-- When Chad Carr fell and broke his nose, the four-year-old boy’s parents took him to a hospital. Medical staffers saw him and sent him home, but the incident set his mother to thinking about all the other times her son had fallen.
“I just said I think we have to take him back to the ER, I don’t think something’s right ...,” Tammi Carr, of Ann Arbor, Michigan, told ABC News in an interview on Tuesday night.
While Carr and her husband, Jason, waited on the results of an MRI that was to have taken two hours but which took 3-and-a-half hours instead, Carr said she knew something was wrong.
“When the anesthesiologist came out I just knew something was really bad because she literally couldn’t look at us and she’d been crying … so it was -- she just said they found something, and then a doctor came in later and told us what it was,” Carr said.
The Carrs were told that their son -– the youngest of their three young boys –- had diffuse intrinsic pontine glioma (or DIPG), an aggressive, inoperable tumor in his brain stem.
The news came three days after his fourth birthday, and he was soon started on radiation and put into a clinical drug trial at the University of Michigan. Asked about his prognosis, Carr said doctors said it was “not good,” but she added that her son has been improving.
“We’re praying for a miracle and he’s doing really well … he had a really wobbly gait for a while there and his eyes were starting to cross and he – it’s all better at this point so the radiation is doing something,” she said, “and we’re just you know living day by day and we’re asking people to pray for him and we’re trying to get the word out across the country because we’ve seen – we believe that it can happen and we believe in that power.”
One bright spot in the family’s troubles came in the form of a text from a friend, the father of Ariel, Zoey and Eli Engelbert, who appear in a TV show. The Engelberts’ father wrote that his family had been inspired by Chad's challenge and was writing a son about him. He sent them lyrics, and Carr said the song was “totally catchy and adorable.”
It became Chad’s own superhero theme, with rousing music and lyrics that extol the virtues of a boy who’s “stronger than the darkest night, faster than the speed of light,” with the chant in the background: "We need Chad tough." The video features appearances by Chad’s two brothers, TJ 9, and Tommy, 7; his cousins; his father; and by the basketball team of the University of Michigan. Lloyd Carr, Chad’s grandfather, was for a long time the head coach of the university’s football team.
The video also includes appearances by the little superhero himself, and his mother has been pleased by the way the video has been received.
“Today it just it’s everywhere it’s good because again -- we want people to know his story, we want people to pray for him, we want people to know about pediatric cancer …,” she said. “This is just bringing more attention, it’s a great song. It’s something I’m going to cherish forever.
While Chad isn’t very aware of the severity of his illness –- his mother says there’s no need for that -- he understands that the video is about him, Carr said.
“He struggles a little bit with ‘why do people think I’m a superhero?’ He says ‘I know what that song is about. It’s about me. I’m not a superhero,’” Carr said.
As of Tuesday night, the video for “Chad Tough, the superhero theme song for #ChadTough,” had been seen more than 4,000 times. It was first posted to YouTube on Monday.
Proceeds from the sale of song will go for Chad’s care and treatment. A separate Go Fund Me page set up for Chad had raised more than $9,000 of the stated $50,000 goal. That fund was started fifteen days ago.
Carr hopes the family won’t have to use the funds.
“It’s our goal that we don’t have to use that and we can do something great with it for research but if our son needs it then we’re going to do whatever we can so it’s great to have that started. It’s a peace of mind for sure because there’s a lot coming our way. We don’t exactly know yet what it is but none of it is expensive,” she said.
Carr said Chad is being kept out of preschool while he undergoes treatment.
“We want to make sure we’re spending time with him as much as we can and, you know, God willing, he’s able to go back to school next year and, you know, get ready for kindergarten the next year,” she said.
Carr said her family also has a fund started at the University of Michigan for brain cancer research, adding that the university and the family have an even deeper tie.
“I worked in raising money for 11 years to build the hospital that we’re getting treated in now,” she said, adding that the building that houses the unit where her son is treated bears her father-in-law’s name. “It’s just crazy.”
Carr is pleased that the video has caught on, not only because it’s spreading her son’s story, but also because it’s giving her the opportunity to spread the message out about the importance for greater funding for childhood cancer research.
According to the National Cancer Institute, childhood cancer is the top cause of disease-related deaths among children and adolescents up to age 19 in the United States.
DIPG affects between 200 and 300 children every year, and the outlook for patients is generally poor, according to information from the National Institutes of Health.
ABC News’ Eliza Murphy contributed to this report.