José, who was adopted from Guatemala in 1997, was born with renal dysplasia and chronic kidney disease that was discovered when he was 4. In August 2010, at age 13, he was diagnosed with leukemia.
“He has to deal with two major chronic illnesses that each, on their own, would be difficult enough for anyone to handle,” says Melanie Klein, RN, MSN, CNP, of Cleveland Clinic Children’s Hospital pediatric nephrology department. “He does it with amazing grace and maturity, far beyond his years.”
During his many hospital stays, José has earned great respect and admiration from his physicians, nurses, therapists and caregivers. “José displays determination, perseverance, an intimidating work ethic and an infectious smile,” says Aron Flagg, MD, a fellow with Children’s Hospital’s pediatric infectious disease and hematology/oncology departments. “It is a joy and an honor to be able to care for this young man during his time of illness.”
Complications from his cancer treatment further affected his kidneys, resulting in renal failure and the need to start chronic hemodialysis. He also developed pancreatitis, chronic pancreatic cysts and peripheral neuropathy. Despite unremitting medical adversity, José is known for his steadfastness and ever-present smile.
“He refuses to come into or leave the dialysis unit in a wheelchair,” says Ms. Klein. “If there is any way he can walk out of his own volition, he will do it.”
“Despite all of his medical conditions, he greets every day as a new day,” says Charles Kwon, MD, Director of the Center for Pediatric Nephrology. “He looks for the positive side of everything and squeezes every bit of possible joy out of every encounter.”
“I enjoy seeing his smiling face every time I walk into his room,” adds Kenyeita Palmer, a Patient Care Nursing Assistant at Children’s Hospital. “No matter how he is feeling at the time, he always has a smile on his face.”
Like most 15-year-olds, José likes riding his bike and hanging out with friends. He enjoys watching classic films, particularly disaster movies such as Towing Inferno, Poseidon Adventure, Titanic and the original King Kong. He is a Civil War history buff and has visited battle reenactments in Ohio and Pennsylvania.
José’s favorite school subjects are reading, math and writing. He will graduate from Julie Billiart School in June and attend Villa Angela St. Joseph High School in the fall. He has kept a journal since 5th grade and would someday like to write a book about his life with leukemia.
“The doctors and nurses make me feel OK, but they can be bossy,” José laments in typical teenage fashion. “Dr. [Margaret] Thompson, my oncologist, helps me a lot and is always on my side.”
Throughout his hospital stays, José displayed courage time and again, says Kristen Powaski, RN, BSN, CPHON of Children’s Hospital’s pediatric hematology/oncology department. “He participated as much as he could in his care. He wanted so badly to get better and go to school. Even when he was on precautions and confined to his room, he spent time pacing in his room to increase his strength. When he could, he even wore a pedometer with step goals he would try to meet, walking miles in the short halls on the unit.”
“We call him Star Trooper at home,” says his mother, Pat Dybzinski. “He just rolls with the punches.” Family and friends are important to José, whose biggest advocates are his mother, his father Richard and his older sister Maria.
“Courage?” muses José. “Yes, I think I have a lot of courage.” So does everyone around him.
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