September is Childhood Cancer Awareness Month. I don’t need a month to make me aware of Childhood Cancer. I wake up every morning and think of my precious son, Matt, and I am immediately aware that pediatric cancer has stolen not only my child, but 15 years later, is still taking far too many children away from their parents and families. Each day, 42 families in the United States will receive the devastating news that their child or teen has cancer. In addition to being Matt’s mom, I am also a volunteer, donor, and employee at Children’s Hospital of Pittsburgh of UPMC. This has given me a unique perspective on the needs of the patients and their families, the needs of the hospital and the programs within, and how to serve all of these groups. I am the project coordinator for the SurvivorConnect Program in Hematology/Oncology. We follow over 650 patients who have survived pediatric cancer and are moving toward transitioning to primary care.
I meet many families, and often they recount the story of their child’s diagnosis. With each story, I am taken back to October 26, 2001, just weeks after 9/11, when a plane called “cancer” fell out of the sky and bombed our world. Matt, our second of four children, was diagnosed with non-Hodgkin’s lymphoma at the age of 12. I always believed that he would survive the terrible disease and be the one to tell his amazing story. But my dream didn’t come true in that way. Just nine days shy of his 13th birthday, our son, who fought a very difficult battle, lost his life. As you might imagine, this was a very difficult time for our family. Our lives were shattered. That was almost 15 years ago.
I do not share Matt’s story with our Survivor families. Instead, I use the experience of being a patient family to empathize with what our families feel. I am able to help advocate for them from a very deep and personal perspective. My passion for them is so real and in many ways, I see my son in every one of them. They are such fighters.
In 2009, my family became donors to Children’s Hospital, opening a place where kids could use technology called Matt’s Media for Kids with Cancer. It provided gaming, technology, movies, and computers for the “tweens” on the inpatient unit. Becoming a donor was a key to our healing. Just being able to see Matt’s name and getting to explain to people who he was gives me such joy. It is fun when someone connects the room to the actual boy! Many of our survivors and their families knew Matt and help fundraise now in his memory. Being able to give back to Children’s is a key to the healing for many of our families, whether their children are alive or not. It is one of the things that make this place so special.
When I became an employee at Children’s, I was so excited to tie my job skills to my passion. I am able to work every day with the doctors and nurses who worked so hard to help our son. I feel like I am among family every time I walk through the doors of the hospital.
Our newest partnership at Children’s is our Matt’s Maker Space project, which is at the cutting edge of STEAM education. Children and their families get to explore create and learn in a wonderful space dedicated to hands-on learning. I smile when I see the children interacting with the child life specialists, remembering when Matt enjoyed this part of his stay at the hospital. Just seeing these kids smile makes my day and I am grateful that I can still be a part of this world.
I am hoping that some day, we will not have to tell families that their children have cancer. I hope for a day when we will not have to have “awareness” months because all the cancer has been eradicated. But until that day, I will remember all the kids who are battling cancer and Matt, with his infectious smile and his gentle spirit. And I hope that when you visit this amazing hospital and see his name, you will remember too.