For many parents it may be scary to learn that your child is at risk to develop cancer. But for Kristin Highland it helped bring her peace and provided answers that had been haunting her for years.
When her daughter, Maylee Highland, was just 3 years old, she was diagnosed with acute myeloid leukemia (AML), a cancer of the white blood cells. At that same time, Kristin’s mother was battling leukemia and lymphoma. She also had a grandmother who had died as a result of uterine cancer, and her husband Trevor’s aunt died when she was just a child after being diagnosed with AML.
“I had a very strong feeling that Maylee’s cancer was genetic,” Kristin said. “Doctors said it was very rare for it to be genetic, but even when Maylee went into remission, that feeling didn’t go away.”
Maylee was treated at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta, which is home to one of the largest pediatric leukemia/lymphoma programs in the country. Caring for more than 780 children each year, Kristin knew Maylee was in capable hands at Children’s, receiving the best quality treatment available. However, two years later, her cancer relapsed.
Shortly thereafter, Kristin and her family were introduced to the Cancer Predisposition Program at Children’s, which was founded in 2017 and helps treats children under the age of 18 who are at risk for cancer due to a cancer predisposition syndrome, family history of cancer or diagnosis of a rare type of cancer. Children’s is among a limited number of pediatric hospitals to have such a program, which provides patients and families with the knowledge needed to adapt to the diagnosis and live with a cancer predisposition syndrome.
“We equip families with knowledge that tends to be empowering, and provide a unique medical home that our patients and families value,” said Christopher C. Porter, MD, Medical Director of the Cancer Predisposition Program.
A cancer predisposition syndrome is when an individual is born with a genetic mutation, or change, that increases their baseline risk for developing cancer. Research shows that 10% of all pediatric cancers are caused by a cancer predisposition syndrome.
Through the program, families spend a significant time in counseling sessions with experts like Bojana B. Pencheva, MMSc, CGC, a Genetic Counselor at Children’s. She helps educate families about the most up-to-date information on the specific syndrome, including risk-reducing and surveillance strategies, as well as counseling to empower them to cope with what can be very distressing information.
“I often talk about using genetic information to allow us to be proactive as opposed to reactive when it comes to managing cancer risks,” explained Bojana.
She added that the response she gets from families is mixed. Some are relieved to get answers as to why families members are at risk, while others may be grateful to finally have answers as to why their child developed cancer again.
Dr. Porter and Bojana also work with the Precision Medicine Program conducting research by analyzing genomes for mutations that contribute to cancer development. In addition, Dr. Porter is leading a nationwide effort to establish a research Consortium for Childhood Cancer Predisposition that is funded by the St. Baldrick’s Foundation.
“We are just starting to understand how cancer predisposition syndromes impact the risk of cancer in children,” Dr. Porter said. “Ongoing research will better define that risk, and perhaps identify prevention strategies.”