Ellie’s Story

Ellie’s mom, Katie, has always been open and shared Ellie’s story. Here’s a summary of the obstacles Ellie faced:

“Ellie was a typically developing child, meeting all developmental milestones, until diagnosed with Ependymoma in May 2017. (She and her twin brother were technically premature, born at 35 weeks, 6 days). 

Ellie had two brain surgeries in May 2017, causing her to need to get a tracheostomy tube and be on a ventilator full-time. Following the surgery, she also required a g-tube to be fed, as she lost her ability to swallow. She had three rounds of chemotherapy, and several respiratory issues, including recurring pneumonia. The chemotherapy took a big toll on her lungs. Throughout her chemotherapy, she was inpatient at Women’s and Children’s Hospital.  She needed to build strength for radiation, which she did from mid-October 2017 to mid-November 2017. Following her time at St. Louis Children’s Hospital, she was at an inpatient rehab facility, Ranken Jordan, from December 2017 to March 2018. She had a recurrence of Ependymoma in November 2018. She had radiation from the middle of January 2019 to the end of February 2019. In January 2021, her MRI showed two new spots, so in March 2021, Ellie started a clinical trial treatment, involving chemotherapy every six weeks, and following the ketogenic diet. 

Ellie had her first seizure in July 2018. She began taking anti seizure medications in August 2018. She would have several seizure-like events a week. In November 2019, we discovered that her events would also show low blood sugar. We started tracking her blood sugar levels (up to 18 times a day), and discovered she was having hypoglycemic events, which presented like the start of a seizure. We changed her food type and she has remained stable with blood sugar levels. However, this summer, she had several seizures in June and July. Her medical team is unsure of what caused them to start up again. We’ve made some changes to her medications, and they have seemed to subside. 

Ellie sees a neuro-opthamologist and we began to patch her right eye to reduce strain on her left eye in June 2019. She began wearing glasses in January 2020. She is far-sighted. She wears her glasses at all waking times. We are no longer patching, as wearing the glasses has helped even out her eye strength. 

Through several audiology exams, both sedated and awake, Ellie shows high-frequency loss in both ears, more so in her right ear. She was fitted for hearing aids in June 2020, and began wearing them full-time in July 2020. 

Ellie tends to require hospitalization when she has a respiratory virus. She has speech therapy once a week for communication and swallow therapy. She has occupational therapy once a week. She has participated in intensive physical therapy in July 2018, May 2019, July 2020 and July 2022..

In January 2021, a spot showed up on a routine MRI, and because of her history, we started a clinical trial. She gets chemo every six weeks, and is on the ketogenic diet. She has been doing very well with this, and her medical team is happy with her progress. 

Throughout these past five years, Ellie remained so resilient. Her determination was incredible; she wasn’t easily dismayed; everyone who has worked with her has noticed how intrinsically motivated she is. She was absolutely adamant on being independent. She had such a positive attitude and outlook, and didn’t see herself as any different than anyone else. Her cognitive abilities remained so sharp. She participated in dance, gymnastics, and cheering.”

Ellie went to the hospital on Halloween 2022 but the infection she faced was too much for her to fight. She passed away on November 1, 2022.

We Are Creed is fortunate that Ellie gave her approval (with the addition of hearing aids) to the Friends of Ellie logo before she passed. We thank St. Louis Children’s Hospital and MU Women and Children’s Hospital for their support of Ellie and her family over the years and they will receive the first round of donations with Ellie’s logo.