Cameron, it would seem, is living the most carefree of childhoods. Earlier in the day his mother, Shelly Werth, a 34-year-old bookkeeper, bundled him up for a ride through the countryside on his father's ATV. Days before that, he was out in his stroller, choosing the pumpkins that decorate his family's farmhouse in rural Lock-port, N.Y. But just three weeks before Halloween, when Huff asks Cameron what kind of costume he'll wear trick-or-treating, a shadow crosses his mother's face. That day, she fears, may never come.
In July 1999, at age 1, Cameron was diagnosed with a virulent brain tumor known as an ependymoma. Doctors performed surgery to remove it, but the tumor has since recurred and spread. Seven weeks ago, when Cameron suddenly began vomiting and experiencing severe head pain, Shelly—whose husband, Rick, 35, is a county sheriff's department corrections officer—rushed her son 28 miles to the Children's Hospital of Buffalo. There they were met by Huff, who has been caring for Cameron since he was first diagnosed and who now realized that the little boy had reached a turning point. It was time, she gently suggested, that Cameron, who had received morphine during his hospital stay, be prescribed the drug at home. "Every parent is fearful of that," Huff
explained, as the boy's mother recoiled at the news. "But morphine works better than most painkillers and is very safe for children."
For a moment, Shelly struggled just to comprehend what Huff was telling her. Then she asked simply, "How much time do I have with him?" Huff replied softly, "The tumor is slowly growing. We can control some of his symptoms now. You can take him home, and he is going to be with you for a while. And you are going to have a good month together." At that, Shelly, her eyes filling with tears, cradled her son. "I have to stay strong for him," she said, her voice trailing off. "They don't know how long he has to live."
Each year in the United States, 55,000 children age 18 and younger die—some in accidents, some because they were born prematurely, others because they were afflicted with illnesses or hereditary disorders with obscure names most of us have never had the misfortune to know. The brief lives of many of these children end amid the beeping monitors of intensive-care units or in the back of an ambulance. But now, thanks to Huff and a small number of people like her, there is an alternative provided by the growing pediatric-hospice movement. Given specialized medical care, many children now have the opportunity to finish their lives not in impersonal, unfamiliar surroundings but at home with their family, pets and favorite toys. "A child's diagnosis with a life-threatening condition can be a shattering experience for the entire family," says Ann Armstrong-Dailey, founder of Children's Hospice International, an advocacy group. "Children's hospice care allows a family to do everything they can to make the most of every moment they have left."
Most Americans think of hospices as facilities offering inpatient care to terminally ill adults. "But hospice is really a philosophy of care given in all sorts of different settings: the home, the hospital, a nursing home," says Huff, 40, a veteran pediatric nurse who since 1998 has headed one of the country's leading children's hospice programs, Essential Care, in Cheektowaga, N.Y. "It's a philosophy of holistic care that takes a patient, whether a child or an adult, and treats not only the medical aspect of their life-threatening illness but everything about them as a person, including how they want to live with what time they have."
Still, just two decades ago pediatric hospices were a rarity in the U.S. In 1983 only four of 1,400 hospices accepted children. Today, of the 2,500 hospices nationwide, 247 have programs that serve dying children; some of those care for kids who may recover from serious illnesses. Essential Care, one of the first such programs, was founded in 1987 in conjunction with Children's Hospital and the renowned Roswell Park Cancer Institute, also in Buffalo, where Huff began working in 1982. Then specializing in pain management, she treated terminally ill children and remembers how, in an attempt to provide home care for them, she was often forced to haul medical equipment in the trunk of her car and pound nails into walls or mantels in order to hang IV-drip bags. "We did what we could," she says.
At the time, a patient Huff once treated was David, a 2-year-old who had cancer. "Blond and beautiful, like an angel," she recalls. Then one day, standing at the hospital nurse's station, she saw the boy's father coming down a long hallway carrying his son's limp body. "The father had this look on his face that I can't describe," Huff recalls. "He asked, 'Is he dead?' "
That experience became an epiphany. "Kids were dying in cars [en route to the hospital] or as soon as they came into the unit," says Huff, who vowed that day that she would try to change things. "What struck me was that it could be different. Families wanted to care for them at home." Today the center has the backing of the Health Care Financing Administration, which named Essential Care one of five model pediatric-hospice programs in the country and awarded it a $280,000 federal grant. Huff's seven-person staff includes four nurses, two social workers and a child-life specialist (a health professional specializing in the emotional needs of sick children). At the moment they treat 31 critically ill kids, becoming involved in many cases almost from the moment that a diagnosis is made.
For Cameron, that day came a year and a half ago. A healthy baby until he was 10 months old, he suddenly began vomiting in his crib each morning and couldn't keep his balance when trying to pull himself up to walk. "We would sit him up," says his mother, "and all of a sudden he would just fall over." Although assured by her HMO that these were symptoms of teething or an ear infection, Werth wasn't convinced. Two months later, following a CAT scan of Cameron, she and her husband were told that their son had a brain tumor. Says Shelly: "We were devastated."
