Kylie Harris, 20, was diagnosed with a cranyopharyngioma almost 17 years ago. “Her daily life has been a series of mountains to climb and battles to win. Living life with cognitive deficits, limited vision, right side weakness, low coordination and a nonfunctioning endocrine system is tough,” says her mom, Rachel. “Every day she amazes us with her perseverance and determination to ‘fit in’ and function within the world she lives in.”

Walking tall

After Brandon Woody, 6, had surgery to remove a medulloblastoma; he couldn’t move his arms or legs and his left eye was turned inward. He went through nine cycles of chemotherapy over the next 18 months and had to have a feeding tube put in.

“His eyes are now normal and he still has some balance issues,” says his mom, Lila, “but he’s improving every week with the help of physical therapy.” Brandon was nervous about how other children would respond to his hair loss, feeding tube, scars and gait when he returned to school last October. “But he pushed through the anxiety, walked right in and started talking and answering questions,” Lila says. “He shows courage and hope every day.”

ONWARD, UPWARD: Brandon Woody (left), and Kylie Harris (right) both suffered brain tumors that affected their daily lives for months and years—but they're continuing to find motivation with each passing day .

Now almost 4, Amariyah Canady was diagnosed with a pilomyxoid astrocytoma at 15 months. “I watched her go…to the size of a 3- to 6-month old,” says her mom, LaToya. The toddler suffered a number of complications after surgery and required a tracheotomy. Amariyah finished her chemotherapy treatments a year ago. MRI scans of her brain now show no signs of a tumor.

Valuable tissue

The challenges and hardships that children like Kylie, Brandon and Amariyah face fuel researchers to seek new and improved therapies. “I had never planned to be a pediatric neuro-oncologist,” admits Dr. Pratiti Bandopadhayay of Dana-Farber Cancer Institute. “During my pediatric training I rotated to the oncology ward and the first patient that I met was a 2-year-old with a brain tumor. So I went back to school and did a Ph.D. in cancer biology so I could contribute to the worldwide research efforts to improve outcomes for these children.”

To researchers like Dr. Bandopadhayay, brain tumor tissue samples richly annotated with clinical and genetic information are like currency that empowers them to advance the field. Fortunately, large-scale scientific endeavors involving banked tumor tissue are underway in the laboratory and in the clinic.

These efforts are critical to reaching the day when every child diagnosed with a brain tumor becomes tumor-free, lives a full life without recurrence and without a trace of the cognitive, medical and psychosocial problems that can happen months or years down the road.