Glenview girl with leukemia receives lifesaving stem cell transplant

A snap decision made 600 miles away has given little Ella Siders of Glenview a new lease on life.

At 15 months old, Ella already was a veteran of doctors' visits for supposed colds and ear infections. One day in October 2019, though, Joe and Christina Siders' youngest child was pale, lethargic. This time, they requested a blood panel done on her.

The next morning the Siders' pediatrician wore out their cellphones with calls and text messages. Within a day, Ella would be diagnosed with acute myeloid leukemia (AML). A stem cell transplant was her best chance to survive.

The Siders' other two children, William and Lily, were tested for a possible match. Neither was suitable for their little sister, by then headed into two rounds of chemotherapy treatments with their attendant infections and side effects.

Meanwhile, in a classroom at Marshall University in Huntington, West Virginia, exercise science student Cody Fuller received a text message on his cellphone.

Eight months prior, some of Fuller's nursing school pals had coaxed him into stopping by a stand on campus on his way to class - a donor drive for another young girl who had AML. Fuller swabbed the inside of his cheek, entered his information into an iPad and submitted it all to DKMS, an international nonprofit stem cell donor center. It took 10 minutes.

"I knew the chances (of a match) are literally like one in a million," Fuller said. "I just went on. I honestly didn't think nothing else about it - until I got that text."

The buzzing message said Cody was a match for a 1-year-old girl with leukemia.

On Feb. 18, 2020, he donated blood stem cells to Ella Siders.

"We feel very strongly that he was not only a good match, but he was the right match for Ella," said Christina Siders, who joined the DKMS registry herself about a decade ago, ordering a kit through the mail.

The register showed several decent matches for Ella - DKMS has more than 10.7 million people in its registry - but Fuller was the best.

"That's why just having as many people in the donor pool as possible is so important, because you can then give the health care providers more choices, more options to try," Joe Siders said.

By no means is Ella out of the woods. But the transplant brought the Siders' baby back.

"Since coming home from the hospital, she has taken on the role of boss in the family. She's half of William's size, really small for her age, yet she just rules her roost," Christina said.

"I mean, she'll tell them to focus on their food at the dinner table, she'll tell everyone it's time for bed and to calm down, she'll yell from her room to be quiet and to settle in. She's just a boss."

Ella, who turns 3 on Aug. 7, is making up for lost time.

"Really assertive, incredibly talkative," Joe Siders said.

"She was hooked up to tubes for eight to nine months at a pretty critical development stage for her. She didn't walk until much later than you would expect with another kid. It's just amazing how resilient kids can be.

"So even though her physical growth and development was a little bit delayed, she makes up for it with her speech ... When you talk with her she'll speak in, like, logical, argumentative sentences that you wouldn't expect from another 2-year-old that just kind of shouts demands. Ella shouts demands, but then explains why she's right or why you should do what she's asking you to do at any particular time."

The Siders, who live near Swenson Park in Glenview, are still in the early stages of a 5-year period that will determine whether or not the transplant has fully taken hold and ridded Ella's body of cancer-making cells.

Her specific type of acute myeloid leukemia, a rare form called AML with RAM immunophenotype, has a high risk of relapse, Christina said.

For about four months after the transplant, Christina said, Ella had graft-versus-host issues that caused pulmonary damage, which makes it hard for her to breathe when she's active, and also affected her gut.

She gets monthly blood work to check cell levels, CT scans to gauge her lung recovery, and every 4 to 6 months must provide a bone marrow sample to see if the leukemia has returned.

Ella gets stuck monthly with a central venous catheter, and gets checked for chimerism, the percentage of donor cells compared with her own cells. The goal is more of Cody's healthy cells.

Though Christina said the nurses at Lurie Children's Hospital are "absolutely fantastic" with their candy, snacks and humor, Ella cries for nearly the whole drive to the hospital.

"It's hard for everyone, and it's scary. We are always waiting," Christina said.

"Joe was saying we have that 5-year window, but I don't think people always recognize that when your child has a leukemia diagnosis, it's every day you're just kind of paralyzed with fear," she said.

"It's every bruise, it's ever tired spell, it's every cough, any weird rash - anything kind of triggers that fear of relapse and the leukemia coming back. It's, unfortunately, a reality for a lot of kids, especially kids like Ella who are fighting AML. Many kids relapse before even 100 days after transplant and are right back to where they started, and with fewer options."

Since he got that text from DKMS, Fuller had always wondered about the little girl with whom he shared blood. The families have since exchanged text messages, sent photos back and forth and, on May 21, for the first time, he and his family met the Siders over Zoom.

"Not just that time, but every time I see Ella, she always has a smile on her," said Fuller, 22. "She's always full of energy. She's a beautiful girl, and they're a beautiful family. I was looking so forward to the meeting ever since I found out I was a match."

Though he already was on track for his bachelor's degree from Marshall, Fuller said he'd been uncertain about his career path. This experience, which he called the best of his young life, showed him the way. He'll start July 29 at the West Virginia School of Osteopathic Medicine.

"It was almost like God laid his hand on me and showed me how it feels to truly help somebody and make an impact on their lives," Fuller said. "When that happened, there was a certain career that came to my mind, and it was to be a doctor."

The Siders continue to work with DKMS and Project Stella, of the Fred Hutchinson Cancer Research Center in Seattle, so someday transplants are more a guarantee of survival rather than, as Christina Siders said, "just a chance."

Right now it's a chance they'll gladly accept for their Ella.

"You take advantage of this opportunity to sign up for the registry and, in all likelihood, you'll never get called. But the fact that you're out there on the registry and available to somebody like Ella to save their life, it's such a huge deal," Joe Siders said.

"That's one thing we want to get the message out about, is it's so easy to get yourself on the registry. What Cody went through is superhuman, but the act of getting yourself on the registry so you're out there and available to help save someone's life is pretty straightforward and pretty easy. And it's just a matter of kind of doing it."

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HOW TO HELP

These are just a few of the organizations offering information about becoming a bone marrow, stem cell and organ and tissue donor.

• DKMS: DKMS.org to request a swab kit

• Be the Match: marrowdrives.org

• Organ donation: organdonor.gov

• Illinois Secretary of State: LifeGoesOn.com