Rare disease leaves girl with half a kidney

When 2-year-old Olorato Astrid Selelo came into the hospital, doctors thought she had a common kidney tumor— but they later found that she had one in each kidney, a potentially unsurvivable diagnosis in Botswana.

Selelo went to the Princess Marina Hospital in Gaborone, where she came under the care of Dr. Jeremy Slone, pediatric hematologist-oncologist at Texas Children’s Hospital. Slone has worked in the country since August 2012, under a partnership between the Botswana government, Baylor College of Medicine and Texas Children’s Hospital.

In June 2013, Selelo presented with a large abdominal mass and blood in her urine. After taking a CT scan, Slone saw that her left kidney had been destroyed and was hemorrhaging, causing the blood to appear in her urine. Initially, he thought it was a Wilms tumor, but then they discovered a large tumor in her right kidney, leaving her with a diagnosis of bilateral or stage V Wilms tumor.

“While bilateral Wilms tumor is manageable in the USA, I feared it was unsurvivable in Botswana where resources are limited,” Slone wrote in a post on Texas Children’s blog.

Wilms tumor is the most common kidney tumor in young children. For every 10,000 children under the age of 15, one child is diagnosed, and in only 5 percent of those cases will the child have tumors in both kidneys, Slone told FoxNews.com in an email.

“Without treatment, Wilms tumor is fatal,” he told FoxNews.com. “Our hospital has the only treatment center for children with cancer and blood disorders in the entire country of Botswana.”

Slone met with Selelo’s parents to explain her poor prognosis and worked on a plan. They began chemotherapy, along with blood transfusions, and after several days, the blood in her urine no longer appeared.

While the tumors were shrinking, specialized surgery was the next step and Slone reached out to pediatric oncologists in neighboring South Africa. They took on her case, and the Botswanian government flew Selelo to the surgeon— and covered her medical costs.

The surgery removed her entire left kidney and half of her right kidney. Selelo also underwent radiation therapy back in her home country.

Now, one year later, Selelo has no signs of cancer and is thriving with only half a kidney. She has normal kidney function, Slone said, with the half kidney doing all the work on its own.

“Unfortunately she has no reserves in the event she suffers an insult to her remaining half kidney from medication, severe dehydration or another cause,” Slone said, adding that if she ever develops trouble with her kidney, she will need an organ transplant.

The 4-year-old followed up with doctors every three months for a year, including doing an x-ray of her chest— lungs are a common metastatic site with Wilms tumor— and will now see doctors every six months for a year, then annually.

“At this point, the chance of her cancer returning is low, but it is still possible,” Slone said. “We will feel much more confident once she is 4 to 5 years off therapy.”

Slone has worked in Botswana since August 2012. Their resources are limited, compared to those in U.S. hospitals, which forces them to improvise to ensure their patients receive the care they need. As part of their work, international doctors train local doctors, medical students and nurses in the care of children with cancer and blood disorders. They are also trying to establish a research program for pediatric cancer in the region.

“The work can be very challenging, but supremely rewarding,” he said.