When Lee Ielpi learned he had cancer, he quickly realized it would never be the worst thing that had happened to him.
The Great Neck resident was used to coping with terrible news: His oldest son, Jonathan, a New York City firefighter and first responder, had perished trying to save others in the South Tower of the World Trade Center on 9/11. A retired FDNY firefighter himself, Mr. Ielpi spent nine months at Ground Zero assisting with recovery efforts, where he eventually carried the body of his son from the World Trade Center rubble. He has spent the years after the attacks working to transform the tragedy into something positive. In 2002, he helped to establish the September 11th Families Association — which provides support and counseling to peer families — and co-founded the Tribute WTC Visitor Center, a museum offering walking tours by volunteers recounting their own 9/11 experiences and the aftermath. Mr. Ielpi has also spoken at the United Nations about anti-terrorism.
“Losing my son was 1,000 times worse than getting cancer,” said Mr. Ielpi, age 67, who, along with Anne, his wife of 46 years, has three other children and eight grandchildren. “There is no way for me to express it…no way to explain that loss.”
The challenge ahead
His condition, a rare type of lymphoma called Waldenstrom’s macroglobulinemia, seemed like a rude intruder when it was diagnosed in June 2006. Mr. Ielpi, then 62, was busy preparing for the grand opening of the Tribute WTC Visitor Center when a routine blood test prompted a frantic call by his doctor. He had no symptoms, but his slow-growing lymphoma — which triggers the overproduction of proteins called IgM antibodies — can cause fatigue, weakness, bruising and visual or neurological problems. “She told me I had to get to the emergency department right away,” he recalled, “but I felt absolutely fine.”
After a spate of tests that included a bone marrow aspiration, Jonathan Kolitz, MD, director of the leukemia service and associate chief of hematologic oncology at the Monter Cancer Center and North Shore University Hospital, and leader of the Hematologic Oncology Center of the North Shore-LIJ Cancer Institute, gave an incredulous Mr. Ielpi the diagnosis.
“I thought he must be talking to the person in the bed next to me, not me,” he said. “But he said it was highly treatable, though not curable. I was kind of blessed with this — if you have to have a cancer, what better one to want?”
Thirty rounds of chemotherapy over the next six months brought one main side effect: extreme fatigue. Mr. Ielpi often found himself lying down for naps behind his desk in Manhattan. “I was asleep before my head even hit the floor,” he said, recalling that he was also pale and often suffered shortness of breath. But, true to his mission, he never missed a day of work and managed to skirt other, more debilitating treatment effects.
Now cancer-free for more than five years, Mr. Ielpi — who will spoke at the Monter Cancer Center’s Cancer Survivors’ Day in June and helped dedicate a bell donated by the Firefighter Cancer Support Network — has amazed Dr. Kolitz and others with his tenacity and spirit. Dr. Kolitz notes that new drugs developed since his diagnosis would likely beat back any recurrence.
“He is always very brave and upbeat,” Dr. Kolitz said, “and he continues to have a good sense of humor despite having gone through great personal tragedy. He’s a model patient in every possible way.”