Hamilton 7-year-old battling rare brain disease
Sep. 4—For the past four months, Hamilton 7-year-old Rydder Ames has been fighting an aggressive and rare brain tumor.
Before that, he was doing all the things kids his age do, including playing with his brothers, playing video games, riding bikes and more.
"Rydder was your typical, average 7-year-old," said Krista Stevens, Rydder's mother.
But that changed in the spring. Without any previous signs or symptoms, Rydder had a week-long headache at the beginning of April. By April 8, Rydder "basically came home walking like he was drunk," Krista said.
In the months since, Rydder and his family have battled with the challenges of his diagnosis and treatment for the rare disease that is causing his brain to stop sending signals to his organs and parts of his body. His story shows the struggles that come with fighting a life-threating medical condition for a family and a community.
That process started in April, when Rydder started showing signs of losing function in the left side of his body, like dropping an ice cream cone about five times that evening during a family trip to Flub's. Brian Ames, Rydder's father, said it was like he had a stroke.
Krista took Rydder to the ER. After X-rays, a CT scan and a transfer to Cincinnati Children's, Rydder underwent a five-and-a-half hour brain surgery on the April 13, five days after he showed signs on the trip to Flub's.
Krista said the surgery was done to remove what was thought to be either a tumorous mass or a fluid-filled infection. It turned out to be a mass. Rydder's surgeons believed 90 percent had been removed. It was actually only about 55 percent.
Later that month, the family was given an official diagnosis: Diffuse Midline Glioma, or DMG.
Cincinnati Children's describes DMG as a tumor from the glial cells of the brain. Glial cells surround the brain and are supposed to protect it, but for those with cancerous DMG, the cells constantly reproduce and place more and more pressure on various parts of the brain.
DMG mostly occurs in children. The hospital said only 200 to 300 kids in the country are diagnosed with it each year. DMG is a newer, broader description of this type of cancer.
DMG also grows quickly. Kids who have it often start with headaches or altered walks, like Rydder, but symptoms most commonly progress into changed facial movements, loss of balance, speech issues and difficulties swallowing.
For Rydder, DMG's impact has been mainly contained to the left side of his body. In the days leading up to his first surgery, Rydder couldn't use his left hand at all.
"It just laid there," Krista said. "From there, it just kept declining."
While Rydder can still walk, he has lost the ability to do much of what 7-year-olds like to do: Play with their siblings, play videogames or generally be active.
"There's not much feeling in the whole left side of his body," Brian said. "He doesn't have feeling to just about any of it."
Treatment options for DMG are limited. Surgery can remove parts of the tumor, but can never get rid of it entirely, as it occurs around incredibly sensitive areas of the brain. Similarly, radiation can shrink the tumor, but it can't cure it.
Cincinnati Children's said more research is being done, including clinical trials, to broaden treatment options.
Rydder is in a clinical trial, receiving experimental care along with a standard focus on radiation to limit the tumor's growth and a consistent dose of steroids to alleviate the pain.
While the steroids and medications have helped Rydder function, Brian and Krista said the steroids have made his emotions a bit more difficult to navigate.
"It's like he has these freak-out sessions of anger. But, it's not really anger when it comes from him, it's more frustration," Brian said.
Krista added that it's like "roid-rage," and it usually revolves around food.
"The steroids have been in since day one, so what's Rydder and what's steroids are very hard to pick out," Brian said.
The steroids have also changed Rydder's physical appearance. Once a pretty small kid, he has gained 40 pounds since treatment began four months ago.
Rydder and his family are grappling with the emotional repercussions, too. Given everything that has happened, Rydder has been handling it as well as one could expect, Brian said.
"He's done so good with all of this," Brian said. "If it had been like me or you, we'd probably be ... complaining the whole entire time — 'this hurts, that hurts, this sucks, that sucks' — not him."
Rydder understands what's happening to his body in the same way he understands why a PlayStation wouldn't work completely if the Wi-Fi were down: his body just isn't getting the signals from his brain. The metaphor has helped him maintain a level of calmness, but it's a balancing act for the family.
