In many ways, Noah Hays is a typical high school junior.
The Providence High School lacrosse player, 16, is a huge Panthers fan and enjoys hanging out with his friends, playing video games and poker.
But Hays, who lives in south Charlotte with his mother and stepfather, Gina and Joe Cugliari, learned this past summer that he is not typical in one key respect. In fact, Hays is unique not just among his peers, but among adults too. In late July 2015, Hays was diagnosed with Stage 4 rhabdomyosarcoma, an extremely rare cancer involving striated muscle tissue.
When Hays complained of a pain in his shoulder, his mother initially assumed it was a sports injury or because he was using his arm constantly at his summer job as a Harris Teeter cashier.
Hays tried resting and icing his shoulder, but it didn’t get better. He went to a chiropractor and had three adjustments, but the pain persisted. The chiropractor suggested he see an orthopedist. The orthopedist suggested an MRI. Gina planned on scheduling the MRI when they came back from a trip to the beach, but the orthopedist told her it couldn’t wait. She took Hays to get it that night. When she got back home, she got a call with the results.
“They said they saw a malignant tumor,” Gina said.
Hays met with an orthopedic oncologist and a hematologist and had an X-ray (that revealed a hole in Hays’ shoulder), a PET scan, a bone marrow aspiration and blood work.
He spent 10 days at Levine Children’s Hospital.
“He got sicker and sicker,” Gina said. “He wasn’t eating. He couldn’t move his arm.”
When they finally got the rhabdomyosarcoma diagnosis, Hays was given a port and began aggressive chemotherapy that he will be on for the next year to year and a half.
“I didn’t know how to react,” Hays said. “I didn’t understand what it meant but I knew it was bad.”
But as bad as it is, there has also been much good.
“It’s amazing how much support we’ve received,” Gina said. “We are overwhelmed by it.”
$25,000 Amount of financial support community has donated for Hays’ medical costs
Hays is homebound, so Providence High School has been “very supportive,” Gina said, with some teachers donating their time to tutor Hays at home.
For Hays, the best manifestation of his school’s support was the Sept. 18 football game against East Mecklenburg High School, when Hays and his cousin Joseph Cugliari and friend Jacob Blair, all juniors, were made honorary captains of the football team. The stands were a sea of orange, including many spectators from the opposing school, because a tweet had gone out encouraging everyone to wear orange in honor of Hays, a Tennessee fan. Many students wore orange shirts that were designed by Hays’ older sister Kayla that read, “We are Noah Strong.”
“It was really overwhelming,” Hays said of the night. “And I felt special.”
“The way our school rallied around him was really amazing,” Joseph said.
For Gina, it was an emotional evening. “We had such a great time,” she said. “But I wish we were there for a different reason.”
And that is not the only special football game Hays has experienced since his diagnosis. On Sept. 20, Hays was given total access to the Panthers game as his Make-A-Wish gift. He got to high-five the players as they entered the field and enjoyed a suite with 20 friends and family.
“Meeting Cam (Newton) was crazy,” Hays said.
The community has rallied around Hays and his family in myriad other ways. Friends provide meals and the Providence Plantation Harris Teeter, where Hays worked as a cashier before he was diagnosed, brings a meal each week as well.
People have also helped the family out financially, starting a Go Fund Me account that helps offset the medical costs that aren’t covered by insurance.
“We have received over $25,000,” Joe said. “And some of it is from people we don’t even know.”
Someone they had never met, who learned about Hays on Facebook and whose own son had battled rhabdomyosarcoma, bought Hays an iPad and a MacBook Pro.
All of the vendors at the First Thursday in Matthews recently provided the family with a portion of their proceeds.
The Charlotte Hounds, Charlotte’s professional lacrosse team, has visited Hays in the hospital. Turn & Burn Lacrosse, a local lacrosse league, planned to hold a lacrosse tournament and fundraiser on Oct. 17 in Hays’ honor.
And during Hay’s most recent hospitalization, he was treated to a surprise visit from an admissions officer for the University of Tennessee, Hays’ dream school, who presented him with a care package of UT mementos and honorary acceptance into UT.
“This was just the thing to help Noah stay grounded,” said Jacquie Cugliari, his aunt, who helped coordinate the surprise, “and have a goal to keep him motivated.”
As for Hays’ medical team at Levine Children’s Hospital, the family can’t say enough.
“The team is outstanding,” Gina said. “From the doctors, nurses, the nutritionist and the people who clean the room – they are all awesome. They make you feel like you are in a five-star hotel. You don’t want to be there but they make you as comfortable as they can.”
Katya Lezin is a freelance writer: firstname.lastname@example.org.