A burden lifted - Zain Brown

Self-sufficient and resilient, Zain Brown is full of imagination and incredibly wise beyond his tender 4 years. As an only child, he has learned to make the most of precious playtime and navigate the intricacies of an unfamiliar world.

by Joyce M. Webb

patient Zain Brown

There’s never a dull moment in Zain Brown’s life. His interests are numerous and varied, including arts and crafts, professional wrestling, bike riding, school, toy cars and watching SpongeBob SquarePants—all welcomed diversions from the challenges he has encountered since 2009.

One September morning while getting dressed for school, Zain complained of having difficulty urinating. When the problem persisted, his mother, Alisia, took him to a local children’s hospital in Jamaica.

“They did urine tests, and everything came back negative,” she recalls. A pediatrician finally referred them to a urologist, who ordered an ultrasound. That test revealed a mass growing in Zain’s bladder. After a CT scan and surgery to remove the mass, doctors told Alisia that Zain had cancer.

The news was numbing.

“I was shocked. I cried. I was so ashamed, because at that point I didn’t know that kids could have cancer,” she says. “I honestly thought Zain was the first one.”

Never alone

Alisia learned quickly that cancer was not solely an adult disease. Thousands of children develop cancer each year. Zain’s tumor, known as rhabdomyosarcoma, is the most common soft tissue cancer found in children and is slightly more common in boys than in girls. Although it can appear anywhere in the body, approximately 20 percent of all rhabdomyosarcoma cases occur in the genitourinary tract, which includes the bladder.

“When Zain started getting chemotherapy treatments at the children’s hospital in Jamaica, I noticed other kids with cancer. I was relieved, and I realized that we were not the only ones dealing with this life-threatening disease,” Alisia says.

Zain began chemotherapy treatments in February 2010. After several treatments, doctors repeated scans before deciding whether to recommend surgery or radiation therapy to remove the remaining tumor. They recommended radiation therapy, but Alisia weighed options elsewhere to ensure Zain received optimal care.

“Doctors in Jamaica do the best they can, but their resources are limited,” Alisia says.

She and her mother learned about St. Jude Children’s Research Hospital by searching online and through word of mouth from friends.

“We read about the referral process,” Alisia says. “We got everything together and took it to Zain’s doctor, who emailed doctors at St. Jude. Dr. Sheri Spunt responded.”

Rhabdo research

Sheri Spunt, MD, of St. Jude Oncology, specializes in the clinical investigation of soft tissue sarcomas.

“Patients with rhabdomyosarcoma tend to be young at the time of their diagnosis, and they have a lot of growth potential that hasn’t been realized yet,” Spunt says. “Surgery and radiation to the bladder are equally effective in curing the disease, but there were some concerns about surgery because of the location of Zain’s tumor. Fortunately, he qualified for the St. Jude RT-SARC protocol.”

Matthew Krasin, MD, of St. Jude Radiation Oncology, is principal investigator of the RT-SARC trial for pediatric sarcomas. The study’s objective is two-fold: to achieve high rates of local disease control by delivering conformal, or focused, radiation therapy to the tumor while reducing radiation exposure to surrounding tissue; and to minimize the late effects of radiation therapy in sarcoma patients.

“The local disease control for tumors like Zain’s has been excellent,” Krasin says. “Our local control rates have exceeded 90 percent. Although long-term effects have looked good so far using this focused form of treatment, the only way we truly know is to follow these children for a long time.”

Both Krasin and Spunt are also studying the late effects of radiation therapy in rhabdomyosarcoma patients.

“The work being done in the St. Jude Cancer Survivorship Division  and what we eventually learn about late effects will influence how we treat sarcoma patients up front,” Spunt says. “As newer techniques become available such as proton beam radiation therapy and other methods, we’ll be able to compare long-term outcomes to determine which treatment approach is best.”

St. Jude was one of the first institutions to test the camptothecins class of drugs in children, and studies at the hospital suggested that these drugs would be useful for children with rhabdomyosarcoma. The drug irinotecan, for example, was studied extensively at St. Jude in Phase I and Phase II clinical trials and is now being tested in national pediatric rhabdomyosarcoma studies. This collaboration with other pediatric cancer centers ensures that discoveries at St. Jude reach children around the world.

Part of the team

When Zain arrived at St. Jude in November 2010, doctors used a thin, flexible scope to view the inner lining of his bladder and determine the location of his tumor. They repeated imaging and scans and reviewed his case with a multidisciplinary team of specialists.

“The benefit of having a multidisciplinary team is that we can consider all the options for our patients. In Zain’s case, we had input from the urologist, the general surgeon, the radiation oncologist, the pathologist and diagnostic radiologists,” Spunt explains. “We put our heads together and came up with our best recommendation for his treatment. Then, his mother participated in the decision-making about which option she felt was best for Zain.”

Zain started five weeks of radiation therapy on the RT-SARC trial soon after his arrival in Memphis and has now completed his planned chemotherapy regimen. Recent tests showed no evidence of cancer.

“At first I asked God, ‘What have I done to deserve this? Why my child?’ But now I understand that sometimes things happen in life for a reason,” Alisia says. “This experience has taught me so much. It has opened many doors for us, and I thank God that Zain is doing well. We recently got his scan results, and they are good. I don’t know how I can ever say ‘thank you’ to St. Jude.

“Since we’ve been here, it’s like a burden has been lifted off my shoulders,” Alisia continues. “It’s difficult to see children going through this, but we know what St. Jude does is wonderful.”

Promise magazine, Summer 2011

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