Double whammy

The air we breathe proved almost fatal for one boy struggling to survive childhood leukemia.

Daniel Edelen loved riding his bike, playing baseball and basketball, and being a Cub Scout in Indianapolis, Indiana, where the Edelen family had recently moved from San Antonio in 2003.

Daniel Edelen portrait

Daniel Edelen successfully fought off childhood leukemia and aspergillosis, a rare infection with a high mortality rate. He’s now a business major at UT Austin and is cancer free.
Photo: Jennifer Jennings Images, Inc.

One day in mid-May 2004, however, the family began a health journey that changed everything. Daniel, a first-grader, began having fever and stomach aches. They were so severe that Daniel’s mother, Joan Edelen, took him to the doctor three times that week.

“[The doctor] gave us some antibiotics to start right away and said he thought I would feel better soon,” explained Daniel, now 20.

That weekend, Daniel went for a bike ride and had trouble catching his breath. By Monday, he had bruises all over his body and a blood streak going through his left eye. They rushed to the pediatrician.

“At that point, I couldn’t sit up and was having a lot of trouble breathing,” Daniel recalled. “The pediatrician sent us to the children’s hospital emergency room.”

They immediately X-rayed his stomach and ordered blood tests. After 30 minutes, the family heard what no family wants to hear: Daniel had childhood leukemia.

“The doctors said I had to start chemo right away or I might not make it through the night. There was a tumor of white blood cells in my chest that had almost totally covered both of my lungs, which was causing me not to be able to breathe,” Daniel said. That day, May 17, he began what would become 3 1/2 years of treatment and continuing years of follow-up.

Instead of splashing in the pool and playing with friends that summer, Daniel fought a disease that, until the early 1960s, only 4 percent of children survived. By the 1980s, research discoveries had made it possible for approximately 80 percent of children to survive childhood leukemia. But that 20 percent mortality rate weighed heavily on the family.

Daniel’s treatment continued through the fall and into winter. And then came another test, this one from a little-known fungus: Aspergillus.

Aspergillus is a common mold found in soil, dust, decomposing plant matter and even in some foods and spices. Infections, called aspergillosis, are rare, affecting about 12,000 people each year in the U.S. The fungus focuses on individuals with compromised immunity due to childhood leukemia, lymphoma, AIDS, organ transplantation, severe burns, diabetes, poor nutrition or long-term steroid use.

It was early December when Daniel was diagnosed with aspergillosis. According to the Infectious Diseases Society of America, the mortality rate in immunocompromised patients is 40 percent or higher, especially in patients with widespread infection.

“We were very worried about him,” said his father, Chris Edelen. He remembered a former neighbor from San Antonio, Thomas Patterson, M.D., who also happened to be an infectious disease specialist at UT Health San Antonio. He quickly gave him a call. It was a fortuitous connection.

Dr. Patterson, professor and chief of the Long School of Medicine’s Division of Infectious Diseases, is an international expert in fungal diseases who had helped develop one of the leading drugs to fight aspergillosis at that time­—voriconazole, approved by the Food and Drug Administration in May 2002—and later isavuconazole, approved by the FDA in March 2015.

“Invasive aspergillus often is overlooked, but early diagnosis and treatment are key,” he said. “These are complicated infections with a number of treatment options. Patients really benefit from a multidisciplinary approach, including the expertise of an infectious disease specialist.”

Dr. Patterson led a national committee of the Infectious Diseases Society of America to rewrite the physician guidelines for treating the disease.

The new guidelines, updating guidance from 2008, highlight new methods for diagnosing the infection, as well as new therapies, all based on evidence from clinical trials.

“Because some of the diagnostics are invasive, such as taking a culture directly from the lungs, physicians often are reluctant to proceed. However, because aspergillosis is so deadly, physicians should be aggressive in diagnosing patients suspected of having this infection,” Dr. Patterson said.

With Dr. Patterson’s help, Daniel’s doctors were able to contain the fungus by removing the lower third of his right lung. He recovered from aspergillosis. The 6-foot-3-inch business major at UT Austin is also cancer free.

“I had a lot of trouble regaining my strength, but in the long term, I have not been affected overall,” said Daniel, who continues to get yearly checkups. “It’s definitely not anything I would wish on my worst enemy. It has strengthened me and helped me a lot and helped me help others.”

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