by Zach Read - firstname.lastname@example.org
Two years ago, after taking an exam in the Physician Assistant (PA) Program at Campbell University, Danielle Harris and her classmates remained in the classroom to discuss their answers to the exam questions. While they were debriefing, the conversation turned to the bruises on the back of Danielle’s legs, which her father, James, had noticed one evening in the kitchen of the family’s home in Knightdale.
Danielle asked her classmates what they thought the marks could be. The students had gathered enough medical information during their first year of PA school to speculate on the cause. Their diagnoses ran the gamut from bruises to bug bites to cellulitis.
“I thought they could be from a spider bite,” recalls Danielle. “Nothing stood out about how I was feeling at the time. I was a little tired, but not exhausted. I attributed that to the stress of school – to taking exams and meeting deadlines.”
She admits that she wasn’t overly concerned, nor was her boyfriend, Darryl, who was working at a law firm in Boston.
“We spoke about the bruises on the phone,” Darryl remembers, “but I reassured her that there was nothing to worry about.”Her mom, Sheila, an operating room nurse at Central Prison in Raleigh, noticed another symptom, in addition to the bruises. Sheila has worked in health care her entire professional life – at WakeMed, the North Carolina Department of Health and Human Services, and Central Prison – and she pointed out swelling in Danielle’s lymph nodes.
A few days later, after Danielle felt dizzy in class, a classmate took her to campus health, where the PA did a full examination. The results were unrevealing, so the PA drew labs, which revealed that Danielle’s white blood cell count was low. Danielle was referred to UNC REX Healthcare for further testing. When the results came back, Danielle was shocked to learn that she had acute lymphoblastic leukemia (ALL).
Pediatric Treatment, Young Adult Patient
James, a lifelong North Carolina resident, has been a Carolina basketball fan for as long as he can remember. When it came time for Danielle to select a college after graduating from Southeast Raleigh High School in 2006, there was no question where she would go. Years later, however, when James and Sheila received news of Danielle’s diagnosis, basketball couldn’t have been further from his mind. As parents, they wanted the best care possible for Danielle, wherever it took them. Fortunately, they had great local options.
“Do you want Duke or Carolina?” he asked Danielle.
Danielle laughs about her response. “I said, ‘Duh – Carolina.’”
At the time of her diagnosis, Danielle was 26 years old. She had graduated from college at UNC and from graduate school in public health at UNC-Greensboro, begun her physician assistant training at Campbell, and was excited about her future personal and professional experiences. By all measurements, she was an adult – all measurements except for one, that is.
ALL, a rapidly progressing cancer of the white blood cells, is the most common type of childhood cancer. Most children with ALL respond well to treatment – more than 90 percent of children are cured from the disease. Adults, on the other hand, experience a dramatic difference in outcomes, with less than 30 -- 40 percent of adult ALL cases achieving permanent remission. The disparity exits, in part, because of the rigorous nature of pediatric treatments for ALL.
According to Dr. Matthew Foster, of UNC Lineberger Comprehensive Cancer Center, young adult ALL patients have recently become a distinct population of patients with this cancer due to a national effort to administer pediatric chemotherapy regimens to them – regimens that have been honed in clinical trials by pediatric oncologists treating ALL over decades. Such treatments may hold promise for better outcomes for young adult patients like Danielle.
“Generally, pediatric patients better rebound from toxicities of the therapies involved with their treatment,” says Foster. “This also applies to young, otherwise healthy adults like Danielle, who, despite the difficulties of pediatric treatments, are able to endure them and ultimately have higher rates of durable remissions than have been typically seen in adults.”
I firmly believe that young adult ALL patients receiving adult regimens do not do as well as when they receive pediatric regimens. In fact, the early returns of this type of therapy for this patient population are so good that many centers are adopting it as their standard approach to young adult patients with ALL. -- Dr. Matthew Foster
Recent research has shown that young adult patients have better outcomes – and are often cured – when treated like pediatric patients. UNC Lineberger Comprehensive Care Center participated in a national clinical trial to adapt pediatric chemotherapy treatment for young adults. Although Danielle isn’t part of the study, because the N.C. Cancer Hospital was a leading accrual center in the study and believes in the approach, she benefits from the expertise of physicians like Foster who have experience providing young adult patients with the regimens.
