I ride for patients like Edgar.
In my time as a PA in the pediatric ICU at Children's Colorado, I have met many children, adolescents, young adults, and families who have left a lasting impression on me – but none quite like Edgar.
Edgar is one of the sweetest 13 year olds I have had the privilege of meeting and helping care for in my time at Children's. Almost a year ago, he was diagnosed with acute myeloid leukemia and required a bone marrow transplant. He has had multiple complications including kidney failure & graft versus host disease and has been in the ICU with us for nearly this entire year. His days are currently filled with continuous dialysis, antibiotics, pain medications, and physical therapy. But they are also filled with laughs – the giggles of he and his siblings that echo through the halls of the ICU as they try to maintain some semblance of normal, the smiles of his medical team as he tells jokes and gives compliments, his mom smiling every time I walk by and wave, and most important the smile he musters even on very tough days.
When I first asked Edgar if I could ride the Courage Classic for him, I asked what he would want to share about himself. With tears in his eyes, he told me that he is a Christian and prays to God frequently for the other kids in the ICU who are not as lucky to have their families by their side, as he does, on his journey. Edgar has experienced incredibly challenging diagnoses, treatments, therapies and most of us cannot begin to imagine the pain and exhaustion, yet he somehow still manages to be the most selfless teenager I have ever met.
He is an avid soccer player - a midfielder and no doubt a leader on the field, a loving brother, a cherished son. He loves smoothies, Honey Bunches of Oats with whole milk, Panda Express, and Donkey Kong. He pushes himself every day to sit in his chair for an hour for physical therapy. When he feels up for it, he gets VIP access to the Teen Zone for movie premiers, goes outside in his wheelchair when the weather is good for some sunshine, listens to concerts from the music therapists, and has quite the family holiday celebrations. His dogs Blue and Yogi have also made quick visits to see their favorite older brother!
Edgar’s care epitomizes what it means to be part of the Children’s family. Experts from across the hospital (and country) know and love to be involved in his story. He has received experimental treatments in hopes of his cells growing stronger. His child life and therapy team mobilize resources from every corner of the hospital. And most of all, his love for his family, friends, and medical team keep us all pushing forward.
It is a privilege to know and help care for Edgar and his wonderful family. This year I’ll have to show him pictures of the ride, but he’s determined to ride alongside me in next year’s Courage Classic.