Davis Jones was 4 years old when he was diagnosed with an aggressive brain tumor called primary intracranial sarcoma. Because his tumor was so rare, Davis needed specialized care and treatment with a physician familiar with this form of cancer. His local hospital connected Davis and his family with Amar Gajjar, MD, at St. Jude.

The Jones family were unsure what to expect. They had many questions.

“We really needed St. Jude,” says Whitney, Davis’ mom. “We needed help trying to figure out what the next steps were going to be.”

The couple met with Gajjar to talk about treatment. They were surprised when he suggested that their son’s tumor might be caused by a genetic condition. Gajjar recommended genetic testing to see if Davis had a genetic condition (genetic predisposition) that increased his risk of developing this type of cancer. 

Gajjar referred the family to the St. Jude Cancer Predisposition Program. There, they met with Rose McGee, a genetic counselor. 

Genetic tests showed that Davis does have a genetic condition that makes him more likely to develop certain types of tumors.

McGee helped the family explore their feelings about the diagnosis. She provided emotional support and information. She also explained that further genetic testing could reveal if other family members were at risk. McGee and the Joneses discussed how the results might affect other family members, and they devised a plan to disclose any results.

Davis’ parents and brother decided to take part in the genetic testing. A simple saliva (spit) test was mailed to their home. 

“We did that as a group, and we sent it back in. It was not difficult at all,” Whitney recalls. 

The test revealed that their older son, Kyler, has the same genetic condition that Davis has. Cancer screening tests at St. Jude identified a kidney tumor before any symptoms had appeared. Kyler had surgery to remove the tumor and save his kidney. 

“I had very little understanding of how closely tied pediatric cancers are or could be to genetics,” Whitney says. “I thought it was environmental or maybe just bad luck.” 

Whitney encourages families to talk with experts about how their family might benefit from genetic testing. She notes that it can provide critical information that can help patients get diagnosed and treated earlier.

“We would have never known that we needed that support had we not done the genetic testing and had we not listened to the advice of the doctors at St. Jude,” she says.