Ella’s Story: Saved by Bone Marrow Transplant from a Generous Stranger
In September 2019, Ella, then 13 months old, experienced repeat ear infections and seemed lethargic to her parents Christina and Joe. When she began looking pale, Christina took her to their pediatrician.
“We got the phone call in the middle of the night that no parent wants to get,” Christina said.
Ella’s lab work showed an abnormally elevated count of white blood cells and very low platelet count—a sign of leukemia. The family rushed her to Lurie Children’s Emergency Department, where she underwent further testing. Once admitted to the Center for Cancer and Blood Disorders, doctors confirmed a diagnosis of a rare, aggressive form of leukemia known as acute myeloid leukemia (AML) with RAM immunophenotype.
“The doctors were being as compassionate but direct as possible. It was devastating,” Christina said. “The words I remember were ‘difficult to treat, very rare, very poor prognosis.’”
Right away, Ella’s care team began consulting with clinicians all around the country to identify treatment options with the best outcomes. After several rounds of chemotherapy, Dr. Sonali Chaudhury and Ella’s family decided on a highly personalized stem cell transplant known as hematopoietic cell transplantation (HCT) to maximize her chances of survival with the least possible toxicity.
Lurie Children’s Pediatric Stem Cell Transplant Program is one of the nation’s largest pediatric programs of its kind, having performed more than 1,000 stem cell transplants since 1992. Through collaborative multidisciplinary research, the program is committed to advancing the field of HCT, providing access to novel treatment strategies, developing definitive cures and improving meaningful outcomes through compassionate, inclusive, individualized approaches.
At Lurie Children’s, patients like Ella who are referred for transplant are initially contacted by Ellen Byrnes, transplant coordinator, who provides support and guides the family through the complex process. Each week, a multidisciplinary team reviews the patient’s clinical course and HCT plan.
“When we sat down with Dr. Chaudhury and Ellen to talk about the stem cell transplant process, it was the first time I felt a glimmer of hope,” Christina remembered. “We called eight different transplant centers because we wanted to make the most informed decision. In the end, we felt most confident with our team at Lurie Children’s.”
Finding a Match
Ready to proceed with a personalized treatment plan, Ella’s team began the search for a stem cell donor. “Ella’s siblings weren’t matches for her, but Ellen came back right away and said there were 10 more donors on the list,” Christina said. “She was confident we would find a good one.”
In Huntington, West Virginia, there was a good match. Cody, a student at Marshall University, happened upon a bone marrow drive while walking to class one afternoon. His friend encouraged him to join the registry, and he did. When he learned his stem cells were a match for a child in need, he moved forward with the process and donated his cells.
In February 2020, Ella received an intensive regimen of chemotherapy leading up to the stem cell transplant. On February 18, she underwent the transplant – which was ultimately successful, despite difficult setbacks. Her road to recovery was complicated by severe infections in her lungs and intestines.
“I realize now just how critical she was. It’s impossible to describe how thankful we are for the doctors, nurses and other staff who helped Ella,” Christina said. “It was reassuring to have that level of expertise in-house to take care of her.”
“We appreciated the fact that Ella's team treated us like a part of the team throughout the treatment,” Christina said. “Every morning, we participated in rounds, had endless questions, and voiced our concerns frequently. It was incredible to see a team of experts in so many fields around Ella’s room each day. All the doctors and nurses took the time to answer our questions, to hear and respond to our concerns, and always provided comprehensive information.”
Three months post-transplant, Ella left Lurie Children’s with a bubble parade from her caregivers, and returned home with her parents and older brother and sister. The following winter, she and her family heard from her donor, Cody.
“He sent us a beautiful letter, very genuine and heartfelt,” Christina remembered. “He sounded like such a kind and good person, and it was clear he really cared about Ella. He said his community had been praying for her and she felt like part of his family. He’d gone to great lengths to research AML and to understand what she’d gone through.”
In spring 2022, just after the two-year anniversary of her transplant, Ella’s and Cody’s families decided to meet in person.
“It was nerve-wracking, because we have so much respect for them,” Christina said. “A few tears were shed by all of us, but it felt easy and natural, just like it is with family. It was that way for Ella, too. She’s always a little shy because she has been so sheltered due to the pandemic, but within 10 minutes, she sat on Cody’s lap and played catch with him.” Ella still carries a picture of Cody around the house and constantly asks to Facetime with “my friend” Cody.
In July of this year, Ella and her sister Lily will be flower girls in Cody’s wedding.
“Watching them walk down the aisle at such an immensely special wedding will be one of the best moments of our lives,” Christina said.
Ella has now been in remission for three years, as is the longest known survivor of her AML subtype.
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