On January 9th, 2020 my son, Theo, was diagnosed with leukemia. Nothing has been the same since. Did we miss something? Is this genetic? Should have we done more? These are some of the questions that first popped in my mind. The simple answer: the causes of childhood cancer are unknown. Basically, it’s just bad luck. No one knows for sure when it began. No one missed anything. No one could have prevented this. So now I will share how it all started, the signs and symptoms… from the beginning.
Looking back at some of Theo’s symptoms, it all makes sense. His growing fatigue, pale peaked skin, random pain in his joints and that never ending cold. Theo developed a bad cold in early November that never completely went away. You know the kind. It gets a little better then comes back even harder, and continues like a roller coaster for the next couple of months. He later complained of ear pain and headaches just after Thanksgiving. His ears were so clogged he could barely hear. Three visits to the pediatrician confirmed it was just a bad cold. Totally normal, after all, it’s cold season!! So naturally I start to feel like a hypochondriac mother and tell myself to stop over worrying about everything. Even while spending two weeks in Mexico over the holidays Theo was showing more signs that I dismissed as him still getting over that bad cold. He had little interest in playing on the beach, always cold even in 80 degree weather, asking to go to bed early, pale skin after days of sun (and Theo tans very easily). Then when we returned home he had a fever, bloody nose and red dots on his chest. He was so exhausted he couldn’t even climb the stairs in our house. Ok, now something was definitely wrong. We went back to the pediatrician, this time determined to figure out what was wrong. I believe the doctor knew it was leukemia when he saw the red dots, called petechiae, but played it cool to keep us calm. He sent us to Seattle Children’s hospital to have some blood tests and informed us that “there may be a very small chance that depending on the results, we go into the emergency room tonight”. What?!?!? The thought of cancer had not even entered my mind. And I wasn’t about to let it then either. But of course we all know now that it indeed is cancer. It wasn’t until two hours later, when we were back in the emergency room and I heard the doctor say the word “leukemia” that it finally hit me. Like a knife in my stomach, it was the worst pain I have ever felt. The darkest scariest night of my life. This could not be happening, not to my sweet boy, why why why why ?????
Theo stayed in the ICU for the next couple of days. Over the next 48 hours I slept maybe four hours. It’s all such a nightmare, a blur of extreme sadness. It took me a week to be able to even say the word “leukemia” without completely balling. We must have met dozens of nurses, doctors, social workers within those first 48 hours and been given an encyclopedia of information about what was happening and why. An overwhelming amount to take in when you are trying to process that your child has just been diagnosed with cancer. There’s no time to think or feel. Just accept it and take it one day at a time. ONE DAY AT A TIME.
“You realize the sun doesn’t go down. It’s just an illusion caused by the world spinning around” -The Flaming Lips
One thought on “From the Beginning”
Thank you Kelly. I feel so sad…but also hopeful for Theo, you, and Louis.