You Deliver Hope and Healing

You may not know me, but I have felt your kindness and generosity during my family’s darkest time. My name is Nicole Pierson and I’m a mother of three, a wife, a teacher and a CaringBridge supporter.

Here’s why: Almost three years ago, I was in a Pediatric Intensive Care Unit, terrified.

Days before, our son Gavin had been his typical 5-year-old self, talking of dinosaurs, running nonstop. But a slight vision problem coupled with his complaints of not feeling well led to an urgent care visit. Pokes, prods, tests and the words that no parent will ever be ready to hear ensued: “Your son has a brain tumor.”

Over the next year, the tumor grew and Gavin had five brain surgeries to battle what he called “Joe Bully” — each one coming with a longer recovery and more dire consequences.

As the disease progressed, I watched by his bedside as he lost the skills we had joyfully collected over the years: knowing his letters, recognizing faces, holding up his head.

Searching for Hope

When I was at the hospital, I’d update our CaringBridge website at night. After the kids went to bed, it was my time to reflect on the day and my life. I found myself up late. As the parent of a sick child, you have thoughts that are constantly cycling through your head—you can drive yourself crazy thinking about your deepest fears and worries. There were things I could not even say aloud to my husband, but I could write it out on CaringBridge. I could share my deepest, darkest worries with people who embraced me with their concern.

Anyone who takes the time to visit the website and follow Gavin—they feel our reality. I wanted to help people understand. I know that before this happened to me, I wouldn’t have understood. But sharing a brutally honest situation hopefully makes people more compassionate. I share more on CaringBridge than anywhere else.

Finding the Healing

When I had to petition a pharmaceutical company for compassionate use of an experimental drug, when we needed pickups, drop-offs and meals—when I just needed a kind word or an outlet to share the thoughts trapped in my head—I turned to CaringBridge.

In turn, our community turned toward us. They knew what they could do to help. A woman we didn’t even know in New Jersey sent marine-themed gifts to Gavin when she read he wants to be a marine biologist.

CaringBridge also became a communication pathway for Gavin. When we received bad news and Gavin could tell that I was upset, he’d say to me, ‘Mom, why don’t you go write on that site?’ When he started feeling better and had great news to share, he wanted to make sure we shared it right away, too.

I’d write and I could press ‘submit’ and let go of these horrible feelings. Before, I felt hopelessness. I felt so alone. Sharing the news really helped. With each post, it wasn’t just my story, but ours.

Nicole Pierson is the mother of Gavin, a pediatric brain tumor survivor. Nicole is also a mathematics teacher with a Education specialist degree in Brain-based teaching. She speaks nationally about her son’s journey with compassionate use at various pharmaceutical conferences, and is the author of the memoir, Be Strong and Brave. Nicole lives in Ramsey, MN with her husband and three children.

  • farhad

    it was very useful
    thanks for these information

  • Serina Youngberg

    this looks like an incredible site and I can relate.
    my husband has PSC…. his liver is failing …some days are really hard…
    thanks for inspiration