“These kinds of treatments are most frequently used in larger academic medical centers that treat both adult and pediatric leukemia patients," says Foster. "When we have patients like Danielle we are able to work with our pediatric colleagues and draw from their experiences. If you see an unusual side effect in a young adult patient, you can discuss it with the pediatric oncologists down the hall.”
Foster notes that research centers like UNC are the best options for treating young adult patients with pediatric chemotherapy because of the learning curve associated with administering the treatment.
“There’s a very different structure to these regimens than to standard adult regimens,” he says. “I firmly believe that young adult ALL patients receiving adult regimens do not do as well as when they receive pediatric regimens. In fact, the early returns of this type of therapy for this patient population are so good that many centers are adopting it as their standard approach to young adult patients with ALL.”
Support during a Difficult Path
Danielle’s treatments at UNC began in August 2014 with a full month of inpatient care. They were followed by an intense period of outpatient treatment that required her to receive chemotherapy at the Infusion Center at the N.C. Cancer Hospital several days a week.
“Outpatient care was like going to work,” says Danielle, who is in remission today and will receive her final chemotherapy treatment at the hospital in December 2016. “I would arrive early in the morning, stay all day, and return home, just to come back again and do it the next day.”
The side effects were sometimes hard to bear. Danielle recalls spinal headaches caused by administration of chemotherapy into the spinal fluid. The headaches were so painful that she developed severe anxiety before receiving the infusions, which forced her to take them lying down.“Thankfully, my recreational therapist, Kelley Marrale, worked with me on breathing techniques that reduced my anxiety,” she says. “She really talked me down a lot, and I was able to use these techniques at other times during the past two years when I felt anxiety.”
At times, she was so weak from the treatments that she couldn’t climb the stairs to her bedroom at her family’s Knightdale home. During the early months after inpatient care, James often had to carry her upstairs.
From diagnosis through treatment, Danielle felt the support of loved ones. Her mom and dad were able to rotate schedules so that one of them was always with her, and Darryl came to stay with her during her first treatments, before a professional basketball commitment took him overseas. Today, he is back in Raleigh.
“When I was in the hospital, I never spent a night alone,” Danielle says.
The Power of Positivity
Perhaps most challenging, and unique to young adult patients like Danielle, is losing independence at a critical developmental time in her life.
“Young adults who are diagnosed with ALL are often spreading their wings and in the throes of personal growth and professional development when the disease hits them,” explains Foster. “It cuts short that development and creates a rift in their life in every sense of the word. Many go from being independent for the first time to relying once again on their parents. In Danielle’s case, she was studying to be a PA, and to be immersed in learning about disease and then having disease – I can’t imagine it.”
Because of the treatments, Danielle’s immune system was compromised, and she was not able to continue into the clinical year of her studies with her classmates. Learning she wouldn’t graduate with them was a blow. But she kept up with schoolwork and continued her education by auditing courses at Campbell. Campbell faculty and Danielle’s UNC care team, including UNC PA Laura Blanchard, who graduated from Campbell’s PA Program, and Dr. Foster, collaborated to make sure Danielle didn’t have to worry about her path toward completing PA school while she was going through treatment. And with her physician’s approval, she participated in certain academic events and didn't feel left behind.
Danielle is grateful to her entire care team.
“When I first started my outpatient phase, I was a Debbie Downer,” she remembers, her voice shaking and tears welling up in her eyes. “My regimen was so long – it was overwhelming to think about it. I was here all the time, and it was very frustrating. But nurses like Patti Morfeld were always positive no matter how down I was. It was extremely important to me.”
Although at times Danielle needed the boost her care team provided, Morfeld and others consider her an ideal patient.
“Danielle is incredibly intelligent and motivated,” says Morfeld. “She leaned on her family and her faith during difficult times. She has always been secure about who she is and where she wants to go in life, and no matter how she was feeling, she kept those goals in mind.”
Even when feeling poorly, Danielle and Darryl made an effort to be physically active. As a collegiate basketball player at LaSalle University and Boston University, Darryl developed his skills enough to play professionally, including in the NBA’s developmental league. He helped Danielle boost her strength and energy through tailored workouts.