Rydder knows he has a tumor, he knows he has gone into several brain surgeries to deal with it, and he understands that it's serious.
But, Brian and Krista said, Rydder can fixate on things, cancer being one of them. For him, they believe, "cancer" would be synchronous with death. He has seen several family members die from it.
"He had asked — before we knew (that it was DMG) — if he had cancer, and if he was gonna die," Krista said.
"If we told him that, we wouldn't have gotten as far as we have," Brian said.
"We wanted him to stay as strong as he could because he needs to be as strong as he can to fight what he's going through," Krista added.
Rydder is now five months removed from his first symptoms and about four months into his treatment. Historically, Krista said, DMG patients can expect about 8 to 11 months before the tumor forces the brain to shut off functionality in any given organ.
"The disease causes your body to start shutting itself down," Brian said. "It starts putting pressure and cuts off certain parts of your brain that controls functions to other things."
The parents said that sometimes, if a DMG patient dies from an organ failure, the cause of death is listed as the organ failure and not the DMG. Krista believes this results in DMG not having its necessary awareness.
Since Rydder's symptoms showed, Krista has been actively caring for him at almost all times. She takes him to each of his doctor's appointments in Cincinnati and has stopped taking shifts for her gig-economy job to be there for Rydder whenever he needs her.
"He can't dress himself or bathe himself or anything like that," Krista said. "It's definitely something that changes even a child's whole life when they're used to being so independent."
Brian, a Rumpke driver whose shifts now start around 2 or 3 in the morning, said he started going in a little earlier to get out earlier and has taken more time off work to help out at home as much as he can.
"At this point, work, to me, is at the back of my brain," Brian said. "Family is far more important."
Brian and Krista also have two other boys: Walker, a 9-year-old with nonverbal autism and epilepsy, and Sawyer, a 4-year-old.
Though Rydder is still like himself, his parents said he's starting to struggle mentally. Brian called it a "depression stage."
"I know that he's not happy that he can't do what he used to do. He doesn't understand why he can't ride a bike or jump on a trampoline or play with his brothers anymore," Krista said.
Walker, whom Rydder played with often before his symptoms, has had to find his own understanding of what's going on.
"His brother (Walker) knows he's just sick and he's gonna have to wait for him to play toys with him," Krista said. "So, their relationship has definitely changed."
Rydder's family has worked with Jerry Reardon, a local organizer, to put together "Rydder's Ride," an event to help raise some money and to generally brighten Rydder's day.
The event, which Reardon said will feature many motorcyclists riding from Queen City Harley Davidson to meet Rydder in a parking lot near his home, is meant to raise awareness of Rydder's story and DMG in general.
"A lot of people don't understand what these kids and these families go through when a child has it, and what effect it has on the family," Reardon said. "Everybody comes together to try to help, but there's never enough help that you can get. So, it's about getting the word out."
Rydder will meet the riders while hosting a lemonade stand, a favorite pastime of his, before everyone heads back to Queen City Harley for raffles, music and more.
"Hopefully about 100 of my closest friends on motorcycles and a couple fire trucks and police cars ... we're all gonna come rolling in to buy some lemonade from him," Reardon said.
The work by Reardon, who hadn't known Rydder's family before this, is just one example of kindness that has been extended to the family since Rydder's diagnosis.
"Putting all the negative aside, it really shows you who actually cares," Brian said. "We've met people who we would never have come across, our paths would have never crossed if it wouldn't have been for this. Without those guys, I think it would have been a lot worse."
Brian said the family has received an outpouring of care, whether it's been through financial donations, emotional support or simply through reaching out and talking.
"A big family outside of our family is definitely showing huge support," Brian said.
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Rydder's Ride fundraiser
The family of Rydder Ames has helped organize a motorcycle ride to raise funds for his treatment and spread awareness of Diffuse Midline Glioma.
Where: Queen City Harley Davidson
When: Sept. 17. Ride registration opens at 10 a.m. and ride begins at noon.
https://fb.me/e/6sacQbJiX
