Friends for life
UF’s Streetlight program gives teens with chronic illnesses what they sometimes need most, a friend
By April Frawley Birdwell
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The scar cuts across her knee and thigh, visible when Jackie Morse stretches her slender legs out on the hospital bed. Like the scarf the 16-year-old carefully ties around her head, it’s a not-so-subtle reminder of the bone cancer she was diagnosed with last summer.
But today in Jackie’s room on Unit 42 in Shands at UF, the subject is painting — her nails and a ceramic mug she is decorating for an auction. Not cancer.
“I messed one of them up,” Jackie says, glancing first at her manicure and then at Jessica Greer, a UF medical student who’s sitting in a chair across from her in the dim room with green and blue stripes stretching across the walls.
A volunteer with the program Streetlight, Greer laughs and leans over to inspect the botched nail, which she painted earlier in the week. Sick from her chemotherapy, it had been a rough day for Jackie that Monday. So Greer worked on the girl’s fingernails and toes. And they talked.
They have known each other for a few months now, since Jackie started coming to Shands for her chemotherapy. Greer giggles and jokes with Jackie. She paints her nails. She offers sage advice about what quotations to paint on the mug. And Greer has sat with Jackie when she cried over losing her hair, a traumatic moment for any patient, let alone a 16-year-old girl.
“It sucks not having any way to be a normal student in high school,” Jackie says. “I am always in the hospital two or three weeks out of the month.”
It’s a complicated place, that world between childhood and adulthood. Navigating the social hierarchy of high school is confusing enough without adding a chronic illness, pain, worry about dying and long stays in the hospital to the mix. And while doctors and nurses can care for these patients medically, they can’t provide one of the most critical components teens need to cope and live with illness — friends who get it.
That’s why in 2006, Rebecca Brown, M.Div., founded Streetlight at Shands at UF, a peer palliative care program geared specifically for adolescents. This team of heavily vetted UF student volunteers is an in-demand social network for teens and young adults in the hospital. And it’s the only peer-to-peer palliative care program for teens in the country.
Unlike hospice care, which is offered at the end of life, palliative care is support that is offered throughout a patient’s illness starting at the time of diagnosis, regardless of the patient’s outcome or prognosis. The American Academy of Pediatrics supports this model of care.
“I cannot stress enough how important peer support is at this age,” says Brown, who has worked with adolescents her entire career. “For adolescents dealing with fears of a relapse or constant pain, these issues affect their compliance and how the treatment plan works. They are teenagers so they can be anxious, withdrawn and depressed. It’s natural to look for support and comfort from their peers.
“Sometimes our team members are getting texts from patients saying they are coming in before I even see it on a chart.”
The team
It’s Thursday afternoon, the eve of spring break, and two groups of Streetlight members are crowded into the “Tree Room” on the fourth floor of Shands Children’s Hospital at UF. One group has just spent the afternoon visiting patients in their rooms; the other is gearing up for “Lounge,” a time set aside for teens to hang out.
Brown and assistant director Amy Bucciarelli, M.S., hold meetings like these daily to make sure the volunteers on duty that day are plugged into what’s happening with their patients. Who’s in. Who is having a bad day with chemo. Who’s gone home. Who needs support.
If the volunteers are the patients’ support system, Brown describes herself as the volunteers’ support. She’s not only their leader but their guide, shepherding them through the heartbreaks they face. In all, Brown has about 67 students on her team. She’s picky about who volunteers — recommendations come from doctors and other members — and has a waiting list 80 people long.
“I tell them it’s not easy. We ask them to partner with these kids through their whole treatment,” Brown says. “And some of our patients die.”
Back from visiting a patient, Shay Charles reports to the group how the young man was doing — in and out of pain — and leans back in her chair in the Tree Room. Charles is a member of the group’s sickle cell team. Although the group sees any patient between 13 and 25, it has a specific focus on patients with cancer, cystic fibrosis and sickle cell disease, as well as their “frequent flyers,” teens who have been admitted more than three times in a year. Brown has three drawers stuffed with reports about their frequent flyers — information like what hobbies a patient has and what movies they like. With teens, understanding things like this can be a key to opening them up and making a connection.
Unlike some of her peers, Charles has a built-in way to relate to what her patients are going through. She has sickle cell disease, too.
“In high school, I missed school so much people thought I had AIDS because I wouldn’t share that part of my life. I didn’t start speaking about it until I joined Streetlight and Miss Rebecca pushed me to,” says Charles, who will graduate this year and hopes to go to nursing school. “I am grateful for that because now I feel my job is to bring awareness to it.”
