Every year, around 10,400 children are diagnosed with cancer, and thanks to one health care group's approach to care, the large majority of them will survive the disease. The group is applying the same methods to improving the long-term behavioral outcomes of kids who undergo treatment.
Mya Wilson and her family are waiting in the lobby of Children's Hospital of Pittsburgh, and she has just introduced me to a temporary tattoo on her fist, a monkey named Bob. Mya is eight. She is undergoing treatment for leukemia. Long-limbed with bright eyes and a halo of fuzz where her hair used to be, Mya is in constant motion. "I'm doing pretty good, I can actually climb walls."
"I'd say she more or less bounces off the walls. I don't know where she gets it from, but I wish she'd give me some. I could use some of your energy." Mya's mom Leslie said she feels like she has not slept since Mya was diagnosed with acute lymphoblastic leukemia last winter. She spends much of her time shuttling back and forth from the hospital to their home in Apollo in Armstrong County.
"Me, I just get stressed out all the time just making sure I get the right doses, the right days, the right time," Leslie said. "Just making sure she gets everything she needs."
But Mya's outlook is good: her chance of recovery is in the 90th percentile. Yet, it wasn't always this way. In the 1950s, a child cancer diagnosis was grim, with only 10% cured of cancer. These days, it is closer to 80%. Those strides in treatment can be attributed to what today is called the Child Oncology Group. This massive collaboration of pediatric oncologists, healthcare workers, and administrators has refined treatment over the decades through clinical trial after clinical trial. Dr. Kim Ritchey is Chief of Pediatric Hematology/Oncology at the University of Pittsburgh Medical Center and Mya's doctor. He's also a member of the Child Oncology Group.
"You know when you think about it, there's only 1% of cancer in the U.S. is pediatric cancer, but we have the most robust clinical trials organization and always have. We try and put every single one of our patients on a clinical trial," Ritchey said.
The group includes more than 200 hospitals working co-operatively, which means a child diagnosed with cancer in Tucson will get the same treatment as he or she would in Miami, New York City, or Pittsburgh. Within the group, health care providers are assigned to committees based on their areas of expertise. They have conference calls every other week and meet en masse twice a year to discuss and determine treatment.
"There's no competition among sites. The only competition we have is who's going to get the cure rate higher and who's got the best idea. That's where the competition is," explained Ritchey.
This shared vision and the willingness of families, and most importantly children, to participate in medical trials has nudged the cure rate upward.
Leslie recalled when they were approached about joining one of the trials. "They asked us if we would like to participate in which the study would help more defined treatment plans for kids, more specific with her type of leukemia, and so I talked it over with her and she said, 'Yeah,' she wants to help other kids out who might be diagnosed with this. Anything we can do to help, huh?"
Ritchey said trials involve two groups of children, "one to get the best therapy we know, and one to get the best therapy we know, plus something new. We randomize them into one or the other group, and we hope, but don't know, that the new therapy will be better than the standard therapy."
Mya received the standard therapy. On this day she is at the hospital because her white blood cell count is a little low. Her family takes the elevator from the lobby to the waiting room, and eventually they are ushered to their own room where case managers and nurses flit in and out, giving Mya medication, coordinating schedules, and answering Leslie's questions.
Mya is a typical kid. She loves to dance, prefers reading over math and longs to hang out with her friends. As the Child Oncology Group has increased the cure rate, they are also focusing on the quality of the cure to make sure kids like Mya do not have lasting behavioral or physical problems that can result from toxic cancer treatments. Leslie said it is something she worries about. "I'm just concerned with the side effects from all the different medicines."
Long-Term Effects of the Cure
Dr. Ritchey said they ask themselves the same question over and over again.
"Are we curing the children at a price we don't want to accept?"
While Mya is in the first year of her treatment, 16-year-old Madeline Hric has been cancer-free for about 5 years. Sitting at the kitchen table in her Coraopolis home with her parents, her days of being sick seem distant.
"I remember my mom crying in the car. At first I didn't really know what it was because I was in fifth grade," Hric said. "I didn't know what leukemia was, and then when they told me, I guess I was kind of scared."
Madeline agreed to be a part of trial during her treatment. She is also a part of a long-term trial to track the impact of methotrexate, a crucial chemotherapy drug used to fight leukemia, which can affect the brain and learning. Dr. Ritchey is also Madeline's physician. "Madeline participated in a trial where they did an MRI, neuro-psychological testing. Her results will be compared to those who did the other methotrexate treatment."
He explained they are trying to strike a balance between the highest cure rand the fewest lasting behavioral effects. This is particularly important for children with cancer.
"We need to be cognizant not only of the cure, but of the quality of the cure, because kids that are cured hopefully will have 60 – 70 years of life," Ritchey said. "So we want to make sure that we provide the cure with the best quality."