Emily’s Story

Emily, the youngest of four siblings, was sassy, funny, strong-willed, and fierce. She excelled in everything she tried with incredible determination, passion, and grit. She loved all living creatures and became an equestrian to nurture her love for animals in every way possible; any day spent at the barn was the best day ever. She later discovered acting, performing in several musicals at her middle school, and during the summer before high school, she joined the local Teen Troupe. Following in her brother’s footsteps, Emily took up wrestling when she entered high school. Swimming also became part of the picture to help build her endurance for wrestling.

In her second year of wrestling, Emily began to experience physical symptoms: she started to wobble when she walked, her eyes turned sideways, she fell often, and she lost her peripheral vision. Initially, she was diagnosed with a concussion, which seemed plausible given her involvement in wrestling.

On February 20, 2019, three weeks after the concussion diagnosis, Emily went to Seattle Children's Hospital in Bellevue, WA, for an MRI. Despite resting, her symptoms were worsening. The initial MRI was for her brain, but after it was completed, the technician came out and said her neurologist wanted to scan her spine as well. This seemed like an odd request for a concussion, but once the spine scan was finished, we were not sent home to wait for the results. Instead, we were immediately directed to the main campus of Seattle Children’s Hospital.

When we checked in, we were taken to the HemOnc floor, not back to Neurology as we had expected. In the smallest room on the floor, Emily, Mom, Dad, and about six other people—Neurologists, a Neuro-Oncologist, Social Workers, and Nurses—gathered around us. They told our sweet girl that she had terminal brain cancer, which they were certain was Diffuse Intrinsic Pontine Glioma (DIPG). Cancer cells had intertwined with normal cells, making it inoperable. It was located on the pons, a critical part of the brainstem. Emily asked her new doctor, Neuro-Oncologist Dr. Nicholas Vitanza, if she was going to die. When she was told there was no cure, her response was simply, “God’s got this.”

Two days later, Emily underwent a brain biopsy, which led to partial paralysis on her right side but provided the crucial details we needed to make treatment decisions. The following week, she began radiation therapy and started a chemotherapy regimen involving three different drugs. The treatment sustained her temporarily. Emily was able to finish high school and graduate, often going to school in the morning and undergoing radiation or chemotherapy in the afternoon. By this time, she had become an invincible, incredibly driven young woman, and her faith never wavered.

About a year into treatment, Emily began bringing gifts to her appointments to give to the check-in desk staff to be anonymously gifted to other children. The first time, she asked the staff to give it to the tenth child who checked in behind her. Another time, it was for a child with a blood disorder, not cancer. Each time, it was with love and empathy for the kids around her.

In the fall of 2021, Emily was approved for a newly approved clinical trial called Brain Child 03 at Seattle Children’s Hospital. She became the first patient in the DIPG arm of the trial, and the first in the world to undergo intracranial CAR T-cell therapy. Emily would go on to complete 10 rounds of treatment before it was determined that it wasn’t working for her, and she had to leave the trial. Her bravery in being the first patient in such a seemingly dangerous procedure spoke volumes about her character, and many children have benefitted from her courage.

Emily endured another round of radiation and tried several other chemotherapy drugs that ultimately did not help.

On February 28, 2022, after an incredible three-year battle with a tumor that should have taken her within nine months, Emily went home to heaven, where she is now fully healed.

The With Love From Em Foundation was created to continue Emily’s legacy of giving, honoring her kindness, bravery, and sacrifice.