A Place Like Home

The Children’s Inn at NIH provides a warm embrace for sick children—and their families—from around the U.S. and the world

By Mimi Harrison

Rachel Teasley is making a masterpiece. She’s got several circles of Play-Doh laid out side by side, and she’s planning something, but what it will be is a secret. It’s pink and white, it will say, “I Love You” but that’s all she’s saying for now. At 14, she’s allowed her intrigues. Her mother, Glenda, sits next to her, painting a dainty bowl. From Rachel’s happy banter you would never know that this is the best she’s ever felt, and that every day behind her has been a trial by fire. Rachel and Glenda are at crafts class at the Children’s Inn at the National Institutes of Health (NIH) in Bethesda, where Rachel has come for most of her life, while doctors have labored to save her.

Up from Louisiana, they have been at the Inn for several days this November week so Rachel can get her monthly treatment for TNF-receptor associated periodic fever syndrome—TRAPS for short. It’s the perfect term. This ruthless genetic disorder caused Rachel fever spikes of 105, seizures, kidney failure, temporary blindness and crippling pain that trap her in her body, and out of normal life. For years Glenda tended to two TRAPS patients at once: Rachel and Rachel’s father, who suffered from TRAPS and died of it in 1996. His father, Rachel’s grandfather, died from it years before. The doctors in their town of Many, La., had never seen TRAPS and had no idea what to do.

Rachel was treated at Children’s Hospital in New Orleans and at NIH. Their times at Children’s Inn, particularly after the death of Rachel’s father, rescued both their lives, medically and emotionally. “To come here, to a place like this,” Glenda says, “[when] I was like a zombie…[there was] no such thing as normal anymore. Here there’s books and there’s toys and there’s kids laughing.”

The consolation of friendship

Comfort and the consolation of friendship are real parts of healing at Children’s Inn. So is relief from much of the burden of worry.

What is more terrifying to a parent than the threat of disease in a child? The specter of suffering is insuperable. The financial stress and emotional strain it exacts on a family cause damage for decades to come. The Inn, which opened in 1990, helps families lessen the challenge of coping with rare, chronic and intractable disease by offering them comfortable accommodation within walking distance of clinical treatment.

Because the children who stay there are all taking part in NIH protocols—that is, experimental treatments and procedures—medical care is free, as are accommodations. No detail has been overlooked; the place seems designed by FAO Schwartz himself. Since its inception, rooms have been in high demand. An additional wing that opened last year increased its sleeping capacity to 59 families. Planned and run as a private, nonprofit organization, The Children’s Inn is funded solely by contributions. With only 18 full-time and eight part-time staff members, the entire operation depends upon an army of volunteers, 275 workers whose affection and friendliness are constant and obvious. 

A place of empathy

It does not matter if the diseases are different; pediatric illness poses much the same problems, fears and crises in every parent and child. The Inn is a place full of empathy: Nothing need be explained—a wheelchair, a face mask or a deformity. Kids can be normal at the Inn on their own terms.

Jennie Lucca, the Inn’s director of facilities and residence services, says it is crucial that the children be close to their loved ones and peers. “For many of these children, disease is their childhood, their whole reality,” she says. And for much of their childhood, the Inn is home.

Although a typical visit is three to seven days, some children stay until their illness is resolved; some kids stay for a year. There are many children who come for an initial evaluation at NIH and return once a month for several days throughout their entire childhood. Treatment plans vary and change according to advances in knowledge and each patient’s individual condition. Still, there is no need to miss out on being a kid. The enormous lodge offers many amenities—toys, a library, an elevated indoor play area with a tree house, computers, Nintendo, large-screen TV and billiards. There are nightly activities, frequent field trips and interesting visitors (human and canine). Every bedroom is handsomely decorated, and each has an adjoining bathroom. Every child has a personal mailbox and each one has a “Thoughtful Treasure”—a picture frame, or a handmade card—provided by the volunteers. The Inn was planned within walking distance to the NIH Clinical Center, so that most kids can have outpatient treatment and return to a comfortable room, family and plenty of company. And the Inn is officially a No-Doc Zone. Many times, the children endure long and painful procedures during the day. Lucca says the message is meant to be serious and clear: There are no white coats here. No pokes allowed. Enter the Inn and you are home free.

