What if you were a teenager who had to visit Children's Hospital hundreds of times for treatment of a chronic illness? In the case of a youth from Prince George's County, the hospital has become a second home. My associate on this year's fund-raising campaign for the benefit of Children's, Lynn Ryzewicz, has his story:
On Nov. 22, Ernestine Johnson and her 11-year-old daughter, Atya, came to Children's Hospital to pick up Ernestine's son, Antoine, 17. He had been there for two days after suffering another sickle cell pain crisis. He was very, very used to it.
His TV was on, as usual. "Toy Story," a favorite movie, was packed in his bag. Antoine and his mother chatted about a nurse who had just had a baby. He read her a poem he had written during this stay. Terrence, a 16-year-old patient and close friend, popped in to say hello. Ernestine knew him well.
"Hello, Terrence," Ernestine said. "Come give me some love. Who's your roommate this time, Terrence? Okay, say bye to Atya."
Ernestine, a day-care provider from Springdale, calls Children's her home away from home. Since Antoine was diagnosed with sickle cell anemia at age 1, he and she have visited Children's more than 300 times. Ernestine said she is lucky because a federal program -- Supplementary Security Income -- pays for Antoine's care.
Sickle cell anemia, an inherited disease, is found primarily in African Americans. It is characterized by short periods of severe pain, known as crises. During a crisis, red blood cells, normally circular, deform into the shape of a sickle and deprive surrounding tissue of oxygen.
A crisis can occur in one part of the body, frequently the hands or feet, or it can develop all over. There is no known cure.
Dr. Catherine Driscoll, of the department of hematology/oncology at Children's, said sickle cell pain is worse than a bone fracture, worse than childbirth. It is brought about by stress, dehydration or a change in temperature. The change from fall to winter is a particularly difficult time for sickle cell patients, she said.
Driscoll said Antoine's is a severe case. In 1997 alone, he was in the hospital 99 times. She commends Antoine for how well he handles the disease.
"He's intelligent and knows the disease better [than other patients]. He tries to manage his pain at home with his family," Driscoll said.
Antoine credits his grandfather, the Rev. Charlie Cummings, who also has sickle cell disease, for giving him good advice on how to deal with the pain. Cummings told Antoine to keep active so he doesn't think about it.
Antoine also deflects pain by concentrating on writing. Screenplays, poems and songs fill up notebook after notebook. Faith and God are recurring themes in Antoine's work.
"Faith is evidence of hope not seen," he writes. "It is to believe in God, to let go. It is never to give up."
Antoine admits that there are days when it is hard to deal with the disease. At these times, he talks with his grandmother, Louise Cummings, whom he calls his best friend.
Antoine's primary distraction is movies. An aspiring film director, he is always watching a video when he's in the hospital. Antoine said doctors regularly ask him which movies to rent for their families. Other patients want to know about movies that have just come out. Antoine always has an answer.
Debbie Freiburg, a nurse on the hematology/oncology floor, said other patients like to gather in Antoine's room to watch the movies he brings in. Freiburg calls Antoine a mentor and teacher because he likes to help younger kids deal with sickle cell pain.
Freiburg remembers Antoine when he was a new patient in diapers. She has watched him grow and mature.
"You feel like you raise these kids," Freiburg said. "You see them from when they are infants and toddlers to when they graduate from high school."
By now, Ernestine Johnson feels close with Freiburg and the hematology/oncology staff. "Sometimes I'll be walking the floor here and a staff member will smile, and they don't change anything, but they make me feel better," Ernestine said.
Antoine has high hopes for his film career. When he becomes famous, he'll invite 40 Children's nurses and staff to the Oscars, he said. When asked why, Antoine replied:
"Because they deserve it."
Antoine, an 11th-grader at DuVal High School in Lanham, wants to go to film school in New York. He said he has reservations about leaving Children's, though.
"Anywhere I go, it'll never be the same," Antoine said.
Our goal by Jan. 21: $650,000.
In hand as of Dec. 28: $308,743.72.
TO CONTRIBUTE TO THE CAMPAIGN:
Make a check or money order payable to Children's Hospital and mail it to Bob Levey, The Washington Post, Washington, D.C. 20071.
BY VISA OR MASTERCARD:
Call Post-Haste at 202-334-9000 on a touch-tone phone. Then punch in K-I-D-S, or 5437, and follow instructions.