Heepwah for Hope: Remembering Emily

Why I'm Shaving for St. Baldrick's
In the Spring of 2011, I found an odd bump below my right ear that my doctor thought might be a swollen lymph node. It turned out to be a malignant tumor in one of my salivary glands. Mammary Analogue Secretory Carcinoma (MASC) was the official diagnosis after the mass was removed and sent to Mayo Clinic for identification. Following surgery, I had 6 weeks of radiation treatments and I have been cancer free since. A few months before I had my surgery, Emily Beazley was diagnosed with Stage III T-Cell Lymphoblastic Non-Hodgkin’s Lymphoma. Besides cancer, Emily and I had one other thing in common, Camp Ondessonk. I had attended Camp Ondessonk as a child, and ended up working there when I was in college. Emily had a long family history with Camp Ondessonk, her dad had been a camper and staff member, and as it happened I was on staff with her aunt who is a very dear friend of my wife and mine. Speaking of, I also met my wife while working at Camp Ondessonk and now our children attend sessions every summer. Every year Camp has a special weekend where former staff and volunteers are invited back for a reunion. At one of these celebrations is where I first heard part of Emily's story and saw her sing on stage in the Grotto. I followed Emily's progress on Facebook, I'll never forget when we went hunting for purple or green light bulbs for our front porch to "Light It Up for Emily". Emily bravely battled her cancer for four years. During that time she also dreamed of her life after cancer. During her final remission, Emily conceived the idea for Kures for Kids (http://www.kuresforkids.org) and designed a logo for the organization. She wanted to be a pediatric oncology nurse when she grew up, so she could pass on the love and support that she had received as a patient. Emily lost her battle with cancer and gained her Angel Wings on May 18, 2015.

Since Emily's passing, cancer has hit close to home for me again. My mom was diagnosed with Chronic Myeloid Leukemia (CML) and now takes a daily pill to, mostly, control her symptoms and keep it from spreading. Up until the early 2000's, CML was typically fatal within 7 years of diagnosis. Through research doctors were able to identify a genetic marker and develop drugs that inhibit the CML cells and keep it from getting worse or spreading. I was fortunate that my cancer was caught early and was easily removed and treated with radiation. My mom has been fortunate that research found a way to keep her CML from being fatal. For many cancer patients, and especially for pediatric cancer patients, that is not the case. There are many types and subtypes of pediatric cancers, cancers that occur more frequently in infants and cancers that occur more often in teens, cancers that develop so slowly that they are asymptomatic until they have spread too far to be stopped and cancers that are so aggresive they spread too fast to be stopped. Pediatric cancer patients also receive life altering treatments while their bodies are still developing, and many that survive often have complications from the treatments that can be more severe and life threatening than the original cancer. Pediatric cancer is different, and more research specifically geared towards pediatric cancers is needed. In order to support this research and continue the fight against pediatric cancers I am shaving my head as part of an Emily Beazley's Kures for Kids/St. Baldrick's fundraiser. You can support me directly through St. Baldrick's website at https://www.stbaldricks.org/participants/yahoots or by purchasing a Heepwah for Hope t-shirt through CustomInk at https://www.customink.com/fundraising/heepwah-for-hope2.

Thank you for your support!