For as long as he can remember, Gabriel Ciarleglio, 7, has been washing his hands the second he comes home to reduce the risk of passing infections on to his 3½-year-old sister, Hailey.
When she was in treatment, he often took an oral syringe full of juice to encourage her to take one full of medicine. Gabriel has also spent many mornings over the course of the past two years accompanying his sister to the hospital for treatments—including chemotherapy and spinal taps—for acute lymphoblastic leukemia (ALL). The disease is an aggressive blood cancer in which the patient has too many immature white blood cells—the cells that normally fight infection.
But now Hailey is finished with her treatments, the hair she’d lost to chemotherapy has returned as a crown of soft curls, and she’s taking classes in her father’s karate studio. In a recent class she ran up to her brother and kissed him on the elbow before scrambling back to her place. “I love my big brother!” she said. The Ciarleglio family is looking forward to an especially joyful holiday.
One of cancer’s success stories
While cancer in children is rare, ALL is the most common kind of childhood cancer. “But the improved survival rates among children with the disease is one of the great success stories of cancer treatment,” said Gary Kupfer, MD, director of the Yale Pediatric Hematology & Oncology Program, where Hailey was treated.
In the 1960s, less than 5 percent of young patients with the disease survived for more than five years. Today, the overall long-term survival rate is about 85 percent of children with ALL, according to National Cancer Institute figures, and a number of factors impact a child’s chance for survival. An important one is getting optimal care at a center experienced in the treatment of children with ALL.
The Yale Pediatric Hematology & Oncology Program emphasizes multidisciplinary care for ALL and other forms of childhood cancer. In addition to seeing a primary attending physician, fellow and nurse practitioner, families meet with doctors from a variety of specialties, including laboratory medicine, surgery, neurosurgery, orthopaedics, pathology, therapeutic radiology and diagnostic radiology, as well as nurses, psychologists, social workers and child life specialists.
Kupfer said many children with ALL do well with standard treatment and don't participate in clinical trials. Doctors have learned that the subtype of ALL a child has impacts survival, so they test for gene modifications in the leukemia cells and treat the patient according to the findings.
Helping families cope
Just as it is critical to give children access to leading edge therapies, it is also essential to create an environment that’s “family friendly,” says Farzana Pashankar, MD, the pediatric oncologist who oversaw Hailey’s treatment. That includes everything from keeping meticulously current in the video game selections to having child life specialists who’ll blow bubbles with kids during procedures.
“Siblings and parents are under extreme pressure as well. Patients and families require “all-around care,” said Kupfer.
For the first six months, Hailey’s treatment was intensive. Jennifer Ciarleglio, Hailey’s mother, would spend the night at the hospital with Hailey whenever she was admitted, while her husband stayed in their Hamden home with Gabriel. Hailey’s care team made it easier. “They’re all great,” Jennifer Ciarleglio said, “all very supportive.” Hailey got through the spinal taps watching videos of Caillou, a bald-headed cartoon character.
Making a difference
Meanwhile, the family got so involved in the practice that Frank Ciarleglio’s business, Academy of Kempo Martial Arts in Hamden, has hosted drives to collect toys and art supplies, as well as fundraisers for the Tommy Fund for Childhood Cancer, which, among other things, provides funding for direct and indirect financial assistance to families dealing with childhood cancer. Frank Ciarleglio recalls watching children make art projects in the clinic and being awed by “the relief that it brought and the joy that it brought to their faces.”
Since Hailey has been in cancer treatment most of her life, it’s difficult to measure the effect of the experience. But her smile is back. She is an active girl who demonstrates dance moves and somersaults in between talking about her cat, Smokey, and her good friend Claire, one of her preschool classmates, and she is looking forward to a wonderful holiday.