Ammachi’s love and recipes nourished Rahul through brain tumor treatment

When a brain tumor disrupted life as he knew it, Rahul clung to the things that made him feel safe. Stable.  

The same songs and prayers at bedtime. The same meals for breakfast and lunch, served at the same times each day. And his favorite person with him for all of it, his grandmother Pushpa. He calls her “Ammachi” in his native language, Malayalam, from South India.  

When treatment for his craniopharyngioma took his family 1,800 miles from their home in California to St. Jude Children’s Research Hospital® in Memphis, Tennessee, Rahul insisted Ammachi go with him and his mother. 

“Every day he tells her, ‘Ammachi, I love you the most,’” his mother, Pauline, said.

Rahul was in 4^th grade when he started to experience frequent headaches and eye discomfort from exposure to light. After several doctor visits and an MRI, doctors discovered a brain tumor in late 2017. 

“You don’t expect your son to have a brain tumor at 9 years old,” Pauline said. “We were so scared.”  

Rahul was diagnosed with craniopharyngioma, a rare tumor that typically forms deep in the brain near the pituitary gland and hypothalamus, areas critical for vision, hormone regulation, metabolism, growth and behavior.  Craniopharyngiomas account for about 6% of childhood brain tumors. 

Most of Rahul’s tumor was surgically removed in California, but then doctors referred him to St. Jude to receive proton beam radiotherapy to kill the remaining portions of the tumor.

St. Jude is home to the world’s first proton therapy center just for children. The center recently celebrated its first decade, treating nearly 1,800 patients, including Rahul.  

Rahul’s treatment at St. Jude included 6 weeks of proton beam radiotherapy , which allows proton beams to be tailored to the depth and size of the tumor, sparing healthy surrounding tissue with fewer side effects.

 Approximately half of the children who come to St. Jude for treatment require radiation therapy, and nearly one in five receive radiation therapy as their only adjuvant treatment, said Thomas Merchant, DO, PhD, chair of the St. Jude Department of Radiation Oncology.

Radiation therapy plays an important role in pediatric oncology, particularly for children with brain and solid tumors. Although craniopharyngioma is a brain tumor, it is not considered cancer because it is slow growing and does not metastasize or spread to other parts of the brain. However, because of its central location and proximity to delicate brain structures, craniopharyngioma can have devastating consequences if it is not diagnosed early. Treatment, which often includes surgery and radiotherapy, can also have lasting effects, highlighting the importance of expert, coordinated care.

St. Jude is a leading center for the treatment of craniopharyngioma in North America, caring for more children with this diagnosis than any other center. Over the past three decades, St. Jude has advanced the study and treatment of this tumor with the dual goals of controlling disease and minimizing the risk of side effects.

“The team of specialists involved in the care of these children is highly specialized and very experienced,” Merchant said. “We share that expertise with caregivers at home and work closely with them to coordinate follow-up, monitor the tumor’s response, and manage side effects as they arise. We are in tune with the needs of these patients.”

That commitment to care extends beyond treatment, including family-centered services like child life specialists and anesthesia support. Experiencing this level of care, Pauline said she began worrying less about Rahul’s prognosis. 

“They took really good care of us. We didn’t feel like we were going through so much pain, because they made a lot of things easier, so that we can focus on him and have good times with him,” Pauline said. 

“If I ever had any concerns, they listened. Even with bloodwork, they were so careful to make sure it didn't hurt. They made him happy. With all the things going on there, he forgot he was sick.”  

Even with that support, Rahul still depended on the routines and comforts that had always helped him feel secure. While St. Jude addressed Rahul’s health, Ammachi helped Memphis feel like home. Along with her bags, Ammachi had packed her slow cooker, too. 

Ammachi always had lunch ready at 11, and it was usually Rahul’s favorite — Chicken 65. The fiery, deep-fried chicken dish sent the aroma of curry leaves and green chilies drifting through the kitchen at Ronald McDonald House, a home away from home near St. Jude where Rahul and his family stayed during medical treatment at no cost. 

Now, eight years later, Rahul is 18 years old and still enjoys his grandmother’s Chicken 65, though Ammachi is coaxing him to try healthier options, swapping in tofu as the protein and air-frying it.  

They still like to pray and sing together before bed. They go on walks in the neighborhood together. And they talk about Rahul’s future. Sometimes, Rahul tells her he dreams of a future in politics. He plans to attend his hometown college and is learning to drive. He spends afternoons doing puzzles with his family and planning international trips. They’ve already been to Japan, Thailand and India. 

Pauline marvels at Rahul’s progress since his treatment at St. Jude, saying she “couldn’t have dreamed he would be doing all the things he’s doing now.”