SOUTH WAYNE — Less than two years after hoisting the WIAA Division 7 state championship football trophy at the University of Wisconsin’s Camp Randall Stadium, Black Hawk graduate Jayden Stietz is back on campus — albeit not in the way anyone expected.
Stietz has been in-and-out of admission at UW Hospital, battling Necrotizing Myopathy, an aggressive form of Myositis that inflames and weakens muscle fibers in the body rapidly.
“It’s been really hard,” Jayden said. “It’s been mentally hard. The hardest part has been not being able to see my family.”
The all-conference lineman and high school pitcher went from an athletic, able-bodied young adult to being unable to get out of his own truck in just a matter of two short months.
“They still don’t know what triggered this,” Jayden’s father, Billy said. “There was no science from when he was a kid or anything, but they’re thinking some kind of a virus.”
After coming home in March from UW-Platteville due to the COVID-19 pandemic, Stietz began working part-time at Monroe Truck Equipment while doing school online — Jayden has plans to be a tech ed teacher. He was also working out in his parent’s basement, and day-by-day he started feeling more of his body ache.
“Lifting 20 pounds felt like 100,” Jayden said.
Then the fevers eventually set in.
It’s been really hard. It’s been mentally hard. The hardest part has been not being able to see my family.Jayden Stietz
“Some people can get a mono flair up, and that’s what we thought it was,” said Summer, Jayden’s mother. During his junior year of football, Jayden went into the Potosi game with a mono diagnosis, but didn’t tell his parents or coaches — just one teammate. After opening the game poorly, he admitted to the coaches he had mono and was pulled from the game.
At the end of April of this year, he started to notice general fatigue. “He’s always been such a big, strong kid. So, it was kind of like, ‘That’s weird, maybe you’re overdoing it?’” Summer said. By early May, Jayden was needing a full day to recover after going to work. Then, on May 15, Jayden was unable to get out of his truck after returning home from work. “He just kind of sat in the truck and kind of joked, ‘Hey mom, do you want to come out and carry me in?’”
Once inside, he took a shower and then laid down to rest, only to tell his mother he couldn’t move because of the pain.
“We’d been dealing with this for a month, and I just said, ‘That’s it, we’re going to the ER,’” Summer said. They went to the Monroe Clinic Emergency Room, but due to the lockdown procedures for COVID-19, Jayden, now 19, went in alone with his mother in the parking lot. At 9 p.m., he sent his mother a text saying his muscles were breaking down, the creatine levels in his blood work were extremely high and the doctors were sure he had some sort of myopathy.
“It’s so rare. Never in a million years would you imagine this happening, ever. Life’s normal one day, and the next day it’s out of your control,” Summer said.
After two days inpatient at Monroe Clinic, Jayden was transferred to UW. Over the next month he would be in-and-out of the hospital and a rehabilitation facility, getting better for a few days, being released, then getting worse at home and having to go back. At UW, Jayden had multiple medical teams assigned to him, including neurology and rheumatology. His early tests included an EMG (Electromyography), and a biopsy was taken from his thigh to see if the source of his pain was from nerve or muscle damage.
The neurologist called and moved an appointment due for two weeks later up to the next morning. “Right away we knew it wasn’t good,” Summer said.
That night, there was little sleep to be found in the Stietz household. Jayden was in so much pain he couldn’t lay down or sleep. Summer and Billy stayed awake all night, trying to rub his muscles or anything to ease the pain. By 3 a.m., they decided to go back to the ER, and he stayed for the next six days. By June 14 he was back at UW with creatine levels nearly off the chart. “They still didn’t have this thing under control, like they thought they did,” Summer said.
After three more days at UW, doctors were ready to send him back home again — only this time Jayden decided to stay. Summer said he was nervous, even scared, to come back home. The doctors let him stay one more day, and that night Jayden’s health took a further turn in the wrong direction.
“The 16th of June,” Summer said, fighting back tears. “He got so sick. His liver levels didn’t look good; electrolytes were too high; sodium’s too low; platelets were really low; white (blood cell) counts are high. It was just not good.”
The hardest is probably the one visitor with this COVID thing. His siblings can’t go in there. We can’t go in together. It just makes it really hard that way.Billy Stietz, Jayden's father
Jayden entered intermediate care that night, and his body swelled up as the muscle tissue broke down rapidly, eventually he had lost all body functionality. It took three people to get him out of bed, Summer said. “He started to go downhill really fast. He couldn’t bend; he couldn’t lift; he couldn’t move. He had lost all mobility. He had no muscle left — he had lost it all” except for some finger and toe movements, Summer said. “Thankfully he doesn’t remember those days. He only remembers the pain.”
Jayden has lost nearly 50 pounds since first showing symptoms. At the hospital, just one visitor is allowed per patient a day, and visiting hours end at 9 p.m. Summer, Billy and Lauren Schultz, Jayden’s girlfriend since high school, have been taking turns.
