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A Young Boy Bravely Embarks on a Long Odyssey with Leukemia

Coleson Arends and family, Charles Rubin
Coleson Arends (center, in yellow) was unexpectedly diagnosed with leukemia at age 3, but has courageously fought back with the help of his family and medical team. Left to right: (front row) Coleson’s brother, Caden; Charles Rubin, MD; Coleson; Coleson’s mother, Chelle Arends. (back row) Coleson’s aunt, Shari Arends; Kelly Kramer, RN, MSN; Coleson’s sister, Halle Arends; and Marc Matarelli, RN.

One day at the neighborhood playground, 3-year-old Coleson Arends complained of fatigue and pain in his legs. The youngest of three siblings, Coleson has always been the quiet one -- a child his mom, Chelle Arends, describes as "a little sly." So when Coleson began asking her to carry him to and from the park, she thought her youngest child simply needed more attention.

However, in August 2008, Coleson began running a low-grade fever. When the family traveled to a state fair the following week, Coleson had no interest in going on rides or playing in the hotel pool. He had turned pale, and his lips seemed almost transparent.

When the family returned home, Chelle Arends took Coleson to his pediatrician in their hometown of Naperville, Illinois. After examining him, the physician recommended that the boy go to the hospital immediately. A battery of tests later revealed a shocking diagnosis: acute lymphoblastic leukemia (ALL).

When the family returned home, Chelle Arends took Coleson to his pediatrician in their hometown of Naperville, Illinois. After examining him, the physician recommended that the boy go to the hospital immediately. A battery of tests later revealed a shocking diagnosis: acute lymphoblastic leukemia (ALL). Coleson, now 8-years-old and cancer-free, is all smiles after his first football practice in August 2013.

Suddenly, no one could think about brother Cayden’s first day of kindergarten, or sister Halle’s party with friends, or the incessant ring of Chelle Arends’s Blackberry. After a referral from the family’s pediatrician, Coleson was on his way to the University of Chicago medical center -- one of eight centers in greater Chicago that treat children with cancer. A team of pediatric cancer specialists met the ambulance and began an intense treatment regimen that lasted the next five days.

Coleson’s tests determined that he had "standard" risk ALL, and this classification would dictate the first month of chemotherapy treatment. That involved a complex regimen of drugs--administered intravenously, orally and via spinal tap -- designed to induce remission.

James Nachman, MD, the late professor of pediatrics at the Pritzker School of Medicine, was on call and oversaw Coleson’s immediate care. Nachman was an internationally renowned expert on childhood cancers, and developed an aggressive chemotherapy protocol that has radically improved survival rates for children with ALL who fall into the high-risk category.

With ALL, leukemic cells replace the normal bone marrow cells so the body doesn’t make red or white blood cells or platelets. Without normal cells, the body can’t function. ALL affects one in 300,000 people, and the survival rate is approximately 85 percent. An estimated 43,050 new cases of leukemia will be diagnosed in the United States in 2010. Of those, approximately 5,330 will be children diagnosed with ALL.

 Coleson Arends and Charles Rubin, MD Coleson clowns around with his physician, Charles Rubin, MD. Rubin has been overseeing the care of pediatric cancer patients for 25 years.

Charles Rubin, MD, associate professor of pediatrics, treated Coleson as he underwent his ongoing chemotherapy. Since 2008, Rubin has maintained an office in Naperville, where he sees pediatric cancer patients as part of the University of Chicago Medicine’s outreach program.

"Coleson responded in the best way possible to his first month of treatment," Rubin recalled. "By day 15, we classified him as a rapid responder, with less than 5 percent lymphoblasts in his bone marrow. By day 28, he achieved minimal residual disease or less than 1 malignant cell in 10,000 cells. We also discovered a genetic hyperdiploid chromosome pattern -- meaning extra chromosomes beyond the typical 46 -- that is associated with a better outcome."

Coleson and his family also benefited from a multidisciplinary team that included a nurse practitioner, a social worker and a child life specialist. Kelly Kramer, RN, MSN, CPON, CPNP, cared for Coleson as his nurse practitioner and now coordinates his ongoing treatments. "We work hard to help patients and their families find and maintain some normalcy, so that cancer does not become the primary focus of their lives," she observed. "We also look for ways to empower patients, so they can become more comfortable with the system. That way, they’re not afraid to come here for spinal taps and other treatments."

Today, Coleson is in the final year of a standard three-year treatment protocol that involves daily chemo pills, a monthly chemo push followed by five days of steroids and a spinal tap every three months. He also takes antibiotics twice a week to help protect his weakened immune system from infections. And while he will require careful monitoring for years to come, he can receive most of his ongoing treatment in Naperville.

Life in the Arends’s household also is returning to normal. When Coleson entered kindergarten this fall, he qualified as 100 percent functional based on patient performance criteria. Though phases of his treatment still make him tired and cause discomfort, he’s a fighter who managed to play T-ball this summer, cool off at the local pool and spend time with his siblings. And Chelle Arends, forever grateful for the treatment Coleson received, now volunteers her time to raise money for pediatric care.

"Coleson’s team at the University of Chicago has become our extended family," Chelle Arends said. "They know us as people, identify with what we’ve gone through and treat Coleson as if he is their only patient. They are truly some of his favorite people, and we have utter respect for what they do every day to save our son’s life."

January 2011

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