Team Scout

Scout's Story:
Scout was born on August 3, 2024 after an uncomplicated pregnancy and delivery. After being home with her siblings (George and Elkie) for just 2 short weeks, a few vomiting episodes brought us to the pediatrician and ultimately Wake Med ED. Scout’s head circumference had increased drastically and the CT scan showed a sizeable mass in her brain. We were immediately transferred to Duke Children's Hospital to be under the care of their pediatric neurosurgery team.

We spent a week in the Duke PICU where Scout underwent three surgeries - a biopsy of the mass, a shunt placement, and a shunt revision. Following our time in the PICU we returned home to care for our sweet girl while anxiously waiting for an official diagnosis. The biopsy sample was bloody and not easy to diagnose (another biopsy procedure was almost needed); however, after three weeks a sample that had been sent to St. Jude Children’s Hospital confirmed that Scout’s tumor was ATRT. 

While awaiting diagnosis, we had appointments with Duke Children's Hematology-Oncology that prepared us for this news and helped us establish hospice care at home. Following the official diagnosis we received second and third opinions from other institutions - MSK and Boston Children’s - regarding treatment options. Everyone’s outlook was the same: because of Scout’s age, surgery and radiation were off the table, and because of the size and location of the tumor, chemo on its own was unlikely to prove effective. After having multiple conversations with the team at Duke, we made the difficult but clear decision to not pursue treatment for Scout and enjoy the time we had left with her.

The rest of our time with Scout was spent at home, where we got to hold her and care for her as much as possible. Transition Kids hopsice organization, along with lots of family and friends, helped us tremendously through that difficult time. Scout quite literally took her last breath while her siblings gave her goodnight hugs at 9 weeks old. She has changed our lives forever and not a day goes by where we don’t think of and miss her. We cling to the hope we have in Jesus - that one day our tears will be wiped away and that our daughter is in a far better place.