14-month-old Minneapolis girl battling extremely rare form of cancer, parents urging people to join national marrow registry

"Her leukemia is in what they call 'blast crisis,' meaning the chronic myeloid leukemia is causing other cells to turn into a different kind of cancer," Zoe's mother, Kirsten Smith, explained. "CML in blood blast crisis is rare, CML in pediatrics is rare, but CML in blast crisis in pediatric cases is extremely rare. The doctors were really surprised because Zoe is the seventh pediatric case of this kind of cancer in the last seven years, worldwide. It's literally a one-in-a-million type of cancer."

Smith said they started noticing unusual behavior in their daughter a few months ago, when she became suddenly withdrawn and was crying more than usual. Doctors suggested Zoe may be teething or might have an ear infection.

"My husband and I just were not satisfied with the answers we were getting," Smith said. "It just didn't feel right."

Zoe later developed low-grade fevers and her parents found mysterious scratches on her body.

While visiting family out west, they decided to take Zoe to the emergency room. Doctors ran multiple tests and told the Smiths that Zoe had cancer and she needed to be immediately airlifted to a hospital in Salt Lake City, Utah.

"I thought to myself, and I even said out loud, that I wish it was me because how can you explain to your 1-year-old that they have cancer?" Smith said.

Zoe is currently undergoing chemotherapy in Utah since the Smiths cannot travel home due to the risks associated with the COVID-19 pandemic. Her mother said her best chance at beating the cancer is a bone marrow transplant.

So far, there is no match for Zoe on Be the Match, the national marrow registry. The Smiths are urging people to consider joining the registry to give their baby girl a fighting chance.

"It would be such a relief if they found a full match for Zoe because that is the best option to be cancer-free and that's, of course, all we want for our child," Smith said.

Be the Match told 5 EYEWITNESS NEWS patients typically match with someone who shares their same ethnic background. Zoe's grandparents are English and Ashkenazi Jewish.

"We definitely think this is a great cause for people to get involved in," Smith said. "And, even if it doesn't help our baby, it might help someone else."

If you would like to join the registry on behalf of baby Zoe, click here.

Be the Match facilitated 6,426 transplants last year. A patient's likelihood of having a matched and available donor on the Be The Match Registry ranges from 23% to 77%, depending on their ethnic background.

To join, people need to meet age and health guidelines and be willing to donate to any patient in need. Registration involves completing a health history form and giving a swab of cheek cells.

• More young people of diverse racial and ethnic heritage are needed now to help patients searching for a match. People between the ages of 18 and 32 are most urgently needed since they are requested by transplant doctors about two-thirds of the time. Research shows that these donors provide the greatest chance for transplant success. People between the ages of 45 and 60 who want to join the registry are welcome to do so online with a $100 tax-deductible payment.
• In 2019, more than 1.4 million new potential donors were added to the Be The Match Registry, of which more than 305,000 were recruited in the United States.
• The most important thing registry members can do is stay committed to donating if identified as the best match for a patient.

Adults may be asked to donate one of two ways:

• About 79% of the time, a patient's doctor requests a PBSC donation, a non-surgical, outpatient procedure similar to donating platelets or plasma.
• About 21% of the time, a patient's doctor requests marrow, a surgical, outpatient procedure that takes place at a hospital. General or regional anesthesia is always used.
• About one in every 430 U.S. Be The Match Registry members go on to donate to a patient.
• A third source of cells used in transplants is cord blood, which is collected from the umbilical cord and placenta immediately after a baby is born. It is stored at a public cord blood bank and the cord blood unit is listed on the Be The Match Registry. There is no cost for parents to donate cord blood.

A Be the Match spokesperson said, as volunteers, people are never under any legal obligation to donate and their decision is always respected. However, because a late decision not to donate can be life-threatening to a patient, they ask everyone to think seriously about their commitment before deciding to join the Be The Match Registry.

The Smith family has also set up a GoFundMe page to help with medical expenses, to donate go to the link here.