Pulse of Longwood takes you inside one of the nation’s largest hubs of hospitals and biomedical research.
Kaylen Gaston and Mark Bell had no idea what was in store when they boarded a plane for the first time in their lives, rushing their 2-month-old baby from Texas to Boston for brain surgery. Through a bumpy medical odyssey and a startling cold snap, they had one thing to rely on — a free place to sleep in a spacious home in Beacon Hill.
Gaston and Bell are among a growing number of out-of-town families who, struggling to pay for expensive hospital care, are staying in strangers’ guest rooms during their visits.
The couple, a 23-year-old bank teller and a 24-year-old machinist, landed in town this month with their baby girl, Lynkin. They had plenty to worry about: Their baby was suffering from encephalocele, a rare neural tube defect that caused her brain to protrude in a sac outside her skull. Texas doctors had warned them that surgery might lead to fatal strokes, her father said. But after a second opinion, they decided to go through with the operation at Boston Children’s Hospital.
To pay for the trip to Boston, Gaston and Bell held a fundraiser at a restaurant outside Fort Worth, selling T-shirts that read, “Prayers for Lynkin. Fight like a princess.”
They didn’t have to ask their friends and family to pay for pricey Boston hotels. That’s because they found Hospitality Homes, which helps out-of-towners visiting patients at Boston hospitals find free places to stay with volunteer host families. Since its founding in 1983, the not-for-profit has served over 15,000 families, according to executive director Marianne Jones. And it has inspired similar volunteer networks in Stanford, Calif., and Philadelphia.
People trek to Boston’s medical mecca from around the world for cancer treatments, clinical trials for rare diseases, and cutting-edge procedures, such as face transplants or surgery inside a mother’s womb to repair a fetal heart. There is some discounted housing — Children’s has 35 bedrooms for families, and the Ronald McDonald House and AstraZeneca (AZN) Hope Lodge Center offer housing for cancer patients and their caregivers — but it’s not enough to meet the demand, Jones said.
Traveling families searching for a place to sleep can face sticker shock: Even with a medical discount, nearby Boston hotels cost $109 to $169 per night. And if you’re looking for a room around graduation day, the Head of the Charles, or the Boston Marathon, good luck.
“There are times when there really is nothing to be found in Boston,” Jones said.
With over 60 volunteer hosts, and two donated apartments, Hospitality Homes still routinely has waiting lists for housing and needs more volunteers, Jones said. Hosts, who go through a criminal background check, range from single people and young couples to empty nesters and retirees. They include people who work inside Boston hospitals, like Dr. Louis Caplan, a neurologist at Beth Israel Deaconess Medical Center, who has been hosting families in Brookline with his wife, Brenda, for over 20 years.
During that time, the Caplans have witnessed great transformations, such as when a woman from India regained her power of sight.
Brenda Caplan, a former nurse, said the program has also helped her see hospital care from the patient’s perspective: what it’s like to fly in from South America seeking help with a rare disease and leave in disappointment, or watch your kid get an overdose of a seizure medication. Sometimes she steps in and advocates for patients at the hospital, she said.
Guests travel from around the country and as far away as the Gobi Desert in Mongolia. To qualify for housing, they must be supporting a patient in active treatment at a Boston-area hospital. They must live more than 50 miles from the hospital, and have a home to return to after their stay. The majority are low-income families, according to Jones.
For Gaston and Bell, Hospitality Homes offered something even the fanciest hotel doesn’t: a warm embrace at the end of a long journey.
After surviving their first plane flight, the couple arrived at the four-story brick home of Martha and Joel Pierce.
“As soon as we got here, she just gave us a big hug,” Bell said of Martha Pierce, a former education advisor to the late Boston Mayor Thomas M. Menino who now works at Massachusetts General Hospital.
Pierce and her husband became empty nesters after their four daughters grew up and were trying out hosting through Hospitality Homes for the first time. They offered the Texans a spacious suite, the third and fourth floors of their home. And they gave them some equipment their grandkids no longer needed, a baby carrier and a navy blue snowsuit.
The snowsuit was well-timed: The couple arrived from Texas before the coldest Valentine’s Day in over 80 years, with a windchill of minus 36 degrees. The couple had to buy winter coats for themselves.
Lynkin’s surgery went well. But while visiting her daughter in the neonatal intensive care unit, Gaston found herself crippled by such pain that she couldn’t walk, she said. She was admitted to the nearby Brigham and Women’s Hospital, where she had surgery for gallstones. That left her boyfriend running back and forth between two hospitals.
“Luckily, it’s connected” by indoor hallways, noted a remarkably cheerful Gaston, speaking by phone from her hospital bed.
Pierce said she has been blown away by her visitors’ resilience.
“I went into this thinking, OK, this’ll be a nice thing for us to do,” she said. “But I have already gotten so much more out of this program” than she imagined.
“They are such an inspiration for us,” Pierce said.
Bell called the arrangement “fantastic.”
“Without the hospitality home, I’m not sure where we’d be,” he said. “We’d probably be in a pretty bad spot. We’d have to be selling stuff or something. This just took a huge weight off.”
If all goes well, the couple plans to fly home Saturday with Lynkin, after 17 days.
Pierce has already invited them to come back and stay again once they are all healthy, so they can see the Boston sights beyond the hospitals.
“I am so hoping we’ll be able to stay in touch with them,” said Pierce. “We’ve gotten so attached to them, even though it’s been just a week.”