On June 25 of last year, the day before his first birthday, doctors removed a tumor from the base of Cameron's brain stem. Too young to withstand radiation, he instead underwent weekly chemotherapy. But a year later doctors found that the tumor had re-grown. Without hope of extending his life, the Werths began focusing on maintaining its quality. "We agonized continuously over what we were doing," says Shelly. "We want to give him the best he can have for as long as he has." During the last few months Huff has been an integral part of that process, dispensing medication and providing reassurance. "Shelly has always had a clear vision of what Cameron wants," says Huff. "She doesn't want Cameron to suffer. She will say, 'Tell me what it is going to be like at the end and what I can do.' Now he is outside and playing, living with his family and eating and sleeping in his own bed." And on Halloween he was able to go trick-or-treating after all, dressed as a Hershey's Kiss.
For Shelly, Cameron's illness has been an agonizing journey. "You wake up in the morning and go in and wait for him to say, 'Mommy, Mommy,' or see a smile on his face and just be thankful that he is there," she says. And beyond that? "When something happens to Cameron, I'm thinking, 'How will I ever repay Sue and the nurses for everything they have done?' "
She isn't the only parent who feels such gratitude. For the past five years Essential Care staffer Kathy Orie, 35, has been the primary-care nurse for 8-year-old Derrick Csati, who was diagnosed with a fatal brain tumor at age 2. After two years of remission and several relapses, "Derrick is almost a professional patient. He has been doing this most of his life," says his mother, June, 40, whose husband Tony, 44, is a machinist. Not long ago Orie arrived at the family's Angola, N.Y., home to flush out Derrick's IV line, but the boy refused to stop watching a movie. So Orie patiently waited for 20 minutes before beginning the painful procedure. "In the hospital there are always doctors and nurses telling chronically ill children to do this or that," she says. "Derrick isn't belligerent. He just wants some control over his life."
While Orie handles Derrick's medical needs, child-life specialist Beth Collins, 33, has provided crucial counseling for Derrick's 10-year-old brother Ben. "Because of his age, it's almost like Ben has gone through everything that Derrick has," says June. "But the program is for the whole family. Ben is not forgotten." In addition, the program's social worker, Christina Schweitzer, 42, has helped the family contact foundations for financial help and arranged for a hospital parking pass and for the American Cancer Society to pay mileage for their trips to the hospital. Huff's team, says June Csati, "is such a needed thing when you go through an illness with no end in sight. You wear out family and friends, but the nurses from the program are always here."
Ten miles away, 16-year-old Jeremy Igielinski, a junior at Lake Shore Central High School in Angola and another beneficiary of Essential Care, is hoping to attend school full-time after managing only half-day sessions last term. "I want to study architecture and go to Syracuse University," he says. "They only take 60 kids a year. You need 15 to 20 original artworks to apply."
That goal may be hard to attain, given that Jeremy now spends his waking hours in a wheelchair, suffering from spinal muscular atrophy, the same degenerative condition afflicting his 8-year-old sister Jocelyn. At the moment, Jeremy's mother, Robin, 39, and her husband John, 39, an auto mechanic, are trying to make the family's 102-year-old farmhouse in rural Brant, N.Y., wheelchair accessible. "We've done it all ourselves by reading books and watching shows on TV," she says. "It's a lot of work. People don't realize that when your kids get sick, you're on your own. There's no one to help you."
No one, that is, except Essential Care, which Robin learned about through Jocelyn's classmate Derrick Csati. During the past nine months, Huff and her staff have helped the family get Jeremy's $23,000 wheelchair repaired and found funding to help them pay overdue gas and electric bills. "It's a huge relief when I'm fighting the school to put in wheelchair ramps and insurance companies to pay bills for medical equipment," says Robin. "It gives me peace of mind. I'm not alone anymore."
As a future caregiver, Huff learned her nurturing skills as the oldest of five children of a Niagara Falls, N.Y., electrician and his wife. "It's a close family, a million birthdays and get-togethers," she says. Intending to become a physical therapist, she switched to nursing at D'Youville College in Buffalo and earned her degree in 1982. That same year she married former Army surgical technician Rick Huff, now 46 and a math and computer teacher at Niagara County Community College. A registered nurse at the Roswell Park Cancer Institute, Huff at first worked mostly with adult patients, but "I always kept coming back to pediatrics," she says. "It was very special to my heart."
Today, with two healthy children of her own, Laura, 14, and Zachary, 8, she recently returned to college to pursue a master's degree in nursing, concentrating on pediatric palliative care. "I am extremely lucky to have found something that I do every day that touches your soul in this way," she says. "It's been a learning experience. Every day you are shown how precious life can be."
Susan Schindehette
Giovanna Breu in Buffalo
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