At the age of two, Madeline’s fine motor skills were in the lower 5% range. She had more baby fat than most of her little peers, and an awkward gate when she tried to run. Her family was referred to several doctors, but never discovered the cause behind her issues.
“She fell down a lot and would cry no matter how hard the fall,” recalled her mother, Bethany. “We just thought she was sensitive, but her motor skills continued to fall behind children her age.”
Just after her third birthday, Madeline had terrible leg pain and refused to walk, so Bethany took her back to the hospital. Madeline’s blood work showed that inflammation markers were very high, so doctors ordered a total body scan. They found a football-sized mass in her abdomen that had smashed her bladder and pushed into her intestines, kidney, and liver. A biopsy of the mass confirmed a diagnosis of neuroblastoma.
“The signs were there if we look back,” Bethany said. “Madeline wasn’t sensitive. She was probably the toughest kid around. Every one of those falls hurt her badly.”
Madeline began chemotherapy right away. After two rounds, she was able to walk again. The chemo that proved effective at first slowly stopped working to shrink the tumor. A long surgery allowed doctors to extract 85% of what remained. Unfortunately, the tumor was too intricately woven into Madeline’s spinal column for complete removal.
Madeline was enrolled in the Aflac Precision Medicine Program (APMP) funded by CURE, and the results of her genetic testing were both interesting and useful. Madeline’s tumor had a gene mutation often associated with an aggressive form of neuroblastoma. But fortunately, the remnants of Madeline’s tumor have been stable. Knowing that Madeline has that particular genetic mutation will help doctors in the future should her tumor become active.
Another part of the APMP is the genetic predisposition program, which provides care for children who are at risk for developing cancer due to a cancer predisposition syndrome or a family history of cancer. Madeline’s younger sister, Sedona, has a known genetic disorder called hemihypertrophy. So she was referred to the genetic predisposition clinic to see if her genetic mutation was the same as Madeline’s. If a genetic link between the two was revealed, it might indicate that Sedona had a high risk of developing cancer in the future.
Although no link was found, the fact that both of their children have genetic disorders had an impact on the family as a whole.
“We’ve decided not to risk having additional biological children,” Bethany said. “If we want to grow our family in the future, there are certainly other ways to do so.”
With the mass removed from her stomach and cancer treatment behind her, Madeline is a completely different child. She loves climbing on the playground and using her body now that it works better for her. She rarely cries when she falls down, which proves she is one of the toughest four-year-old kids around.
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