Shay has befriended many of her patients, including Giorgio William, who is now a member, and Teka Williams. At first, having someone come in her room felt a little awkward to Williams, a Santa Fe College student whose sickle cell disease led to a stroke when she was 10. But once she began to talk to Charles and other members, she realized how much they had in common.
“It keeps your mind off the pain and what is really going on, and it makes you feel like you have a friend in the hospital and you are not just there waiting to get better so you can hurry up and go home,” Williams said.
We get to carry each other
“Awesome at pedicures” is probably not a skill Jessica Greer will add to her curriculum vitae. But her deftness with a fingernail polish wand has brought her some of the most meaningful moments she has had with patients.
A family whose daughter she’d known for three years called her in the room when the teen was near death for one last pedicure. They picked the colors; Greer painted.
“A lot of times we do butterflies to help them with their flight to heaven. I call it sending them to heaven with a pedicure,” says Greer, who has been with Streetlight for nine semesters, since her second year of undergrad. “There are at least six patients I have done that with, and I will never forget any of those moments.
“Sometimes, it comes down to there is nothing else to do, so you support them and that is what this program is. We get to carry each other.”
Volunteers learn to provide comfort for those with chronic illness, pain and sometimes death. For most of the program’s volunteers — the majority are pre-med students — these experiences can help prepare them to be better, more compassionate doctors. But it is still difficult, particularly considering how close they get to their patients.
“It is not just confined to volunteer hours, you become emotionally attached. It’s a friendship,” says Ryan Berger, a volunteer and leader of the group’s cystic fibrosis team.
The friendships Tim Penn, a 17-year-old frequent flyer with cystic fibrosis, has made in Streetlight have helped a lot this past year. Stress at home has affected his health. He’s been in the hospital four times the past year, each time for about two weeks.
“They are just trying to keep your mind off being in the hospital,” Penn says. “Their focus is 100 percent on the patient.”
Streetlight members also encourage patients, bringing them laptops to do their homework, tutoring them in math and talking to them about their goals.
“A lot of sickle cell patients are out of school so much they don’t have friends,” Charles says. “There are patients who want to give up, and that is where we step in. Most of our job consists of letting them know we are trying to make it, they can, too.”
Often, the work Streetlight members do with patients helps doctors and nurses, too.
“We can learn how patients really feel about their illness and pain, what is happening at home, even how they are feeling about death and these are things we might never learn if there weren’t people available to support the patients in this way,” said William Slayton, M.D., chief of pediatric oncology in the College of Medicine.
The whole journey
Sitting outside the Park Meadows rehabilitation facility in Gainesville, Michael Starling and Andrew Resnick chat, about the Gators and baseball. They’re both fans. Andrew travels from Tampa — he graduated in May — for his Streetlight shift every Wednesday and he stops by to visit Michael on his way.
“If you are in place like this, to have somebody to look forward to come see you and know someone is always thinking of you, nothing is better,” says Starling, 23, who was born with spina bifida. “That is what keeps me going.”
Streetlight doesn’t stop at the hospital doors … or at adulthood. One of the key areas the group focuses on is helping patients — specifically those with cystic fibrosis — transition from pediatric care to adult care.
It’s a scary move, leaving doctors they have always known for new providers, and a new part of the hospital. In part, it’s good news: Patients with cystic fibrosis didn’t always make it to adulthood in years past, but advances in care have improved treatments and outcomes. But their lives are still limited, and for some, the move to adult care can be a frightening admission that the end is getting closer, Brown says.
Cystic fibrosis patient Josh Burch, 19, isn’t worried about switching doctors but says the difference between the way the pediatrics floor looks, with its brightly colored walls and décor, and the way the adult floor looks is stark and may affect how younger patients feel.
“When you are on the pediatrics floor, it really feels like you are there to get better and you are going to get out,” Burch says. “One of the first emotions I felt when the elevator opened (to the adult floor), and I saw what the floor looked like, was like ‘Wow, people come up to here to die.’”
To help patients get through the transition, the Streetlight team works closely with cystic fibrosis patients, producing a yearbook to remind them of their pediatric care team and introduce them to their adult team.
“This transition to adult care is very important. When you get to be 20 or 25, you have other problems pediatricians don’t take care of,” says Richard Bucciarelli, M.D., chair of the College of Medicine department of pediatrics. “This program is unique. You won’t find anything like it anywhere else.”
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Now home in Deltona, Jackie Morse will be back at Shands at UF in April for her last round of chemotherapy. The past several months have not been easy. But she feels better about coming to the hospital knowing she has friends here.
“Everybody in Streetlight is a little older than me, but I feel like I can talk to them openly and they can still give me good advice and help me cope with things. They are really good listeners,” she said. “Whoever’s idea this was, I am so thankful.”