When Marcellius was 1 year old, he began to get recurrent upper-respiratory infections. At 2, his breathing difficulties landed him in a pediatric intensive care unit in his home state of Michigan. He was placed on a ventilator that pushed oxygen into his ever-stiffening lungs. The diagnosis was terminal, and doctors gave him about five years to live. Then doctors at Children's Hospital of Philadelphia (CHOP) agreed to evaluate him, and the outlook utterly changed: Cellie, as he’s known, is now a young adult.
Cellie was diagnosed with idiopathic pulmonary hemosiderosis, a rare disease characterized by repeated episodes of bleeding into the lungs, which can cause anemia and continually reduced lung function. “Because of the oxygen, he couldn’t eat and needed a g-tube,” says his mother, Lisa. “The bleeding kept getting worse. We just tried to treasure every moment.”
Eventually, his lungs would become too damaged to allow him to breathe. Lisa was told that a lung transplant wasn't an option because the disease would come back in the new lungs. The Michigan doctors “prepared me every day for the passing of my son.”
As she shared her sadness and desperation with her family and friends, and Cellie entered palliative care, one of Lisa’s friends refused to believe there were no options. She researched and found a pediatric lung transplant specialist at CHOP who had experience with idiopathic pulmonary hemosiderosis and had transplanted other patients with success.
“I immediately called him,” says Lisa, “but with some hesitation because I was afraid to get my hopes up only to be let down.” When she reached him, “He was honest and felt Cellie had a chance — a good chance — to live. He wanted him to come to CHOP for a lung transplant evaluation. I said to myself, ‘Lord, if this is your plan, it will go smoothly.’”
Cellie was 7 and believed he was dying. Lisa asked him if he wanted to try to get new lungs. Cellie wanted to try.
‘Such an incredible team’
“I can go on and on about all the staff members at CHOP,” says Lisa.
“From the doctors, social work, child life, physical therapy, respiratory therapy, nursing and palliative care, they were all amazing. It was such an incredible team of physicians who showed an enormous amount of care and concern for my son and for me.”
Cellie was listed for a double lung transplant. For months, he had physical and occupational therapy sessions to get strong enough to survive the procedure. Then one day, just as she was preparing to take a quick trip back to Michigan, Lisa got the hoped-for call: “There are lungs for Cellie!” The surgery lasted four hours, and it gave him what Lisa calls “a miraculous life.”
What does Cellie remember about this time, almost 15 years ago? “When I was sick, I just remember being scared,” he says. After the surgery and a month of rehab, the tube was taken out of his windpipe: “I remember being able to breathe without a machine. That was freaky!”
Cellie spent the rest of his childhood like any other kid: going to school, riding his bike, playing basketball, and going swimming. Now 22, he has a job installing conveyer belts.
The longevity of his transplant success is remarkable. He hopes to be an inspiration: “For anyone going through something like this, I’d say, keep up hope, and pray. If I can do it, someone else can. There’s something better around the corner.”