Traveling for Treatment

When patients with rare, life-threatening, and chronic illnesses, and their families, must travel long distances for medical treatment, concerns about the costs of travel, lodging, and food can amplify their already significant stress.

Fortunately, a network of nonprofit hospital houses, respite houses, and transportation providers exists to ease the financial and emotional burdens of many patients and families in need, at little or no cost. In this article, we profile three such hospital house programs and a respite house program and include contact information for programs found at some of the major medical centers in the U.S., as well as for nonprofit medical transportation providers.

“I’ve talked to parents who’ve had to quit their jobs, because it’s a full-time job to deal with their children’s illnesses. It’s a real hardship, financially and emotionally,” says Dorie Hightower, media relations manager for The Children’s Inn at the National Institutes of Health (NIH) in Bethesda, Maryland.

“Some families are practically bankrupt from traveling all over the country looking for different treatments, but when they come here, they’re just so relieved that everything is free.”

Primarily sustained by donations, The Children’s Inn at NIH is a nonprofit, free inn for pediatric patients involved in clinical trials at NIH and their families. Since it opened in 1990, more than 12,500 seriously ill children and their families have stayed at the Inn, which can accommodate up to 65 families a night, at no cost to them. (A similar facility, The Edmund J. Safra Family Lodge at NIH, provides lodging at no cost to the families, caregivers and loved ones of adult patients taking part in clinical trials on the NIH campus.)

“What makes us unique is that all of the kids that are staying with us are participating in medical research at NIH,” says Jennie Lucca, chief program and services officer for The Children’s Inn at NIH. “And what that means is that they’re hoping for a cure or a treatment for themselves, while also advancing medical discoveries for everybody.

“The NIH treats the most rare and difficult diseases, and so they participate in protocols for a wide variety of heart, lung and blood disorders, rare genetic diseases, mental health disorders, and cancer,” explains Lucca.

“For example, a child can be diagnosed with leukemia, and leukemia has largely become an illness that’s very treatable, but the children that come to NIH would have a difficult to treat type of leukemia, where they’re really participating in research for a hope for a cure. And there is also a large undiagnosed diseases program at the NIH—a lot of our kids are coming with symptoms, but they don’t have a name for their disease yet.”

Since its Clinical Center opened in 1953, NIH has held thousands of clinical research trials for rare and chronic diseases, including chronic granulomatous disease, pulmonary hypertension, thalassemia, idiopathic pulmonary fibrosis, cutaneous lymphoma, childhood epilepsies, Huntington’s disease, sarcoidosis, myositis, and Gaucher’s disease.

“Parents typically find out [about The Children’s Inn at NIH] through their doctors,” says Hightower. “But I hear quite a few stories about parents who have done internet searches to find clinical trials. I even talked to a family who heard about the clinical trials through their school nurse. Oftentimes, because we’re research, they’re at the end of the line for the typical treatments, so they’re referred here.

“Doctors have said that The Children’s Inn has really empowered pediatric clinical research, because in the past, when people had to stay at hotels in the area, they weren’t able to retain these families in clinical trials, because it was expensive and inconvenient.

“There is no typical length of stay. Some people just stay a couple of days; others can stay for months. We’re right across the road from the NIH Clinical Center. You could send a child back here to sleep, where you wouldn’t have felt comfortable sending them to an area hotel with an IV. They’re able to stay here with their families, whereas otherwise they would have had to stay in the hospital.

“Nobody here wears white coats. It’s a very homelike environment. It’s a place to come back to after a long day at the hospital.”

To that end, in addition to accommodations, the The Children’s Inn also provides a range of recreational, educational, and therapeutic programming for families. While the NIH takes care of the children’s medical needs, The Children’s Inn tends to their social and emotional needs.

“We provide programs and services like financial support, grocery gift cards, therapeutic programs, and programs for caregivers,” says Lucca.

“Families have reflected to me how much it helps them to talk to other people who are in the same boat, so it provides that kind of support to be here,” says Hightower.

