Family Bringing Cupid’s Undie Run to Indy to Benefit Children’s Tumor Foundation
Writer / Christy Heitger-Ewing
Photographer / Jamie Sangar
On a warm August day in 2010, Kendall Reeve entered the world, bright, beautiful, and, by all indications, the picture of health. As the weeks passed, however, her mother, Stephanie, couldn’t shake a nagging suspicion that something wasn’t right.
“I’m a nurse, so everyone assured me that I was just being overly worried due to my occupation,” Stephanie says.
When Kendall became inconsolably fussy at 10 weeks old, a visit to the doctor revealed a huge mass in her abdomen. Additional scans found more tumors in her spine. Diagnosed with neurofibromatosis, a rare genetic disorder that causes tumors to form on nerve tissue, Kendall was referred to Cincinnati Children’s Hospital, where one of the tumors was determined to be a type of cancer called neuroblastoma. She started chemotherapy, but after four months of treatment, the tumors weren’t shrinking.
In May 2011, surgeons removed Kendall’s bladder because a tumor was encasing it. What was left were numerous tumors up and down her spine, abdomen and pelvis area.
“I’d always pictured tumors as perfect round balls, but they’re actually more like snakes that follow the nerve pathways and run around major arteries, which makes them too risky to remove because there are so many major vessels around them,” Stephanie says.
With no cure or viable treatment plan, their only option was clinical trials. To date, Kendall has been through two clinical trials (and is currently on a third), though the tumors continue to slowly grow. Some have dislocated her left hip. She also has severe scoliosis because tumors have pressed hard on her spine. She’s endured two spinal surgeries to remove what they could of the tumors that are encroaching her spinal column. Because they continue to grow, however, she’ll likely need another surgery next year. To tolerate the constant pain, she takes strong medication three times a day.
Though Kendall is mostly confined to a wheelchair, her mobility issues haven’t affected her spunk or positive spirit. Wildly popular, fellow students high-five her anytime she wheels down the hallway of her Fishers elementary school.
“When Kendall enters a room, she commands an audience,” says Stephane, who describes her daughter as an old soul. “Everyone who meets her falls in love with her caring nature.”
Stephanie and her husband, Matt, who also have sons Braden (11) and Tanner (4), don’t dwell on the prognosis for this disease that has no cure. Kendall has tumors that are pressing on her carotid artery as well as tumors that are encasing her abdominal aorta. If any tumors shift in the slightest at any time, it would be life threatening.
“I know that I will outlive my daughter. It’s hard to say that, but it’s our reality,” says Stephanie, who appreciates each day in a way that most families can’t. “I didn’t expect Kendall to go to kindergarten so when she did, it was amazing. Now she’s in first grade. Every day is a gift.”
When the Reeves first got the diagnosis, the doctor said flatly, “This would have been better if it had just been cancer.” He followed that up with, “She’s not going to live a very good life.”
“In so many words, we were told to take Kendall home and keep her comfortable until she died,” Stephanie says. “At that moment, I committed myself to learning as much as I could about this disorder that plagued my daughter.”
After finding a new doctor, Stephanie and Matt got involved with the Children’s Tumor Foundation, attending conferences and participating in fundraising efforts. This February, Stephanie and her friend Jordan Worrell are bringing Cupid’s Undie Run to Indianapolis. The 1-mile fun run began in 2010 when a group of folks playfully ran through the streets of Washington, D.C. in their underwear to raise money to find a cure for neurofibromatosis. This year, the run will take place in 40 cities worldwide. Stephanie’s team is called “Lady Glitter Sparkles” named after a character in Kendall’s favorite movie “Trolls.”
“To hear the words, ‘There’s nothing you can do to help your child’ is devastating, so raising money for Children’s Tumor Foundation helps me feel a sense of control and accomplishment,” Stephanie says. “Now, I can look at Kendall and tell her I’m trying as hard as I can.”
For more on the February 10 Cupid Undie Run, visit cupidsundierun.org.
