Love helps to overcome rare lymphoma, an aggressive blood cancer

Eddie Harley

In March 2017, Edward Harley and Cassandra Hensley flew home to celebrate their engagement with their families in Harvey, Ill. The young couple was on cloud nine.

When Harley’s mom, Victoria Edwards, hugged her son, she immediately knew something was wrong. “He had lost so much weight,” she said. “I felt like I was hugging bones.”

Harley had been experiencing stomach problems while away at college in Florida. ”I had persistent dull pain,” he said. “I blamed it on too much fast food and typical college life.”

At home, the 21-year-old continued to get sicker and soon went to the emergency department at Ingalls Memorial Hospital.

A series of abdominal scans and a biopsy led to a diagnosis of Burkitt lymphoma, a rare and highly aggressive blood cancer.

“Cancer had hit us at our happiest moment,” Hensley said.

Burkitt lymphoma, a type of non-Hodgkin lymphoma (NHL), starts in the B cells of a person’s immune system. While the rapidly growing tumor can be fatal if untreated, intensive chemotherapy can bring long-term survival.

Kimberly Kruczek, DO, an oncologist on Ingalls’ medical staff, consulted with Kenneth Cohen, MD, a lymphoma expert at the University of Chicago Medicine. Ingalls and UChicago Medicine recently had merged, creating a partnership that integrates convenient, high-quality community-based health care with world-class academic medicine.

Given the rarity and complexity of Harley’s condition, Kruczek and Cohen recommended that he transfer his care to the UChicago Medicine.

Harley was taken by ambulance that night. Cohen explained that the treatment required inpatient chemotherapy, with the goal of initially shrinking the tumor and then ultimately curing the lymphoma.

The chaos that is cancer was not going to prevent me from laughing, from loving and from loving life.

“The treatment for Burkitt lymphoma has tough side effects,” Cohen said. “But for patients who are young and can tolerate the intensive therapy, most can be cured of the cancer. Still, there’s a lot of concern, angst and uncertainty on the part of the patient and the family.”

Harley experienced many ups and downs as he went though chemotherapy, sometimes feeling like he was holding on by a thread. He tried to focus on the positive.

“Cassandra and my family were with me every step of the way,” Harley said. “If I didn’t have my support system, I’m not sure I would have made it. As hard as it was on me, I think they got the shorter end of the stick.”

He calls Hensley his rock. “Cassandra wanted to make sure my life did not end,” he said. “She showed me truly how strong a person she is.”

In turn, Hensley admires her fiancé for his strength. “It was all so incredibly painful,” she said. “But Eddie took something that seemed tragic and made himself a better person.”

Harley has now been in remission for more than a year. He returned to college and is working on a degree in computer science. He and Hensley are planning their destination wedding in Mexico next year. The 50 people who supported them will all be there.

“The chaos that is cancer was not going to prevent me from laughing, from loving and from loving life,” Harley said.

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Cancer survivor Anthony Rizzo is teaming up with the Chicago Tribune, along with the Anthony Rizzo Family Foundation, Mariano’s and the University of Chicago Medicine, in a campaign to raise money for cancer research and support for families as they fight cancer together.

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Sonali Smith, MD, talks with Clayton Harris, a lymphoma patient

Lymphoma care

Tremendous strides have been made in the treatment of lymphoma -- a group of blood cancers that begins in the white blood cells that fight infection in the body. UChicago Medicine lymphoma experts are among the first in the nation to offer innovative treatment options, including CAR T-cell therapy.

Learn more about our lymphoma care services