On 9/11, my life, like many, changed forever. Watching the Twin Towers collapse and crash in the city of my childhood, my heart home - literally took my breath away. I was exercising to a videotape when a friend called and said, "Turn on the TV. NOW." A shocked Matt Lauer and Katie Couric were trying to understand what was happening as they reported live. "A small plane has flown into the North Tower." The news footage was gruesome. Fears for the safety of my husband, friends, and the city I loved filled my head. Then, the second plane crashed into the South Tower, and we knew instantly that this was no accident.
Little did I know the true impact of that day.
September 11th, 2001 was also the day of Carlos, our two ½-year-old son's first blood draw. It began with unexplained headaches that woke him in the night. The pediatrician suspected Lyme disease, and we had an appointment that Tuesday morning. We arrived at the doctor's office just as the third plane crashed into the Pentagon. It was surreal - like starring in your own disaster movie. Except it was really happening. Somehow, my husband, Jeff, got safely out of the city, and the school sent our daughters home early. I hardly even remembered the blood draw until the pediatrician called the next afternoon to say something was wrong with Carlos's bloodwork. I needed to take him to Norwalk Hospital immediately to have it redrawn. She was sure there were transportation issues the day before – they could draw it directly at the lab, and we'd have the results later that night. Something in the urgency of her voice made the hairs on the back of my neck stand up.
When the oncologist confirmed Carlos's leukemia diagnosis, he prepared us for treatment and handed us a binder with the protocol for beating this disease. It was 3 inches thick… a 29-month roadmap for the journey we didn't ask to be on. He was only 29 months old at the time. How was it possible that he would be receiving chemotherapy for the length of time he had been alive? I'd lived through 18 years of my mother's cancer - this couldn't be happening again. The doctors told us he had an 85% chance of survival. I was sure we would be in that group – but at the time, my husband could only hear, "15% don't make it." I am thrilled to share with you that Carlos is now 24 years old and not only surviving his cancer - but thriving.
Still, every year on September 11th, these traumas come back to haunt me. I am so grateful that my husband and son survived that day's repercussions. But our story is not unique. Over the past 20+ years, I have witnessed thousands of families face the devastating news of their child's cancer diagnosis and observed, just like us, that sometimes cancer is not even the worst or scariest thing happening in their lives. Cancer families are not just dealing with the diagnosis. Parents often stop working due to their child’s intensive treatment. There are siblings with special needs. Parents worry about their children falling behind their peers in school or missing out on important milestones in their childhood. The daily stresses of family life don't become any less demanding.
We cancer families have our own unique set of first responders – the doctors, nurses, Child Life specialists, and social work teams who immediately jump in to give each child their best chance at beating the disease. Circle of Care is part of the response team helping these families navigate the emotional, practical, and financial ramifications of having a child with cancer. Today, more than 85% of children diagnosed with cancer survive – but 100% need more than medicine to heal.
During Childhood Cancer Awareness Month, we honor all who have walked this path. Our children are our most precious treasures and our hope for the future. Pediatric cancer is not preventable, so we must do everything possible to heal, protect, and sustain these kids through this journey.
Until no parent hears the words, "Your child has cancer," we will be here.