In October 2014, Kendall Kemm’s parents received devastating news: their then 10-year-old daughter had suffered a hemorrhagic stroke. Kendall’s stroke was a result of an arteriovenous malformation (AVM), a rare defect that results in a tangle of abnormal blood vessels that disrupt the normal flow of blood. AVMs are most often found in the brain or spinal cord and affect less than one percent of the population.
Kendall survived and is currently being treated at Stanford Health Care through stereotactic radiosurgery, which uses radiation to shrink and ultimately destroy the AVM.
Kendall travels here from Pennsylvania for treatment because Stanford offers a unique treatment using CyberKnife technology, which delivers radiation with unprecedented precision. The CyberKnife was invented at Stanford and is used to treat a variety of conditions. Neurosurgeon Steven D. Chang, MD, and radiation oncologist Scott Soltys, MD, co-directors of the CyberKnife Program, are overseeing Kendall’s treatment.
“When Kendall had her stroke, it was devastating,” Kendall’s mother, journalist Leslie Gudel Kemm, told me. “We spent the better part of the first month crying, and then doing research. So few doctors want to treat kids with this condition, but when we connected with Dr. Chang, he said ‘We can treat this’.”
“When I first met Kendall and her family, they were so determined to learn all they could about AVMs,” Dr. Chang said. “Although some AVMs are inoperable, the CyberKnife opens up additional treatment options that other technology doesn’t allow.”
Grateful for the care she received at Stanford and Lucile Packard Children’s Hospital, Kendall brainstormed ways to help others with the same condition. Together with her family, she formed Kendall’s Crusade. The nonprofit aims to provide financial assistance to families affected by AVM, raise overall awareness of the condition, and support neurosurgery research.
Kendall returned to Stanford last week to continue her treatment. While there, she toured the AVM Research Lab and got to assist Lorelei Shoemaker, PhD, with an experiment. And, with funds raised through Kendall’s Crusade, she presented a check to Chang to continue his research on AVM treatment and support a patient travel fund for AVM patients.
Kendall’s AVM is now approximately 90 percent gone, with her next MRI scheduled for next year. Additional treatments will be considered as her progress is monitored. Kendall has remained positive and keeps her mission to help fellow AVM patients.
“I’m grateful for what we’ve been able to do for the other kids who are going through the same thing as me,” said Kendall. “But I want us to get to a point where the research will help to develop a cure, so no other kids have to go through this.”
Joe Molica works on the communications team at Stanford Health Care. He previously worked in politics and energy and has nearly 15 years of communications experience. He holds a law degree from Vermont Law School and did his undergraduate work at UC Irvine.
Previously: Stanford celebrates 20th anniversary of the CyberKnife , A detailed look at latest advancements in treating brain tumors and Finding the right doctor and learning to live with a progressive genetic disorder - as a family
Photo of Kendall Kemm and Lorelei Shoemaker by Norbert von der Groeben