“Community or corporate groups come in two or three days a week and serve a homemade buffet dinner, or bring in food on those nights. We also have food supplies that are donated.”

Although there are cafeterias at the NIH Clinical Center, Hightower says that part of the reason that there are kitchens rather than cafeterias at The Children’s Inn is that families like being able to fix their own meals and eat what they’re used to, because it gives them more of a sense of normalcy.

A bus shuttle service takes families from The Children’s Inn to the grocery store and the mall. “We even have volunteers who are willing to go with them, for example, if a family doesn’t speak English well, and wants to go to the grocery store,” says Hightower. “We provide a list of the international food markets in the area, and we really work very closely with the NIH Clinical Center.”

“Every other Tuesday night, we have a bingo game, with prizes donated from the community. Activities can include trips to the ballpark and the circus. We have more than 200 volunteers and a lot of groups that help out.”

Amenities at The Children’s Inn include a teen lounge, a game room, an exercise room, a computer room and business center for the parents, a computer area for the children, a playroom, and a recently redesigned playground that won an award from the American Society of Landscape Architects.

“They thought of everything for children who might have different physical issues,” says Hightower. “There are all kinds of sensory things you wouldn’t see on a typical playground, so kids with all kinds of disabilities can go out there and have a great time.”

“We have a house just outside of campus, the Woodmont House, where we can support another five to seven families, and those tend to be families who are here for a longer period of time,” says Lucca.

“They’re no longer in the acute stage of the illness, so it’s a more transitional environment. They can be a little bit farther from the hospital.

“We are trying to fully and consistently meet patient needs, and that means responding to the evolving clinical needs. Whatever is happening with research and families is where we’re going to grow our programming.

“We have a pilot program called Isolate Inn. It’s a special program for kids who are on contact isolation. We’ve specially retrofitted four rooms at The Children’s Inn for those families, because if we didn’t have the rooms for the families, they would not be eligible to stay here. They would have to stay in a hotel.

“As treatments get more aggressive, there will be more secondary infections like MRSA and C.Diff and antibiotic-resistant organisms, and we will continue to look at that. We know that there’s more research going into stem cells and stem cell transplants, and so we likely will want to support those needs as well.

“It’s such a difficult journey that families are on, so we try to reduce their stress as much as possible and support them. Hopefully when they walk through those doors they feel this sense of home.

“Our mission is to reduce the burden of illness. We want them to be able to focus on what’s happening medically, and we try to take care of everything else.”

Information on NIH clinical research trials and those held at other national and international research institutes can be found at http://bit.ly/NIHtrials

See the sidebar for The Children’s Inn at NIH and The Edmund J. Safra Family Lodge at NIH contact information.

“Nora’s Home is only for transplant patients. That’s all we do,” says Kayla Lehmann, executive director for Nora’s Home for Transplant Patients and Their Families in Houston, Texas. Nora’s Home provides low-cost and no-cost lodging for pre-transplant and post-transplant patients and their families who travel to any of the Texas Medical Center transplant centers, conveniently located near the centers.

With 21 hospitals, 7.2 million visits per year and 171,000 annual surgeries, Texas Medical Center is the largest medical center in the world, and Nora’s Home serves patients of its four solid-organ hospitals. Transplant patients who’ve stayed at Nora’s Home include those being treated for a broad range of illnesses, including pulmonary hypertension, idiopathic pulmonary fibrosis, and nephrotic syndrome.

“We provide housing for patients who have had solid-organ transplants (heart, lung, kidney, and pancreas),” says Lehmann. “The heart and lung transplant patients have to be very near by when they’re waiting for the call. We’ve had patients live with us for three or four months before they get the [transplant] call.

“It’s more than a place to lay your head. It’s a place of camaraderie, education and support. We really do believe that it aids in the healing. It’s more than just going to a hotel room, where they’re alone. We provide education, therapy, and support groups.

Nora’s Home also has a full kitchen and a volunteer program, “Chef for a Day,” with community members, groups, friends and family coming in to prepare meals for families. “It’s really nice, when they come home from clinic or from the hospital, there’s a warm meal waiting for them.”

