A New Normal for One Alpharetta Mother 1

Ian’s Friends Foundation Lends a Hand and a Heart

“You are in for the fight of your life,” were the words that changed Holly York and her life trajectory forever.  They were the words uttered by the neurologist confirming that her daughter, Julia, had a lesion on her brain. They were the words that confirmed that the severe headaches Julia had been experiencing were not the result of prepubescent hormones, as Holly believed, but instead a pediatric brain tumor. They were the words that would mobilize a mother of three to believe that she could, and would, move mountains to save her daughter now in for the fight of her life.

Holly York was living in John’s Creek and had just started a new job at a nonprofit organization in February 2012. Like many working mothers, Holly spent her time hustling her children to school, sports and various activities while balancing work and life at home.  Life seemed normal despite the busyness that characterized their daily lives. It was for this reason that Holly thought little of her daughter’s reoccurring headaches, but when they became debilitating two days after Julia’s 12th birthday, Holly knew something wasn’t right.

Initially, Julia’s MRI was supposed to rule out anything unusual.  In fact the procedure was just the start of Holly’s worst nightmare as she recalls the radiologist handing Julia a teddy bear and ordering Holly and her husband to go immediately to the neurologist.  Holly vividly recalls the shock and debilitating fear when the doctor informed them that Julia had a lesion on her brain stem.  Compounding the news was the concern other neurosurgeons they spoke with had about attempting to biopsy the tumor, let alone remove it, due to its location.  In an instant, Julia went from being an active middle schooler, to a child with a pediatric brain tumor and an uncertain future.

Within days of her diagnosis, Julia began radiation treatments at Emory’s Winship Cancer Institute. Holly felt like she was on a rollercoaster as she navigated the frightening world of pediatric brain tumor diagnosis, prognosis and care options. “It was chaos. You don’t know exactly what to ask, but you’re desperately searching for any kind of treatment that can save your child,” says Holly.  “All I could think at the time was Julia is not going to get to be a teenager, have her first kiss, go to high school, get married or have children. It was horrific,” Holly recalls.

Ultimately, the Yorks connected with Ian’s Friends Foundation (IFF), a nonprofit organization based in Atlanta whose mission is to support research focused on pediatric brain tumors. Ian’s Friends Foundation was founded in 2006 by Phil and Cheryl Yagoda when their son, Ian, was diagnosed with an inoperable brain tumor. IFF’s work focuses on identifying projects that are dedicated to overcoming pediatric brain cancer. To do this, IFF partners with, or supports, research labs at leading hospitals around the country focused on the development of new treatments for pediatric brain tumors.  IFF also offered Holly and her husband something that was in short supply – hope.

Throughout Julia’s radiation treatment, doctors at Children’s Healthcare of Atlanta (working with funding from Ian’s Friends Foundation) searched for other clinical and surgical options to prolong Julia’s life. Ultimately, Julia was enrolled in a clinical trial; she lost her hair and temporarily her vision. When she could no longer continue the in trial, Julia began a series of MRI’s to monitor the tumor. Good news came in March 2013, when an MRI revealed that the tumor appeared to be shrinking.  Subsequent scans have shown that the tumor is dormant and that the disease is under control.  Today, nearly four years later, Julia is an active high school student learning to drive with dreams and hope for the future.  Her brain tumor remains, but is considered stable.  She has few lasting side effects from radiation and is living a normal life.

Holly was so inspired by the work of IFF and their role in supporting critical pediatric brain tumors, she joined their board of directors and has been a pivotal part of the organization’s growth and success.  Holly also works full time for the American Cancer Society as a community manager.  For Holly, cancer, survivorship and giving back to those who helped her daughter – it’s all part of her new normal.  To learn how you can support Ian’s Friends Foundation and more about the organization, visit their website at IansFriendsFoundation.org or 
call 404.966.0752.