“Her attitude has been incredible,” says Darryl, who graduated from Raleigh's Sanderson High School. “Danielle is the type of person who always has a smile on her face – the most jovial person you’ve ever met. She’s so optimistic, and she and her family were so confident throughout the past two years that they were the ones who were reassuring me. I really believe that her outlook has made a huge difference.”
Foster also believes that Danielle’s positive attitude has helped her be successful throughout her treatment, from the induction phase to the consolidation phase to the current maintenance phase.
“She knows what her goals are – and they are to be a provider, not a patient,” says Foster. “I have seen many times before that the patients who are goal-oriented, who know what they want to achieve after finishing treatment, can persevere through that treatment. Danielle keeps her eye on her own personal prize and is focused on moving beyond this disease, and that’s a tremendous boon.”
When asked how cancer has changed her, Danielle answers, “How hasn’t it changed me?”
She notes the large role faith played in her ability to endure her treatment – and how her faith has grown during this time. She recently followed in the footsteps of her mom – a minister at the United Church for Christ for All People in Raleigh – by giving a sermon to the congregation. It was her first time giving a sermon.
She takes after her mother in other ways, too – especially in her desire to care for others. For years, she thought she would be a doctor one day. At UNC, she majored in sociology, with a concentration in medicine and public health; she minored in Spanish for the medical professions and chemistry. But late in her undergraduate career, she was drawn to the flexibility of care that PAs can provide. In August, she began the clinical experience of her PA education.
“This is the fun part,” she says. “After all this, I’m finally able to get to the point of my education: seeing patients.”
Her experiences as a patient, she says, will make her a better healthcare professional when she completes school in 2017. For one, she’s already seen how much more complex a disease like leukemia is than what she learned in the classroom.
“I understood what it was,” she explains, “but I had no idea about the details of the regimen and how extensive the treatment is. Originally, I thought I’d do chemo for a month and then I’d be back in school. It quickly became clear that I would be out of school for a long time.”
Through her care she has learned about bedside manner and how to relate to patients – lessons she can carry with her no matter which populations she works with during her career.
“I believe that the best providers are those who have been through an experience like the one I’ve been through or have had loved ones go through it,” she says. “They don’t necessarily have to share those experiences with you, but they are able to understand and relate to you on that level. I feel that this experience will make me a better provider and will help me better relate to my patients.”
Morfeld has talked with Danielle about other patients she has cared for who are PAs or nurse practitioners or physicians.
“Danielle will be able to use her experiences for good in her practice later because she can intimately relate to what her patients are going through,” says Morfeld. “As a patient, she learned how to advocate on behalf of herself, which is not something you see with a lot of patients – particularly not with young patients. A lot of young patients are not as in tune with themselves and their bodies and will often do what mom or dad thinks they should do. That’s not Danielle. She was very much in charge of her experience here, and I think that’s going to help her be a better advocate for her patients.”
Although she’s excited to be done with maintenance therapies at UNC, she will miss the relationships she has formed at the hospital, whether with the parking attendants, the front desk staff, or the volunteers.
“They were so used to seeing my face that we got to know each other,” she says. “I learned that you have to be a special person to work as a healthcare professional at the Cancer Hospital. But it’s not only the caregivers – everyone we came across has been so great and made us feel like we’re at home.”
Her father agrees.
“Onset of disease is not a positive experience,” James says. “But our experience with staff at all levels here has been so supportive and positive. We leave here with a respect for what everyone here does. It takes a team effort, and there’s no question it’s been a good team from our experience.”
People often tell Danielle how much they admire her for her strength and courage. But she doesn’t credit herself.
“I always think back to the quote that you never know how strong you are until you have no other choice – that’s really what it was,” she says. “What other options do you have?”
In the 2016-2017 'America's Best Hospitals' issue of U.S. News & World Report, UNC Hospitals was nationally ranked or recognized as 'high performing' in 10 clinical categories. Four of its ranked specialties were ranked highest in North Carolina, including Cancer, which also ranked 16th nationally. View the full rankings for UNC Hospitals.