Family of toddler with rare blood cancer searching for bone marrow donor

SALT LAKE CITY — Zoe Smith is currently fighting for her life at Primary Children’s Hospital after being diagnosed with a rare form of leukemia that will take something even more rare to save her.

The 14-month-old little girl’s parents are pleading with people from all over the world to get on the bone marrow registry in hopes that doing so might save her life.

In April, Kirsten and Theo Smith and their daughter, Zoe, took a trip to Idaho Falls, Idaho, from Minneapolis, Minnesota, to visit family. According to Kirsten, the trip to Idaho was completely spontaneous. She said they are glad they went because being surrounded by family would help them through the challenging days ahead.

“Before we left for Idaho, Zoe was already taking steps,” Kirsten said in an email. “We were so sure she was going to be walking all around the house that we bought a baby gate. But not only did she not walk, but she stopped pulling herself up or even crawling. At first we thought she was just adjusting to being in a new place, but after a week it only got worse, not better.”

The Smiths began searching for information online that might help them understand what was happening with their daughter. They thought Zoe could be going through separation anxiety, with the trip to Idaho being the cause. They were desperate to know why their happy little girl was suddenly so uninterested in playing or even eating.

“I couldn’t set her down without her crying,” Kirsten said. “She would wake up in the middle of the night crying like she was in pain, and she had scratched herself all over her neck. We took her to the doctor about two weeks after her symptoms started. We finally decided this wasn’t anxiety about a new place, but that she might be sick. It was so sad for us as parents to see this radical shift in behavior and not have any answers.”

The Smiths took Zoe to see several doctors, but no real answers were given. Even so, Kirsten said that she had a gut feeling that something was really wrong with her daughter.

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“It’s not medical to say you have a ‘gut feeling’ that something is wrong, but we know our child and she wasn’t doing what was normal for her,” Kirsten said. “Zoe wasn’t sleeping well, had low-grade fevers, didn’t want to play with her toys and needed to constantly be held.”

One of the doctors diagnosed Zoe with an ear infection and sent her home with some antibiotics, Kirsten said. But when Zoe’s condition didn’t improve, her parents decided to take her to Eastern Idaho Regional Medical Center.

“The doctor did some blood work and noticed her white blood cells were through the roof,” Kirsten said.

The high blood cell count gave the doctors reason to believe that Zoe could have cancer and airlifted her to Primary Children’s Medical Center in Salt Lake City on April 23.

While there, Zoe was diagnosed with chronic myeloid leukemia (CML), which the Mayo Clinic describes as an uncommon type of cancer of the bone marrow that causes an increased number of white blood cells in the blood. CML develops when something goes awry in the genes of your bone marrow cell, causing blood cells within the bone marrow to grow out of control.

CML is rare in children, according to the National Organization of Rare Disorders, and symptoms, while also rare, can include things like bone pain, fatigue, weakness, itchiness, abdominal discomfort and weight loss, to name a few.

Treatment of the rare blood cancer is aggressive, including several rounds of chemotherapy and radiation, depending on the stage of the CML. In Zoe’s case, she is at what is called the blast crisis phase, where her bone marrow contains more than 20% blasts (which are immature white blood cells). To put this in perspective, normal bone marrow contains less than 10% blasts. Zoe would require chemotherapy right away to treat the blast crisis, which, according to her mother, has been really hard on her little girl.

“Zoe’s first month of chemo was not easy,” she said. “She was often nauseous and tired. At 13 months old she acted more like a 5-month-old. She couldn’t do a lot physically and she spent a lot of time sleeping. … Still, every day she would perk up at some point and be able to smile and laugh with us. It was always such a blessing to see that.”

There would be an added challenge, however, that the family would encounter when searching for a bone marrow match for their daughter. Due to Zoe’s ethnic background which is white and Ashkenazi Jewish, there are fewer matches on the donor registry.

According to Be The Match, the Twin Cities-based nonprofit organization helping Zoe and countless others link with life-saving donors, patients have a better chance of finding a bone marrow match among a similar ethnic group. This, according to the organization, is because HLA markers used in matching are inherited, and some ethnic groups have more complex tissue types than others.

Because the percentage of Ashkenazi Jewish people on the donor registry is low, there is currently no bone marrow match for Zoe, and her parents are pleading with the public to get on the bone marrow registry.

“I’m begging people to sign up with Be The Match to see if they are a possible donor,” Kirsten said. “Even if you can’t be a match for Zoe, you could be a match for someone else, someone who deserves a chance to live. It’s so easy to register and you could save a life. If for some reason people are unable to register as a donor please consider donating blood. These are amazing easy ways to step up and do good for other people.”

Zoe is a couple of weeks into her second round of chemotherapy, and her mother said that she is doing better. And while the family doesn’t know when they will be able to return home to Minneapolis, Kirsten said again how grateful they are to be in Utah where they are close to family.

“She’s still not walking, but she’s getting there! She’s smiling and playing for most of the day, which gives us a lot of hope!” Kirsten said. “I can honestly say I’m so happy we were with family when we got Zoe’s cancer diagnosis. We’ve been blessed to be around people who have supported us in so many ways during this time.”

A GoFundme page* has been set up to help with medical expenses, but more than anything, the family is asking for people from all backgrounds to join the Be The Match registry in hopes they can find a match for their little girl.

“It’s scary to know that finding a match is hard,” Kirsten said. “This is our baby, and we want her to have a chance to grow up! We want her to have a future, and a transplant gives her that opportunity.”

To register to become a potential match for Zoe, go to https://join.bethematch.org/SaveZoe.