Meet Ella: 2022 Family Advocacy Day Champion

Ella is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Ella and her family will discuss her health journey, Children’s Hospital Los Angeles’ role in providing her with necessary health care services, and why the public and our elected officials must invest in the future of patients like Ella.

When Ella was two years old she was diagnosed with a stage 4, high-risk neuroblastoma. Neuroblastoma is a solid cancer of the nerve tissue of the sympathetic nervous system and stage 4 meant that Ella’s cancer had spread to other parts of her body.

“In June 2020, we discovered a lump on the side of Ella’s abdomen,” says Megan, Ella’s mother. “We went to another hospital but she was misdiagnosed, and as a result had her right kidney removed along with the tumor in her abdomen.”

The misdiagnosis led the family to seek care at Children’s Hospital Los Angeles.

“We uprooted our lives and moved to a place that specialized in her disease. It took an emotional toll on our family, especially since I had just given birth to our son three weeks prior to Ella’s diagnosis,” says Megan.

Ella started chemotherapy and, after her fifth round, they found that the cancer had progressed to her skull. 

“We enrolled in a trial that included difluoromethylornithine (DFMO) an ODC inhibitor, immunotherapy, and more chemo,” says Megan.  “After two rounds of this intense treatment, her condition began to improve.” 

Ella remained in this trial for a year and received 12 rounds of radiation. She is currently completing the maintenance phase of the protocol and will receive a scan again in June.

Today, at almost 4 years old, Ella has no evidence of disease and will finish treatment in July. She is strong, active, and by all accounts healthy. 

“We are grateful to Children’s Hospital Los Angeles,” says Megan. “They make us feel like family, encourage parent participation, and are truly experts who want to help my child succeed.”

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published this page in Blog 2022-06-06 13:32:42 -0400