Like most girls her age, 11-year-old Kyler Burke enjoys fashion, bike riding, playing at the park, dancing and dolls. She dreams of becoming a singer and loves to eat pizza.
Though she may seem like the typical fun-loving pre-teen, Kyler’s life has been anything but average.
Since the day she was born, she’s tenaciously battled a rare form of cancer, Desmoplastic Infantile Ganglioglioma (DIG).
DIG is a type of tumor that starts in the glial cells of the brain and is more notable in children younger than one year old. According to the Journal of Pediatric Neurosciences, there have been a little more than 60 cases of DIG reported worldwide —approximately 20 of those cases within the U.S.
Kyler’s mother, Carmen Burke, recalls the initial signs of abnormality in her daughter. “A couple of weeks into her arrival, I noticed a tendency for her to stare off on occasion at a really weird angle—her eyes turned way off to the right. I’d adjust her little body so she could survey the world with greater ease, but she would continue to stare at that angle.”
Within a month following the occasional seizures, Kyler’s pediatrician concluded her head had grown at three times the rate of her body. Further evaluation confirmed that a DIG was covering three fourths of the right side of her brain. Fortunately, the tumor was benign.
Though non-cancerous, the tumor was rapidly growing and causing excessive bleeding. Just 4 months old, Kyler underwent multiple surgeries which resulted in the removal of only 3 percent of the tumor, installation of a shunt, and insertion of a Broviac catheter; followed by 11 weeks of rigorous chemotherapy.
“Every Thursday, Kyler went in for a chemical cocktail, and every Thursday we arrived home to a home-cooked meal prepared by my dear gang of friends,” says Carmen. “For three months that sweet breath of infancy was masked by the distinct odor I recall from my college days of chemistry lab.”
Two months later, 98 percent of the original brain tumor had been removed. Kyler began to move forward developmentally and crawl at the age of one.
Today, Kyler is fairing well. Her rate of head-to-body growth is normal. MRIs are done annually, the tumor tissue is stable and she remains on anti-seizure meds due to occasional seizures which sometimes last as long as 13 minutes.
Surprisingly, her shunt recently needed to be replaced for the first time in 10 years. The average time for shunt revision being 3 years. After replacement, Kyler has remained complication-free. And with the help of her dad, Brent Burke, extra efforts in exercise and drills have brought most micro-motor skills and muscle development up to par.
Though dealing with DIG, Kyler attributes her positive outlook on life to her faith and the support of her family. “I’ve been able to make it through the illness because I know that my family is here with me and God is watching over me,” she said. “That’s what keeps me going.”
“My husband and I never felt like we needed to blame God for anything. After dealing with this for a few days, we came to the realization that our five children were given to us as a gift. They are a loan. They aren’t ours, they’re God’s children. He knows them best and knows what’s best for them. So it turned into an opportunity for us to grow closer in our walk with Him,” says Carmen.
Because DIG is a rarity in the medical community, it can be a challenge to diagnose, especially since the symptoms may be caused by a condition that is not a tumor.
Some children with DIG may experience symptoms while some children may not. Signs and symptoms of DIG include:
Seizures or convulsions
Rapid skull growth or increased head size
Tense and bulging fontanelle, which is the infant’s soft spot on the head
Loss of muscle control
Increased or decreased muscle tone