Teamwork Lessens Family Leukemia Load

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Photo provided by Beltrami Studios

Comer Children’s Hospital at the University of Chicago patient Atia Lutarewych (left) with her parents, Steve and Laura Lutarewych, and her brother, Asher.

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Photo by Dan Dry

Charles Rubin, MD, associate professor of pediatrics, and chemotherapy nurse Mary Paterik, RN, work together to provide sophisticated care to Atia and a sense of calm and support to her entire family.

By Richard Asa

Atia Lutarewych runs into the arms of Charles Rubin, MD, an associate professor of pediatrics and an authority on childhood cancer at Comer Children’s Hospital at the University of Chicago. “Atia has come a long way,” her mother, Laura, said. “She isn’t afraid anymore.”

The 2-year-old Chicagoan has learned to live with spinal taps, intravenous infusions through a port in her chest and daily oral medications — her chemotherapy routine — yet projects a sense of calm that escapes many adults.  “We try to do things in as non-threatening a way as possible,” said the toddler’s chemotherapy nurse, Mary Paterik, RN. Atia’s numbing ointment, for instance, is referred to as “sour cream.” “I always try to bring a sense of calm and give the kids a lot of leeway. ”

Rubin said it’s the Comer Children’s Hospital team approach that has helped keep Atia and her parents on an even keel. Physicians, nurses and support staff, such as Child Life and Family Education specialists, work together with well-planned continuity. “It’s the system of care for children that has been built up over time and includes the parents. Parents can make the kids anxious if they have their own fears and transmit them,” Rubin said.

“In the beginning, Atia’s diagnosis devastated us and we knew that we couldn’t do it alone,” Lutarewych said. “The staff understood that Steve and I needed support, too. They clearly explained everything and were never condescending with our concerns. They’ve become a big part of our lives.”

Her husband, Steve Lutarewych, said they were particularly disturbed when Atia was first diagnosed in April 2009 and began receiving chemotherapy elsewhere that included frequent spinal taps. The toddler’s parents agonized over the policy of some other medical institutions to keep children awake during spinal taps. Before Atia ever experienced that procedure, they reached out to the University of Chicago Medical Center and were immediately comforted by Rubin’s treatment philosophy, which included sedation for all spinal taps by a team of pediatric intensive care physicians and nurses.

Acute lymphoblastic leukemia (ALL) is the most common leukemia in children, accounting for 23 percent of all cancers in children younger than age 15. It occurs in one of every 29,000 children in the United States each year, according to the National Cancer Institute.  Childhood ALL occurs slightly more often in boys than girls and in white children more often than in black children.

It is an aggressive type of leukemia in which malignant lymphoblasts (the immature form of lymphocytes, a type of white blood cell) grow in the blood and bone marrow. These abnormal cells, like all blood cells, can travel throughout the body, into the cerebrospinal fluid and brain. Unlike normal white blood cells, they can’t fight infection. If untreated, the disease can be fatal within a few weeks.

Its cause remains a mystery, but scientists are studying genetic changes that prompt a normal cell to become an ALL cell. Prenatal exposure to X-rays and postnatal exposure to high doses of radiation are known risk factors. Down syndrome and other genetic syndromes are risk factors, as well. Today, about 85 percent of children with ALL live five years or more, and are believed to be cured. In the 1960s, that figure was less than 5 percent. More than 95 percent attain remission.

Many children across the United States participate in clinical trials that either test a new drug or new combinations of drugs in comparison to current standard treatment.  Atia, for example, is enrolled in a randomized trial that asks whether the use of four additional doses of one drug, asparaginase, improves the survival rate for low-risk patients.
Rubin is a pioneer on hyperdiploidy (extra chromosomes) in ALL, which Atia has. The malignant cells, rather than containing the usual complement of 46 chromosomes, have 50 to 60 chromosomes per cell. In studies, he has shown that the extra chromosomes are all gained suddenly in one abnormal cell division. While no one yet understands why hyperdiploid ALL has an improved diagnosis, Rubin’s research has led to insight into the mechanics of the phenomenon.

Atia can’t relate to the significance of extra chromosomes or the biological effect of chemotherapy. She does, however, innately understand what it means to feel better. On a recent visit to Comer Children’s Hospital she played with a dollhouse in the treatment area everyone calls the “big room” while waiting her turn. Rubin joined in, grabbed a spare doll and in his best falsetto tried to enter through the little door. Atia’s laughter filled the glass-enclosed room.

“He had all this important work to do,” Lutarewych said, “and he sat down with her and played. He understood the trust he was building. Now, when he examines Atia, she wants to examine him. He gives her his stethoscope.” Currently in remission, Atia told Rubin she wants to be a physician, too.

See Lutarewych’s blog at ChicagoNow.