Since 1870, Children's Hospital has been saving the lives of critically ill patients. But for children who cannot be saved, the hospital recently started offering a home treatment program. This fall, it helped make the last months of a young Virginia boy a little happier than they might have been. My associate, Alexandra B. Stoddard, has the story of a boy named Ian. Ian Campbell died of cancer on Monday morning. He was four years old. However, Ian's last days were not spent in a hospital bed that wasn't his, waiting for his parents to return and wondering what his brother and sisters were doing. Ian died at home. He spent his final days with his family, in his own room, surrounded by what was familiar and safe.
In the last months of his life, Ian was treated through Children's Hospital Hospice Services, one of 14 programs in the nation to specialize in full medical care at home for patients under 21.
"Because of the unnaturalness of a child dying when we are such a curative society, there is a tremendous sense of unfairness," said Janice Miller-Thiel, administrator of the six-year-old program. "But we can change how they die. Kids have the right to die with dignity, comfort and love."
Susan Campbell discovered her son's illness when she and Ian were visiting her mother in Manassas in April, 1989. Susan's mother remarked that Ian did not look well because his abdomen was distended. Susan thought at first that the bulge was just baby fat, since Ian had been a chubby baby. Still, she took her son to Children's because a friend of hers was a doctor there.
Ian was diagnosed that day as having a Wilm's tumor in his kidney. He underwent surgery the following day and chemotherapy was started immediately.
The Campbells decided that for Ian to receive the treatment that he needed, they should move to Manassas from their home in El Paso, Tex. Susan and the children moved that May. Her husband, Tom, a federal government immigration agent, was transferred in August.
This past summer, Ian was taken off chemotherapy for a while and did very well, according to his parents. But at the end of July, Ian was limping and doctor found new tumors in his legs. They began radiation therapy, but by September they found tumors in his spinal cord.
"Ian was in a lot of pain," said Tom. "They told us that they could continue to treat him but that it would be futile. We decided just to stop."
On Sept. 17, the Campbells began hospice home care. Staff members arrived at their home to set up equipment and supplies, and to orient the Campbells to their son's new care.
"It seemed like Grand Central Station. I thought maybe I had made a big mistake," said Susan. "I was really worried about the idea of having a nurse here." However, she later was grateful "because I didn't realize how much care he needed."
Ian responded extremely well to being at home with his sister Siobhan, 2, and twins Alexandra and Sean, 13 months. Susan called it "a major morale booster for him." She said he was "very happy" once he realized he wasn't going back to the hospital.
The Children's Hospice Services staff totals about 20 people, including six volunteers, a chaplain and three on-call nurses who are available to patients at any hour of the day.
Even before his death, Lauren Zeller, Ian's primary case manager, carried a picture of Ian with her. It was mounted in a photo album that contains snapshots of all the hospice children for whom Lauren has been responsible. In his picture, Ian is sitting in the bathtub and smiling into the camera.
The Campbells are especially grateful to Lauren for speaking openly with them about Ian's impending death. "Lauren was really the first person who ever said the word 'die.' Everyone else would use different words. She can say it and it makes it a lot easier," said Susan.
Lauren says that caring for patients like Ian is a privilege. "They're saints," she says. "I take all of my kids very seriously and I carry them in my hear forever."
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.
Many thanks to the following groups that have contributed recently to our campaign:
The Oldest Traveling Duplicate Bridge Club in the Army ($208).
Wheaton Chapter 1435, Women of the Moose ($25).
American Legion Auxiliary, Fairfax Unit No. 177 ($50).
Rockville Senior Associates ($25 in memory of William Lumpkin Jr.).
Employees, Construction Management Division, D.C. Department of Public Works ($100 from the coffee fund).
Shrine of St. Jude Leisure Club, Rockville ($50).
Fort Belvoir Enlisted Wives' Club ($200).
Smuggling Investigations Division, U.S. Customs Service ($150).
Altrusa Club of Montgomery County ($100).
Lou-Bon Gems and Rocks, Baileys Crossroads ($35).
Staff, Little River Veterinary Clinic, Fairfax ($25).
Women's Auxiliary, Plumbing Heating & Cooling Contractors of Northern Virginia ($100 in honor of the men of the association, and an additional $200 in honor of Dorothy Sanborn).