Pack Heroes: Ross Deutsch

Husband, father, basketball coach, Greyson family. Hero.

"I have read that the problems we cannot avoid must be faced with courage, the problems we cannot overcome we must bear with a strong and enduring spirit. Losing a child is the most horrific, unimaginable tragedy a parent can experience. The loss is unimaginable. The idea that life still has to go on is unfair, to say the least, but somehow it does.

Our story begins on a Sunday in early February 1998. We were a family of five: my wife Mindy and our three sons. Rory was six–a month shy of his seventh birthday. Robbie was five, Rickey was two. Rory had come home from his park district tennis class complaining of pain in his hand. We attributed this pain to playing tennis. The next day, after work, Rory was sitting on my lap playing with the computer and he was having difficulty moving the mouse. Later that evening, walking was difficult for Rory and he began to have balance problems. As a result of these issues, we went to see our pediatrician the next morning. Upon examining Rory, he sent us directly to Children's Memorial Hospital to see a neurologist. The doctor ordered a CAT scan which indicated that Rory had suffered a stroke. This was difficult to understand given the fact that Rory was only six. The neurologist explained that the stroke was a result of a virus, a blockage, or a brain tumor. She scheduled Rory for an MRI in two days. Over the next 48 hours, Rory's symptoms steadily progressed. His speech was slurred and he was having difficulty swallowing. Early that Thursday morning we took Rory back to Children's Memorial Hospital for his MRI. I was dressed for work convinced that Rory was fine. However, the doctor shared the results of the MRI and spoke the words that no parent should ever hear, “your son has a brain tumor, a very very bad one.” It was at that moment that our world changed forever. Rory was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG), the deadliest type of pediatric brain tumor. The tumor is located in the pons area of the brain and, therefore, is surgically inaccessible. Rory began treatment immediately, which consisted of daily radiation and a cocktail of chemotherapeutic agents. Initially, Rory responded well to the radiation as the tumor shrank in size and his symptoms subsided. He was then able to attend school each day after his radiation treatment. His first-grade classmates shouted Rory's name each morning when we walked him into class. The beautiful sound of hearing Rory's friends scream his name in joy still rings loudly in our memories today. Unfortunately, by the end of June Rory's tumor began to grow; radiation was no longer an option. We were told to take Rory home and make him comfortable. Rory's bedroom became his hospice room. It was at this time we witnessed true unconditional love. My mom and dad, Rory’s grandma and papa, his cousins, Marc and Craig, Auntie Ellyn and Uncle Al, Aunt Jen and Uncle Jay, as well as countless family friends, were fixtures in our home. Rory's grandma read books to him and learned how to change his IV bags and dressings. Rory was surrounded by love. When he lost his ability to speak, we had to rely on a bulletin board filled with one-word note cards. These cards allowed Rory to communicate his needs, hunger, thirst, feeling tired, etc. One night, Mindy, Rory, and I were alone in his bedroom. Holding Rory's hand, we asked him to squeeze our hands to respond to our questions. We asked him if he was scared, he squeezed our hands signaling “yes.” We told Rory how much we loved him and that we will love him forever. We will always be his mommy and daddy. The fact that Rory was afraid will stay with me and haunt me for as long as I live. Rory passed away in his bed that evening July 22, 1998. 

So often, the worst event of your life prepares you for the greatest assignment of your life. We knew we had to start a charitable foundation in Rory's name so that one day no parent will have to hear those words from the doctor, “I'm sorry your child has a brain tumor and a very, very bad one.” The Rory David Deutsch Foundation was established the next day by Rory's family and friends. Established charitable organizations tried to deter us from our plan. These organizations believed that we did not have the infrastructure to become an enduring charitable foundation. We were advised to hold a Backyard BBQ and donate the proceeds to an existing charitable group. They continued to suggest that a “kitchen table foundation,” such as ours, would only survive two years before interest and support would wane. We chose to ignore that advice and honor Rory through this Foundation and, therefore, keeping his name alive. We focused on the process of enlisting family, friends, and the community to generate support for our cause without focusing on the results of monetary fundraising goals. We subscribed to the Field of Dreams Theory “ that if you build it they will come.” Our inaugural fundraising event was held at the Adler Planetarium in April of 1999. It was a family event without corporate sponsors, and very successful due to the generous efforts of volunteers. Over 1,600 people, half of whom were children, were in attendance and over $600,000 was raised that evening to begin our dedication to funding pediatric brain tumor research. 23 years and several events later, the Rory David Deutsch Foundation has created two research programs: A fully endowed university professorship in Rory’s name at Duke University, and an endowed Rory David Deutsch Research Scholar at Lurie Children's Hospital in Chicago. The members of our foundation's board today, are the same individuals that were involved upon inception in 1998. My sister, Ellyn, handles the accounting. My mom, Enid, manages the day-to-day business which involves tax letter acknowledgments and thank you letters. These communications continue to honor Rory with every letter that is sent. Mike Krzyzewski, Coach K, hosted a fundraising event in October 2002 in Chicago benefiting the Rory David Deutsch Foundation. He spoke about the importance of being on a team–Rory's team. “We, Rory's team, are continuing our own championship quest to go the distance against pediatric brain tumors. Our victory will be defined by the energy we bring to that quest, By our commitment and the extent of that participation.” 

Rory was a sweet, kind, bright, inclusive old soul who loved the planets, the solar system, James Bond movies, and Bruce Springsteen. He still inspires and motivates us and so many others to succeed in our mission. We often speak with parents from across the country who are facing the devastating diagnosis of a brain tumor. These are difficult and emotional conversations, and we feel it is incumbent upon us to speak with families and we honor Rory with every conversation. We have always maintained that the success of the foundation cannot be measured in dollars alone; our success is the result of the passion, selfless work, and dedication of everyone involved. This is Rory’s legacy. Legacy is not leaving something “for” people. Legacy is leaving something “in” people. The Rory David Deutsch Foundation was not only established because Rory died, it was established because Rory lived. 

After all of these years of honoring Rory and healing from losing him, one thing has remained constant. We still grieve. We still have a hole in our hearts. We miss him madly, and there is not a day that goes by where he is not loved and honored by us. That emptiness resides in our souls, but we move forward and we fill that void by carrying on his spirit and his story. 

Today we have four beautiful children, two boys and two girls; Robbie 28, Rickey 25, Reggi 21, and Roxie 19.

Adversity is an experience, not a final act. Our setbacks do not define us. Our reaction to them will reveal who we are. Adversity and setbacks are the challenging times that are tests of character. Rory’s character still inspires.

We continue to hope for brighter tomorrows for children with brain tumors."

About Ross Deutsch: Ross is a husband, father, basketball coach, Greyson family, and a hero. Together with Mindy, his wife and most important person in the world, they have been to hell and back losing their first-born son to an inoperable brain tumor when he was just 7 years old. They have kept their family together, and grown it stronger. They single-handedly started a foundation to honor Rory’s life, and over the past 23 years have raised millions to fund childhood brain tumor research. They have been a supportive friend to parents who have received the same diagnosis for their children, and they have been a resource for how to best care for them as they fight for their lives. Each day, with a sparkle in his eye, Ross steps up to the challenge of living the best life he can by honoring Rory’s spirit and carrying on a legacy of courage, positivity, and perseverance.