As an avid sailor, Grant Headifen has navigated through the deadliest waters of the Mediterranean Sea. So when he received the news this past February that his 12-year-old daughter, Alexandra, has diffuse intrinsic pontine glioma (DIPG), he decided to battle the storm head on.
Alexandra was a typical preteen, enjoying school, friends, family, and sailing with her dad, when she suddenly started suffering from intense headaches and blurred vision. When she began to vomit, Alexandra’s family immediately took her in for an MRI, which revealed the worst kind of brain cancer.
“Alexandra’s doctor basically told us there was no hope and that we should just go make memories,” said Grant. “We got the hell out of there as soon as possible and went to work doing our own research.”
Typically, when a child is diagnosed with DIPG, treatment includes oral steroids, radiation therapy, and then either compassionate care or clinical trials. For decades, researchers lacked DIPG tissue to examine in a lab, making the tumor difficult to study and understand. However, in just the last few years, biopsies of these tumors have become safer to conduct, allowing scientists to examine the tumor cells more closely. Through clinical trials, many of which have been supported by the ChadTough Defeat DIPG Foundation, researchers are beginning to make new discoveries that could potentially prolong the lives of DIPG patients and one day lead to a cure.
Alexandra’s tumor was biopsied by Dr. Guillermo Aldave Orzaiz of Texas Children’s Hospital, revealing more details about her cancer and how to best proceed with treatment. She then underwent 6 weeks of radiation therapy at Texas Children’s Hospital. Recently, Alexandra began CAR-T cell therapy, a clinical trial conducted by Dr. Michelle Monje and her team at Stanford University.
The CAR-T cell trial is open to certain brain cancer patients whose tumor contains the H3K27M mutation (a specific kind of mutated gene). Alexandra’s biopsy confirmed that her tumor contains this mutation, making her eligible for enrollment in the trial. During the process, blood will be drawn from Alexandra, and scientists will separate out her T-cells (a type of white blood cell that helps the body fight off disease). The T-cells are then reengineered to recognize and attack her cancer cells before being infused back into her body.
CAR-T cell therapy was approved by the FDA in 2017 for treating many types of lymphomas and certain blood cancers. Trials involving children with DIPG began just this past January, and to date results are showing significant shrinkage of participating patients’ tumors. Still, the procedure can be dangerous, exhausting patients who often suffer from fever and chills after the cells are infused back into their body.
While the animal loving 12-year-old yearns for her carefree life back and has expressed fear over the CAR-T trial, Alexandra’s family has watched her face the disease with courage. The family uses the hashtag #bravelion in social media updates and continues to find strength in Alexandra’s determination to defeat DIPG.
“Kids shouldn’t have to go through what Alexandra is going through,” said Grant, who’s started fundraising to raise more money for research. “We’re going to get through this, and we’re going to help other kids get through this.”