About Michelle

Michelle was a beautiful blonde haired blued eye child in a family of brown eyed brunettes who was diagnosed with NF at a very early age.  She was small for her age but had a smile that could light up a room.  Making friends came easily and she knew everyone, adults and children alike.  Just like most teenage girls she was silly, messy and girly.

 

Michelle’s dream was to be an elementary school teacher.  She had that special spark.  She loved people, especially babies and young children.  She volunteered her time at the pre-school handicapped program and was in the process of making gift bags for children who were also being treated at Children’s Hospital in Philadelphia.  She never viewed herself as sick and dying…she viewed herself as a person who was living and giving back to all who cared for her and others.

 

We lost her on June 5, 2010 from a Malignant Peripheral Nerve Sheath Tumor (MPNST) diagnosed in September 2009.  She was only 17.

  No real symptoms, other than the café au lait spots, had appeared until about age 12.  Back and leg pain caused by the plexiform tumors throughout her spine and entire body had increased significantly and at times was unbearable.  She was followed by the Children’s Hospital of Philadelphia and participated in 3 different clinical trials, including a photodynamic study and one with Rapamycin.

Despite her constant pain, Michelle remained active in school activities and participated in the Warren Hills Regional High School Marching Band.  She loved riding on the bus to away games and fooling around with her friends.  She was welcomed at the band award ceremony to a standing ovation in January although she had only been to 1 game all season.   A girl scout since 1st grade, Michelle was a senior girl scout working on her Gold Award. She especially enjoyed working with the younger girls.   She even held a part time job at Shop-Rite and still managed to make the High School Honor Roll.  The entire time she took handfuls of pain medication just to get through the day.  Still, there was a joy in her that could not be contained.  She was so brave and never complained during all of this.
 

When the doctors realized that Michelle had a tumor that had become malignant, surgery was performed over two days, September 29-30, to remove the MPNST and perform a spinal fusion to replace the bone that had deteriorated from the cancer.  After a brief recovery chemotherapy started, 5 days per month, each month until March.  In support of her hair loss, her best friend Emily shaved her head and together they went to the wig shop and bought matching hot pink and blue wigs.  Michelle also bought a wig that best matched her hair but more often than not, she wore a simple cap or nothing at all, she really didn’t care who saw her bald head as she always looked to enjoy life and the moment. 
 
                                                                                               
Nothing could keep her down.  On her 17th birthday in early January, she took her driving test and got her license on the very first attempt. The smile on her license is so big, she was so happy.  She drove around to share the good news.

She made it clear to her oncologist that she needed to be out of the hospital on March 27th to attend her Junior Prom.  Bald, weak, and sick until about 3 days before, she went to the prom in a beautiful bright pink gown, her favorite color, with the nicest boy in the world who just happened to be a senior, football player.  Michelle was crowned Prom Queen, an honor she was so proud and so very happy to have received. 
                                 


Two days later, Michelle was back in the hospital with unbearable pain. The tumor had grown back with a vengeance.  Surgery this time was unsuccessful and left her paralyzed from the waist down.  The prognosis was not good, and she knew her life would be very short.  So, in a wheelchair she came home.  She continued to see friends and together they worked on scrapbooks and made “big beads.”  There was the LOST finale party, going to the movies, shopping and Applebees, and she never really complained.  She was in pain everyday.

Nauseous and weak she traveled to Hoboken for her Make a Wish and made a cake, based on the TV show LOST, with Buddy Valastro, “The Cake Boss”.  The cake was shared with 150 family and friends the next day. “See you in Hoboken!”

Michelle's wish with Buddy


Her spirit was strong but her little body was tired and weak.  This disease did not define her.  The entire school and community rallied around her and our family.  She has inspiried us all and while Michelle's life has ended, her legacy has just begun.