked among the nation’s top pediatric hospitals.
The specialized Liver Tumor Program was built on a strong foundation, says oncologist James Geller, MD, medical director of the program.
Our Pediatric Liver Care Center provided a model for an integrated approach. Since the center was established in 1985, gastroenterologists and surgeons have worked together as an unusually cohesive team to improve coordination of care.
For the Liver Tumor Program, the core team evolved to include oncologists, pathologists and radiologists, as well as gastroenterologists and surgeons.
Communication and collaboration are hallmarks of their approach to care.
The wide-ranging expertise at Cincinnati Children’s was another critical element in building the program. Our pediatric surgeons have extensive experience with liver surgery and transplants in very young children. Our interventional radiologists are skilled in advanced procedures that target therapy directly to the tumor. Our oncologists are national leaders in offering new therapies for difficult-to-treat cancers.
“The Liver Tumor Program is a coalescence of all these strengths,” says Dr. Geller noting that the Cancer and Blood Diseases Institute at Cincinnati Children’s offers many other highly sophisticated and coordinated programs.
The Liver Tumor Program’s reputation for expert care and superior outcomes has grown rapidly in the last five years. Today, it annually serves 10 percent of all children in the US with hepatoblastoma.
A simple philosophy underlies the approach to care: The single biggest risk to the child’s life is the cancer. Attack it aggressively.
The team works collaboratively to ensure that children referred to the program are seen and evaluated quickly, so treatment can start right away.
Eleanor’s family experienced that commitment to starting treatment as soon as possible. “Those first days were a whirlwind of tests,” Amy Sues recalls. A self-described “take charge kind of mom,” she wanted information to understand and feel confident she was choosing the right path for her daughter.
“It was a balance between wanting to act quickly and not wanting to make a hasty decision,” she says. “The team was very responsive. They shared the data. I like data. I liked the approach, and agreed that transplant was the best option for Eleanor, and we needed to move forward.” Eleanor’s name was immediately placed on the transplant list and she began the first of seven rounds of chemotherapy.
The team’s approach is to attack the tumor and any micro-metastatic disease aggressively. They start treatment immediately, keep it going right up to surgery, and resume chemotherapy as soon as possible after surgery, typically within two to three weeks. Eleanor had four rounds of chemotherapy before surgery and three rounds with another type of chemotherapy after.
At first, Eleanor’s cancer responded to the treatments. Blood tests showed the cancer markers were down. But on Halloween, when she was in the hospital for another treatment, there was an alarming change. The numbers were suddenly up, spiraling out of control. She needed a new liver soon. Eleanor enjoyed herself at the hospital’s Halloween party, and then the family drove home, anxiously waiting for word that an organ was available.
Due to the urgency, her name had moved to the top of the list of children waiting for transplant organs. Amazingly, the call came the next day.
Their bags already packed and ready, they rushed back to Cincinnati, and early the next morning, Eleanor was in the operating room, getting a new liver. She came through the operation well and recovered quickly. “There was much to be thankful for that Thanksgiving,” her mother says.
While her parents learned about immunosuppressants and life after a transplant, Eleanor went on with three more rounds of chemotherapy.
Because the Liver Tumor Program’s treatment approach is so aggressive, it requires careful, coordinated care − daily communication.
Gastroenterologist Kathleen Campbell, MD, consults with transplant surgeon Greg Tiao, MD.
“I think one of the reasons our outcomes are so good is because we work so well together,” says gastroenterologist Kathleen Campbell, MD, medical director of the Liver Transplant Program.
Dr. Geller confers with transplant surgeon Greg Tiao, MD, daily. Following a liver transplant, care management passes to one of the transplant program’s gastroenterologists, but “the children are getting chemotherapy, so oncology stays involved,” Dr. Campbell explains. “We continue to partner, working together over the long haul for those kids.”
Frequent communication enables the specialists from different disciplines to focus together on all the medical issues and side effects of treatment that may occur, and to provide both aggressive and individualized care.
From 2000 to 2012, the Liver Tumor Program treated 25 children with hepatoblastoma with a combination of chemotherapy and liver transplant.
The outcomes are outstanding. All 25 children are alive. Only one had a recurrence of the cancer, and with surgery and additional chemotherapy, the child achieved a cure. All have good liver function.
These superior outcomes support the team’s belief that post-transplant chemotherapy and careful, individualized attention are key to prevailing over hepatoblastoma.
Eleanor is one of the survivors. She returns to Cincinnati Children’s for annual visits to the Pediatric Liver Care Center and the Cancer Survivor Center. But the disease doesn’t define her. Today she’s an active sixth-grader and a Girl Scout. She loves art and has discovered she has a passion and talent for archery.
James Geller, MD, takes a moment to play with a 3-year-old cancer patient, Carson, during a clinic visit.
Cincinnati Children’s ranked No. 1 for cancer care and No. 3 overall among the 10 Honor Roll hospitals in U.S. News & World Report’s 2013 survey of best children’s hospitals. Our gastroenterology program was ranked No. 3, with the liver transplantation service being rated superior.
James Geller, MD, is the medical director of the Liver Tumor Program.
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