"Dear Mr. President..."
We've asked families impacted by childhood cancer to write letters to President Trump upon his inauguration. Parent advocate Tony Stoddard granted us permission to share his letter in full here. If you have five minutes to send your own letter, please do so here.
Dear President Trump,
Congratulations on your inauguration. As you begin your term, I want to share my experience with childhood cancer to help illuminate the challenges facing our kids and families.
On January 20th, 2012, my son Cole died from neuroblastoma cancer: he was only five years old.
Cole had a great passion for life. He was determined to squeeze as much happiness and laughter into each day as possible. Nothing brought him more joy than to make others smile and be happy. He idolized his sister Tara and wanted to do everything she enjoyed; his taste in music, his pleasure in painting and crafts, his thirst for learning - it all came from his wanting to be like her.
He was inseparable from his identical twin brother, Troy. They did everything together from the moment they woke each morning. They would sit together on the same chair at the kitchen table for breakfast, then play together with their fire trucks, Legos, and matchbox cars. When it was time to go out and play, they rode their bikes together, dug in the dirt together, and sometimes fought together, always ending their little scuffles with a hug and an “I'm sorry” and then go right back to playing. At night, they insisted on having their beds next to each other’s. Many nights Michelle and I would sneak upstairs while they slept and just watch them, cuddled as one, their arms around each other. Michelle would often take pictures of the way they slept so close. I would worry that the flash from the camera might wake them up. I'm so glad now that we have those pictures to always enjoy and remember the intense closeness they shared.
Cole loved to play all sports: baseball, soccer, football and basketball. He was a naturally gifted athlete. He would sink basket after basket without effort, hit the baseball a mile, and he had a strong accurate arm. In the winter, I was amazed at how easily he could nail me in the face with snowballs. I smile when I recall Cole running with his sister, brother, and cousins; he skipped more than ran with a magnificent look of joy on his face.
He truly appreciated life and especially the outdoors. Every so often, while the other children were playing, he would just lay down in the grass or snow, put his hands behind his head and just stare up at the sky. I frequently wonder what such a young boy could have been pondering as he looked upwards.
He had a depth and insight into life that most adults will never acquire. At times, I would get frustrated or stressed out and I would occasionally lose my patience and start raising my voice. Cole would just look at me with that little smirk of his, as if to tell me lighten up, it's not that serious. As parents, we are supposed to teach our children, but I learned more from Cole. Most things that we get stressed out about or upset over really aren't that serious. When Cole got sick I learned how very true that is.
For the year and a half that Cole was being treated for neuroblastoma cancer - the surgeries, chemotherapy, radiation, and the hundreds of medicines and needles - he rarely slowed down. He continually bounced back, determined to keep up with the other children. While he was at the hospital, he delighted and entertained the doctors, nurses, security guards and the other workers who he met with his eagerness to share his love and humor. He was always giving an “I love you," a hug, or the opportunity for them to hold one of his many stuffed animals which he called his “friends.”
Cole was also quite the little flirt. I remember one time when I first brought him up to the playroom at Tufts Medical Center, a very pretty girl who worked there came over and asked him if he wanted to paint. Cole asked her what her name was. She told him Carrie, he then asked her where she lived. She said, “I live in Boston.” Then he asked, “What's your phone number?” I remember thinking: “That's my boy!”
Eventually Cole's illness did slow him down but not before we got to spend Christmas and New Year’s together as a family. Near the end, Cole looked up at my wife and I and gifted us with these words, “Smile, Be Happy!” On the night before Cole left us, he kept asking me to sing him songs. I sang him all of his favorite bedtime songs. After a while I ran out of songs that I knew the words to. Even though he never really cared for the show Barney, I started to sing the theme song. "I love you, you love me. We're a happy family. With a great big hug, and a kiss from me to you, won't you say you love me too." He flashed the biggest smile and kept asking me to sing it over and over. That song allowed me to see his smile one last time.
That is a little bit of who Cole was, but to me he is still a hero. He is the driving force behind my desire to increase Childhood Cancer Awareness, and he still continues to bring joy to people when they need a reminder to "Smile, Be Happy."
Please do more for children like my son Cole who are killed by cancer each year. Please start by lighting the White House Gold in September during Childhood Cancer Awareness Month to show us you stand with our kids. Also, although childhood cancer is the number one killer by disease of kids in our country, the National Cancer Institute devotes less than 4% of its cancer research budget to childhood cancer research. Our kids deserve better than this.
In 2017, approximately 16,000 children and adolescents will be diagnosed with childhood cancer, which remains the leading disease killer of kids. By the end of your first term in office, there will be at least 500,000 childhood cancer survivors in the United States, and two-thirds of them will be suffering from serious long-term effects from their treatment.
Childhood cancer is not a partisan issue but instead a critical moral issue affecting the health and well-being of our nation's children. These children are counting on your leadership to ensure that there are no disruptions in insurance coverage or cuts to cure-seeking research funding.
Tony Stoddard (Cole’s Dad)