by Zach Read - firstname.lastname@example.org
Photos by Max Englund - email@example.com
No matter how Payton Lawson may be feeling, she wants to see her best friend.
“If all she’s felt like doing is sleeping, she’ll wake up for Lindsay,” laughs Payton’s mom, Tina, from Payton’s room at N.C. Children’s Hospital. “She asks, ‘When is my best friend coming?’ I’m not going to be the one to blame if Payton misses her.”
Fortunately, Lindsay is never too far away – and rarely is she too busy – to see Payton. A senior at UNC, Lindsay is president of Carolina Pediatric Attention, Love, and Support (CPALS), a university student volunteer organization. Serving UNC Hospitals’ pediatric hematology-oncology patients, CPALS volunteers like Lindsay are matched with a patient “pal.” As they get to know their pals, they become support systems for the patients and their families. The program has roughly 75 CPALS volunteers.
Lindsay attests that being a CPALS volunteer isn’t easy, but not because of the time commitment.
“It can be hard, because you want them to feel better, and you can’t always make them feel better,” she says.
And with all she’s been through over the past two and a half years, Payton certainly deserves to feel better. She has been in and out of the hospital for nearly half her life, says her mom. Tina remembers the trouble began when Payton developed a rash a couple months after her second birthday in 2012. Multiple visits to emergency rooms and her pediatrician’s office led to misdiagnosis after misdiagnosis. First it was chicken pox. Then shingles. Payton was eventually admitted to a nearby community hospital, where specialists said she likely had Kawasaki disease.“Finally, I’d had enough,” recalls Tina. “I said, ‘Send me to Chapel Hill, and I’m not leaving until she’s fixed.”
At UNC, doctors found Payton’s liver and spleen were enlarged, and her blood counts were low. After a week of tests, they ruled out cancer and diagnosed her condition as hemophagocytic lymphohistiocytosis (HLH), a rare blood disorder that is notoriously difficult to diagnose.
“It was a long road to UNC, but we’re very grateful that they figured it out, because I’ve known a lot of parents who have similar stories with outcomes much worse,” says Tina.Although Payton’s family initially thought they may have to travel to Cincinnati Children’s Hospital for treatment, they soon learned that Philip Roehrs, MD, an assistant professor in UNC’s Division of Pediatric Hematology-Oncology, had completed his fellowship with HLH experts at Cincinnati Children’s Hospital.
“We were lucky,” says Tina. “I remember talking to my mom on the phone. We were trying to figure out how we could get [Payton] to Cincinnati, because you want what’s best for your child. With the financial issues involved and our having three other girls, it would have been a mess. And then here was Dr. Roehrs.”
Payton had a bone marrow transplant on September 18, 2014. It offers the hope of a cure, but as she recovers over the next four to six weeks, she will need her best friend Lindsay’s support more than ever — as will Payton’s family.
“When Lindsay comes I can take a break, which is really nice, because I’m here all day, 24 hours,” says Tina. “Before she comes, she asks if I need anything, and she brings it.
“Lindsay has just been a big, big help,” Tina continues. “But mostly it makes me happy to see Payton happy.”
Lindsay spends plenty of time playing with Payton, who misses her usual playmates, three sisters, ages 2, 7, and 8. Perhaps it’s no wonder then that, more than anything, Payton loves girly things like painting Lindsay’s nails and putting on her makeup.
“Lindsay is so used to it by now,” laughs Tina. “She lets Payton do whatever she wants to her. I swear, when she leaves here she nearly always looks like a clown.”Sometimes CPALS like Lindsay do much more than play with their younger friends. The day after Payton’s transplant, which came from a volunteer matched unrelated donor, Payton suffered a seizure. Lindsay was there with Payton’s grandmother, great-grandmother, and two older sisters at the time, and as medical personnel attended to Payton, Lindsay remained calm and entertained Payton’s sisters, who were, naturally, scared.
“She distracted them,” recalls Tina. “Everyone was of course panicked, but Lindsay took the time to work with Payton’s sisters and keep their focus on other things.”
In as much as Payton and her family have benefited from having Lindsay as a member of Payton’s extended care team, Lindsay has gained much from her experience in CPALS, which extends back to her freshman year at UNC. The nursing student cites learning many lessons, including that families often know the little things about their child that help clinicians provide better care. She has also learned about the unique needs of pediatric patients.“It is so important to remind yourself that these are children,” Lindsay says. “They aren’t little adults. They need to be treated like kids. They need time to play, and they need consistency.”
Several days after Payton’s bone marrow transplant, Lindsay stops by the Children’s Hospital for her usual visit. Tina dutifully awakens her daughter, who perks up at the sight of her friend. Payton hasn’t been feeling well, and her throat is bothering her due to mouth sores caused by the transplant, so she is quieter than usual. Nonetheless, the best friends color together and do each other’s nails while watching YouTube videos.
“Is Lindsay your best friend, Payton?” asks Tina.
Payton nods, flashing a rare post-transplant smile.
“You’re my best friend too, Payton,” Lindsay says. “Did you know that?”
Update on Payton
On Nov. 2, Payton lost her battle with HLH. A few weeks later, her mom, Tina, participated in the 2014 N.C. Children’s Promise Radiothon, sharing stories about Payton and her care. “We feel that we not only lost Payton, but we lost the providers, who were like a second family to us,” Tina says.