When you meet Saw Joseph Naykaw Kankanyaw, it’s hard to believe you aren’t looking at a healthy, normal five-year-old boy. His grin is infectious and given an opening he’ll show you his dance moves.
Joseph’s exuberant personality doesn’t reflect that he’s been battling leukemia for more than a year.
When Joseph was first diagnosed his parents were living in Myanmar. He had a high fever for a couple of days and a rash all over his body. He was so weak that he couldn’t walk, his mother, Naw Hailda Kanyaw Paw, said. At first, doctors thought it was dengue fever, a painful mosquito-borne disease. After several tests and a bone marrow procedure they discovered he had leukemia. Blood levels that should have been high were low, and vice versa, his mother said. Initially he was hospitalized for three months and needed blood transfusions. Fortunately, the type of leukemia Joseph was diagnosed with has a higher treatment success rate than other childhood cancers if the treatment plan is followed correctly, Paw said. That wasn’t always easy in Myanmar.
Because of the political situation there, doctors were in hiding. Joseph’s parents would learn their doctor’s location and quickly go there to get treatment. They also had to “run and hide” while taking him to see his doctor, Paw said. Since they lived in the capital city they could stay in contact with their doctor. Other families living outside the city weren’t as lucky. Their medication was cut off and some died, Paw said.
“It was terrible at that time,” she said.
As a result, treatments weren’t given regularly. The initial doctor treating Joseph said his cancer treatments would be complete in 2023. Once they came to the United States, Joseph’s parents found out treatments would end in August 2022. Since all of Joseph’s medication came from the United States, his family decided to move here in early 2022. They came here with a work Visa but didn’t realize they would not qualify for Medicaid. Joseph’s father would have to work for his employer, Dakota Provision, for three months before he could buy insurance. Their doctor in Myanmar had been very clear Joseph shouldn’t go too long between treatments.
“It was very difficult for us,” Paw said. “We got connected with Horizon. They provided a treatment, the care my son needed.”
The family’s Karen church told them about Horizon and its mission to treat everyone, regardless of their ability to pay or insurance status. Church members introduced them to Aye Aye, a receptionist and interpreter at the James Valley Community Health Center in Huron. Once they began seeing Len Wonnenberg, PA-C, he connected them with an oncologist at Sanford Health in Sioux Falls. Their church provided them with a car so they could make the trips to Sioux Falls. Wonnenberg continues to see Joseph for follow-up appointments.
Joseph’s dad can now buy work-based medical insurance but it’s expensive. They were able to apply for financial assistance with Sanford and only have a $20 co-pay at Horizon. Paw is grateful for the help and care she and her family received from Horizon.
“They are very good and very kind for us,” she said. “We really appreciate it. We thank you all. We understand that you all try your best to help us. We really also need help for our son.”
Joseph has periodic health setbacks. He recently contracted a fever and had to go to the emergency room. The next blood test he had at Sanford was not so good, Paw said. His dad works at night and his mother would like to get a part-time job. She worked in healthcare when the couple lived in Singapore.
“We need to pay for the house, we need to pay bills,” she said. “Every day he needs to take medicine.”
They try to avoid crowded places because it’s easy for Joseph to get an infection.
“I was quite worried, and it was quite stressful as well,” she said.
Even with periodic setbacks, Joseph will be done with treatments in August and has been cleared to go to school. He will attend Buchanan Elementary School. His mother is looking forward to the time when the treatments are behind them. And is grateful for the care he received.
“But it is good that you are here, and you helped us,” Paw said. “We really appreciate it.”