Pancreatic Acinar Cell Carcinoma: Maddie’s Story

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When she was 12, Maddie was very active — in particular, she practiced gymnastics several hours a day. But stomach pains and weight loss signaled the start of a challenging medical journey for her and her family. 

Maddie smiling outside Maddie was diagnosed with pancreatic acinar cell carcinoma, a cancer that is very rare in general and exceptionally rare in children. So few people are diagnosed with this cancer, there aren’t enough patients to do meaningful studies. “Unchartered territory — that’s what I hear all the time,” says her mother, Princess.

Maddie was initially treated at a hospital near her family’s home in Dayton, Ohio, undergoing surgery, radiation and chemotherapy. Unfortunately, Maddie relapsed multiple times, and the physicians discussed with the family the option of not doing additional treatment. Wanting a second opinion, the family came to Children’s Hospital of Philadelphia (CHOP).

Maddie was seen by the experts at CHOP’s Very Rare Malignant Tumors Program. These types of tumors come in different forms and are individually very rare, but as an aggregate, they comprise more than 10% of all pediatric cancers. The Very Rare Tumors team partners with specialists at other CHOP divisions or at institutions outside of CHOP, bringing together the optimal team to best assess and treat each child.

Maddie and her family decided CHOP was the right place for them and decided to make the eight-plus-hour drive from Dayton to CHOP for all of Maddie’s appointments with Program Director Ted Laetsch, MD, and nurse practitioner Kelly Meyers, MSN, CRNP. Maddie received a type of targeted chemotherapy. “It targets how tumors proliferate and spread and interrupts that process,” Meyers explains. Today, Maddie’s scans show no evidence of disease.

Now 15, Maddie is described by Princess as “bubbly, full of life and as sweet as they come.” She has a lot of ideas about what she wants to be when she gets older — maybe a scientist, maybe an athlete, or maybe an artist!

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