For the first three years of her life, Ellia was “the kid who never got sick.”
“We never worried about her,” says Jenna Yee, Ellia’s mom. “She was always very spunky and funny and had this incredibly dynamic personality. We knew from the start she was a fighter.”
But when Ellia was 3 years old, she developed a fever and became lethargic. Jenna Yee took her to a walk-in clinic where she was prescribed antibiotics for an ear infection. A few days later, Ellia woke up with a rash on her arms and legs, and red dots on her neck.
Jenna Yee brought Ellia to their pediatrician, who sent them to Seattle Children’s Emergency Department for urgent blood testing. Ellia’s dad, Nathan Yee, left work to meet them there.
Nathan Yee and Jenna Yee both have professional experience in cancer research. Jenna Yee was a toxicologist who worked on cancer clinical trials and Nathan Yee was helping develop immunotherapy treatments for adults with leukemia and lymphoma at Juno Therapeutics.
“Hearing Ellia’s symptoms, my first reaction was utter denial,” Nathan Yee says. “I was sure nothing was seriously wrong. But driving to the Emergency Department, I realized the truth was screaming in my face. Ellia had a classic presentation of pediatric leukemia.”
How serious is it?
Despite their background knowledge, neither parent wanted to admit their daughter could have cancer — until they saw her test results. There were malignant cells in Ellia’s blood, likely caused by acute lymphoblastic leukemia (ALL).
Jenna Yee held Ellia and cried silently after hearing the news.
“I felt a rush of panic, but I didn’t want to scare Ellia,” she says. “My thoughts were all over the place. I wondered, ‘Is it that serious? Are we going to lose her?’”
It took a month to determine how serious Ellia’s leukemia was. She started chemotherapy right away while her care team waited to see if her cancer responded to treatment. If it did, her leukemia would be standard risk. If not, it would be high risk and far more difficult to treat.
The best place for Ellia
“Waiting for a prognosis must have been devastating for them,” says Dr. Todd Cooper, Ellia’s oncologist and director of Seattle Children’s High-Risk Leukemia Program. “I told Nathan, ‘If Ellia doesn’t respond to the therapy, this will be the best place for her.’”
Since 2018, the High-Risk Leukemia Program has given families another place to turn for help if their child runs out of treatment options.
Dr. Cooper and Dr. Marie Bleakley, a pediatric bone marrow transplant specialist at Seattle Children’s, created the multidisciplinary program to offer the most up-to-date treatments and access to clinical research trials for patients with high-risk leukemia.
Thankfully, Ellia responded well to the chemotherapy. She was in remission 28 days after her diagnosis.
“When you hear the words, ‘Your daughter is in remission,’ you can finally breathe again,” Nathan Yee said. “It feels like you’ve been inhaling the stress and the pain and the anguish for so long, and suddenly your body returns. It’s exhalation; it’s joy. You go from being a shell of a person to being whole again.”
Ellia still had to undergo two years of treatment that included high-dose steroids and chemotherapy. The steroids made her constantly hungry and irritable. Many medicines made her vomit. She even had a seizure toward the end of her treatment.
Despite all this, the Yees never believed they were going to lose Ellia.
“I always felt very confident in Seattle Children’s,” Jenna Yee said. “From the very beginning, I thought, ‘They have her. She’s getting what she needs.’”
Helping those less fortunate
During Ellia’s treatment, the Yees connected with other families who had a child with leukemia. Some lived far from the hospital and had to travel for treatment. Others struggled financially. Most had known little or nothing about leukemia when their child was diagnosed.
The parents of children with high-risk leukemia were the most heartbreaking.
“These families were afraid their child wasn’t going to survive,” Nathan Yee remembers. “They saw their kid wasting away in front of them. We never had to experience that. We knew how lucky we were and decided if we could do something to help those who weren’t so fortunate, we would.”
While Ellia was still in treatment, the Yee family donated $25,000 to establish the FC Community Campaign in support of Children’s High-Risk Leukemia Program.
“I was floored,” Dr. Cooper said. “I am in awe of what the Yees were able to do while their child was still getting intensive therapy. For them to have the perspective early on to help others was absolutely humbling.”
“Children’s not only provided first-class care for our child, the clinicians showed our whole family compassion.
“They gave us strength when we needed it most. We will never forget the nights when Ellia was struggling and a nurse or Child Life specialist knew how to make things better for her. That made it better for all of us.
“We never doubted Children’s was the right place to be, and we are eternally grateful that Ellia received her care there.”
— Nathan Yee, Ellia’s dad
The difference a gift can make
The Yees have raised $197,000 for the FC Community Campaign to date. One area donations support is the development of new treatments and clinical trials for high-risk leukemia patients.
“There’s a huge gap between what the National Cancer Institute and different companies pay for and the actual cost of bringing new treatment options to these kids,” Dr. Cooper says. “That’s where philanthropy comes in.”
The FC Community Campaign also supports compassionate and emergency use of medicine, chemotherapy or other treatments for children whose leukemias haven’t responded to any other treatments.
“We are currently treating a child — through an emergency use — with a medicine that’s only been used in adults until now,” Dr. Cooper says. “It’s one example of how we leave no stone unturned when it comes to helping our patients.”
Four years later
Ellia is now a healthy, smart, vivacious 7-year-old. She’s been in remission for four years.
“She is a force!” Jenna said. “She has boundless energy and makes me laugh every day. I love that she is so confident and sure of herself. She brings so much joy to our family!”
While Ellia’s treatment ended years ago, the Yees continue fundraising for families who are not as fortunate as they were.
“We can change outcomes for these kids,” Nathan Yee said. “And, we believe giving to Seattle Children’s is the way to do that.”
— Rose Ibarra