Kevin Weir
Ewing's Sarcoma
5-years-old at Diagnosis

It has now been nearly nine years years … nine amazing, terrifying, incredible years since our little boy was first diagnosed with cancer. He has endured more in his young life than most people could ever begin to imagine. He was subjected to a year of very intense, inpatient chemotherapy. He had the majority of his right pelvic bone removed and reconstructed with a donor cadaver bone. He is still here.

Every day, we see reminders of Kevin's cancer. At dinnertime, our family, usually very animated, discusses a variety of subjects. Kevin, quite often, doesn't hear what is going on, or gets lost in the conversation due to his partial hearing loss. We are often interrupted with, "what, what did you say?!" When Kevin runs around on the playground, is at soccer or baseball practice, and has to stop because he is winded, we know it is due to the "late effects" of his treatment. At every breakfast and every dinner, there is a small white pill at his place … heart medication for the cardiomyopathy caused by his chemotherapy.  Recently, I was applying sunscreen on Kevin. I couldn't reach an area of his back because of the scoliosis twisting his spine … caused by his pelvic surgery. The scars are ever-present. He has a small, but fat (kiloid) scar on his chest, where his port-a-cath had been implanted. He has a very large scar, extending from his groin, up over what used to be his right hip, down through his buttocks from his cancer surgery. He is off-kilter. When he tires, Kevin dips his right shoulder … he is just too fatigued to walk on his right toes anymore. The reminders are everywhere.

We still live in fear, but the fear is not nearly as invasive, nor as acute, as it once was. When Kevin complains of pain, I don't automatically go into panic mode, as I did when Kevin had first completed his cancer treatment. I walk that fine line, between information gathering and overburdening my son with questions: "when did the pain start?" "where exactly is the pain?" "does it bother you at night?" "do you need some medicine?" …. When the pain subsides within a few days, we breathe again, go on with "normal life", and the worries fade.

Throughout these almost nine years, we have witnessed so much. We have met the most incredible people. The doctors and nurses are so dedicated to the care of the entire family. They are amazing. We saw children going through cancer treatment who did not have family support – no one was there in the hospital with them. It was heartbreaking. We met families, whose burdens make ours' seem like a walk in the park. One family we met had a 2-year-old son diagnosed with neuroblastoma. During that same month, their 11-year-old daughter was diagnosed with cystic fibrosis … unfathomable.  We also met families who lost everything when they lost their children to cancer.  Over and over again, we've told moms and dads that we are so very sorry for their losses, but these words seem so inadequate.

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