2023-06-25 13:27:34
A St. Charles family hopes 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 illnesses.
Matt and Marina Robken have three children; Sutherland, 5, Arlie, 3 and Clay, 1. Arlie has spent the past three months in and out of hospitals and treatment centers after being diagnosed with leukemia on March 17.
In March, the Robken family all contracted COVID-19 and strep throat, but when their daughter Arlie had a fever, blood test results revealed she had blood cancer, Matt Robken says .
After his first round of chemotherapy failed to put the cancer into remission, it was revealed that Arlie suffered from a blood disorder that put him at higher risk.
Marina said she and Matt were devastated when they found out Arlie’s cancer was not in remission.
“It was a huge shock for us. Our lives have been completely turned upside down,” Marina said. “It’s hard to see her in the pain, the worry and the fear that we feel, especially since she is a high-risk patient. »
Once a healthy, energetic and athletic young girl who was always smiling, Arlie is now in a lot of pain and her medication is preventing her from walking.
“Even going through it, she was really tough and brave,” Matt said. “She did better than her parents with that. »
Arlie’s parents said she loved football, gymnastics and swimming and loved Disney movies. Marina said she constantly asked to return to Walt Disney World, where her family went shortly before her diagnosis.
“It was hard. Marina said. “She is only 3 years old, so she has a hard time understanding what is going on. »
Due to Arlie’s weakened immune system, the Robken family has returned to isolation similar to the COVID-19 pandemic, leaving the house as little as possible. Sutherland has been homeschooled since diagnosis and supports his little sister, although he is excited to be returning to school to start first grade next year.
Side effects of his medications include high heart rate and blood pressure, difficulty breathing, eye pressure that causes excruciating pain, vomiting, hair loss, nerve pain, and healing problems.
“It’s been a roller coaster ride, you never really know if it’s going to be a good day or a bad day,” Matt said. “It’s really terrible to be a witness as a parent. »
Arlie is being treated in the Pediatric Oncology Department at Central DuPage Hospital by Dr. Ammar Hyani.
Leukemia is the most common childhood cancer and typical survival rates are very high, Hyani said. In some cases, however, like Arlie’s, where there is no response to chemotherapy, doctors have to resort to a bone marrow transplant.
Hyani said the survival rate for patients who receive bone marrow transplants is also very good.
“Arlie is a cute, strong young girl,” Hyani said. “She’s quite remarkable and has really wonderful parents who have been supportive and very proactive in this outreach. »
The Robkens are hoping chemotherapy will put the cancer into 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 discovering Arlie was a high-risk patient.
With bone marrow transplants, a patient is more likely to be perfectly matched with a donor of the same ethnic background. Patients of mixed ethnicities, like 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 always a need for Caucasian donors, but more so in non-white ethnicities. »
According to Be the Match, approximately 12,000 patients are diagnosed with life-threatening blood cancers or other diseases, such as sickle cell disease. 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 disease and immunodeficiency disorders.
According to Be the Match, the odds of a Caucasian patient finding a match with a stem cell donor are 79%, the odds of a Black patient finding a match are 29%, and the odds of a Hispanic or Latino patient finds compatibility are 48%.
While donor and patient do not have to have the same blood type, other genetic factors must match. Donors can refuse to participate even if they are found to be compatible with a patient.
Marina said their hope is to make these statistics appear as a community and change the lives of many people.
“When you’re dealing with your child’s life, anything less than 100% is honestly terrifying,” Matt said. “So to increase those numbers and bring a little more comfort to future parents and carers who have to go through what we are going through would bring us a lot of fun and joy. »
Hyani said he recommends Be The Match to his patients who may need a bone marrow transplant because of their extensive network around the world and the ease with which they make the process easier. He himself has been registered with Be The Match for many years.
Be The Match connects patients to a network of 9 million registered donors in the United States and 41 million worldwide. Donors must be between the ages of 18 and 40.
“When you’re a parent with cancer, you go through so many things, and usually by the time you need that bone marrow transplant, you’ve already been through so much,” Matt said. “Not having a high percentage of finding a game to rely on can be really demoralizing and difficult to face. »
Matt said the procedure is also relatively easy. He said Arlie had gone through the process several times and was handling it well. He said the awareness gave their family the motivation to keep fighting.
“Marina’s focus on this cause to raise awareness of the need for bone marrow donors has given her a lot of focus and helped her deal with the challenges of the situation we constantly find ourselves in,” said Matt. .
Marina said her family has received a lot of support from the community and 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 a family member with a health issue that they’ll encounter,” Marina said. “So just knowing that we can help someone else who is going through this pain, I think, would be comforting for all of us. »
The Robkens encourage everyone to sign up to be a donor, not just for Arlie, but for anyone who needs a bone marrow or stem cell transplant and is waiting for a game.
“The procedure is relatively simple and it has such a big impact on someone’s life,” Marina said. “We would really like to help as many people as possible. »
Those wishing to register should text ‘Arlie’ to 61464. Be The Match will send out a swab kit for registrants to use and return, and will contact them when a matching blood type patient needs a donor. .
“It’s an uncertain world, and people don’t really know what to do to help,” Matt said. “I would say it’s 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 in Arlie’s treatment will be, but hope that she will soon start living again like a 3-year-old should.
“We hope that no matter what happens, there is a treatment that will save her and that she can go back to her life as she should live it,” said Marina.
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