Emily’s Story

Emily the youngest of four siblings, was sassy, funny, strong-willed, and fierce; she excelled in anything she tried with incredible determination, passion, and grit. She loved all living creatures and became an equestrian to feed her love for caring for animals in every way possible; any day at the barn was the best day ever. She later began acting at her middle school performing in several musicals and the summer before high school in the local Teen Troupe. Following in her brother’s footsteps she moved on to wrestling when she went to high school. Swimming also came into the picture to build endurance for her wrestling matches. In her second year of wrestling, Emily began to physically wobble when she walked, her eyes turned sideways, she fell often and she lost her peripheral vision; she was initially diagnosed with a concussion which made sense simply because she was a wrestler.

On February 20, 2019, three weeks after the diagnosis of a concussion, Emily went to Seattle Children’s Hospital in Bellevue, WA for an MRI. She wasn’t getting better with much rest; her symptoms were worsening. The initial MRI was for just her brain however once the scan was done, the technician came out and said her Neurologist wanted to scan her spine as well. This seemed an odd request for a concussion and once the spine scan was done, we weren’t sent home to wait for results, we were sent immediately to the Seattle Children’s Hospital main campus.

Once checked in, we landed on the HemOnc floor, not back in Neurology as we had expected. In the tiniest room on the floor Emily, Mom, Dad, and around six other people (Neurologist, Neuro-Oncologist, Social Workers, and Nurses) surrounded us and told our sweet girl she had terminal brain cancer which they were certain was Diffuse Intrinsic Pontine Glioma (DIPG). Cancer cells intertwined with normal cells, inoperable because it’s not a solid tumor and it was on her pons, a part of the brain stem. Emily asked her new doctor and neuro-oncologist, Nicholas Vitanza, if she was going to die, and when she was told there was no cure, her response simply was, “God’s got this”.

Two days later Emily had a brain biopsy which led to partial paralysis of her right side but it gave us the details we needed to decide what treatment we would pursue. The following week she started radiation and then went on to take a course of chemotherapy involving three different drugs. It sustained her temporarily. She was able to finish high school and graduate; often going to school in the morning and radiation or chemo in the afternoon. She was an invincible, incredibly driven young woman by this time; along the way, her faith never wavered. About a year into treatment Emily would bring gifts to her appointments and give them to her friend at the check-in desk to be gifted anonymously; the first time she asked her to give it to the tenth child who checked in behind her, once it was for someone who had a blood disorder and not cancer. Each time was different. Every 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 to participate; the first patient in the world to have intracranial Car T cell therapy. She would go on to have 10 rounds before it was determined it wasn’t working for her and she had to leave the trial. Her bravery in being the first in such a seemingly dangerous procedure spoke volumes to her character and many kids are on this.

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

On February 28, 2022, after an incredible three-year battle with a tumor that should have taken her within 9 months, Emily went home to heaven where she is fully healed.

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