February 27, 2020 – December 25, 2024
Diagnosed September 27, 2023
Written by Olivia’s Family
Our Olivia was amazingly beautiful, thoughtful. loving, silly and adventurous. In September of 2023, just a week after starting a new preschool, her teachers communicated concerns about weakness in Olivia’s left extremities and some slight drooling. Two days later, her pediatrician ordered a precautionary CT scan and on September 21st the CT scan discovered a mass in her brain. She had an MRI the next day. The next week was filled with misinformation and finally on September 27th we received the unbelievable DIPG diagnosis. It was fatal and she had about a year to live. We were devastated. Our world was turned upside down within a matter of days. She was three and a half years old.
Olivia battled for fifteen months. Our girl was a fierce fighter. She underwent forty rounds of radiation (thirty sedated rounds in October/November 2023 and ten unsedated rounds in August/September 2024) and participated in a clinical trial at Seattle Children’s Hospital where she received nine Immunotherapy treatments over five months and participated in the ONC201 clinical trial through Children’s Hospital Orange County then through a doctor in Germany. She completed six brain and spine MRIs (two of which were unsedated), plus countless IVs and blood draws. There were countless tears and protests but she handled the treatments and pokes with maturity and bravery beyond her years.
After her diagnosis, we picked up the pieces of our shattered hearts and started living life to the absolute fullest. As a family, we made beautiful memories through her fifteen month journey. We took countless local outings and day trips including weekly trips to Disneyland, we went to Aulani, Disney World, the Rose Parade, multiple zoos and we explored Seattle on every visit. We also took her to lots and lots of restaurants, she loved to eat!
In March of 2024, Olivia lost her ability to speak and to walk but was quick to adapt. In August of 2024, we got official images that showed the tumor was growing. She completed a second round of radiation. She was no longer able to sit up on her own but she/we adapted. We continued with our many weekly outings and created amazing experiences for our girl. We never lost hope for our girl. Despite new challenges that would surface she continued to make small strides. She never stopped challenging herself and trying to regain strength and abilities.
After a beautiful Christmas Eve at home, our baby girl passed away peacefully on Christmas afternoon, two months shy of her fifth birthday. She will forever be our Christmas angel.
Olivia leaves behind her Mom and Dad, two sisters (ages 29 and 3) and her little brother (age 1). She loved to guide and nurture her young siblings. She was the best big sister to Elina and Julian.
We love her and miss her more than words can describe. We miss you, chiquita.
