The first contact was in December 2017, right after Josh and Kim Clark’s toddler son, Ryder, underwent brain surgery that kept him in the hospital for 19 days.
Members of the Yellow Ribbon Alliance of the Lower St. Croix Valley, a group dedicated to supporting the area’s military service members, veterans and their families, arrived at their home in Lakeland with Christmas gifts for Ryder.
Kim Clark is a master sergeant who serves in operation management for the 934th Civil Engineer Unit Company of the U.S. Air Force Reserve and works as a veterans service representative at the Minneapolis Veterans Affairs Medical Center. She and Josh hadn’t had time to shop for Christmas presents. They certainly hadn’t had time to decorate for the holidays.
But members of the local Yellow Ribbon Alliance had.
They showed up for the Clarks — and they kept coming.
Ryder’s birthday? They were there. When he had a craving for Kentucky Fried Chicken? They showed up, a bucket of Colonel Sanders’ Original Recipe in hand. When the Clarks mentioned that they wanted to take Ryder and his younger sister, Aurora, on short car trips to places where the kids could be outside, Yellow Ribbon members gave them a Minnesota state parks pass.
“They have the best hearts,” Kim Clark said. “I feel like they go above and beyond to try to figure out what can help us. They have so much love to give. We didn’t know any of them before this. We just got lucky. They are just the most loving people.”
Said Josh Clark: “They have followed Ryder this whole entire time now. Over the winter, they brought food for us one night each week. They have always checked on us and made sure we were OK. … Regardless of what is going on in their own lives, they’re here to help. It’s just completely selfless.”
DIAGNOSIS: PILOMYXOID ASTROCYTOMA
Ryder Clark was born Dec. 14, 2015, at the Hudson Hospital in Wisconsin. He weighed 8 pounds, 8 ounces and was 21 inches long, and he had a full head of hair. For 18 months, Ryder hit his developmental milestones and “would eat just about anything,” Josh Clark said.
But in May 2017, Ryder suddenly stopped eating. “It was really hard for him to eat normal food,” he said. “He was eating two Saltine crackers and drinking 4 ounces of milk, and that was it for the whole day. He was fully emaciated. You could see all of the bones in his body.”
Within five weeks, his weight dropped from 21 pounds to 17 pounds, an alarming 20 percent decrease.
Dozens of doctor’s visits and a battery of tests followed.
Finally, in July 2017, doctors at Children’s Hospital in Minneapolis found the cause of Ryder’s illness: pilomyxoid astrocytoma, a rare form of cancerous brain tumor that develops only in pediatric patients.
Ryder’s tumor, which is about the size of a woman’s fist, sits adjacent to his pituitary gland, snakes around his right optic nerve and completely encompasses a major artery.
Removing the tumor is not an option because “there is a lot of structure there that they don’t want to go anywhere near,” Josh Clark said.
“When all this stuff happens when you’re developing, your brain naturally moves which function goes where,” he said. “They know a normal brain, but Ryder’s brain is completely different because his body has had to make corrections the whole time, so they don’t actually know what is where in his head.”
Ryder is legally blind in his right eye and experiences nausea, fatigue, muscle weakness, constipation, diarrhea and dermatitis. His immune system is compromised and prone to infection. The enzyme buildup in his legs means he occasionally has a hard time moving around. Neuropathy in his stomach makes him feel as if he has to go to the bathroom even if he’s just gone.
SURGERIES, TREATMENTS FOLLOWED
Ryder underwent surgery at Children’s Hospital in Minneapolis when he was 18 months old; 13 others have followed. He has been on an aggressive chemotherapy regimen since he was diagnosed, including weekly treatments for more than a year. He’s taken five different chemotherapy drugs.
One of the drugs can cause heart damage, and when doctors were checking Ryder’s heart to make sure it was OK, they discovered that he had a patent foramen ovale, a hole in the heart between the upper chambers. “It just makes some of his other surgeries more dangerous,” Kim Clark said. “Fun fact: It’s not something we would have ever known had he not had this issue.”
On Sept. 16, 2017, surgeons installing a shunt in his brain to drain excess fluid away missed the target, causing temporary paralysis on his left side and prompting a second surgery.
“Once Ryder began to wake up, it became obvious that there was something wrong,” the Clarks wrote then on his CaringBridge site. “His face was very asymmetric, and he wasn’t moving his left side unless he was extremely agitated. A CT scan showed that the tip of the shunt was pushed into the motor cortex of his brain. The weakness in his left side is still there and it will take a significant amount of time, physical therapy and occupational therapy to regain the strength. He currently does not use his left hand or foot too much. He can’t stand/walk yet, and it’s difficult to turn head or eyes to the left. We were so excited to see him roll over tonight and try a tiny bit of ice cream!”
Ryder later had a bad reaction to an anesthetic that left him with weakness on his right side, Kim Clark said. “He had to relearn how to walk,” she said. “For a while, we were having to encourage him to talk again.”
In June 2019, the day after learning Kim Clark was pregnant with Aurora, they got a call saying Ryder’s tumor was growing. The family traveled to the Mayo Clinic in Rochester in July for surgery, which involved cutting an opening in a large cyst in Ryder’s head and a third biopsy. The biopsy was used to track the specific gene mutations in his tumor, a qualifying requirement to get into his current clinical trial.
