I was lost and searching for answers. What I found was a new family.
When my son was diagnosed with a rare brain tumor, I had no idea where to turn
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When my 11-year-old son, Hollis, was diagnosed with a rare brain tumor in October 2019, I entered a world I knew absolutely nothing about.
No one in my family had ever lived through something like this before. None of my friends had lived it. I didn’t have someone in my everyday life I could call and ask, “What happens next?”
So, almost immediately, I went looking for people who understood. I joined a Facebook support group for craniopharyngioma, and I’m still there nearly seven years later.
At first, I was the new mom. I listened to survivors living with the long-term effects of this disease, caregivers raising children whose lives had changed after diagnosis and treatment, and families who had experienced the unimaginable loss of their children but were still willing to share what they had learned. They shared warning signs, things they wished they had known, questions to ask, and experiences that could help another parent keep their child safe. Their lived experience became part of how I learned to protect my child.
Over the years, that community became much more than a place I went for information. I built long-lasting friendships with survivors, parents, and caregivers who understand this journey from different perspectives.
We’ve watched each other’s lives change. We’ve watched children grow, survivors navigate long-term effects, and caregivers adjust as new diagnoses and challenges appeared. We’ve celebrated good scans, birthdays, milestones, and periods of stability while supporting one another through hospitalizations, fear, grief, and incredibly difficult moments. We are always only a message away from supporting one another.
That support didn’t end with Hollis’ craniopharyngioma diagnosis. As his medical journey changed, the community continued to be there through every new chapter.
Building bridges
When Hollis was diagnosed with acquired hypothalamic obesity, I didn’t have to enter that world alone, either. There were survivors and caregivers within the craniopharyngioma community who understood the diagnosis, treatments, side effects, and what it meant to manage another condition connected to this rare brain tumor journey.
That is something you cannot learn from a textbook. I wasn’t just reading about what rare disease could do to a person or a family. I was watching other families live versions of the same life I was living, while they watched our family live ours.
As Hollis’s medical journey became more complex, our community grew with it.
One of the lasting conditions our family manages is secondary adrenal insufficiency. Thanks to my connections in the craniopharyngioma community, I found another community through Adrenal Insufficiency United.
Once again, I found people who understood a part of our lives that can be difficult to explain to someone who hasn’t lived it. We could talk about emergency preparedness, medications, fears, and caring for someone whose health can change quickly without having to explain why those things matter so much. They became family, too.
On April 26, I flew to Minnesota for a three-day medical summit with Adrenal Insufficiency United. It was our family’s first medical summit. As I looked around, I couldn’t help but think about where this journey had started.
In October 2019, I was a scared mom sitting behind a computer screen searching for information about a disease I had barely heard of before it entered my child’s life. Almost seven years later, I was traveling across the country to be surrounded by people who are connected through some of the same experiences our family lives every day.
I went looking for answers and somehow found family. Somewhere along the way, I also stopped being the new mom. I gained years of lived experience of my own. Now, when another family enters this world scared and searching for answers, I can share what this community once shared with me.
And now I’ve gained another family through Bionews, the parent company of this website.
Through my column, “Living Rare with Sarah NYC,” I get to share our family’s experience, including how we got here, how we manage life’s challenges, and what the ripple effects of a rare brain tumor can do to a child and the family surrounding them.
Living rare isn’t only about diagnoses, treatments, and medical appointments. For our family, it has touched siblings, caregiving, friendships, work, advocacy, milestones, setbacks, and how we continue building a life through all of it. Living rare is our family experience.
Maybe someone reading my words today is exactly where I was in October 2019: scared, searching, and wondering if anyone understands. I understand.
Nearly seven years ago, I needed someone else’s lived experience to help me navigate this new world. Today, I get to share mine.
That is one of the most beautiful things I’ve learned about the rare disease community: We keep finding each other.
I’ll see you back here next week.
Note: Rare Obesity News is strictly a news and information website about these disorders. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Obesity News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare obesity disorders.
