Sophomore shares sister's
'legacy of faith' at teleconference

Nikki Beden (right) with her sister Alexandra

Alexandra Beden did not live to see her 16th birthday because of a rare kind of cancer that took her life, but she left a legacy of faith, courage, acceptance and appreciation of all life has to offer with her friends and family, including her sister, Nikki, a sophomore at the University.

Nikki, who is enrolled in a death education class taught by Madeline Lambrecht, nursing sciences, recently took part as a panel member on a Hospice Foundation of America teleconference on caregivers, presented locally at the Trabant University Center.

During the teleconference, she spoke about the help her family, including her mother Mary, her father, Lance, plus Nikki and younger sister, 12-year-old Jennifer, received during Alexandra's illness. "After long days at the hospital, we really appreciated what everyone was doing for us," she said.

Now, when talking about her sister's death, Nikki said, "I don't know why death is such a taboo subject in this country. It is something we all have to face. My sister was not afraid. She was strong for us and confident in her faith and told me she would always be a part of my life, which was a comfort to me.

"My mother had cared for her mother when she had a brain tumor. From that experience 18 years ago, my mother learned the importance of communication, and from the beginning of my sister's illness, we were all very open with each other and outside the family," Nikki said.

"Alexandra died two days after Christmas. I think she wanted to live that long. She had a seizure during Christmas night when I was with her, and she never regained full consciousness. The next day, my aunts, uncles, cousins and friends all came to say goodbye to her and to tell her that we loved her."

One of the happiest times the family had together, Nikki said, was a trip to Italy arranged by the Make A Wish Foundation, based on Alexandra's wish to see the pope.

Many small miracles happened on that trip, Nikki said.

Alexandra was scheduled to have a broviac, a shunt for medications, removed before she went, but for some unknown reason it just fell out and the opening healed, sparing her surgery.

"There was a problem in getting to see the pope. No tickets were available," Nikki said. "However, the Make A Wish organizer said she would try once more and somehow, thanks to someone who knew someone who knew a priest with a friend in the Vatican, we were given tickets to a papal audience and were only a few feet from the pope.

"Alexandra also found the energy to go on all the tours in Rome, Florence and Venice and to go out with me in the evenings and even dance. She was my bargaining agent when I bought an Italian purse," Nikki recalled.

During the trip, Alexandra had a white gold bracelet made, which she wore continually and which Nikki now wears in remembrance of her sister.

"It was an unforgettable trip for the whole family," Nikki said.

"It wasn't all easy going during Alexandra's illness. There were times of tension and problems, but we were fortunate my father worked at home at his software business and was able to share Alexandra's care," Nikki said.

Alexandra kept a journal during the last part of her life, and her parents published parts of it after her death.

In the first entry, she thanked God that she was able to use her arms and legs and see and hear and for her "great parents," adding "Right now my Mom is making me a waffle."

The journal told about her efforts to go to school, and her thoughts on her illness and death, writing she knew her "sickness has done some good. I was able to touch a lot of people."

One of the reasons Nikki chose UD was to be close to home in New Jersey and the Philadelphia hospital where Alexandra frequently stayed. She could keep her car in Newark to go home weekends and Wednesdays.

Delaware was a good choice for other reasons as well. Because of Alexandra, Nikki is interested in alternative medicine, such as hypnosis for pain, and reiki, a healing touch therapy. Being a Dean's Scholar at Delaware has given Nikki the opportunity for independent study, and she has been able to integrate her interest in alternative medicine into her undergraduate studies. Her adviser Dene Klinzing, individual and family studies, has been "wonderful and supportive," she said.

"In the future, my mother and I also have talked about the possiblity of a wellness center to help other children and teenagers like Alexandra, who are suffering from illnesses," Nikki said.

–Sue Moncure