The Storm and the Snowflake

By: Jenn Stein

September 2025

On May 23, 2010, my son Zachary was just two and a half years old when Dr. Jay Storm at CHOP saved his life. An anaplastic ependymoma, words no parent should ever hear had turned our world upside down. Surgery and radiation gave us the chance to breathe again.

But we didn’t just take tomorrow we gave something back. Zachary’s tumor was donated into Dr. Storm’s research program. That small piece of tissue became part of a national effort that proved not all ependymomas are the same. From children like Zach, doctors learned to see subgroups, design sharper treatments, and give families more hope.

Seven months later, on December 21, 2010 Zach’s third birthday and the first day of winter we hosted a White-Out in Dr. Storm’s honor. We made it a snowstorm, because every snowflake is unique and different, just like every child fighting for survival.

That night, it became clear: survival isn’t black or white. It’s grey.

And Grey Matters was born.

From the Beginning

On May 31, 2010 at 3:17 AM, I wrote my very first CarePage update. It was raw, unfiltered, and lit only by the hope that somehow we’d get through.

Here’s what I wrote that night:

“Hopefully we will have a good night. Tomorrow I am scheduled for another CT scan. If all goes well through the night, I have my EVD clamped. I may be able to have it removed. This tube will tell my doctor if I am able to absorb my brain fluid or if I need another surgery to help. My hopes are I do well and no more surgery! Our fingers are crossed and my mom’s toes too!

On Tuesday we get our pathology report and have our family meeting to see what our next step is. But for today we are just focused on the moment.

Thank you everyone for everything — a special thanks to my team of angels who helped my mom and dad to be here with me during this frightening time. Your good deeds are so appreciated, you’ll never know! Karma? It really does come back around! Without all of your support I wouldn’t have been able to hold it together. When we needed a rally of support you all came through. Keep them coming and we surely will get through this journey!”

That was the very first time I wrote publicly — the seed that grew into CarePages, Grey Matters, and everything you’re reading here today.

📎 [Download the original CarePage post (PDF)]