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One family traveled nearly 9,000 miles to find the best brain tumor treatment for their son.
Two-year old Yeshaai Govender is curious about clinicians who enter his room clad in colorful scrubs and white jackets.
“Do they help babies?” Yeshaai asks his mother.
“Yes, love,” replies Sinola Rajaram, MD.
Nine months ago, Yeshaai was a healthy and vivacious toddler surrounded by the fervent love of family, friends and his puppies, Sumo and Fufoo. On Easter weekend 2010, at his home in Johannesburg, South Africa, Sinola and her husband, Desmond, noticed that their son’s head tilted to the left as he played. This continued for several days, as did the redness in one of his eyes.
Sinola scheduled an appointment with Yeshaai’s pediatrician and several specialists to get answers. His ophthalmologist noticed that the nerve in the brainstem that controls eye movement caused a slight deviation in Yeshaai’s eye. After a series of diagnostic tests, doctors pinpointed a diagnosis.
“The neurologist said the words ‘space-occupying lesion.’ As a physician, I obviously knew what that meant: brain tumor,” Sinola says. “I remember screaming and saying, ‘I cannot conceive this world without Yeshaai.’”
The news was equally shocking to Desmond.
“I don’t think any parent can receive worse news about their kid,” he says. “It was even worse knowing that we had a healthy child before and that now we had to make a choice to do brain surgery.”
As doctors delivered the news of their son’s brain tumor, an innocent and jovial Yeshaai dashed through the corridor and leapt into his parents’ outstretched arms. The encounter shifted their world completely and marked the beginning of a personal crusade to save Yeshaai’s life.
Fearful, yet determined, Sinola immediately phoned friends and medical colleagues for help with locating the top neurosurgeons in Johannesburg and assembled a medical team to remove the malignant tissue from Yeshaai’s brain. After 15 hours of surgery, surgeons successfully removed 100 percent of the tumor. Nevertheless, more had to be done.
Two days later, the neurosurgeon told Sinola and Desmond that Yeshaai had medulloblastoma, a rare, malignant brain tumor found in children.
“Now we need to find, quickly, the best treatment on the planet for our boy,” Sinola told her husband.
As Yeshaai recuperated in the Intensive Care Unit, Sinola set up her laptop just outside his room
and searched the Internet for everything she could find on medulloblastoma survivors.
A blog written by the parent of a patient at St. Jude Children’s Research Hospital caught her eye; their sons’ stories were markedly similar. Sinola continued reading, then clicked on a link to the St. Jude website and immersed herself in details about the hospital’s advancements and successes in medulloblastoma research and treatment. She also learned that St. Jude is home to the nation’s largest research-based pediatric brain tumor program and is the host site for the Pediatric Brain Tumor Consortium, a clinical trials collaboration that includes the National Cancer Institute and seven research centers across the country.
After several e-mail exchanges to the brain tumor program, Sinola learned that Yeshaai met the eligibility requirements for admission to St. Jude. Within days, the family and Yeshaai’s medical escort were on a 23-hour flight to Memphis for treatment.
“We won the greatest opportunity on the planet. Desmond and I were shocked, silent and tearful because for us it meant that our son had a chance,” Sinola says.
Yeshaai’s specialized team of physicians and supportive care clinicians was intact the moment he arrived at St. Jude. This multidisciplinary team would remain with him throughout his treatment and guide his family through the uncertain months ahead.
“When we arrived at St. Jude, everyone we spoke to said this was a place where miracles happen. That was encouraging,” Desmond says.
St. Jude brain tumor experts ordered scans and lab work to ensure the cancer was completely removed and tested Yeshaai’s tumor sample to confirm the diagnosis. They discovered that his cancer was a desmoplastic subtype of medulloblastoma instead of the classic subtype identified in Johannesburg. In addition, diagnostic tests revealed a suspicious spot on his spine. Because of this, his case was classified as high risk.
Amar Gajjar, MD, St. Jude Oncology co-chair, enrolled Yeshaai in the hospital’s risk-adapted protocol for newly diagnosed brain tumor patients 3 years old and younger.
“Medulloblastoma therapy for children in this age group requires a different approach than in older children,” Gajjar says. “Instead of craniospinal radiation therapy, these patients are given combination chemotherapy and focal radiation therapy to the tumor bed or chemotherapy alone based on the type of tumor and other risk features. The main thrust is to avoid irradiation as much as possible to allow their developing brains to mature fully.”
The study is the first and most advanced protocol for patients Yeshaai’s age that stratifies treatment based on patients’ disease risk.
Early findings from another St. Jude study of older patients with the disease have moved investigators closer to understanding the biology of medulloblastoma and toward a trend of developing more targeted therapies for treating these tumors. For instance, a Phase I trial tested the ability of an experimental drug to attack the tumor by blocking a molecular pathway that is linked to approximately 20 percent of medulloblastomas. Gajjar and his team have reported that the drug can be safely administered to children and are making plans to open a Phase II study of the drug soon.
“We’ve learned that medulloblastoma is not a single disease; it’s a compendium of at least four different diseases,” Gajjar explains. “Our approach is to understand the biology of these tumors in young children and use targeted treatment for each of the specific subtypes as the drugs are developed.”
Yeshaai’s desmoplastic medulloblastoma subtype has responded well to treatment. He has completed six courses of combination chemotherapy and has courageously endured the side effects of his treatment.
“Gowns…” Yeshaai interjects, while listening to his mother recall the nearly five months of intermittent hospital isolation that was necessary to protect his weakened immune system from infection.
“No gowns needed, love,” she responds.
“He thinks we’re still in isolation,” she adds.
Yeshaai must undergo his third phase of treatment: six months of oral maintenance chemotherapy aimed at maintaining remission and preventing relapse.
Back at home, a host of family and friends are anxious for his return. Yeshaai’s puppies await the day when he chases them from room to room again.
“In my son’s horizon is his home—with his health intact, his faith enforced and him being loved,” Sinola says. “We came to St. Jude in our greatest hour of need with faith, a bag of clothes, a sick child and hope that someone would help us save our son. We believe in this medication and in Dr. Gajjar and his team.”
“It was very difficult from an emotional perspective when we first came to St. Jude,” Desmond says, “but we have no doubt that Yeshaai is going to be fine because he’s at St. Jude. He’s a fighter like all of the patients at St. Jude.”
Reprinted from Promise Winter 2011
Mom First, Physician Second
A physician, researcher and public health specialist who has done work in emergency medicine, epidemiology, bioethics and biostatistics, Sinola Rajaram, MD, has worked in both private and public health care systems. When cancer struck, Sinola searched the globe to find the place that would offer her son the best chance at life. Read what she discovered.