We all need a Wilson.

I want to share my experience of having a child with an extremely rare tumor for anyone curious about what it’s like. At times, it feels as if we’re on a deserted island, scanning the horizon for any sign of help—a boat, a plane—so we can wave frantically, hoping someone will notice us. When no one does, we’re left to figure out survival skills by finding ways to use research from other cancers like scraps of food or rainwater to stay alive.

It’s a lonely and maddening existence, but also an understandable one. It’s human nature to focus on what directly affects us, and most people have never even heard of chordoma; we certainly hadn’t before last spring. Not having enough research to be able to help us predict the outcome for Victoria is what’s most isolating and discouraging.

I have to keep my anger in check when I think about how unevenly funding is distributed across different cancers, because my frustration stems from the sheer improbability of Victoria’s diagnosis: she IS one of the 1 in ten million pediatric patients to get chordoma. How do you even process that? It’s like her being struck by lightning every single year of her life.

The rarity of a certain cancer or disease shouldn’t stop people from asking questions or wanting to learn about it. When someone takes an interest in how Victoria was diagnosed, her initial symptoms, or her treatment options, it makes us feel less alone. God works in miraculous ways, often connecting us in ways we never expect. You could hear someone’s story and remember a college friend who studied that exact field or know a holistic doctor who could suggest alternative therapies when traditional treatments fall short. I truly believe that we are always where we’re supposed to be at any given moment for a reason. Have you ever felt compelled to say or do something you couldn’t explain?

One day, I received a letter from a stranger who told me she follows our story and thinks about us daily. I wrote back to thank her for taking time out of her day to write me, and that led to us becoming pen pals. Her name is Julie, and her letters bring me so much joy! We are SO similar and I laugh so hard at her stories. Despite living in the same town and her daughter attending the same school as my two daughters, our paths have never crossed because we’re in different phases of life and parenting. I will, however, be tracking her down the minute we’re home from Boston to go get drinks and laugh like crazy with her in person.

Even on our metaphorical island of limited funding and research, human connection is always within reach. It’s a smile, a note, or a simple acknowledgment that reminds us we’re never truly alone. Think about Tom Hanks in Castaway. What would he have done without Wilson? Wilson was the reason he survived. He couldn’t let Wilson down. He shared his feelings of joy and sorrow with Wilson. Believing that we’re never alone, even when we are, gives us superpowers that boost our spirits and keep us FIGHTING. Seeing us and hearing us is all we need to stay afloat until it’s time for the tides to turn in our favor.

(Oh- and here’s a bit of serendipity. Guess what Julie’s last name is? Yep…Wilson.)