“They found a tumor. You need to come here…”
May 3, 2015. It had been a terrible night of sleep. Pepper had not been herself for two weeks, but the previous night seemed different. She had seen the doctor twice for constipation and a distended belly, responding somewhat to medication. However, yesterday she didn’t want to swim at the hotel pool and now couldn’t sleep, moaning from the discomfort. I had the start of a 70.3 triathlon in a few hours and with neither of us sleeping, Deb took Pepper to the ER. I fell back asleep and was awoken at 4:00 with the words above. I don’t remember the next hour, but somehow made it to the hospital.
The United States has raised awareness for pediatric cancer in fits and starts since 1990, finally codifying September as the official month in 2019. Cancer is now the leading cause of death by disease for children, with 43 new pediatric diagnoses each day. Pediatric cancer differs from adult in that it is not linked to lifestyle or environmental factors (“not the kid’s fault”) and treatment is often more successful. My eight-year-old daughter is a proud cancer survivor, but 20% of those diagnosed are not.
Below are organizations that took care of our family the past five years and I ask that you consider supporting one that speaks to you:
- UVA Health: Pepper left her left kidney in Charlottesville. Over eight scary days we learned what a Wilms’ tumor is, waited seven hours for a four hour surgery, helped the chief of pediatric surgery wrestle with his first tumor rupture, and watched our daughter continue to lose weight while trying to regain the strength to walk. The happiest day of my life still is being surprised when Pepper rolled up next to me in her wheelchair, joining me for lunch on her first venture outside of her room.
- Children’s Hospital of the King’s Daughters: This is where Pepper received two weeks of radiation and six months of chemotherapy. We joined a new family, made lifelong friends, and will be forever grateful to Dr. Lowe, Nurse Rob, & her child life specialist, Bryan. Ironically, Pepper’s UVA oncologist was the son of her CHKD radiation anesthesiologist.
- Roc Solid Foundation and New Community Church: One day at chemo someone dropped off a blue “ready bag” with everything we would need for unexpected trips to the hospital (we had two). One weekend a limo, members of our church, employees from my work, and half of Elizabeth City showed up to build Pepper a playground while we had breakfast and tried on period wedding dresses at the Museum of the Albemarle. We still have the playground and I believe it’s set a record for moves, now it it’s third backyard.
- Nemours: After it felt like CHKD broke up with us (that sounds high school-ish, but is the best way to describe the feeling), the bulk of Pepper’s survivorship care was in Jacksonville. Dr. Bradfield of course took great care of Pepper, but it was in addressing parental concerns that he stood out. Scansiety is real and continues to this day.
- Dreams Come True: At some point it came up in conversation that thanks to my propsensity to move every few years, Pepper had not had her “wish” that every kid with a life threatening illness deserves. Enter Ashley and events that made Pepper feel, in her words, “happy.” She met Tim Tebow and Chip Gaines. She played Top Golf, ate all she could, and walked onto the baseball field with the Jumbo Shrimp. She visited the World Golf Hall of Fame and received extra special daily surprises on an already very special Disney cruise. In a last bit of irony, we learned that a company within my industry based at the same airport I worked sponsored her cruise.