Every day, questions and realizations that frighten and strengthen me enter and exit my mind like a busy train station. As I write this, our house is filled with the sound of two little voices, singing, playing, and imagining together. I can’t help but helplessly wonder how long we will have that complete joy. As much as we live by the tenet to focus on today, it’s hard not to think about tomorrow.
March 5 is day #266. It’s also the day Piper goes back to Children’s Hospital for her fourth MRI. It has been 90 days since her last scan. The process will be familiar, but no easier. We will hold her hand as they put her under. We will kiss her baby cheeks before crossing the long hallway to the waiting room. We will sit breathlessly for an hour. When they call us back to her recovery room, her peaceful face will jolt awake, followed by 30 minutes of disoriented crying. When she calms down it will be time to take the elevator to the 7th floor – a sort of second-home for children with cancer and blood disorders. But that is where my assurances end. While this scan will be performed like every other, its results are far less predictable. Statistics tell us this is the part of Piper’s story where we begin to talk about the end. Statistics are what DIPG families are given when we should be given facts, treatments, answers, and hope. Statistics be damned.
At nearly nine months post-diagnosis, Piper has had some of her best days yet. She plays with her cousins, she pushes the kiddie cart at the grocery store, she twirls in the living room, and she belly laughs daily. Her body is still weaker on her right side, and her left eye skews her depth perception and affects her vision, but she persists. Despite fatigue, and the side effects of her chemo, she approaches her days like she always has… with curiosity, creativity, and happiness – albeit with moments of justified frustration.
People say Neddy and I are to credit for her resilience through this. But we know her strength is all her own, and was there long before her cancer. If we are to credit for helping her live, then we credit our phenomenal family, friends, and community for creating support so strong it feels like a tangible object. Something we can rest our tired heads on, or hide our faces and cry in. We have been carried forward through so many selfless acts of kindness. We have never known so much humanity, and we’ve learned that love often comes from where we least expected it to.
Strength-giving realizations like these, and fear-inducing questions like what comes next, will continue to occupy our minds regardless of these MRI results. But I have to believe we are not ready to talk about the end yet. Piper, like every other kid (with or without cancer) is her own person, with unique cells and an individual spirit. She is our only real barometer, and even at this stage, she’s chasing away the clouds and calling for sun.