Post-transplant, Lehmann says, lung-transplant patients stay the longest. “It is very unique. They require a longer stay and a very strict protocol. They seem to be more susceptible to infection than most.”

In an effort to balance availability, Nora’s Home has dedicated 10 of its 16 rooms as long-term stays. In those 10 rooms, some patients stay up to a year.

“Some of the patients post-transplant develop low-grade viruses, and they need to stay near the Texas Medical Center six to eight months post-transplant. For each patient, it’s very unique. With our expansion, we will extend our long-term stay rooms.”

Lehmann says cost is determined on a sliding scale. “Our cost per room is $75 a night, but we have a separate fundraising arm, Adopt-A-Family, and 95 percent of our patients use that fund. We ask what you’re able to pay, and we confirm it with your financial counselor, and your transplant coordinator. Ninety-five percent of our patients cannot pay the $75 per night, and then we tap into our fundraising arm to subsidize that cost. All of our fundraising goes to fund the patients’ expenses. Our community has been very generous with that.”

Patients and caregivers form strong bonds and a sense of community at Nora’s Home. “Once we had a woman from Las Vegas who was here by herself for testing,” Lehmann recalls. “Other guests, who were the caretakers of family members staying at Nora’s home, accompanied her to every test for two days. They didn’t even know her. She ended up getting a transplant, and came back with a family member.

“The minute you walk in the door, there is family, there is friendship, and there is a support system. We’ve all walked the same walk. The struggles are all the same. The support system is there to protect you and to help you navigate. You’re home. Your fears are lessened and your burdens are lightened.

“What I’m hearing from patients is, it’s better than family, because everyone is trying to be so strong with their families, and the dynamics limit their sharing of their fears. And all of the sudden, you walk in to [find] that it’s ok to express your fears with someone who’s walking the same path as you.”

Empathy is a big factor in the sense of camaraderie at Nora’s Home. As with any other support group, says Lehmann, “It’s: ‘Yes, I understand. Yes, I had that virus,’ or, ‘Yes, I’m taking this medicine. Yes, I can’t breathe,’ and, ‘Yes, I needed this oxygen.’ All these things that other people don’t understand. Or it’s that pat on the back that says it’s going to be ok. It lightens your load, and it’s ok to cry. It’s a very powerful place.

“The fears are so strong, and I say this as a transplant patient. Four years ago, I had a kidney transplant. Nora’s Home hadn’t opened when I had my transplant. The first day, I went home from the transplant, and the week after, I had to go for my blood work at 6:30 in the morning, and then go back to see my doctor at 2 o’clock in the afternoon.

“I was lucky. I went five or six miles to my home and took a nap, and had friends drive me back, and the same people that had the blood work were sleeping in chairs with their families, and my first comment was, ‘Oh my goodness—there’s got to be a place for these people to go.’”

Hospitalized seven times in nine months after her transplant due to complications, Lehmann saw the need for a facility like Nora’s Home up close. “People plan for a transplant, but when you get sick post-transplant, it’s life or death. You’ve got to get to the hospital, and you’ve got to take care of rejection or infection very fast.

“These are the people who live 100 miles or a state away, and their wife can’t take off of work, or the kids don’t have daycare. These people were sleeping in their cars, and that’s where I really witnessed the needs. They have to stay nearby for their once- or twice-weekly treatments. The home away from home is necessary if they live too far away to travel back and forth.

“We have 16 family rooms. I would say 85 percent of our patients have one caregiver [with them] at a time. Every family room has two queen-size beds to sleep four and a private bath. For the long-term stays, usually the caregiver or the family members will switch off; they’ll rotate to take care of a long-term patient.”

Although Nora’s Home opened in November 2013, it is completely full, with a waiting list, with plans for expansion, both in the size of the facility, and in the types of transplant patients it accommodates.

“Our plan is to fund the addition of another 20 to 24 rooms within the next 12 months,” says Lehmann. “We are discussing zero-air flow rooms for the post-lung-transplant patients. That would be another layer of protection for them.

