Jillian was born on March 13, 1991 weighing in at 6 lbs. 10oz. and measuring 19 inches long.  She was the second child to my husband and I and brought so much love, and joy to our home.  At the age of 12 Jillian was deep sea fishing with her grandfather.  She called home to say that everything she looked at was double.  Not wanting to come home because the boat was catching fish, Jillian stayed on the boat and came home the next day.  That day she had a doctor’s appointment and ended up getting a cat- scan.  The results came a day later and everything was fine.  As the days passed Jillian had some strange things happen to her.  She was still experiencing her double vision, she ran into a wall at basketball practice and needed stitches, she rolled out of bed and she started talking with an awkwardness.   I called the doctor and told him the symptoms, so he reevaluated her.  He assured me that she was fine but something inside me told me otherwise.  I wanted an MRI to put my mind at ease.  A few days later we got the news:  an inoperable brain stem glioma.  Our lives have never been the same since.

Jillian lived three hours from CHOP and she wanted to try and live a normal life.  She wanted to continue on with life like nothing was wrong.  The first step was radiation therapy.  We made that three hour trip to CHOP over 60 times in the next few months for radiation, doctor appointments and more scans.  We had an air mattress in the back of the Suburban and we would load her up around 4:30, arrive at CHOP at 7:30, put her back in the car and get home around 11:00 and she would go to school to finish the day.  Some days she was throwing up in the back seat and some days she was too weak to get in and out of the car. But she made that trip faithfully without a complaint!

Jillian was put on an experimental drug, but within six months she started to decline.  She never gave up!  She would put a patch on her one eye and put on her softball gear and be the catcher for her team.  She continued with her school work so she wouldn’t fall behind.  But soon, Jillian’s body couldn’t fight anymore.  

On December 7, 2004, at the age of 13, Jillian passed away leaving behind seven sisters:  Jessica, Joanna, Janelle, Julie, Josie, Janessa and Jamie.   Seven months after her death we were blessed with a boy, Joel Swartz, Jr. (I believe that she whispered to God and asked him to give us a son).  Janae, Joselyn, Joelie and Jaxon have also joined our family since Joel arrived.  Each one of my children knows Jillian and her journey.  My older girls still remember her being Peter Pan and walking around the house, saying, “we’re following the leader, the leader, the leader, where ever we may go,” with everyone following her and then she would stop and all of the little ones would fall down.

I have learned so much from my daughter.  I learned what love is all about.  Without complaint, Jillian fought the hard battle.  

She is our LEADER!  She is our HERO!  We love her and miss her daily!

My hope is that one day a cure can be found so that other families can be spared the heartache that our family has endured and continues to endure without her presence in our lives.

Keeping the faith!
Jill Swartz, Jillian’s mother
“Fly by Faith not by Sight”
November 2013