Glenview Toddler Needs Expensive Treatment For Rare Leukemia

GLENVIEW, IL — In October 2019, Christina Siders took her youngest daughter, Ella, to the doctor for an ear infection. Though the Glenview mother had done this frequently in the past, this time she was also concerned her little girl might be anemic due to a pale complexion, so she asked for special blood work to be done.

"The rest of the afternoon and evening was like any other in a family of five with little ones (Christina and her husband, Joe, also have a 4-year-old and 7-year-old) — chaotic, exhausting, humorous," Siders said. "We woke up the next morning to five missed calls from her pediatrician reporting on her blood work results."

Project Stella: Accelerating Research At Fred Hutchinson Cancer Research Center

With an off-the-chart white blood cell count and no ability to clot blood, the family soon learned that Ella, who is now 2, had leukemia and she needed to be rushed to a hospital for a bone marrow biopsy and central line placement.

"I vividly remember a surgeon taking us aside and saying, 'leukemia is one of the most treatable forms of cancer there is. Regardless of what we discover in her marrow, we are looking to cure,'” Siders said.

Unfortunately, that narrative quickly changed only 24 hours later as a team of doctors came into Ella's hospital room and told the family that the test results revealed she has AML M7 — one of the deadliest forms of childhood cancer. Ella also had RAM phenotype, with CBF-GLIS fusion, which according to Christina Siders, is only found in around 20-30 children worldwide.

"Those first few days especially, there were layers upon layers of disbelief and devastation; layer upon layer of pain," Christina Siders said.

Following what Christina describes as an "incredibly brutal" treatment protocol for high-risk acute myeloid leukemia, Ella was hospitalized for eight months with the family only spending 14 days of that period at home. Christina Siders said they missed every major holiday at home with the other children and went from planning costumes for Halloween to watching their daughter receive her first chemotherapy infusion on that holiday.

"Ella was struck with a life-threatening complication almost every month of her treatment. Bacterial infections, fungal pneumonia, pulled central lines, lung biopsies, oxygen," Christina Siders said. "It was never smooth, never according to plan. Ella lost the ability to eat, to play, to crawl. Layer upon layer of damage, due to the treatment, not the cancer."

After completely wiping out her bone marrow, red blood cells, white blood cells, platelets and her entire immune system, Ella received a stem cell transplant from an anonymous donor on Feb. 18, 2020. Her family recently celebrated the one-year anniversary of her "rebirthday" a few weeks ago, an event Christina Siders said there was a 90 percent chance Ella wouldn't make it to.

Throughout the first 28 days following the transplant, Ella was doing so well that doctors said there was a chance she could be discharged from the hospital. Unfortunately, that wasn't the case and on Day 29, she suffered a serious, life-threatening complication. While her life-saving cells were attacking on the inside, Ella spent another 73 days in the hospital with endless procedures before the family finally got the news they had been waiting so long for — Ella could go home.

"She's beaten so many odds already, but we are not naive to the long and risky road ahead. She is now suffering from numerous side effects and her GI tract and lungs will never recover," Christina Siders said. "Ella will deal with these and other chronic health conditions for the rest of her life."

The biggest fear now for Ella and her family is relapse. Though the treatment protocol was incredibly aggressive, Christina Siders said her daughter is still at an incredibly high risk for relapse, going so far as to say it’s almost a certainty, probably within the next year.

"As a result, she is closely monitored and we are in a constant state of fear. Every bruise, every bad mood, every cough, every extra long nap. They all spark paralyzing fear," Christina Siders said.

What helps the family sleep at night, according to Christina, is the research happening as part of Project Stella at the Fred Hutchinson Cancer Research Center in Seattle. She said the family has been working closely with Dr. Soheil Meshinchi, a world-renowned pediatric AML expert at the center. They are trying to raise much-needed funds for precision medicine research as Meshinchi runs the only lab in the country that is developing cures for children facing the devastating diagnosis of high-risk AM, according to Christina Siders.

"His research is tailored to pediatric cancers, aimed specifically at patients under 5 years old. Dr. Meshinchi’s research is focused on finding a treatment protocol that targets the cancer and does not bring the irreversible side effects," Christina Siders said. "These therapies significantly reduce the risk of relapse so that kids don’t have to spend years of their short lives fighting a losing battle."

Project Stella is named for Stella Novotny, a vibrant little girl who died from the same form of AML as Ella in November 2017, just weeks after her fourth birthday, according to Christina Siders, who added "her parents’ bravery and strength are responsible for this critical foundation."

Christina Siders said the family has set an urgent goal of raising $2 million for Project Stella. She said they have already raised around $850,000 of the goal. Targeted immunotherapies and CAR-T technology can be expensive, but the family is hopeful they could save Ella’s life and the lives of other young children who are given little hope for survival.

"We are urgent to push this past the finish line," said Christina Siders, who helped make a video for Project Stella. "We are so close, and we have so little time."

To find out more about Project Stella and to make a donation, visit here.

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