What This Journey Has Taught Us—and What We’re Still Learning
Ten years ago today, our son Alex was suddenly diagnosed with a craniopharyngioma brain tumor and underwent emergency brain surgery. I remember thinking he would have surgery, recover, and then we’d go back to normal. I had no idea how much our lives would change.
The truth is, I’ve spent the last decade learning that “normal” would never return and instead, we were immersed in a world of medical complexity, uncertainty, and a level of daily caregiving I never imagined. Somehow, in the midst of this storm, we started the Raymond A. Wood Foundation—what felt like a desperate attempt to make sense of what we were going through, to help others who might follow behind us, and to turn our pain into something purposeful.
“This work doesn’t lift us out of our reality. It holds us deeper in it. There is no clocking out. No off-switch for grief.”
There have been triumphs: meaningful research projects, programs that support families like ours, and advocacy that’s raised awareness for a rare brain tumor many have never heard of. Just yesterday, I had the privilege of sending out two handheld blood analyzers to help others in our same situation. I am proud of all we’ve built together. And still, I want to be honest—this work doesn’t lift us out of our reality. It holds us deeper in it. There is no clocking out. No off-switch for grief.
This past year has brought one of our hardest chapters yet. We were thrown into a diagnostic odyssey as Alex’s health declined with labs showing clear signs of dysfunction, persistent pneumonia, systemic inflammation, weakness, difficulty walking, and repeated bouts of shock that resulted in five airlifts and numerous hospitalizations.
“I never know if the next day will be a regular day, or if we’ll find ourselves in a helicopter headed to CHOP’s pediatric ICU.”
Since late last spring, we’ve watched Alex suffer. He would recover a little, only to get knocked back down. Even as symptoms piled up, we struggled to get anyone to truly connect the dots. There was a pattern, but it felt like no one was willing to name it. We weren’t asking for miracles—we were asking for someone to be curious, to look deeper, to believe that what we were seeing was real.
In late April, we finally received two new diagnoses: properdin deficiency, a rare genetic primary immunodeficiency disorder, and bronchiectasis, a chronic lung condition that requires careful daily management. All of this is in addition to the hypothalamic issues that began after the brain tumor.
There are moments—rare and fleeting—when he feels good. And when he does, he is radiant with joy. It’s only in those moments that I realize how sick he’s truly been because he notices it too. “My hands don’t shake,” he said one day, as if this was something new. Shaking hands, struggles to walk had been his reality for a long time, and he had simply learned to live with it. That kind of resilience breaks my heart and fills it at the same time. And through all of this, Alex somehow bounces back—unfazed, in ways only he can be.
And then there’s the challenge of navigating life. Outside our brain tumor community, there’s often a silence—a gap that can’t quite be bridged. People don’t know what to say or how to hold the weight of our reality. And over time, that gap feels like isolation. Acceptance comes in waves of realizing that this life we lead isn’t one most people will ever fully understand, and we always have to live with that.
Right now, just one week after discharge from the latest and one of the most stressful hospitalizations, we’re navigating these new, complex chronic conditions, mounting uncertainties, and the ache of watching others do well while Alex continues to struggle. I never know if the next day will be a regular day, or if we’ll find ourselves in a helicopter headed to CHOP’s pediatric ICU. That’s a hard truth I carry, even as I cheer for every child diagnosed with a craniopharyngioma who is thriving.
“We don’t mark ten years with ease. We mark it with reverence—for everything we’ve endured, everything we’ve built, everything we carry in silence, and everything we still hope for.”
And yet, here we are ten years in. Ten years of surviving, adapting, hoping, grieving, and fighting. Ten years of the most extraordinary boy teaching us what it means to keep going. We don’t mark ten years with ease. We mark it with reverence for everything we’ve endured, everything we’ve built, everything we carry in silence, and everything we still hope for.
To those in this community who have carried us through—thank you. Your encouragement, messages, shared stories, and solidarity have lifted us more than you know. And to the families walking this path: I see you. I’m with you. And we will keep up the fight to make this better.
Please consider making a gift in honor of Alex for Brain Tumor Awareness Month.
Donate Here