River was diagnosed in early December with a rare and aggressive form of brain tumor called Atypical Teratoid/Rhabdoid Tumor (AT/RT) and stays at the hospital for several days each month for his chemotherapy treatments.
Lucy says her family is fortunate to live in the Chicago area, where world-class care is available for children like River in Lurie Children's Brain Tumor Program. The program is one of the largest and most comprehensive of its type in the nation, caring for more than 170 patients each year. Although AT/RT accounts for only 3 percent of pediatric brain tumors, the program's physicians, nurses and other care team members are experienced in its diagnosis and treatment.
As difficult as River's journey has been, Lucy says that she and her husband, Dallas, are grateful for the care his medical team, led by neuro-oncologist, Rishi Lulla, MD, MS, and neurosurgeon Tadanori Tomita, MD, has provided.
"We could have ended up at another hospital with a medical team without Lurie Children's experience in treating River's specific type of brain tumor," she says.
River was brought to Lurie Children's after his pediatrician became alarmed by a series of seemingly unconnected symptoms. An MRI scan indicated he had a mass in his brain that would need to be surgically removed.
A couple of days before Dr. Tomita was scheduled to remove the tumor, Lucy was contacted by one of Dallas' cousins, who told her that tests had indicated that some Dallas' extended family members carried a mutation of a gene associated with AT/RT.
"I showed Dr. Tomita the genetic family tree she had sent," says Lucy. "I asked him if he thought River's tumor could be AT/RT, and he said, 'How do you know about AT/RT? That tumor is so rare. Are you a nurse?' I said, 'No, I’m a mom!'"
A few days after River's tumor was removed, the pathology report came back: River indeed had AT/RT. Several months later, genetic tests revealed that River also had the gene mutation. Under the direction of Dr. Lulla, River will undergo a year of chemo.
Lurie Children's Brain Tumor Program is one of the nation’s most active sites for early phase clinical drug trials that offer patients access to new treatments and hope for improved survival. Both Dr. Tomita, Head of Lurie Children's Division of Neurosurgery and Medical Director of the Brain Tumor Program, and Dr. Lulla are actively engaged in research into AT/RT. They collaborate with colleagues in both the hospital's Center for Clinical Trials Research and in the Cancer Biology and Epigenomics Program at the Stanley Manne Children's Research Institute of Lurie Children's.
"It's reassuring that they are so passionate about finding cures for this type of brain tumor, even though it affects a relatively small number of kids," says Lucy.
In a promising recent development, AT/RT has been found to have several sub-types. This opens the door to the development of targeted, precision medicine-based therapies for each sub-type that will more effective with less toxic side effects.
Of course, research is expensive, and only 4 percent of federal funding for cancer research goes to pediatric cancer research, making philanthropic support essential to making further discoveries to help children like River.
As she watches River peacefully sleeping in her lap, Lucy says she hopes that one day her son will serve as an inspiration for other children.
"I hope that one day others will look at him as a success story," she says. "If his treatment can help inspire awareness of AT/RT and progress in its research, it would be wonderful."