The adventuresome, inquisitive 4-year-old loves traveling with her parents, Ram Ganeshan and Tonya Boone, who are professors at the College of William and Mary’s School of Business. They frequently travel the world to visit Ram’s family in India or to teach and conduct research.
It was in anticipation of one of these trips last December to Singapore and France that they faced an unexpected and terrifying turn of events.
Ava had a fever and was unusually listless. Her lymph nodes were swollen, so her parents, suspecting strep throat, took her to her primary care physician. An exam and a blood test pointed in a different direction.
“Her blood counts were way off,” Ram recalled. “The doctor arranged for us to go immediately that afternoon to CHKD.”
There Ava was seen by childhood cancer specialist Rebecca Byrd. After examining the child, she suspected leukemia and admitted her to the hospital for a blood transfusion and a bone marrow biopsy to confirm the diagnosis.
“At first I didn’t want to believe it could be possible,” Tonya said. “I was in complete denial and frightened. I kept wanting it to be something else. But the more I learned, the less frightened I became.”
Ram and Tonya were given a multitude of information to review. Dr. Byrd and the hem-onc nurses and social workers assembled and began answering all of their many questions.
The next day, when the biopsy confirmed the diagnosis of acute lymphoblastic leukemia, the parents remember feeling an odd sense of relief just knowing what it was. That relief was fortified when they learned that Ava’s chances for a cure were excellent. She would need to begin chemotherapy right away.
Then Dr. Byrd, who directs CHKD’s clinical research trials program, asked the family a question they had not anticipated. Would they consider enrolling Ava in a clinical research trial? The trial, conducted in conjunction with a national study, was testing various combinations and dosages of drugs and their method of delivery – orally versus intravenously.
Ram and Tonya were given extensive information about the specific clinical trial and about the research process connected to the national Children’s Oncology Group. Their decision would have to come quickly. Ava needed to begin chemotherapy treatments the very next day. If they agreed, their daughter would be randomly assigned to one of four groups of leukemia patients enrolled in the research study. One group would receive the standard treatment; the other three would be assigned to different configurations of trial treatments. All would be closely and frequently monitored throughout the course of the trial and for years to come. Data would be collected over the years to see how the treatments compared in terms of survivability outcomes and side effects.
“It can be a tough decision for families in the midst of everything else they have to quickly learn and absorb,” Dr. Byrd said. “Some families say ‘no’ right off the bat, and we assign their child to the standard treatment arm, which is the best known care available anywhere in the world.” Some families need even more information and the advice of extended family. “We want them to choose what’s right for them and their child,” Dr. Byrd said. “We try hard to make sure they have access to all the best options and information.”
For Ava’s parents, it wasn’t such a hard choice.
“As academics, we are not afraid of research studies,” Tonya related. “We understand their scientific methodology and purpose. We mostly wanted to know about their controls to ensure protection of the patients and about the range of impacts that might be expected because of the toxicities of the various drugs and combinations.” Dr. Byrd talked freely with them about all this and answered all their questions.
Ava’s parents understand the importance of research and the impact that accumulation of knowledge means for the treatment of patients in the future. They said, “If children with cancer hadn’t participated in studies 20, 15, 10 years ago, Ava would still be facing those older treatments and lower survival rates.”
“In a society like ours, you can’t just always stand on the shoulders of giants. You have to do your part too,” Ram said. “We were satisfied that Ava’s health would be put first and we could opt out of the study at any time.”
As it turned out, Ava was randomly assigned to the standard group and will become part of the control group used for comparison of the other three treatment groups.
This summer, she is doing especially well.
“We’re very happy with her care and the support made available to us, like the nurses and child life specialists and social workers,” Ram said. “We’re delighted with the constant care and monitoring Ava receives in the clinical trial. And when we visit with the other patients and families in the clinic, we’re really inspired.”
Ava’s mother said they were extremely grateful that CHKD’s childhood cancer program lets them stay close to home. “Everything since the afternoon we first arrived here has been so smooth and automatic and done the right way,” Tonya recalled. “We’re so very lucky. It’s unimaginable to me what a family would do if they had to send their child far from home for this level of care.”
Ava’s energy, spirit and sense of adventure quickly returned under Dr. Byrd’s care.
“I don’t know what she makes of all this,” Ram reflected. “At first she didn’t want to come to the clinic; now she can’t wait to come, and she never wants to go home. She wants to be a part of everything there.”
It’s that pioneering spirit she gets from her family and from CHKD.
Dr. Byrd, who practices with Children’s Specialty Group PLLC at CHKD, is also medical co-director of the hematology/oncology division.
This story was featured in the first quarter 2005 issue of KidStuff, a publication of Children's Hospital of The King's Daughters. Several years later CHKD followed-up with Ava to see how things were going. Read that story here.