When Ty was born, he was sick. He spent his first six days in the hospital and came home with his own personal tanning bed. A week later, we were told needed a blood transfusion for an unrelated issue. In total, Ty received three blood transfusions that first month of life and also endured daily blood work for three months. It was stressful but we had every reassurance our son was going to be healthy once his red blood cell count normalized.
The detail most don't realize is where we spent our blood transfusion days. We were on the oncology floor at Kosair Children's Hospital. Given the duration of our twelve hour days waiting on the process to be complete, I often took Ty and walked the halls to pass time. I have never been good at sitting and those God forsaken ugly pink walls in his assigned room was enough to have me considering a paint order to better utilize our time there.
During my walks, I saw kids attached to iv poles playing in the toy room and one little girl, literally no bigger than an eighteen month old toddling alongside her iv through the hallway. I felt guilty. I knew my son was going to be okay and here was this beautiful little girl and it was no secret her parents didn't have that same confidence.
But the memory that stands out the most was another mother. On an otherwise quiet night, all of the sudden there was a commotion around a corner I was passing. This mother started yelling for vanilla pudding. She was frantic and screaming and slamming cabinet doors. Her son wanted vanilla pudding. On the surface it looked like a temper tantrum but I immediately recognized it wasn't. This poor woman was trying to control ONE thing. It was a small thing but it represented so much more. Her baby was sick, very sick and he wanted a simple vanilla pudding. Surely a mother whose job is to protect and provide can find a damn pudding.
I rushed toward Ty's room to deposit him with Greg so I could offer to help but before I could, she slid down the wall in uncontrollable sobs and a nurse quickly slipped into place beside her. That amazing nurse held the broken mother in her arms as she rocked and cried. I returned to Greg and the truth is, I never again left our ugly room. I couldn't. My heart was broken and the painful reality of what so many on that floor were enduring was more than I could face at the moment.
In the United States, less than 4% of all cancer research funding goes to pediatric cancer research. Please re-read that statement. Less than 4% is devoted to finding cures for our babies and that needs to change. The lie pushed through media and pharmaceutical industry is that childhood cancer is rare. It is not rare and treatment options were designed for adults, not kids. Children are enduring painful, brutal treatments because our government doesn't see the value in providing alternatives that were created for kids. We know first-hand families who have lost their babies to cancer. They have been in battle and have the emotional scars as proof. No parent should have to watch their child suffer and lose them anyway because with less than 4% devoted to finding solutions, there isn't much hope. September is Childhood Cancer Awareness Month. Without awareness, change won't occur. How aware are you willing to be?
