Little Eddie J.

Story & Photos Provided by: Michael & Katie J.
Cover Photo Provided by Michael & Katie J.  Courtesy of Denise Feagans Photography

GolfOur eye cancer heroes have hurdled various obstacles throughout their lives.  Each day can present a new challenge but hearing how hard each one of our heroes fight is an inspiration for us all.  Edward is one of those heroes.  Here is his story:

“Edward was born on January 19th, 2011, only 25 weeks old and weighing only 1 pound 12 ounces. While in the NICU, he spent over three weeks on the ventilator, had a few infection scares, had a couple surgeries and was diagnosed with retinopathy of prematurity (ROP).  But after nearly 100 days we were finally able to take Edward home!  His first year of life was bumpy at times as we worked to overcome the hurdles associated prematurity, but overall, he was truly a miracle baby.

Then on March 1st, 2012 during a routine checkup for his ROP with our pediatric ophthalmologist, he was diagnosed with bilateral retinoblastoma at age 14 months.  As it is for most parents, this diagnosis was a total shock – we could not believe poor Edward’s luck after overcoming so many obstacles while in the NICU.  After spending a few days simply absorbing this information, we began to formulate a plan.  As a physician, I called everyone I knew in ophthalmology to find the best care for Edward.  Dr. Shields and Wills Eye was recommended over and over again.  Furthermore, Edward’s mom, Katie, grew up in Philadelphia and her parents and extended family still live throughout the city. Choosing Wills Eye was one of the best decisions we have made.

Edward underwent 6 cycles of chemotherapy (two rounds at CHOP and 4 rounds at the University of Virginia, where we live) as well as serial exams under anesthesia (EUAs) over the past year.  We have been so fortunate that his tumors have responded nicely to therapy and we are very hopeful that we will be able to save both his eyes and avoid enucleation.  We still return to Philadelphia several times a year for repeat EUAs and we work daily on patching his eye and wearing his glasses as often we can convince a precocious two year old.

We have had an unending amount of support from our family and friends along the way.  We have made t-shirts for family and friends to show Edward support and spread the word on retinoblastoma.  Edward’s Aunt Nicole is a current junior at Boston College University and plays for their Women’s Field Hockey Team.  Nicole and her teammates have been incredibly supportive over the past year – wearing Edward’s t-shirt for warm-ups and BCeven throwing a fundraising party in his honor.  We were also extremely fortunate to get the support of the Junior Golf Clubs Cancer organization – a local Philadelphia effort to support pediatric cancer research and pediatric cancer patients. They sponsor an annual golf tournament at Whitemarsh Valley Country Club and Edward was the special 2012 honoree.  This year’s tournament was a great success and we are very grateful to Emily Gimpel, the organizer of the tournament, her family and Whitemarsh Valley Country Club for their overwhelming support.

Edward is now a growing two-year old who loves ice cream sandwiches, the beach and getting into trouble.  We love him to pieces.”

Edward’s parents have also been keeping a blog about their day to day journey.  You can find it here.