Libertyville pre-teen finds silver lining in survivorship
Wednesday, May 28, 2008
Childhood cancer survivor Stephanie Marder, right, hugs her twin sister, Nicole. Stephanie was diagnosed with lymphoma in 2006.
"We are truly the lucky ones," says Rick Marder, a Libertyville father of three who says his entire family is especially fortunate to celebrate 12-year-old daughter Stephanie's triumph over childhood cancer.
Until June 2006 when she first learned she had cancer, the pre-teen's life was full of soccer and softball games, movies, friends and spending time with sisters Jessica, 16 and Nicole, her identical twin.
"Learning of her cancer diagnosis was a shock for the entire family," admits Marder. "It was the weekend right after Memorial Day when Stephanie first complained of persistent stomach cramps."
When the cramping failed to diminish, a late night trip to the local hospital emergency room and subsequent CT scans revealed shocking results.
"It wasn't appendicitis as first suspected, but rather a large abdominal mass," her dad recalls. "The news literally blew us away and Stephanie was transferred immediately to Children's Memorial Hospital, Chicago, for further evaluation. There, specialists reviewed the CT scan and exploratory surgery was scheduled for Friday."
A roller coaster of emotions
Following surgery, the close-knit family celebrated after learning doctors suspected only pancreatitis, an inflammation of Stephanie's pancreas. That celebration was short-lived as final biopsy results revealed a new diagnosis of large scale lymphoma. Stephanie had cancer.
"The rollercoaster of emotions went from despair to joy, shock and again despair as we tried to make sense of Stephanie's condition," recalls Marder, who says the news was devastating. "We were terrified and confused. Stephanie had always been healthy. How could this have happened?"
Stephanie's road to survivorship included 14 grueling months of chemotherapy, which ended last August. Treatment often left her fatigued and with joint and jaw pain. She was enrolled in a special clinical study to evaluate newer chemotherapy treatment protocols and continues to be followed during post-treatment tests and check ups by the study.
The loss of her long hair as a result of chemotherapy was devastating. She and her sisters had previously donated their long tresses to Locks of Love, an organization providing wigs for children with hair loss due to cancer and other health problems.
"Spending time in a children's oncology unit can push any parent's limits," Marder says. "It made us wonder what was going on….why so many families aren't as fortunate?"
According to the American Cancer Society, lymphoma is a blood cancer, frequently starting in the lymph nodes and spreading to bone marrow and other organs. It may cause fever, weakness and swelling of lymph nodes in the neck, armpit or groin.
One type of lymphoma, Hodgkin's lymphoma, can occur in both children and adults, and accounts for about four percent of all childhood cancers. It is, however, more common in early adulthood (ages 15-40) and after age 55. About 10 percent of all cases are diagnosed in children 16 and younger.
In the U.S., childhood Non-Hodgkin's lymphomas like Stephanie's make up less than one percent of the 66,120 cases of Non-Hodgkin's lymphomas diagnosed each year. According to the experts, the specific cause of most forms of non-Hodgkin's lymphoma is unclear. It's possible, they say, that genetics and exposure to viral infections may increase the risk for developing this malignancy.
Finding support & encouragement
Support from family and friends, including peers at Highland Middle School, Libertyville, during the sixth grade helped rally the pre-teen, as did her softball and soccer friends. While not able to run as fast, Stephanie's determination left her teammates and their families inspired.
Through Bear Necessities, a pediatric cancer foundation, Stephanie got to meet Ace Young, one of her favorite singers and go backstage at the 2006 American Idol Tour concert. She attended three One Step At A Time camps for children with cancer and says she hopes to one day become a camp counselor.
Stephanie missed school only as needed and found great support from her teachers and principal, Sharon Aspinall, also a cancer survivor. One special teacher, Pam Fiedler, also was receiving chemotherapy at the same time and the two formed a special bond.
"We met with school personnel prior to the start of year to explain the health issues and despite her challenges, Stephanie ended her year with straight A's," her proud dad reports.
In celebration of survivorship, the family recently returned from a one-week Make-A Wish dream trip to Orlando's Walt Disney World where they were treated to a special VIP safari and behind-the-scenes tour at the Animal Kingdom.
With a long history of supporting cancer research, the Marders' plan to continue an annual tradition of participating in the Susan B. Komen Walk for the Cure event to raise money for breast cancer. Stephanie's maternal grandmother died of breast cancer and her paternal grandmother is a breast cancer survivor.
Stephanie also will serve as honorary survivorship chair of the Relay For Life of Green Oaks-Libertyville-Mundelein and Vernon Hills. Her parents, Rick and Beth, older sister, Jessica, and twin, Nicole, serve as honorary caregiver chairpersons for the event, which steps off at 6 p.m. Saturday, June 7, at Mundelein High School.
Teens & cancer
It's one thing for families to cope when a parent is ill and something totally different when it's a child, pre-teen or teen who is diagnosed with cancer, says Emily Gotha, oncology child life specialist at Advocate Lutheran General Hospital, Park Ridge.
"Most families are in complete shock and doctors don't always have all the answers," Gotha explains.
"Shock, denial, grieving — they're all understandable reactions and stages for parents. Sometimes it's actually the children who cope better."
Emily Gotha, child life specialist, Advocate Lutheran General Hospital, poses with Jeremy Campus of Chicago.
Gotha says teens do face a unique set of challenges when diagnosis often means a loss of control and time away from friends and family.
"Favorite activities like basketball games or trips to the movies with friends must be curtailed when patients become neutropenic and white counts drop to levels limiting the body from fighting infection," she explains.
"The loss of privacy and autonomy can be distressing as can hair loss."
To help teens and pre-teens adapt, Gotha recommends helping adolescents stay connected electronically with friends through instant messaging, e-mail and computer technology.
Staying involved is critical and teens often find their identity in terms of sports, school or peers, she says.
"Sometimes simply hanging out with friends in the oncology teen lounge, attending special outings, talking with trained counselors and finding ways to stay involved can make a big difference in recovery," she explains.
"Because teens are already accustomed to using the Internet for finding information, we also encourage them to learn all they can about their cancer by tapping into specific sites and resources for information and support and encourage them to become an important part of their own health care team."