MEET A HERO: KIERSTEN, 19 YEARS OLD AT DIAGNOSIS

From the moment she was born, Kiersten Hickman-Perfetti seemed to be on a mission to make the most of her life. She approached everyone and everything with great energy, love, and appreciation. She loved to laugh, to sing, and to play. She was creative and intuitive. She learned to read when she was two, which set her on a life-long love affair with learning. She was also a sports fanatic, playing multiple sports a year, earning fourteen varsity letters during high school, and falling in love with The New York Yankees and the Rutgers Women's Basketball Team along the way.

In August of 2003, just after her eighteenth birthday, Kier left her home in Highland Park, NJ, to attend Goucher College. From her first day there, Kier was enamored with her college peers, the beautiful campus, her studies, and her professors. She went out for the college basketball team and made it. Kier's life was in full swing when in December she developed a sinus infection. The infection reoccurred over the duration of the school year and into the summer. 

 
Kiersten’s family: Keith (brother), Mimi (mother), Kier and Larry (father)

Kiersten’s family: Keith (brother), Mimi (mother), Kier and Larry (father)

 

In August 2004, just as she was preparing to go back to Goucher, Kier developed a serious vision problem in her right eye. Her ophthalmologist ordered an emergency MRI that eventually revealed a mass on her sinus. Kier was rushed to a hospital and underwent surgery to excise a solid mass. An analysis of the tumor led to a diagnosis of alveolar rhabdomyosarcoma.

Kier was treated at an adult cancer center for almost a year after her diagnosis.  As her family came to understand that Kier’s cancer was a pediatric cancer best treated by pediatric cancer specialists, Kier was transferred to the Children's Hospital of Philadelphia. During her two-and-a-half years at CHOP, Kier fought relentlessly to beat her cancer. She underwent 80 radiation and 75 chemotherapy sessions; she had two brain surgeries. In total Kier spent over four hundred days in the hospital or in Philadelphia’s Ronald McDonald House to have access to CHOP. 

Despite the debilitating effects of treatment, Kier was still on a mission.  In fact, she had two missions: to beat cancer and to live life as fully as she could while doing so.  And she wanted to help the younger kids at CHOP do the same.  So almost every day she was inpatient, Kier would get out of bed, visit, play with, and encourage her little buddies at CHOP who were going through the same hell as she was.  She was particularly sensitive to the loss of innocence and opportunity that children with cancer suffer. She felt she needed to help these children be kids as much as she could through play, music, laughter, and love. 

Whenever Kiersten was out of the hospital and off treatment, she pursued her first mission in life: live every moment fully and energetically.  So, during her years of treatment, Kier traveled to over forty states, went to The Daily Show where she met with the wonderful Jon Stewart four times, went to Saturday Night Live, went to The Ellen Show in the Park, threw out the first ball at a Somerset Patriots play-off game, and met Derek Jeter and Joe Torre before watching her Yankees play in NYC.  She became a creative scrapbooker, and she became quite the visual artist, painting several beautiful and complex originals.  She also closely followed her beloved Rutgers Women’s Basketball Team, serving as an honorary coach in one game and becoming friends with many of the players and the coaches.  She went to the Final Four Women’s Championship game in Philadelphia to cheer on Rutgers.  Three months before she died, she even went to Camp Make-A-Dream, where she spent a week skiing and snowshoeing with other adolescents and young adults who had cancer.  And she never missed a chance to be with or to speak on the phone with her many loving friends.

In August 2007, Kier's doctors told her that nothing more could be done to stop the advance of the disease.  She had a choice: continue treatment with no chance of a cure or live her life to the fullest outside of treatment.  She accepted the news with disappointment and chose the mature to discontinue treatment.  “Kier wanted her life back for as long as she could get it," explains her Mom, Mimi Hickman-Perfetti.  Kier died on 23 April 2008 at home with her parents holding her.

Kier’s personal war with cancer was over.  Just three days before she died, Kier’s Kidz, which would become its own 501(c)(3) nonprofit, was born out of Kier’s wish to leave a legacy of love and hope for children and young adults fighting cancer.  Kier wanted her parents and friends to help kids and young adults with cancer financially and emotionally.  She also wanted Kier’s Kidz to support pediatric cancer research.  She knew that the only way many kids have a chance to beat their cancers is through improved chemotherapy and other treatment agents. 

"Before Kier developed cancer, we knew little to nothing about childhood cancer. After going through Kier's battle with her and seeing so many other children fighting cancer at CHOP, we became acutely aware of the hell kids go through even when they beat their cancers. We also learned that pediatric cancer treatments were based primarily on adult cancer models with few if any chemo agents developed specifically for children. And that’s the way it still is!said Larry Perfetti, Kiersten's Dad. “When we learned about the work and goals of Oncoheroes, we knew immediately that we wanted to support that venture to give kids a better chance at life with better treatments.  Kier would have been ecstatic about our supporting Oncoheroes.  Our son, Keith, is.  He misses his sister dearly, and he wants cancer defeated once and for all for all children and young adults.  So, in Kier’s memory and honor, and with great hope and anticipation, we decided to personally invest in Oncoheroes and to become part of the Oncoheroes Family.  We are positive that the Oncoheroes team has the passion, the compassion, and the expertise needed to meet the challenges that lie ahead and to usher pediatric cancer treatment into the 21st Century."

Here we go, Kier!