St. Charles family advocates for stem cell donation as daughter fights cancer

A St. Charles couple hope their young daughter's story will encourage people to get screened to become a stem cell or bone marrow donor for patients battling cancer and other life-threatening conditions.

Matt and Marina Robken's 3-year-old daughter, Arlie, has spent the last three months in and out of hospitals after she was diagnosed with leukemia on March 17.

The diagnosis came after family members - including Arlie's siblings Sutherland, 5, and Clay, 1 - contracted COVID-19 and strep throat. When Arlie's fever persisted, tests revealed she had the blood cancer, Matt Robken said.

After her first phase of chemotherapy did not put the cancer in remission, doctors discovered that Arlie has a blood disorder that puts her at a higher risk.

Marina said she and Matt were crushed by the news.

"It's been a huge shock to us. Our lives have been completely turned upside down," she said. "We have a hard time seeing her in pain, the worry and the fear that you feel, especially since she is a high-risk patient."

Once a healthy, energetic and athletic young girl who always was smiling, Arlie is now in a lot of pain, and her medication makes it hard for her to walk.

"Even going through this, she's been really tough and brave," Matt said. "She's done better than her parents with this."

Arlie's parents said she was into soccer, gymnastics and swimming and loves Disney movies. Marina said she is constantly asking to go back to Walt Disney World, where her family visited shortly before her diagnosis.

"It's been hard." Marina said. "She's only 3, so she has a hard time understanding what's happening."

Because of Arlie's compromised immune system, the Robken family has returned to isolation similar to during the COVID-19 pandemic, leaving home as little as possible. Sutherland has been home-schooled since the diagnosis and has been supportive of his little sister, though he is excited to go back to school to start first grade next year.

The side effects from her medication include high heart rate and blood pressure, difficulty breathing, eye pressure that causes excruciating pain, vomiting, hair loss, nerve pain and trouble healing.

"It's been a roller coaster. You never really know if it's going to be a good day or a bad day," Matt said. "It's really terrible to witness as a parent."

Arlie is being treated at Central DuPage Hospital by Dr. Ammar Hyani.

Leukemia is the most common cancer in children, and typical survival rates are very high, Hyani said. But in certain cases, such as Arlie's when there is lack of response to chemotherapy, then doctors must resort to a bone marrow transplant.

"Arlie is a cute, strong young girl," Hyani said. "She's quite remarkable and has really wonderful parents that have been supportive and very proactive in taking on this task of spreading awareness."

The family began working with Be The Match, a national bone marrow and stem cell registry, shortly after finding out Arlie is a high-risk patient.

With bone marrow transplants, a patient is more likely to be a perfect match with a donor of the same ethnicity. Patients of mixed ethnicity, such as Arlie, have a harder time finding a perfect match.

"There is definitely a need for more awareness of the need for donors and registrants," Hyani said. "Of course, there is still a need for Caucasian donors, but more so in nonwhite ethnicities."

According to Be the Match, the odds of a Caucasian patient finding a stem cell donor match is 79%, the odds of a Black patient finding a match is 29% and the odds of a Hispanic or Latino patient finding a match is 48%.

"When you're dealing with your child's life, anything less than 100% is honestly terrifying," Matt said. "So, to bring those numbers up and bring a little more comfort to future parents and caregivers who have to go through what we're going through would bring us a lot of pleasure and joy."

Marina said her family has received a lot of support from the community and from those following Arlie's story on social media.

"I think at some point in our lives, we're all going to have a loved one or family member with a health issue that they'll encounter," Marina said. "So just to know that we can help somebody else that is going through that pain, I think, would be comforting for us all."

Those who wish to register should text "Arlie" to 61464. Be The Match will send a swab kit for registrants to use and return.

"It's an uncertain world, and people don't really know what to do to help," Matt said. "I'd say this is a really easy and wonderful way to get involved in something and make a difference."