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Chronically ill students bond at DePaul UniversityBy COLLEEN MASTONY
Chicago Tribune
12:00 AM CDT, June 12, 2010
CHICAGO
Over the last four years, Maggie Sheehan and Kendra Kney have helped each other navigate a well-worn path between dorm room and emergency room.
They've supported one another through sociology tests, and through blood tests and pulmonary function tests. When one was in the hospital, the other copied class notes. When they were both in the hospital, they sneaked to each other's room where, to guard against infection, they talked through the door.
Sheehan was diagnosed shortly after birth with cystic fibrosis. Kney lives with a congenital brain defect called a chiari malformation. They met freshman year at DePaul University and immediately bonded over the shared experience of living with a chronic illness.
When the 22-year-olds graduate Sunday, both say they'll owe the achievement, in part, to one another. Between homework and hospitalizations, Kney said, "we were both trying to figure out how we could do it all." Added Sheehan: "We knew that we were going through it together."
As medical advances have led to better outcomes for children with serious medical conditions, students like Kney and Sheehan have become increasingly common on college campuses. In Chicago, the trend has created a unique relationship between DePaul and Children's Memorial Hospital. Namely, when it comes time for college, it's not uncommon for patients treated at Children's to decide to enroll at DePaul.
The proximity of the two institutions located just a block apart in Lincoln Park not only provides the convenience of having a doctor next door but also soothes worries of students and parents concerned about managing an illness amid the distractions and pressures of college.
No one knows exactly how many Children's patients end up at DePaul; neither the university nor the hospital tracks the numbers. But Deborah Snow Humiston, a DePaul spokeswoman, put the current number of student-patients between "one and two dozen, at least." Children's hospitals in Boston, Baltimore and Pittsburgh report similar relationships with nearby universities.
For Dan Tourounjian, 22, a DePaul senior who has hemophilia, being close to Children's meant peace of mind. "When my doctors found out I was coming to DePaul, they said, 'Whenever you need something, just come right over."'
He did just that a few weeks ago when an injured ankle wouldn't stop bleeding. After calling the hospital, he limped over to Children's and was swept upstairs for treatment.
"I feel a little safer knowing that, if something does happen, the hospital is right there," he said.
Phil Costello, 20, started thinking about DePaul more than a decade ago when he was being treated at Children's for childhood leukemia. Diagnosed at age 2 and treated for relapses at ages 4 and 17, he remembers repeatedly passing the university on the way to the hospital and idly thinking: "Maybe I'll go there one day."
Now a freshman, he undergoes bone scans at Children's every four months and can run to medical appointments between classes. "Last quarter, I was able to go from class in the morning to Children's and be back for my night class with time to spare," he said.
Doctors, nurses and social workers say that such students have undoubtedly become more common as technology has advanced, and both life expectancies and survival rates have increased. In the 1950s, children with cystic fibrosis, for example, lived an average of five years; they weren't expected to attend elementary school. Today, better therapies and medications mean that people with the disease can expect to live into their 30s and 40s, putting college well within reach.
Still, the leap to higher education comes with a distinct set of hurdles for those with a chronic illness. Some students require regular hospitalizations, specialized daily regimens or equipment such as a gastronomy tubes or nebulizers. Most will be managing their own medical care, away from the watchful eyes of their parents, for the first time.
"Even the fact that most of our patients know the neighborhood and that they've been out for a meal adds a level of comfort and familiarity," said Dr. Susanna McColley, head of pulmonary medicine and the cystic fibrosis center at Children's.
Hospital officials hope to maintain close ties with DePaul even after the planned move from Lincoln Park to a new facility in Streeterville in 2012. Though no longer next door, the hospital, they point out, will be relatively nearby, about 3.5 miles to the south and just three stops away on the CTA Red Line. And although the move will be away from DePaul, it will put the hospital closer to other downtown colleges and universities, such as Columbia College Chicago and Roosevelt University.
In a nod to the rising number of such students, DePaul in 2003 created the Chronic Illness Initiative, an academic program run through the adult education school. Believed to be the first of its kind in the nation and operated in tandem with DePaul's Office of Students with Disabilities, the program allows people with chronic illnesses to take classes online and to take time off when symptoms flare.
"Chronic illnesses tend to wax and wane," said Lynn Royster, director of the initiative. "People will be put in the hospital off and on, or they will have medication changes, which can have profound effects."
All of which can wreak havoc on a college career. To help manage such challenges, academic advisers help with scheduling and run interference with professors, explaining the circumstances and arranging for makeup exams.
Begun with 40 students, the program has grown to include 130 young people, including those dealing with cancer, organ transplants or dialysis, among other issues. Not all students managing chronic illnesses take part in this program; some, like Sheehan and Kney, enroll as regular undergraduate students so they can take classes across the university. (Students taking part in the Chronic Illness Initiative are limited to classes offered through the adult education program.)
Yet in recent years, students with chronic illnesses have become common enough on campus to sometimes bump into one another and eventually become close friends. Royster said such relationships can be powerful sources of mutual support.
"To have someone who is in your corner, who knows what you're going through and who can help you when you're feeling down," she said. "I don't think I can overestimate how important that is."
Kney and Sheehan met as freshmen after Kney spotted a feature story on the Children's Memorial website about Sheehan's battle with cystic fibrosis. After exchanging messages on Facebook, they agreed to meet and, over coffee one afternoon, hit it off.
They talked about hospitals and medication. They talked about their parents and being on their own. Soon they were going to parties together, meeting for dinner and, more often that they'd like, visiting one another in the hospital.
When Kney had to undergo a pulmonary function test, Sheehan who had been through the test many times helped explain the results. When Sheehan's chest port wasn't working, Kney brought her to the emergency room.
With one another, they didn't have to explain so much. Both knew what it was like to receive discouraging news from the doctor. They could hash over questions like: When do you tell a boyfriend that you have a chronic illness? If they were too tired to go to a party, they would stay home together, watching "Top Chef" marathons on Bravo and ordering takeout from The Pasta Bowl on Clark Street.
Every semester they took at least one class together, so they could copy notes or gather assignments for each other.
Sheehan missed at least one week every quarter because of regular hospital stays, during which she would receive intensive intravenous treatments five times a day. And Kney had to take two weeks off from school this quarter after she began suffering debilitating headaches, a symptom of her brain defect. With each other's help, both were able to keep up with their schoolwork.
After graduation, they face a new set of challenges: establishing careers, setting up apartments and finding their way in the world. Kney is headed to graduate school for social work at the University of Illinois at Chicago; Sheehan is living with a boyfriend downtown and looking for a job with a nonprofit organization.
Whatever the future might bring, they say they'll continue to depend on one another. "I know I can call her," Sheehan said. "We'll always have an understanding for one another," Kney said.
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Information from: Chicago Tribune,
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