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Arda’s story: Our son’s courageous battle and triumph over childhood leukemia

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Arda

Photo courtesy of Erge Edgu-Fry

As a rising high-school freshman,14-year-old Arda Edgu-Fry looks forward to many things this school year – meeting new teachers, building new friendships and playing after-school sports. While high school is full of important milestones for a young teenager, there’s one milestone that stands out for Arda, and one that took courage, strength and perseverance to achieve: Arda is a long-term cancer survivor.

When Arda was just 7 years old, he faced the toughest fight of his life – childhood leukemia. On Jan. 5, 2015, his parents, Erge and Dan, received the unexpected news that their son had a rare form of biphenotypic leukemia with features of acute lymphoblastic leukemia and acute myeloid leukemia.

“Arda began showing strange symptoms in the fall of 2014,” Erge said. “He had swollen lymph nodes around his neck that kept growing. We took him to the ER twice, and both times his blood work came back normal. We sent him to several specialists including an ENT who noticed Arda’s lymph nodes were not just swollen around his neck, they were swollen under his armpits, knees and groin. Arda’s ENT referred us to a pediatric oncologist who examined Arda and looked at his blood work. She immediately noticed a trend and sent us to Texas Children’s where Arda underwent more tests including a bone marrow biopsy. Shortly thereafter, we were introduced to our son’s hematologist-oncologist, Dr. ZoAnn Dreyer, at Texas Children’s Cancer Center. When my husband and I met her for the first time, we knew she would be a godsend to our family. She changed everything for us.”

Arda was fighting a very aggressive form of cancer. Normally, white blood cells help fight infection and protect our bodies against disease. But in leukemia patients, some of the white blood cells grow uncontrollably. As more of these cancerous cells begin to multiply in the blood and bone marrow (spongy tissue inside the bones), there is less room for healthy cells to function. Since Arda’s cancer type is known to progress quickly, prompt diagnosis was crucial. 

“When treating patients with leukemia, chemotherapy is used to destroy as many cancer cells as possible to induce remission,” Dr. Dreyer said. “The type and combination of chemo treatments depend on the leukemia subtype and the aggressiveness of the cancer. After one month of induction, the percentage of cancer cells in his bone marrow decreased to 8%. Three months into treatment, a minimal residual disease test showed there were no remaining cancer cells and Arda had achieved remission! Eight months into his treatment plan, Arda began maintenance chemotherapy to keep him in remission and prevent the cancer from coming back.”

For three-and-a-half years, Arda plowed through his treatments like a champ. For him, the week of steroid treatment was the worst – but as determined as their son was to beat leukemia – Arda made sure he kept a positive attitude. For Arda’s parents, it was difficult to see their son endure such intensive cancer treatments.

“During the first year of treatment, Arda was in the hospital for three to four days for four cycles of inpatient chemotherapy and the rest was given at home or in the clinic as an outpatient,” Erge said. “When he hit the maintenance phase, he had outpatient IV chemo at the infusion center once a month, which included a week of steroids. He also took chemo pills every day. I think what really helped Arda stay strong and positive was his support team at home and in the hospital. He had exceptional doctors, like Dr. Dreyer, and amazing nurses who quickly became his friends. His nurses got to know Arda on a personal level – not just as a cancer patient on the unit – which meant so much to us. There was one special friend he met on the unit, a hospital volunteer named David Hay, who helped patients build origami. Whenever Arda came in for inpatient treatment, he made it a point to drop by his room to say hello. To this day, we still keep in contact with David who is part of our extended family. He was there when Arda rang the end-of-treatment bell. We made so many new friendships on this journey.”

In May 2018, Arda reached a milestone in his leukemia fight – he finished his last chemo treatment. But he didn’t ring the end-of-treatment bell immediately. He and his friend, who was diagnosed with cancer around the same time as Arda, waited until they got their ports removed so they could ring the bell on the same day, signaling the end of their treatment and the beginning of a new chapter as cancer survivors.

Today, Arda is cancer-free. He still sees Dr. Dreyer, who is the clinical director of the Long-Term Survivor Program at the Cancer Center, regularly. Through this program, more than 1,800 patients, like Arda, are monitored for delayed side effects and complications caused by their previous cancer therapies. The program is one of only a few pediatric programs in the U.S. to provide care throughout a patient’s lifetime.

“When your child is diagnosed with cancer, it affects the entire family,” Erge said. “Our family is the type that looks for hidden blessings. We found our silver lining when we met Dr. Dreyer. We’re fortunate to have Dr. Dreyer involved in our son’s care. As physicists, my husband and I are very data-driven, and we asked Dr. Dreyer so many questions, but she took the time to answer all of our questions and concerns. We have so much respect for her, and more importantly, Arda loves Dr. Dryer. They connect really well.”

While this journey was long and difficult, Erge says what helped her family get through the ups, downs and uncertainties, was relying on the support from others – family, community and support groups, including the Periwinkle Foundation, a non profit organization that collaborates with the Cancer Center to organize week-long summer camps for children with cancer and their siblings. Arda absolutely enjoyed attending Camp Periwinkle.

“We were grateful for those who helped our family, especially since we have three other children who needed us,” Erge said. “For those patient families impacted by cancer, it is important to take care of yourself and to take this journey one day at a time. There are so many people ready to support you.”

Each year in September, Texas Children’s Cancer and Hematology Center recognizes Childhood Cancer Awareness Month. Click here to learn more about our center, Long-Term Survivor Program, and how we are changing lives every day for children and families impacted by pediatric cancers and blood disorders.

External Author
Erge Edgu-Fry