The presence of other parents has been a godsend to Glenda Teasley. Seasoned parents mentor and support new ones; despite initial differences, everyone speaks the same emotional language. One night she found herself cooking in one of the kitchens next to a mother who spoke only Spanish. “We couldn’t understand a word the other said, so we just used hand signals” to work around each other, “and laughed.” The chance to unwind is precious. Illness brings an isolation that depletes both patient and caregiver. The atmosphere at the Inn provides a sense of connection and support that girds against hopelessness and despair.

Glenda is feeling hopeful now. Rachel started a new immunosuppressive medication this fall and, for the first time in her life, she is able to go to public school instead of being home schooled by her mom. As the cherry on top, she’s been asked to the homecoming dance. After her treatments this week, she’ll travel back home with Glenda and go to the dance on Saturday night. “I scored me a man right from the start,” Rachel cracks. This is Rachel’s first shot at an everyday life, and she is chafing to get started.

Keeping cultural traditions alive

At the far end of the arts and crafts table, 6-year-old Eushell Ariel Ramirez Brumley from Costa Rica is making snowmen with his father, Jonathan. Eushell suffers from aplastic aenemia, a rare and serious disease in which the bone marrow ceases to produce the normal complement of cells. Because such patients are vulnerable to infection, Eushell wears a mask over his nose and mouth when he is in the common areas. That doesn’t prevent him from chatting quietly in Spanish with his dad. Their snowmen are accomplished, with whimsical details and trailing scarves. How did they get to be such snowman experts living in Costa Rica?

At bedtime, Eushell puts down his project without much fuss because the rest of his family is back in his room. His mother, Jessenia, is there with his 1-year-old sister, Tiffany. While Eushell washes up and clowns around at the sink, they wait on a bed to snuggle with him at bedtime. Before the Inn, the entire treatment experience was a harrowing one for a child, involving separation from home and friends—long, painful procedures and lonely nights in a hospital bed. It was also an ordeal for parents, who usually faced their anxieties alone and had no respite beyond the occasional nap on a hospital couch or a snack from a vending machine. Far from home and without support, parents were frequently overwhelmed by the emotional and logistical demands of accompanying an ill or sometimes dying child. With three fully equipped kitchens open 24/7, parents at the Inn are able to make a favorite bedtime snack for their child, or talk over a cup of late-night tea with another parent.

What about children who have no family? Recently, two children came to the Inn from light-years away, with only two friends to guide them. Ally Amir Sufian, 9, and Emmanuel “Ema” Eden Tenga, 11, are both from rural Tanzania. Both had been diagnosed with XP, xeroderma pigmentosum, a painful genetic condition that renders its victims fatally sensitive to the sun, vulnerable to blindness and cancers from its ultraviolet rays. XP is rare, but not unknown in the U.S.; in Africa it is virtually unheard of. Living near the equator as they do, the boys might have died had it not been for Emerald Russell, an American volunteer at their rural school for the blind. Medical care at the local clinic was inadequate: An enormous cancer on Ally’s lip had been cut off twice and left to heal, unsutured.

Russell lobbied to bring the boys here to be cared for. She says she pestered embassies, filled out a daunting number of forms, navigated immigration on both sides of the trip, raised $10,000 for travel expenses, and finally secured a place for the boys at NIH. She and Dastan Anthony, a Tanzanian teacher from the school, brought the boys to Bethesda in early July 2005 making them the first Africans ever seen with the disease at NIH.

Ally’s tumor was surgically removed, and both children were tested and examined. They arrived malnourished; a stint at the Inn gave the boys a chance to have three meals a day, proper rest and lots of safe play in a shaded environment. They blossomed. The two gained weight, and became an affectionate, funny and popular pair. In Tanzania, the boys sheltered themselves from the sun by climbing a tree in their schoolyard. The boys’ favorite place at the Inn was the playhouse high in the playroom; it was where they spent all of their free time. In fact, when they were tired or ready for fun, their cry was nyumbani!, the Swahili word for house.

