- The Washington Times - Saturday, March 13, 2004

Marcia Rivera has come home to a warm fireplace and supportive friends in the heart of Bethesda for nearly six months. But Ms. Rivera did not get this prime piece of real estate by lucky purchase. It was a horrible turn of events that landed Ms. Rivera, from Mexicali, Mexico, and her 16-year-old son, Alejandro Garcia-Rivera, here.

Alejandro was diagnosed with leukemia a year and a half ago. After treatment from his local doctors did not work, he received a stem-cell transplant at the National Institutes of Health last fall. He is recovering after undergoing the transplant in October. His father was the donor.

Ms. Rivera — and Alejandro when he is well enough — have been staying at the Children’s Inn on the grounds of NIH. The inn is a peaceful respite during a stressful time. It can house up to 37 families at a time, all of whom have a child undergoing treatment at the various institutes at NIH.

The inn, with its soft lighting, cozy couches and private rooms big enough to house a family, is a place that feels like a home, not a hospital.

“This is a lot better than spending this time in a hotel,” Ms. Rivera says. “A hotel can be so cold. Here we can share the experience with others. I can talk with mothers. We have been through the good times and bad.”

That was exactly the vision of the Children’s Inn when it opened in 1990. The inn is located at NIH, but it is a private, nonprofit organization that runs with help from corporate and personal donations and the assistance of more than 200 volunteers.

Some patients stay for a night or two. Some, like Alejandro, are here for months. There is no charge for the treatment at NIH, and there is no charge to stay at the Children’s Inn. There is no criteria as to who gets a spot at the inn. It is based on availability, but when the inn is at capacity, priority is given to the youngest and sickest patients.

The inn’s goal is to help keep families together, says the Children’s Inn Executive Director Tyrrell Flawn.

“This is a way of empowering patients and their families,” Ms. Flawn says. “They have some control during a time when they have so little control.”

Families keep that sense of control by caring for themselves while they are at the inn. There is no maid service. Families cook for themselves in communal kitchens or order takeout from the vast book of menus kept at the front desk. Siblings are welcome.

“Parents are responsible for their children here as they would be in their own family,” Ms. Flawn says. “Our philosophy is that this is their home.”

Family-centered care

The Children’s Inn, as well as other facilities like it at hospitals around the country, are formed around the concept of family-centered care. Family support is considered crucial for children with special health needs.

The goals of family-centered care, according to the American Academy of Pediatrics, is:

• To respect the child and his family.

• To honor racial, cultural and socioeconomic diversity and its effect on the family’s experience.

• To recognize and build on the strengths of each child and family.

• To support choices for the child and family about approaches to care.

• To promote normal living patterns.

• To view parents and professionals as equals in health care.

• To empower each child and family to discover their own strengths, build confidence, and make choices and decisions about their health.

“We want to make sure that families feel supported as a member of the health care team,” says Bev Johnson, president and CEO of the Bethesda-based Institute for Family-Centered Care, a nonprofit advocacy group not affiliated with the inn.

Several studies have shown that family support eases anxiety for parent and patient, Ms. Johnson says.

“There has been this notion that families are visitors in this situation,” she says. “That is crazy. We are not visitors in our loved one’s lives. Health care is not just a biomedical science. We need to think about a patient’s emotional, spiritual and social needs, too. When a child is very sick, the family can be isolated from its normal network.”

The Rodriguez family, of Veracruz, Mexico, brought their own network with them when they arrived at NIH last fall.

Armando Rodriguez, 20, is suffering from myeloblastic leukemia. He underwent a stem-cell transplant at NIH in January. His mother, Aracely, was the donor for the transplant.

The Rodriguezes — Aracely, her husband, also named Armando, and their 10-year-old daughter, also named Aracely — have been staying the Children’s Inn since early December.

Mr. Rodriguez has taken a leave from his job as a financial planner to be with his son. One parent or another was with Armando at all times when he was in the hospital.

“We basically just saw one another on the bus to the hospital,” Mrs. Rodriguez said through an interpreter.