“We have MD Anderson Cancer Center here, which does stem cell and bone marrow transplants. Our board of directors will make a decision in December if we will include stem cell and bone marrow transplant patients, which is a whole other unique protocol.

“As part of our expansion program, we’re building the Nora’s Home Transplant Life Center, and it’s going to be an international and national teleconferencing support and education program, with a multi-tiered approach that’s going to be organ- and stage-specific.

“We’re going to have outreach, so, for instance, if you’re the caregiver at home who’s responsible for the post-transplant protocol, we can teleconference you. Caregivers, we’re finding, are the forgotten link. They’re the backbone, and we’re really focusing on them, because many times they’re the make it or break it for the compliance. Many times the transplant goes 100 percent well, but compliance will be the reason the person or the organ makes it years down the road.

“Many patients call in themselves when they’re coming in for transplant testing. There was a patient in New York, for instance, and his doctor for lung transplant basically said, ‘We can’t do anything for you. Go home.’ Someone had told him about transplants at Houston Methodist Hospital and said, ‘Give them a try.’ So he called us directly and made an appointment, and they transplanted him at Methodist. But he called us before he even got into Methodist.

“Once they call us, we confirm with their transplant coordinator that they are coming in for testing. Let’s say they need a flight here. We have some other foundations that provide out-of-pocket expenses for transportation. We have Angel Flights (see sidebar on page 25). We have three or four nonprofits that provide bus fare. We don’t apply directly [for the patients]. We give them the information. Once they get to Houston, we have Ground Angels, and we get them to Nora’s Home.

“Once they’re at Nora’s Home, we have free transportation every 15 minutes to the medical center. And then we also have pantry drives, so even if they don’t have food, we have food for them. We have volunteers that help them navigate the Texas Medical Center, because it is pretty overwhelming. It’s pretty large.

“It’s not a hotel. It’s a home-like environment. You share experiences, and you support each other. It’s a strong bond.”

See the sidebar contact information for Nora’s Home for Transplant Patients and Their Families.

Believe In Tomorrow Hospital Housing

“Primarily we provide hospital and respite housing for critically ill children and their families,” says Kate Sachs, communications director at the Baltimore, Maryland-based nonprofit Believe In Tomorrow Children’s Foundation.

“We define a critically ill child as any child under the age of 17 who is fighting some sort of life-threatening illness. These might include transplant patients, cancer patients and a whole range of other things.

“The hospital housing and the respite housing programs are separate from each other, so it’s a separate application process. Eligibility for each one is a little bit different.”

In Baltimore, Believe In Tomorrow’s hospital housing program provides overnight accommodations for families of critically ill children being treated at the Johns Hopkins Children’s Center.

“For this particular program, families have to be coming from at least 60 miles away,” Sachs explains. “We try to provide housing for those who really have to travel quite a distance to get there. Patients can be seen at Hopkins for a variety of illnesses. “

“If they’re having surgery, or treatment, or follow-up appointments with a doctor, any child who’s being seen at Johns Hopkins for some kind of life-threatening illness is eligible for housing here.

“There is no required cost. We do ask that families make a $20 per night donation. If they can’t afford that, we go to a lesser amount, and if they need financial aid, we can cover the rest of the cost.

“Some people’s insurance companies will cover the cost, or families and friends will, so there are other options, but we don’t turn families away if they can’t afford to stay there.”

Two buildings comprise the foundation’s hospital-housing program. The Believe In Tomorrow Children’s House at Johns Hopkins, across the street from the hospital, is its biggest facility, accommodating up to 15 families a night. “Stays range from one night to a couple of nights, to a couple of weeks, to occasionally, a couple of months,” says Sachs. “Whatever the family is there for, we try to accommodate their stay as much as possible.

“For families that need a longer term stay, we have The Believe In Tomorrow House at St. Casimir in Baltimore, which originally opened for Hopkins bone marrow transplant patients. Bone marrow transplant patients, following the transplant, need to stay within 10 to 15 minutes of the hospital, so this building was dedicated to them. And then, occasionally, if we have an open room, we’ll take other long-term cases, like organ transplant patients and families.

