The first thing to know about childhood cancer is that there is no guide. There is no rulebook. No road map. No right way to do things. You simply exist from one minute to the next, doing everything you can to keep your head above water, to keep from slipping into total darkness. You do your best to survive, to show up for your child, to keep them from slipping into total darkness, too. 

There is so, so much darkness. 

The good news is, amidst all of the unbelievable darkness, there are glimmers of light. Tiny, little slivers of hope. Moments of buoyancy that carry you from one minute to the next. Brief opportunities to catch your breath. Sometimes the light is an amazing medical team. Sometimes the light is a handwritten note. Sometimes the light is a meal, or a friend that shows up without being asked, or a baby sister that comes along at just the right time. 

Katie’s story is filled with darkness. Darkness, and grief, and sadness, and anger, and tears, and yes, even death. But Katie’s story is also filled with light. Beautiful, buoyant, breathtaking light. 

Katie was initially diagnosed with high risk T-cell Acute Lymphoblastic Leukemia on January 24 2015, at the age of 6 in Virginia. Katie was 11 months into a 28 month clinical trial when she relapsed with leukemic tumors on both of her optic nerves on December 28th, 2015. She received a bone marrow transplant from her baby sister on February 3, 2016. After years of procedures, appointments, testing, and more, Katie was diagnosed with an infiltrating High Grade Glioma (a terminal brain tumor) in June 2022 at the age of 14. Amanda, Katie’s mom, instructed all of us to, "do yourself a favor and don't google it." After an open craniotomy in Richmond and 6 weeks of radiation in Washington, D.C., Katie made the decision to enroll in a Phase I clinical trial at Seattle Children's Hospital. She knew that the treatment would not be curative but that it might benefit the kids that came after her.

We had Katie for almost a year after we found the brain tumor. That year was filled with love, laughter, anticipatory grief, 3 brain surgeries, two adopted cats, seizures, two tattoos, The Eras Tour, and SOOOO much sushi. Katie died in her mom's arms, holding hands with her dad, at 1:42 am on May 18, 2024 at Children's Hospital of Richmond at VCU, with her favorite Taylor Swift song playing. (Enchanted in case you were curious)

There is so much more to Katie’s story, but the short version is - that’s why we’re here. Thank you for being here with us.