Friends become ‘Heroes for Henry’ supporting fifth-grade classmate diagnosed with cancerDec 02, 2022 12:05PM ● By Julie Slama
By Julie Slama | [email protected]
Standing off to the side of a crowd watching a bunch of fifth-grade boys get their heads shaved was their Butler Elementary classmate, Henry Ellison, who occasionally, would have a hint of a smile on his face.
At one point, he took the hair clippers and shaved a streak in his friend’s hair. Otherwise, Henry stayed away from the limelight.
“I’ve got a good group of buddies,” Henry said. “I didn't want to shave anyone's head because I was afraid I’d cut them.”
The boys were getting buzz cuts in support of Henry, who lost his hair earlier this year as a result chemotherapy to fight rhabdomyosarcoma, a rare type of cancer that forms in soft tissue.
The youngster who loves to play basketball doesn’t have the strength and energy now to play ball with his friends, his mother Elizabeth Ellison said, but on good days, he will curl up with his black labradoodle, Oscar, to cheer on Jordan Clarkson and the Utah Jazz or watch his beloved Utah Utes play.
On Nov. 9, Henry and his parents, his high school brother and sister and his seventh-grade brother who also got his head shaved, joined his friends and other community members who came together for a “Heroes for Henry” spaghetti dinner to help fundraise and collect donations to support the family for medical bills and other costs that have accumulated.
“Henry is my son’s classmate and they’ve been doing French immersion together all five years; they’re friends outside of school, playing Jr. Jazz and other sports, and just hanging out,” said “Heroes for Henry” organizer Jamie Jackson, whose son got his head shaved that night. “He's excited to support Henry. We just want Henry to know that he's loved and we're here for him.”
Stacy Stiers, who also has a son shave his head in support of Henry, also pitched into the planning of the event.
“Jamie came to me, trying to figure out a fundraiser to do,” Stiers said. “I grew up in a small town in Nebraska and I remember our community doing fundraisers for families who came upon a hardship. It was just a bunch of families who got together to make spaghetti and people made donations and had dinner together. It brought together our community. I thought this would be a great way for Henry and his family’s friends and neighbors to show their support.”
About 20 volunteers, including teachers, helped with the event from setting up to cooking to serving to shaving heads to giving out “Heroes for Henry” silicone bracelets to those who made donations.
More than 75 people came to support Henry and others sent their regrets with a Venmo donation.
Along with proceeds from selling water at Butlerville Days and a $2,500 grant from Arctic Circle Cares, more than $6,300 has been raised. More donations are being accepted at [email protected].
“When we heard about Henry, I knew there had to be something we can do to help. I just can't imagine what they're going through. So, if this helps them, then it’s so worth it,” Jackson said.
While Henry was able to join his friends, he didn’t eat with them.
“He’s on a feeding tube and can’t eat anything,” said his mother, who added: “He’s excited seeing his friends and just gets shy when he gets a lot of attention.”
This fall, he’s popped into class for an hour or two on occasion, but as winter approaches, that has become less common.
“He was getting neuropathy on his legs so it's hard for him to go up the stairs to fifth-grade classrooms,” Ellison said. “The principal got an elevator pass and let him take a friend with him. The police DARE officer will Zoom in with him and incorporate him into the class; it’s so cute because the kids are excited to see Henry.”
Mostly, his classmates stay in touch with Henry through care packages that families volunteer to put together for him every week.
“People sign up and bring notes, small gifts or draw pictures that help Henry pass the time when he has chemo,” Stiers said. “He doesn't feel great after chemo so everyone has stepped up to brighten his day. I know that his neighbors put together a painted rock garden.”
Henry has received a blanket, toys, books, a robe, a lap desk, robot, sweets and other items, his mother said.
“These kids are just so sweet. They love the care packages as much as he does,” his mother said. “His teachers have sent notes and provide him material to study, but it’s hard because he really doesn't feel good to do it—and sometimes, he just wants to be a kid. He might be able to go back to school when he finishes his chemo, but his immune system will still be down for awhile.”
Stiers also worked with Butler Elementary’s art teacher Marcie Ambrose to have students create quilt squares.
“The art teacher was super incredible and made a whole lesson around drawing on a quilt square and talking about kinds of empathy,” Stiers, who then reached out to a friend to have her put them together in a lap-size quilt that they presented to Henry at the dinner. “This is a way his whole grade can be around him, even if he can’t be around them. We want him to know he’s loved and are sending him happy thoughts.”
Henry, who loves learning about World War II history, began to get bloody noses last May, when he was a student in Parys Lightel’s class.
“He’s pretty shy, but hilarious,” she said. “A lot of kids don’t understand my jokes, but he gets them. He’s very smart.”
Ellison said her son also was tired and congested.
“I thought maybe he got a sinus infection and he was complaining of headaches,” she said, remembering that after six days, the antibiotic didn’t help.
Ellison then took her son to an ENT as she thought maybe he had enlarged adenoids. A scope showed they were enlarged, but the doctor thought there was something more. A CT scan showed a mass. After a biopsy, “they removed a fair amount, which actually helped Henry breathe through his nose again because he hadn't done that for a while.”
The diagnosis on June 17 was cancer in his sinus area.
“Within a week of us going to the ENT doctor, we had a diagnosis and a plan. It was hit it hard and go; it was that fast,” Ellison said. “I just focus on how are things today and not think about other things like side effects and effects of those. The first couple of months were pretty rough. He was pretty mad, pretty upset and said, ‘I’m the most unlucky person.’ We've had lots of talks and he's been a champ and he takes everything in stride. He's had some friends when he felt good, playing video games or hanging out.”
Henry’s favorite video game is “Hill Climb Racing 2,” with dozens of tracks, vehicles and character customization, where “you can buy cars and things you can use for your car to make it go faster,” he said.
A few weeks before his 10th birthday, Henry buzzcut his hair, following his oldest brother’s lead. At his party in July, he already had lost his hair, Jackson recalled.
About a month later in August, Henry got pneumonia and ended up in the hospital. A chest X-ray revealed complications with a port that was implanted for IV treatments earlier, so he had another surgery.
That was followed by 33 radiation treatments, five per week. Henry is now halfway on his 42 weeks of chemotherapy. Every three months, he has a scan.
“It's been life changing,” Ellison said. “I’ve learned that people are just amazing—his friends, their families, the school, his teachers, our neighbors, this community. We’re beyond words, so grateful for the support they’ve given.”