Burkitt Lymphoma: Lucas’ Story

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Lucas, 8, was always a finicky eater, admit his parents, Lori and Ken. But one day in July 2017, with Lori out of town on a business trip, Lucas wouldn’t eat anything at all, complaining his stomach hurt. Ken felt that Lucas “wasn’t himself,” but didn’t think much of it. Later in the day, Ken took Lucas and his brother, Adam, outside to play. That’s when Ken noticed something frightening: Lucas’ stomach was so distended that his belly button was flat.

Young boy cancer patient sitting by window smiling “It wasn’t like that just a few hours before in the morning,” Ken says, shaking his head. He contacted their pediatrician, who said they should head to Children’s Hospital of Philadelphia (CHOP).

Blood work, X-rays, an ultrasound, a CT scan — it added up to 18 hours that Ken and Lucas spent in CHOP’s Emergency Department. There was a real concern for a tumor in his abdomen. “That’s when I called Lori and said, ‘You need to get on a flight back here,’” says Ken.

“I knew when Ken called something was terribly wrong. He is not one to panic — that’s usually my job,” says Lori.

The next morning, a Saturday, a biopsy was performed. “And on Sunday evening,” says Ken, “he was getting chemotherapy.” The biopsy had shown Lucas had a rare, fast-growing cancer called Burkitt lymphoma. The abdomen is the most common site of the disease, but it can affect other organs and can spread to the central nervous system.

Cancer Clogging the Lymph Nodes

Young cancer patient sitting with brother in window smiling Burkitt lymphoma is so aggressive, it can double in size in a day. Ken describes the cancer in his son “like peanut butter spread in his abdomen — his lymph nodes were covered by the cancer.” The lymphatic system is an extensive drainage network. Because Lucas’ lymph nodes were clogged, they couldn’t do their job, and fluid built up in his body’s tissues.

Treatment for Burkitt lasts a relatively short period of time, but it is intense. When Lucas started his first 10-day round of chemotherapy, “Things kept happening because all this cancer was flushing out of his system,” says Lori. “He had kidney issues, breathing trouble, then a heart irregularity. None of these amounted to any additional treatment, but that first week was terrifying.”

Lucas underwent six rounds of chemotherapy from July to November, and the months were a roller coaster. “We’d be done with a round of chemo and home for a day or two, then he’d get a temperature and we’d head back to CHOP,” says Ken. “Overall, he was courageous, showing us strength we never would have expected.”

An avid soccer player, Lucas would even head to his soccer practice after chemotherapy if he was up to it. Now, a year and a half post-chemotherapy, with his cancer in remission, he’s gearing up for another soccer season in the fall, and he continues to get stronger by the day. 

“We had this saying from that first night in the hospital: ‘I can do this. I can fight it. I am stronger,’” explain Lori and Ken. Lucas is the embodiment of that saying, which can now be seen tattooed on Ken’s arm.

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