“We do ask that families provide their own transportation. Sometimes families don’t have a car, or they don’t bring their car, because they’re flying in, so we have volunteer van drivers at the house who will pick families up from the airport or the train station and take them back there. If families need to go to the grocery store or the pharmacy, or something that’s not quite walking distance from the hospital, we have van drivers a few times a week, so families can sign up and get around.

“Several different organizations in the city, like the Baltimore Aquarium, the Baltimore Zoo, and a lot of museums, including Port Discovery Children’s Museum, donate passes. So families can go out if they’re having a good day or they’re in between visits and get dropped off at one of these places and sightsee around Baltimore for a day.

“Every family’s room is its own, with two queen beds and a private bathroom. So you really have your sense of privacy, but then there are things like shared TV rooms and playrooms, where you can go and relax and not have to be in a medical setting, but still be with your family.

Sachs says the foundation would like to expand, as there is a growing need for more housing. “Even though the Children’s Hospital expanded last year to allow parents to stay in their rooms more comfortably with children, there are way more children than there are bedrooms. We try to help the sickest of the sick, and we try to have a balance between all the different departments in the hospital and different lengths of stays.

“The environment is very homelike. Our mission is to keep families together and to keep the tradition of a family intact during a child’s treatment and diagnosis.”

Amenities include laundry services, and two full kitchens that were redone last year, so that families can store food and cook meals. Volunteers lead activities and crafts and provide dinners five to six times a week.

“The houses are very supportive,” says Sachs. “We really promote families interacting with one another. We often have families whose children are seeing the same doctors or are there for the same type of treatment. They can really connect and form relationships.”

Believe In Tomorrow Respite Housing

While its hospital housing program is exclusive to patients of Johns Hopkins, The Believe In Tomorrow Foundation’s respite housing is open to pediatric patients with life-threatening illnesses, from medical facilities across the country, and their families.

The foundation’s five respite houses throughout the Mid-Atlantic region offer much needed, no-cost vacation lodging, providing a getaway for pediatric patients and their families who need respite during the child’s illness. Two houses in Ocean City, Maryland; one on Fenwick Island, Delaware; one in Western Maryland and another just outside of Asheville, North Carolina, offer accommodations ranging from a bright waterfront beach house to a cozy mountain lodge.

“The respite housing has a little bit different criteria,” Sachs explains. “It’s a different application and referral process. Children are eligible up to one year after they finish treatment. So if a child completes a treatment, for the following year, they can still use our programs, but then we say they’ve graduated, and hopefully they’re on to bigger and better things, and we always hope that they’re in remission and in good health,” says Sachs.

“This is 100 percent free for families to use. They just have to provide their own transportation to be able to get to the houses and get around when they’re there, because not everything is within walking distance. And we ask that they provide their own meals. We do offer a lot of different discounts and coupons from the local businesses for meals and activities, and all of our families get a welcome basket when they get in.

Two of the houses are dedicated (although not exclusively) to Believe In Tomorrow’s military initiative: the Believe In Tomorrow House On The Bay in Ocean City, Maryland, and the Believe In Tomorrow House at Pinnacle Falls, North Carolina.

“Ten years ago, we realized that military families have extra stress when they have a child with a critical illness,” says Sachs. “One parent might be deployed, or they might have to travel really far to get to a military hospital, so in the middle of this crazy, crazy situation, throw on top all these military situations that compound the problem. We just want to make it a little easier for those families, so if a military family applies, they are prioritized at one of these two houses.

“Families can come from anywhere in the U.S., as long as they meet the qualifications. If the family is willing to fly or drive, they are more than welcome to apply and visit our houses. We hope that they’ll make great memories, and then keep those memories forever.”

See sidebar for contact information for The Believe In Tomorrow Children’s Foundation.

 

Contact us

Did you enjoy this story? Email us your comments and questions and let's keep the conversation going. We encourage you to engage with us and other readers by following us on Facebook, Twitter, Instagram and Pinterest. Every person's journey is unique, and every perspective is valuable to us.