This is Michael; affectionately known as “Mikey” by our family and his close friends. He was a rambunctious toddler who enjoyed regularly beating up on his big brother, ice hockey brawls, and “helping” his dad with yard work. Then one day he woke up with his face almost sideways, lesions that were growing on his skull contorted his face. That night of February 5, 2007, at age 3 ½, Mikey was diagnosed with stage four, high-risk neuroblastoma.
He endured the unthinkable with thousands of needle sticks and hundreds of nights spent in hospital. He received countless rounds of chemotherapy and radiation treatments, blood transfusions, stem cell transplants, surgeries, antibody therapies, and MIBG treatments. Dealing with the nausea and mouth sores, skin peeling, lying still in scans for hours, learning to use his eye again, losing his ability to walk, losing his independence. Despite it all he still faced relapse after relapse after relapse and a secondary diagnosis of MDS. This little boy went to hell and back with a crooked smile on his face and giggles that were contagious, he would be in the hospital looking and feeling like death only to be revived by the mention of BINGO. Nothing stopped him until he decided to stop. Nearly five years ago he did just that. He told us he was tired, he was out of treatment options, and he was fed up with his broken body. Don’t be mislead, Mikey didn’t give up. He was ready to go. So he did.
Mikey died on March 19, 2013, but since February 2012 he has been counted as a childhood cancer “survivor.” The National Cancer Institute declares that those who survive five years from their date of diagnosis have also survived their cancer. That 80-85% of kids diagnosed with cancer survive statistic? Mikey is still, to this day, calculated into that surviving portion. We’ve been without our Mikey for five years, but we haven’t stopped fighting for him. We will be his voice for as long as he is considered a “survivor” of neuroblastoma and childhood cancer by the NCI. The more it’s sugarcoated, the longer Mikey is counted as a “survivor,” is more time being stolen from kids who are and who will be diagnosed in the future.