The prognosis for them is good. After their treatment, they returned to their school with medications, vitamins, sun hats, sunscreen and sunglasses. They will be checked regularly at a clinic at the foot of Mt. Kilimanjaro that was established with the help of Dr. Stephen I. Katz, head of the National Institute of Arthritis and Musculoskeletal and Skin Diseases at NIH. Their sojourn at Children’s Inn improved their overall health, extended their life expectancy, gave researchers a precious opportunity for study, and brought terrific pleasure to the other kids and staff.

A private world of two

The outcome is not as happy for every child. Because end-of-life care is not as readily available in other countries as it is here, and because children are frequently too weak to travel, many patients from overseas stay on at NIH when nothing more can be done. Still, some choose to die at home, like Sladjana Kobas, 13. Born prematurely in Bosnia, Sladjana was being cared for in a hospital that was bombed soon after her birth. Of 13 babies, she was the only survivor. Deprived of the oxygen she needed, her eyesight suffered and her lungs were damaged.

After the war, Sladjana’s healthcare became a cause célèbre when a television crew investigated the hospital bombing. Her fellow Bosnians raised money to send her to Russia five times to see eye specialists, the last trip of which was in April 2004. The treatments were successful, but her window of health was brief. Last September, she was diagnosed with a voracious bone cancer that resisted initial treatment in Belgrade and surgery at the University of Florida in Gainesville. Sladjana arrived at the Inn this past May with her father, Stojan, and Uncle Milos. She has metastatic cancer of the lungs. Six months of treatment at NIH have not given her doctors the upper hand; there is nothing more they can do.

Her father speaks no English. He gets up early and bakes bread for her in a kitchen at the Inn, one of the only things he can do for her. He brews Turkish coffee, the dark syrupy “real coffee” they drink at home, and these familiar morning smells are balm for Sladjana even if she does not partake. When Sladjana sits in her wheelchair, Stojan sits next to her silently. She is frail, of course, but beautiful. (When she was well last year, she had started to do some modeling.) Her head is swathed in a scarf. Her eyes are clear, her skin is wan, close to the color of a mushroom. Her smile, when it appears, is a winter sun. She speaks a little English, but Uncle Milos usually translates. Lucky for everyone there is Milos, a sturdy good-hearted Balkan bruiser who regales the room with recollections of the ’90s when he worked as an interpreter for GIs in Bosnia. You can picture him as he describes himself handing out candy to kids, enjoying the access he had to good American cigarettes. Everyone smiles; Milos is an icebreaker. They will leave in three days. There is the feeling that Stojan and Sladjana inhabit a country of their own now, with a population of two. It has its own language, its own customs, it own history, and Milos is its ambassador.

The inspiration of humor—and valor

Children in crisis and dysfunction can be surprising. The staff and volunteers at the Children’s Inn learn by observing the humor, valor and resiliency the patients demonstrate every day. Justin Walker is an example. Justin, age 13, rolls through the front door in his wheelchair, with Marsha, his mother, a calm, attractive suburban blonde.

They come every three months for two or three days from Hershey, Pa., so Justin can be treated and monitored for the brittle bone disease with which he was born. “Osteogenesis imperfecta” rolls off Justin’s tongue as blithely as if he were ordering pepperoni pizza—and leaves his tiny frame vulnerable to shatters and breaks. He has not grown normally, and his tiny face has an elfin look, with down-turned eyes and pointed ears. He says, “I started coming here when I was 3 months old.”

Justin is bright, articulate—and cheerful. “I’m here for re-rodding,” he explains matter-of-factly, pulling up a pants leg to reveal a scar that ruts along his shin. A stronger rod will be inserted in each of his legs for better support. He’ll also have some physical therapy, MRIs and X-rays. Although there is no pharmaceutical treatment for OI per se, he’s on bone-density meds. He and his mother kid a lot; they easily joke about the hassle they used to get from ER staff. Repeated broken bones elicit suspicion. The Walkers resorted to keeping a letter from NIH in the car to attest to Justin’s condition.

His poise and maturity are remarkable. He is a First Class Boy Scout, a drummer in the school band, and has been interviewed by Katie Couric on “Today.” His wheelchair is decked out with school booster badges and stickers. In the middle of a conversation he remembers something and suddenly zips out of sight to go back to the car in the dark.

