Pediatric leukemia caregivers: Why we’re grateful for MD Anderson

When Arav Patil was diagnosed with acute myeloid leukemia (AML) in the spring of 2019, his parents, Komal and Rahul, were dumbfounded.

“Neither of us has a history of cancer in our family,” says his mother, Komal. “And Arav was a healthy, 9-year-old boy who never got sick. It was a really big shock.”

By the time Arav was transferred to MD Anderson from another hospital, his parents had feared he might not survive long enough to begin treatment.

“His condition was deteriorating so rapidly that he was admitted directly to the pediatric unit and put on oxygen,” adds his father, Rahul. “We were really worried.”

Fortunately, MD Anderson doctors were able to refine Arav’s diagnosis based on a genetic abnormality called a chromosomal translocation, and the targeted therapy he received, as a result, put him in remission.

Arav’s leukemia symptoms

Looking back, Rahul and Komal believe their son started showing symptoms of leukemia several weeks before his diagnosis.

“We had to cut our vacation short because Arav developed a nagging cough that wouldn’t go away,” says Rahul. “It was so violent, he was almost throwing up. A week or two before that, he didn’t even have the energy to walk in a 5K fun run. That was something he could normally do very easily.”

Arav also spiked a fever that didn’t go away with a course of antiviral medication and then steroids. He developed tiny red dots on his chest (petechiae) too.

“The symptoms seemed more like pneumonia to me,” adds Komal. “So, the possibility of blood cancer wasn’t even on our radar.”

A refined diagnosis proves to be a game-changer

Because Arav’s condition was so serious when he first arrived at MD Anderson, his care team here began administering chemotherapy almost immediately to stabilize him. Once they pinpointed his exact type of blood cancer — a subtype of acute myeloid leukemia called acute promyelocytic leukemia — they switched to a targeted therapy combination of all-trans retinoic acid and arsenic trioxide.

“Arav’s doctors explained that acute promyelocytic leukemia has one of the highest survival rates among the different leukemia types,” says Rahul. “So, learning that he had it could be a game-changer. That was the first good news I’d heard since Arav was admitted. We were so grateful to hear it.”

Arav’s acute promyelocytic leukemia treatment 

Arav responded so well to the targeted therapy that his doctors discharged him early from the hospital and allowed him to start receiving his infusions as an outpatient. He returned to MD Anderson for two hours daily, for 20 days every other month. He completed his treatments in December 2019.

“It sounded like a never-ending journey at first,” says Rahul. “But when it was over, we were very relieved that it worked.”

The hardest part of having a child in cancer treatment

For both Komal and Rahul, watching their child suffer was the most challenging part of Arav’s treatment.

“Arav is a very social kid, so being restricted and not being able to do fun things with his friends was hard,” says Komal. “Seeing him in a hospital bed with so many tubes coming out of him was awful. He went through it all with a smile, but it’s heartbreaking to see a child’s pain and not be able to do anything to help.”

The Patils derived comfort from both the support groups they attended with other parents and seeing how much Arav enjoyed MD Anderson’s summer camps for pediatric patients.

“MD Anderson has been very supportive in every aspect,” says Komal. “We could not believe how dedicated it is to entertaining kids. The staff keeps things really upbeat. And talking to other parents who have gone through similar experiences is wonderful. It makes you feel not so alone. It also made us realize that there is so much help available. All you need to do is ask.”

Why Arav’s parents have no regrets 

Today, the Patils wouldn’t hesitate to recommend MD Anderson to anyone. 

“Sometimes, you don’t have time to seek a second opinion,” notes Rahul. “But our son is 12 now and doing really well, so we have no regrets. MD Anderson has so much research and experience behind it that we felt comfortable there. We knew our son was in the greatest place he could be. Our first answer for any question dealing with cancer now is always going to be MD Anderson.”

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