“The hardest is probably the one visitor with this COVID thing,” Billy said. “His siblings can’t go in there. We can’t go in together. It just makes it really hard that way.”
Summer said that due to the pandemic, the hospital makes zero exceptions to its visitor limits. “So at 8:45 at night, you set the nurse’s button on his stomach and pray to God it stays there, because you have got to go,” Summer said.
Summer and Billy said the guilt they feel as parents during this crisis is immense. There’s guilt being at home, because of being away from Jayden. There’s guilt being with Jayden, because they’re not home. “There’s no perfect middle. There’s no good place,” Summer said. “The worst part has been not being able to protect your kid from pain. It’s been unspeakable to not make it better; to not be in control. It’s terrifying.”
On July 4, Jayden’s illness began attacking his smaller muscles, including those in his face and throat. He had difficulty swallowing food and developed locked jaw. Instead of staying at the rehab clinic, where he’d have to wait up to three days for insurance to clear, Jayden went back to UW yet again and this time got a feeding tube inserted.
After six more days at UW, Jayden was released to the rehabilitation facility, where he is awaiting word on what the future holds.
Family bond strengthens
Even when Jayden was away at college the family of six never felt far away — Platteville is less than an hour drive from the Stietz home in South Wayne.
“He was at college, and, like, he was gone — but now it’s like we’re kind of split apart,” said younger sister Jenaka.
For his two youngest siblings, watching their big brother — the guy with a big smile across his face, punishing opponents on the gridiron and simply being a role model — struggle against a sudden disease has been a hard pill to swallow.
“It’s just really weird,” said Javin, the youngest of the four Stietz children. “I’m seeing him needing help from a nurse and the person who’s in there to get up. I remember back when he was playing football, and he’s a lineman, so him taking hits and stuff.”
Summer said that in one of his earlier hospital stays, Jayden said he was “really glad” he was the one battling the disease, and not any of his younger siblings.
“That’ll tell you what kind of kid Jayden is,” Summer said.
Jayden said that he couldn’t imagine what his struggle looks like to his siblings, and that he wouldn’t be able to bear the sight of watching Jexen, Jenaka or Javin go through his struggle.
“It’s just really weird. I’m seeing him needing help from a nurse and the person who’s in there to get up. I remember back when he was playing football, and he’s a lineman, so him taking hits and stuff.Javin Stietz, Jayden's younger brother
“I was going through it that day,” Jayden said of his physical pain and intense emotions. “I wouldn’t want to watch one of them go through it, so that’s where I think it was coming from.”
Jayden said that his girlfriend has been great through the entire crisis, that nothing has changed, really.
Lauren admitted that Jayden’s fight has been hard for her to watch.
“It was unexpected,” she said. “I think the thing it’s taught me most is patience. It’s something I’ve been forced to channel. I don’t see him much — I’m still working. And he can’t be on the phone too much, because it takes a toll on him.”
Summer said Lauren’s “been a trooper” for being a 20-year-old young woman. “A lot of credit for her. She’s been a good kid, too — super blessed to have her. She’s been there for the three of us, that’s for sure.”
The family has turned to their faith to help get them through this endeavor. Jayden said his faith in God has been strengthened through it all.
“Faith — that’s all you have at the end of the day; and family and friends. My faith has grown,” Jayden said. “I felt like this experience has brought us all closer. There’s good in the end of all of this.”
Summer said that she prays often. “You pray, you pray, pray, pray and you don’t stop praying. You ask everybody that you know to pray for you,” she said. “There were days where it felt like God wasn’t there — I’m just going to be honest. There were some really bad days. But at the end of it, looking back, he answered prayer in his time. Not my time, and that’s not what we expect. We want things the way we want them, but sometimes you have to walk through things to have your faith strengthened.”
Jayden has the mentality of the position he played on the gridiron — as a lineman, he doesn’t want the attention. “He likes to cheer everybody else on. He’s pretty humble in that way,” Summer said.
Warrior Nation, as supporters of the Black Hawk football team call themselves, support all players past and present. Both South Wayne and the Black Hawk School District are part of a small community that’s filled with big hearts, the family said.
“Lots of people are rooting for me. Lauren and her family have been huge for support of me and my family,” Jayden said.
Summer’s sister-in-law, Robin Lincicum, and niece started a GoFundMe page on June 25. Within days the page had raised more than $17,000. The family decided the funds were getting to be too much, so the web donation page was halted.
Friends and neighbors were dropping off prepared meals, the family received gas cards and cousin Tatum Jackson, and friends Brandi House and Christine Stewart, began selling bracelets that promote #Stietzstrong and Joshua 1:9, a bible verse that reads, “Be strong and courageous; don’t be afraid or dismayed for the Lord your God is with you wherever you go.”