Meanwhile, young Aracely has made the best of the situation. She is usually present for the evening crafts sessions and other activities at the inn. She can also be found making up games with other siblings in one of the inn’s many playrooms.

A school bus picks Aracely up each weekday to take her to Wyngate Elementary School in Bethesda, where she is a fifth-grader.

“At first I didn’t understand a thing, but every day I am learning more English,” Aracely said through an interpreter. “The school is very pretty.”

Armando, meanwhile, has made friends with Alejandro and other teenage patients here. They play pool and video games together and hang out in the inn’s computer room.

“We are all friends,” says Armando, who says he has been concerned about his friend, Roque, whom he met at NIH and who recently suffered a setback in his treatment. “We have to try and spend time and forget why we are here.”

What families want

The Children’s Inn is preparing to open a large addition that will nearly double its capacity.

The planners went to the families and asked what they would want in their “house.” Families answered with a long list, so the addition will have, among other things, an exercise room; a business center so parents can telecommute; a teen lounge with a big-screen TV; an art studio; and a large family lounge.

The new rooms will also be connecting suites, so families can bring even more members if they want.

What they won’t find here are treatment rooms or medical staff.

“We are very adamant,” Ms. Flawn says. “No white coats come in the door. For that reason, you see children bounding off the shuttle bus and heading for the playground. They can just be kids.”

Michelle Hofhine knows that experience well. Her 9-year-old daughter, Nicole, suffers from brittle bone disease. The family has made at least 30 trips to NIH and the Children’s Inn since 1995.

“It’s our second home,” says Mrs. Hofhine, a nurse who lives in Camarillo, Calif. Nicole has been involved in several studies and treatments at NIH.

However, it is the special events that go on and the small treats that are given out at the inn that makes Nicole actually look forward to returning to Maryland every three months or so.

“I laugh because I have to plan trips around the inn’s social activities,” says Mrs. Hofhine, who said she arranged her December trip to coincide with the Ritz-Carlton’s Teddy Bear Tea Party at the inn.

“One time, Miss America came to visit and she brought her crown,” Mrs. Hofhine says. “I mean, these kids are in such a bad situation, and then they get to wear Miss America’s crown for a minute. It was just incredible. Our closets are full of the gifts we have gotten there.”

Mrs. Hofhine says Nicole particularly loves the Thoughtful Treasures program, where patients and siblings get small surprise gifts in their mailbox each day. It could be anything from an encouraging note to a stuffed animal.

“We have gotten tons of Beanie Babies,” Mrs. Hofhine says.

But more importantly, the Hofhines say they feel at home, even though they usually leave Nicole’s father, Rick, and 3-year-old sister, Jackie, back in California.

“I can get in from the airport and make Nicole some macaroni and cheese at 11 p.m. at night if I want,” Mrs. Hofhine says. “And the kids can get away from the hospital and from being poked and prodded and all that.”

More info:

Books —

• “What About Me? When Brothers and Sisters Get Sick,” by Allan Peterkin, Magination, 1992. This children’s book is a story about a child coping with the emotions of a chronically ill sibling.

• “Childhood Leukemia: A Guide for Families, Friends and Caregivers,” by Nancy Keene, O’Reilly and Associates, 2002. This book, by a local woman whose son survived childhood cancer, has advice on how siblings and parents can offer emotional support when a child is ill.

Associations —

• Institute for Family-Centered Care, 7900 Wisconsin Ave., Suite 405, Bethesda, MD 20814. Phone: 301/652-0281. Web site: www.familycenteredcare.org. This nonprofit advocacy group works toward raising awareness of family- centered care. The group’s Web site has information and message boards for parents of young patients.

Online —

• The Web site for the Children’s Inn at NIH (www.childrensinn.org) has information for parents and children. There also is volunteer information, donation information and a wish list of items needed for the new wing.

• The American Academy of Pediatrics (www.aap.org) has a policy statement about family-centered care on its Web site.

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