Aurora “Rorie” Clark was born Feb. 22, 2020. “We feel that God brought us Rorie to help us heal,” Kim Clark said. “With Ryder, we were always in fight mode. It was just a reminder to chill out.”
Last summer, Ryder became critically ill after contracting a staph infection in his tonsils. At first, doctors couldn’t determine the cause; they suspected it might be a sinus infection or hand, foot and mouth disease.
For five months, doctors prescribed “a bunch of different antibiotics” until they finally decided in November to take his tonsils out, Josh Clark said.
After having the infection for so long, his body started fighting itself, and Ryder developed a histamine reaction. “His whole body would just get covered in rashes,” he said. “It looked like an allergic reaction — head to toe, everything was red. It itched. He screamed. We spent a lot of sleepless nights slathering him with Vaseline every 20 minutes throughout the night.”
‘KEEP ON KEEPIN’ ON’
“The thing that got me through was a quote from ‘Joe Dirt,’ actually,” Kim Clark said, referring to the 2001 comedy starring David Spade. “It was, literally, ‘You gotta keep on keepin’ on.’ That was it. Every single day. Every single moment. When something is hard, it will end.”
On a recent weekday morning, Ryder and Rorie jumped on the trampoline in their backyard with their three young cousins.
“Look at this!” Ryder said, pointing to everyone’s hair sticking straight up because of the static electricity. “This is what happens when you’re in a ball fight!”
The trampoline jumping doubles as physical therapy, as does the ball throwing, Josh Clark said. “He has a lot of motor-skill issues, so throwing was hard to learn,” he said. “He can throw now, and he does fairly well, but catching he still struggles with — tracking the ball and actually being able to grasp it at the same time is hard.”
Ryder, who is in pre-K at Afton-Lakeland Elementary School, looks and talks like most 5-year-old boys. He loves Spiderman, Keebler E.L Fudge Elfwich Double Stuffed cookies, Dr. Seuss, Mo Willems, strawberries, Three Doors Down, orange chicken and the color green. He roots for the Green Bay Packers because he likes watching games with his mom. He wants to be a “big bad wolf” when he grows up.
Because he looks so normal, “a lot of people don’t understand the amount of trauma that he’s been through,” Kim Clark said. “It’s like an invisible disability. He has to work extra hard on everything because of where the tumor is and what the chemo has done.”
A BIGGER PURPOSE
Kim Clark, 32, grew up in Somerset, Wis., and decided to join the military when she was in middle school. “It was right after 9/11,” she said. “I knew I wanted to do something more — that was for a bigger purpose. I knew that when it came time, I would serve.”
She enlisted in 2007 after she graduated from high school. She went on to the University of Minnesota-Duluth, graduating with degrees in psychology and sociology. She also has an associate’s degree in operations management for the Air Force.
She met Josh Clark, who grew up in Forest Lake, at UMD. Clark, 32, graduated from the University of North Dakota with a degree in civil engineering; he works for an engineering firm laying out traffic signals and lighting systems.
The couple got married in 2011, the same year Kim Clark was sent to Afghanistan for a nine-month deployment. When Ryder was 6 months old, she was sent to England for 20 days. Earlier this month, she spent eight days training at Dobbins Air Force Base in Atlanta.
GOD ‘SENT US ANGELS’
Knowing that her family can turn to the Yellow Ribbon Alliance if they need help has been “really, really nice,” Kim Clark said. “It’s hard to accept help. But knowing people acknowledge what you are going through, and that you are not forgotten, is everything. In the beginning, right after the diagnosis, everyone is super-excited to help you. But then it wears off, and then, at some point in time, you’re just doing what you need to do to get by. This organization has been there to continually remind us that we are cared for and that we are seen.”
Something as simple as a fast-food dinner delivered to the front door on a busy weeknight is huge, she said.
“They’re the people who stuck around,” Kim Clark said. “They’re the ones who cared that it had been three years, four years of a lot of exhaustive nights. They kept with us. They kept tabs on us. They say, ‘How can we help you?’ They even offered to cut our grass when we were in the hospital.”
Cindie Reiter, a member of the Yellow Ribbon Alliance, brought the family a Green Mill pizza and calzones one night in March. “It truly is a privilege to be of support to this incredibly special boy and his family,” she said.
When Reiter learned the Clarks’ roof was leaking, she reached out to the Yellow Ribbon Alliance and a couple of local contractors. A group from Shepherd of the Valley Church, where the Clarks are members, also signed up to help; the Yellow Ribbon Alliance will provide meals for volunteers, Reiter said.
“We are so grateful,” Kim Clark said. “God has sent us angels that have been his hands and feet in helping us through this battle.”
TO HELP, KNOW MORE
A GoFundMe fundraising site has been set up to help Ryder Clark. To donate, go to www.gofundme.com/f/ryderstrong To learn more about the Yellow Ribbon Alliance of the Lower St. Croix Valley, go to https://5cityyellowribbon.com/
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Author: Mary Divine