Justin has a twin sister who does not have OI. If that is a source of resentment, he does not betray it. “She beats on me,” he says—a horrible thought—“and nothing happens, but I turn in my chair and my arm breaks!” Justin says goodnight and heads to bed. As he wheels away, he turns and says, “My face looks like this because of OI. We all look like this.” Treatment starts early in the morning, so he and his mom need a good night’s sleep.

Mostly moms on duty—but fathers come too

The mother-child relationship gets tested and strengthened a good deal at the Inn. Scene: A mother and middle school-aged son are shooting pool in the game room. “Mom,” he rolls his eyes after his mother makes a disappointing shot, “do you understand geometry?” The mother smiles: Just because her kid is sick doesn’t mean he’s not normal! Mothers are the ones who come, mostly; siblings come frequently in the summer. If a single mom must come with a sibling during the school year, Inn staff and social workers at NIH can help parents arrange for the sib to attend a local public school.

But what about fathers?

Victor Toj-Ramirez is here with his 10-year-old daughter, Ana Lucia. He gave up his teaching job in Guatemala to be here, while his wife remains at home with the other children. The rest of their family came this July for a month-long visit; everyone stayed at the Inn. The reunion was a joyous and fortifying, something everyone sorely needed.

Diagnosed with leukemia when she was 5, Ana Lucia was treated repeatedly in Guatemala City. In and out of remission since, she was finally referred to NIH in March 2004 for stem-cell transplantation from her brother, Victor David. She arrived at the Inn in August 2004; the Inn is her home for now. Ana-Lucia had four surgeries in her first month, and the transplant in November 2004. Although she in complete remission from leukemia, she suffers now from grave complications from graft versus host disease, a form of rejection of her brother’s donated cells. Her skin and scalp are covered with beet-red rashes. With her face already bloated from steroids, it is disfiguring, and hard on her spirits. Her liver is inflamed, and she has had trouble tolerating the drugs that might help.

Her eyes are affected, so she cannot make tears normally. She was the first person at NIH to receive a new treatment for this condition; if it is successful, Ana-Lucia at least will be able to cry. The most serious complication of the rejection is lung damage. Ana-Lucia suffers from bronchiolitis obliterans, which prevents her from exhaling properly. It leaves her chest in a permanent state of inflation, and causes leakage of air into her chest wall, neck and back. She had tubes surgically inserted to drain the excess, and may need to have them inserted again. She endures a weekly program of extracorporeal photopheresis, a procedure for which she must lie still in bed for four to six hours while her blood is removed, circulated through a machine that treats her white blood cells, and returned to her body. By anyone’s measure, it is exhausting; for a 10-year-old, it is an ordeal. Victor recounts that she frequently asks during treatment “when it is time to go ‘home,’ to the Inn, to play.” Despite her condition, Ana-Lucia has been able to manage fun and has made friends.

But friendships here can be fragile. Her best friend at the Inn, Dereck Aldana, a fellow Guatemalan of 15, has just died after 18 months of treatment for bone cancer. Her grief was so great that, when Ana-Lucia saw Luvia, Dereck’s mother, she got out of her wheelchair to comfort her. It was no easy task.

Ready to dance

Word spread fast at the Inn that Rachel Teasley is going to a homecoming dance. No sooner did she mention her social success than tom-toms started to thump.  

Doctors rearranged her appointment schedule to give her a few hours free, several families from Bethesda’s Walter Johnson High School collected funds, Lord & Taylor donated a $100 gift card, and Laura King, the Inn’s director of volunteers, took Rachel on a Cinderella spree to White Flint Mall for a dress, shawl, and high-heeled shoes, jewelry, makeup—everything she probably thought she might never have. When they got back to the Inn, Rachel raced up to her room to try it all on. Glenda put some makeup on Rachel and curled her shoulder-length hair. King describes the scene, as Rachel walked into the lobby to show the staff and awestruck volunteers, “We were all just standing there crying. She looked amazing.”

Mimi Harrison is a freelance writer in Washington.