It’s the support part of it that we were blown away by. We’ve always been supportive. A community member had cancer, so I would make a meal and take it up. But you don’t have a clue how much you’re impacting that person. You don’t have any idea. You just think you’re being nice, being neighborly. I will never, ever, ever be the same after this. It would just bring us to tears because we never realized the impact that those little things have on people.Summer Stietz, Jayden's mother
“It’s the support part of it that we were blown away by,” said Summer, admitting there was a part of the connection between giving and receiving that she’d never truly understood prior. “We’ve always been supportive. A community member had cancer, so I would make a meal and take it up. But you don’t have a clue how much you’re impacting that person. You don’t have any idea. You just think you’re being nice, being neighborly.
“I will never, ever, ever be the same after this. It would just bring us to tears because we never realized the impact that those little things have on people.”
Jayden is extra thankful for the support — not just to those supporting him, but especially his family.
“My family is going through it behind the scenes. The entire community is checking in on them. It’s just a blessing,” Jayden said.
His former football coach, Cory Milz, sent him a text message of encouragement that Summer said touched her heart.
“Jayden has had such a deep respect for Coach Milz, and he showed me one of the texts that coach had sent. He said, ‘You know what? It reminds me to fight,’” Summer said. “I know his friends have been reaching out to him; their parents — they are all just checking on him. Everybody. I can’t say enough about the community support.”
Billy works at Ace Concrete in South Wayne for a lifelong friend. The family said that the way Jon Lange, the business’s president, has worked with the Stietz family has been amazing. “When he needs off, he can call the night before and they just let him go,” Summer said. “Not every employer would give him the freedom that he has. That’s been a huge piece in keeping our sanity, having dad around when it’s tough.”
Neighbors have volunteered to watch the younger Stietz children. Others have offered to mow the lawn or even watch their 150-pound Labrador.
“God sent a lot of people to support us. This community, I think we’ve gotten cards from community and family and friends. They’re everywhere, I have the cards everywhere,” in the house, Summer said. “We’re running out of room.”
Summer said she feels bad because she’s been too busy focusing on Jayden and her children to properly thank those that sent Facebook messages, texts and letters, plus those that donated food, gas cards or money to the GoFundMe page.
“Unfortunately, we just can’t respond to everybody, because when you’re there (with Jayden), it’s a 13-hour day and he’s getting 150% of you,” Summer said. “You don’t really even pick your phone up. He needs you; he needs that encouragement; he needs that support; he needs that physical help. It’s been really tough on him, really terrifying and beyond painful.”
What the future holds
Summer said the emotional aspect of walking her son through this crisis and assuring him “a million times a day” that he’s not going to die has been tough. “He’s going to be OK,” Summer said. “But not being able to tell him what the in-between looks like, you know, at the end of this … ‘I don’t know what you’re going to have to go through between then and now.’”
The prognosis is Jayden should recover — whether that is in six months, a year or even later is the concern. For now, when he is allowed to come home the next time — which the family is hoping will be within days, not weeks — Jayden will have to add a number of new pieces of equipment around the house. In rehabilitation, he’s able to stand and walk again, but getting up out of a chair or a bed is still strenuous activity.
I think the thing it’s taught me most is patience. It’s something I’ve been forced to channel. I don’t see him much — I’m still working. And he can’t be on the phone too much, because it takes a toll on him.Lauren Schultz, Jayden's girlfriend
“He’s home sick. He wants to be home. He’s been gone 29 straight days already, and he has his 20th birthday on Thursday (July 16),” Billy said. “He’s got a long and hard road ahead of him to get back to where he was.”
Jayden said he is wanting to pressure his therapist to work him harder in order to recover faster — a stance the medical professionals are not as ready to jump into.
“The diagnosis says that it takes time, and I don’t want it to take time. I’m ready to go to work and get this over with. That’s how I roll,” Jayden said. “I’m not the most patient person, and if there’s something this has taught me, it’s to be more patient. That’s a hard pill to swallow when it could take a half of a year or more to recover.”
With the local numbers of COVID-19 cases on the rise, the Stietz family knows that they have to be extra careful. “Jayden doesn’t have an immune system right now. He wouldn’t be able to fight very well if he got even pneumonia or a cold — it would be tough on him,” Summer said.
However, Summer said her eldest son is unfazed by the COVID-19 tests he receives each time he enters a new hospital. “They have not been pleasant for him, but he said in light of what he’s been through, though, the tests are pretty small in comparison.”
At the end of the day, the Stietz family should get to see their missing piece home again soon, and recovered at some point down the road. The perspective, the family has found, is that is not always the case for others.
“We’re all so thankful because not everybody gets to keep their kids,” Summer said, fighting back tears again. “Some people’s kids fight stuff like this and they don’t get to keep them. We get to bring Jayden home. We thank God for that. No matter how hard it’s been, we still have our kid with us.”