30 DAYS/30 STORIES® 2020
Pediatric cancer was never on our radar. Our 21-month-old twin daughter had not been feeling well. She was throwing up once every morning, holding her head frequently, crying to be held, and hanging on to a wall or hand whenever she tried to walk. We thought perhaps it was an inner ear issue or an ear infection. A trip to the pediatrician turned into a trip to the ER with a CT scan on December 8, 2015. The CT showed a mass in our baby girl’s brain that warranted immediate admission to the PICU. The world fell out from under us at that moment.
Clara’s surgery was on December 11, 2015. In those three short days between the CT scan and the surgery, we were thrown into a whole new world of acronyms, unfamiliar medical terms, and a terror like nothing we had ever felt. Friends and family pitched in to help care for our 21-month-old twin son and our four-year-old son as we shuttled between the hospital and home to spend time with our children. At one point during Clara’s PICU stay, Santa Claus and a woman named Michelle from PCFLV stopped by her room with gifts while Clara was asleep. Little did I know how much Michelle and PCFLV would come to mean to our family in the months and years to come.
Gratefully, Clara’s entire brain tumor was removed during surgery. She completed 30 rounds of proton radiation therapy in Philadelphia to treat any remaining microscopic cancer cells and was home in time to celebrate her second birthday in March 2016.
PCFLV provides an amazing support network to give all family members a soft, safe place to land when cancer turns their worlds upside down. Families at any stage of their cancer journeys are invited to join PCFLV programs and activities. These events provide emotional support and connection with other families going through similar experiences. Some of these opportunities include Caregiver Coffee, Kids Konnect Programs, and time for parents to connect with other parents at Moms’, Dads’, and Parents’ Night.
Our family has truly been blessed by PCFLV’s staff, volunteers, and mission. As a family, we have made memories of a lifetime together at family events like Marvel Live and Disney on Ice at the PPL Center, as well as the “Scare Away Cancer” day at Dorney Park. As parents, Josh and I have found comfort and support spending time with other parents going through similar experiences when attending the creative Mom’s Night Out and active Dad’s Night Out events.
The event that holds a VERY special place in our family’s hearts is Camp Smile. When I ask our kids what their favorite thing is about PCFLV, they unanimously say Camp Smile. Each summer, PCFLV kicks off summer with this week-long day-camp event. It gives kids with cancer and their siblings an opportunity to experience art, theater, sports, swimming, games, and phenomenal camp fun. It is staffed by volunteers with amazing hearts of service, including teachers, actors, sports teams, and, most importantly, RNs to meet the medical needs of campers that, due to medical concerns, would not be able to attend a “regular” camp experience. Junior Counselors are quite often kids with cancer or a sibling and are paired with each camper under the age of 12. Our children have formed amazing emotional bonds with the counselors and junior counselors, and look forward to renewing bonds of friendship and making new ones every summer.
We are so very grateful to be part of the PCFLV family. Please consider joining forces with PCFLV in their mission to support, encourage, empower, and comfort families like ours throughout the cancer journey.