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

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

Matt and Marina Robken have three children; 5-year old Sutherland, 3-year-old Arlie and 1-year-old Clay. Arlie has spent the last three months in and out of hospitals and treatment facilities after she was diagnosed with leukemia on March 17.

In March, the Robken family all contracted COVID-19 and strep throat, but when their daughter Arlie sustained a fever, bloodwork results revealed she had the blood cancer, Matt Robken said.

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

Marina said she and Matt were crushed when they found out that Arlie’s cancer was not in remission.

“It’s been a huge shock to us. Our lives have been completely turned upside down,” Marina 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 homeschooled 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 rollercoaster, 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 the Central DuPage Hospital’s pediatric oncology department by Dr. Ammar Hyani.

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

Hyani said the survival rate for patients who receive a bone marrow transplant also is very good.

“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 Robkens are hoping chemotherapy will put the cancer in remission, but are preparing for a bone marrow transplant.

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 non-white ethnicities.”

According to Be the Match, about 12,000 patients are diagnosed with life-threatening blood cancers or other diseases, such as sickle cell. A blood stem cell transplant from an unrelated donor may be their best or only hope for a cure. A blood stem cell transplant can cure or treat more than 75 diseases, including leukemia and lymphoma, aplastic anemia, sickle cell and immune-deficiency disorders.

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%.

While the donor and patient don’t have to have the same blood type, other genetic factors need to match. Donors may decline to participate even if they are found to be a match for a patient.

Marina said their hope is to bring these statistics up as a community, and change the lives of many.

“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.”

Hyani said he recommends Be The Match to his patients who may need a bone marrow transplant because of their vast network around the world, and how easy they have made the process. He himself has been registered with Be The Match for many years.

Be The Match connects patients to a network of 9 million donors registered in the U.S. and 41 million worldwide. Donors must be between the ages of 18 and 40.

“When you’re a cancer parent, you’re dealing with so much, and usually at the point that you would need this bone marrow transplant, you’ve already been through so many difficulties,” Matt said. “To not have a high percentage of finding a match to rely on can be really demoralizing and hard to face.”

Matt said the procedure also is relatively easy. He said Arlie has gone through the process multiple times, and handles it well. He said spreading awareness has given their family the motivation to keep fighting.

“Marina’s focus on this cause of bringing awareness to the need for bone marrow donors has given her a lot of purpose, and helped her face the difficulties of the situation we’re in constantly,” Matt said.

Marina said her family has gotten 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.”

The Robkens are encouraging everyone to register to be a donor, not just for Arlie, but for all people who need a bone marrow or stem cell transplant and are waiting for a match.

“The procedure is relatively easy, and it makes such a great impact in somebody’s life,” Marina said. “We would really like to help as many people as possible.”

Those who wish to register should text “Arlie” to 61464. Be The Match will send a swab kit for registrants to use and return, and will reach out when a patient with matching blood type needs a donor.

“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.”

The Robkens will soon find out what the next steps for Arlie’s treatment will be, but are hoping she will soon return to living like a 3-year-old should.

“We’re hoping that no matter what happens, there’s a treatment out there that is going to save her and she can resume to live her life the way she should be living it,” Marina said.