Eleanor’s Legacy
“Eleanor, affectionately known as Ellie, was born on August 17, 2021, and in her four years of life, touched countless hearts with her strength, kindness, and beautiful sassy spirit. Ellie was a bright light whose smile could warm any room. Known for her beautiful red hair, gentle heart, caring nature, and adventurous spirit, she brought joy to everyone fortunate enough to know her.
Ellie’s journey began with random headaches and vomiting. After visiting the pediatrician multiple times over a month and a half, she had a CT which discovered a mass in her brain. This was June 13th, and that day we were sent to the University of Iowa Stead Family Children’s Hospital. Upon getting to the ED we were met by Neurology and after reviewing scans they stated the headaches and vomiting was caused by a fluid build up due to the location of the mass. They would need to surgically place a drain in Ellie’s brain to reduce the fluid build up. She underwent surgery that night and was admitted to the PICU.
At this time we still did not know what the mass was in her brain, but the hospital gathered a multidisciplinary team to review and come up with a plan of action. The first piece of the plan was to do extensive imaging and testing. During this it was discovered that Ellie also had two tumors on her spine, suggesting whatever the mass was in her brain was cancerous and spreading. The next course of action was hopefully a full tumor resection of the mass in her brain with a biopsy to follow to know exactly what it was.
June 18th Ellie underwent a 13 hour surgery to remove the tumor. Unfortunately, they could not remove it all but did get most. From there we waited for biopsy results. It was discovered that her tumor was a Pineoblastoma a rare, fast-growing, and aggressive Grade 4 brain tumor that starts in the pineal gland near the center of the brain. Her final PICU surgery was the placement of a VP shunt to ensure her body continued to move her spinal fluid correctly and it didn’t build up again.
Overall, during this initial hospital stay Ellie spent 18 days in the PICU, and it was during this stay our treatment plan was created. Ellie’s cancer is rare and does not have its own treatment protocol, so we had follow a protocol for something similar. Which entailed after the surgeries 6 weeks of radiation at Mayo Clinic, 5 hours from home, and 6 cycles of inpatient chemotherapy.
During radiation and chemotherapy Ellie experienced much of the side effects other children would; nausea, vomiting, weakness, loss of appetite, hearing loss, hair loss, etc. But in April of 2026 she got to ring the bell, having completed her treatment. In May of 2026 we were given the amazing news that after end of treatment imaging and testing Ellie was in remission. We were all overjoyed.
Then in June of 2026 we started to notice some new concerning symptoms with Ellie and took her in for imaging and testing. It was then discovered that the cancer had returned and returned to new areas of her brain and spine. She was immediately admitted and we started a new treatment protocol. Unfortunately, the cancer continued to spread despite treatment and we made the loving decision to stop treatment and she passed on July 6th, 2026.
Over 14 months, Ellie endured surgeries, radiation, chemotherapy, countless hospital stays, tests, procedures, and treatments with a bravery that inspired everyone who met her. While her journey was marked by unimaginable challenges, it was also filled with love, hope, laughter, and the unwavering support of family, friends, and caregivers. In her short time on earth, Ellie taught those around her the meaning of unconditional love, courage, perseverance, and joy. Her impact reached far beyond her years, and the memories she created will live on in the hearts of all who knew and loved her.”
Our Donation Story
While Ellie passed on July 6th, we wanted her legacy to live on. Her cancer is so rare, and with rarity there is a limit to research. Without research how do we improve outcomes or hopefully find a cure? We knew even though our little girl lost her battle there were others out there that hopefully Ellie’s donation could make a difference for.
Ellie taught those around her the meaning of unconditional love, courage, perseverance, and joy. Her impact reached far beyond her years, and the memories she created will live on in the hearts of all who knew and loved her.”