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They aren’t yet adults, but they’re no longer kids. They yearn to blend in, but their mirrors reflect hair loss or other side effects of cancer treatment. St. Jude helps teenaged patients cope with their unique set of challenges.
Reflect on the younger years—those awkward teenage years. Braces, poofy hairdos, acne, trying to fit in somewhere with someone—those are almost requirements for growing up in that self-conscious stage. For many adolescents and young adults, the middle ground between childhood and adulthood is rocky and confusing. For teens diagnosed with cancer or catastrophic diseases, the load can be exacerbated by hair loss, weight gain, isolation, questions about mortality and depression.
“When teens with cancer are admitted to a hospital, they lose the sense of freedom they were just learning how to gain,” said Kelly Anderson, a Child Life specialist at St. Jude Children’s Research Hospital. “Their friends and family are worried and are checking on them more than usual. The autonomy is gone. They also look at themselves then and now, comparing how it used to be.”
As its name suggests, St. Jude is a children’s hospital, but its staff also diligently and passionately works to ensure that the adolescent and young adult patients treated fit in as much as possible.
“Teens here grow up quickly because of their experience as cancer patients. They see a bigger picture than what they would if they were not here,” Anderson says.
The teenage world is difficult even outside the St. Jude walls. An environment of support and contact may be replaced with one of isolation.
“Teens will be teens,” Anderson says. “As teens, they are typically focused on helping their friend who has cancer at first. Then, they go back to their lives. They do not realize that the teen patient needs the continued support. We talk to patients about this and encourage them to share with us how they are feeling. We introduce them to other teens at St. Jude. Some of them even take on parenting-like roles with our younger patients.”
At St. Jude, teens have their own place to hang out and spend time with friends their own age while undergoing treatment. The Teen Rooms feature games, art supplies, movies, a pinball machine and a jukebox. Patients must be at least 13 years old to enter. No parents, no doctors or nurses are allowed.
“It’s that age when everything is important to them—their looks, their friends, their social activities, their participation in sports. Many of our teens are uprooted from their entire lives and their whole support systems,” Anderson says. “The Teen Rooms—one on our main floor, one for bone marrow transplant patients and one in patient housing—provide areas for them to get away from the little kids and parents. At some point, they all need that.”
Special hospital activities allow teens to experience typical rites of passage such as high school graduation and the St. Jude Teen Formal. Organized by the hospital’s Child Life department, the St. Jude Teen Formal receives enthusiastic input from patients and their siblings. From the pamper party to the stretch limos and red carpet, the goal is normalization and entertainment.
“One of the things we got to thinking about was that a lot of the teenagers miss their formal and the other dances that they do at their schools. We wanted to provide an opportunity for them to have something that would bring some of their normal life at the hospital,” Anderson says. “Weeks before, they’re saying ‘I can’t wait for prom to get here. I can’t wait to try on my new dress. I can’t wait to just get to hang out.’ I think that they really enjoy having something that’s solely provided for them.”
Success with teens is parallel to having staff who are focused on them.
“They need a space to call their own,” Anderson says. “They need to feel like someone is on their side. They need a place to escape and a support system. It is also important that we speak to them as teens.”
The phenomenon is not only psychosocial; it is also medical. In 2006, the National Cancer Institute (NCI) reported a lack of progress in survival rate improvement among older adolescents and young adults relative to all other ages. The incidence of cancer in this age group has increased steadily in the last 25 years.
“Pediatric oncologists have become much more aware of this population since the NCI report, but a major gap still exists,” says St. Jude oncologist Sheri Spunt, MD.
“Adult practitioners have little access to pediatric trials, and vice versa, so fewer adolescents and young adults participate in clinical trials,” Spunt continues. “And we know that patients who participate in clinical trials fare better than those who do not.”
As Spunt points out, “If a 19-year-old is treated for cancer at a pediatric center and then relapses at age 22, often that patient cannot be treated on a pediatric trial, and it is sometimes difficult to transition care to an adult center with clinical trial availability.”
According to the NCI, this age group has a unique distribution in the types of cancers that occur. “The most common diseases are lymphomas, melanoma, and testicular and ovarian tumors,” Spunt says. “But they can also have cancers that are typically seen in the younger population such as acute leukemia and sarcoma.”
Although doctors nationwide have reported higher success rates in certain cancers for teens on pediatric trials versus adult trials, teenage survival rates still need improvement.
Jennifer Windham, a social worker at St. Jude, says teens understand the implications of treatment. “Teens really know what they are losing as they go through treatment. We focus on maintaining normalcy and balance. This time of life is crucial, so we work on short-term goals; talk about graduation, prom, senior pictures.”
Social Work teams with Child Life and other clinical staff to assess the patients and focus on where children are and where they want to be.
“We are also here as a sounding board,” Windham says. “Teens can be cruel, rumors can start, and we want them to feel like we are there for them to talk to about it all.”
Cruelty stems from misunderstanding and misinformation. Treatment can lead to body and weight issues; some chemotherapy can bring with it massive outbreaks of acne and hair loss.
“St. Jude is unique because I feel like we can do more for them than other hospitals can because of our resources,” Windham says. “With almost 20 social workers, we can be more tuned into their needs. Some of them want to talk a lot; some express themselves with art; some connect with another staff member; some act out and some internalize everything. It is our job to help them feel safe enough to share in the ways they feel comfortable.”
With the advent of social media, blogging and other online resources, this age group has a plethora of outlets and ways to connect with other teens across the world who might be going through the same thing. “They need to connect with children their own age and feel like they are understood,” Windham observes.
“This is a challenging age group,” Spunt adds. “But, I feel like St. Jude has a good focus on teens in their social environment.”
Seventeen-year-old Kayla McMillen appreciates the emphasis St. Jude places on teens.
“I have grown a lot since I came to St. Jude,” says McMillen, who is receiving treatment for Ewing sarcoma. “I have been put in a situation where I had to grow up. I have learned a lot: to accept new things that come up, to adjust to new environments, to adjust to new kinds of people. I accept cancer now—I don’t accept it with an open heart, but I do accept that it is real.”
Reprinted from Promise Summer 2010