We spent Thursday at the Plaza Branch of the KC Public Library. A few people mentioned that they had seen the news coverage the night before on Channel 9, (KMBC/ABC). It is always great to hear that people saw coverage of the quilt and childhood cancer. Media coverage really helps advance the cause. An interesting note abou the KC Plaza Library. When we arrived, one door and window were boarded up. Apparently a seven year old boy drove the family car into the library. His mom had left him in the car with the keys in the ignition while she went into the library. the boy was not injured, but the lesson here is to never leave kids unattended in a car!
Chandler’s mom came by to see the quilt. A surprise visit was from a pediatric oncology nurse, Bette Marcus, who had been a nurse to both Chanler and Derrik– both boys are on the quilt.
We broke down at 10pm and got back to the hotel after midnight. Set up at Union Station is in the morning.
Our two local angels are Chandler Newton, and Derrik Ray. We’d like you to meet them:
Chandler Dale Newton, Chan-Man, came into this world on December 28, 1998, in Kansas City, MO. He was always in a hurry to accomplish things. He was diagnosed with a PNET/brain tumor on March 21, 2001. He had his first surgery on March 26th. He was always a shrewd business man and was able to con almost anyone out of their prized possessions, or con anyone into getting a pet for him. He would charge his older brother (either money or watching Barney) to sleep with him. He would sell tickets for people to go into his room, but the price depended on who the person was. It cost grandma and grandpa a buck or two to get into his room. After he had tendon lengthening surgery, he had a cast on his arm. He told everyone at church that he had been bitten by an alligator. He learned that he could use syringes to squirt the doctors and nurses. In Portland, Oregon, Chandler swiftly pick-pocketed the neuro-oncologist. He conned his occupational therapist to lock herself in a small storage box. He was an avid ladies man. He was often the only boy at girl birthday parties. He loved school and his Kindergarten teacher. Chandler loved to travel and go anywhere he could. He was a true snuggler. He loved to help bake in the kitchen. He loved his aunts, uncles, and grandparents, but especially his brother. He wanted to do everything his dad did too!! Chan-Man was a master Lego and K’nex builder. Chandler would do anything to make people laugh. Chandler survived for almost 6 years after his initial diagnosis, thanks in large part to his amazing oncologist, Dr. Max, and his very special nurse, Bette.
Derrik Randall Ray 4/24/1996 – 6/9/2007
Derrik was your average 2-year-old little boy who always had a smile on his face and was looking for trouble. The only difference was that he had a rare muscle disorder that prevented him from walking with ease. We accepted the fact that his life would be harder than most but our family was up to the challenge and knew we would always treat him “normal”. Then one day he became sick and after numerous tests we received the news that he had desmoplastic small round cell tumor that was located in his entire abdomen and lungs. The doctors told us that he probably had it since birth. They told us this cancer is VERY rare and that only about 50 people in the world were diagnosed with it a year. This didn’t slow him down, though. In his eyes he was never sick. He endured every test, radiation treatment and chemo treatment with a smile on his face and a song in his heart. Derrik was a firm believer that God rode a Harley. He believed that the airplane streaks in the sky were God’s Harley tracks and you weren’t going to convince him otherwise. He had a connection to God that only children can have. He loved NASCAR, football, and singing. He was the karaoke king at Children’s MercyHospital in Kansas City, MO. We choose not to live without Derrik but instead, we live because of him. We love you, Baldy!!