September is Pediatric Cancer Awareness Month. At PCFLV, we are committed to spreading the GOLD all year long. However, in September, we truly make it our mission. 30 Days, 30 Stories celebrates the children we know and love and the brave battles they fight and have fought, with their families by their sides. In celebrating these beautiful children and their stories, we hope to inspire you to join us in our mission to SPREAD THE GOLD in September and all year long!
April 12th, 2016 at 10:28pm...The words "your daughter has a brain tumor" were uttered to my husband and I in room 45 at the Children's Hospital of Philadelphia's ER. You stand in disbelief in front of complete strangers (doctors and nurses). Trembling, numb, and emotionally broken in a split moment of time.
When your child is diagnosed, you are faced with two choices. Choice #1: The decision to just break down, crumble, and crawl into a hole of complete depression and sadness OR choice #2: You choose to fight with a smile and make it sunshine and rainbows because she doesn't understand that she is sick and she is smiling at you through the glass doors as the doctors are telling you she may have cancer but they don't know anything yet. We chose the latter of the two choices that night.
Two weeks after Jillian's 4th birthday she was diagnosed with high risk disseminated medullablastoma. Jillian is a 4 year old bubbly, extremely happy, and sassy preschooler. In early April, she had no typical symptoms leading us to believe something was wrong. It started with her face looking funny which was thought to be viral Bell's palsy. Ten days after leaving urgent care with a diagnosis of Bell's palsy, I had a feeling. You know that mothers intuition feeling when something doesn't feel right. The day of her diagnosis, she was holding onto clothing racks in Target to gain her balance and couldn't get herself into her car seat. My worries turned into the unimaginable and 5 months later we are still in treatment. We are currently at CHOP in round two or three of stem cell treatment and hope to have her home for the holidays.
CHOP is our second home. We have been primarily inpatient since diagnosis - almost 150 days. She has never asked what happened, why am I here, or am I sick. She misses her brothers and puppy very much. Jillian puts her sassy pants on every day. She laughs and smiles through the chemo, the dressing changes, and daily shots. She is the definition of bravery like all of the other warrior fighters out there. She amazes us everyday with her fighting spirit and determination. She has been our reminder in this fast-paced life to stop, live in the present, and don't worry about the future. When you don't know how long you have left with your child...you soak in all the moments. You take notice of the way they smell after a bath, you listen to their giggle and let it imprint in your mind and heart. You let them stay up until midnight having dance parties with the nurses in the hallway at CHOP just because it makes them laugh and smile. I stare at her when she is fast asleep at night through the holes in the hospital bed wondering how did we get so lucky for God to choose us to be her parents on this journey. You love harder than you ever thought you could and you let your child teach you the meaning of life when you thought you would teach them what life was all about. Jillian Paige - "You got this Girl" and we are all behind you cheering you on and praying for a miracle.
-written by Jillian's mom, Janelle