Next, she crushed and dissolved pills so they could run through a separate tube into her intestines, which absorb the medicine better than her stomach.

The steps Lilly took that October morning are necessary because her stomach stopped working properly following her first bout with COVID-19 four years ago. But her routine also served another purpose: It was content she filmed for a video that she later posted on TikTok, where she has amassed nearly 470,000 followers.

Lilly added Tylenol to her mix of medicine that morning, she explained in the video, because her mom was going to be giving her an intravenous immunoglobulin, or IVIG, infusion, which doctors have found to be an effective treatment for patients who have long COVID.

“I always have to pre-medicate with Benadryl and Tylenol so that I don’t have a reaction to the infusion,” Lilly said during the minute-long clip.

For Lilly, TikTok has become a kind of a job — and definitely a distraction — while living with long COVID, the name given to the physical and cognitive symptoms that can persist for months and even years after patients’ initial infections. She’s become a social media influencer, earning thousands of dollars and brand deals by documenting what it’s like to face life with a chronic illness.

She first fell ill with COVID-19 as a teen in 2020 during the height of the pandemic, and The Denver Post has followed Lilly since 2021 through multiple hospital stints and her search for normalcy and answers as to why symptoms, including a high heart rate and brain fog, still linger.

The Post last caught up with Lilly in 2022, when she wasn’t just still sick, her symptoms were getting worse and she was hospitalized with life-threatening infections. Now, Lilly said in a recent interview, she’s doing better physically, living on her own and planning to resume her education in January while using her platform on social media to educate people about her life and illness.

“Filming and editing my videos — it gave me something else to focus on,” she said.

On TikTok, Lilly shares her experiences with feeding tubes, medications and being interviewed by news reporters. Hundreds of thousands — sometimes millions — of people watch her individual videos. But she also shares things you’d expect from a typical 20-year-old — moving into her first apartment, traveling with friends — and it’s these things that show how far Lilly has come.

Two years ago, Lilly was an 18-year-old who just wanted to go home after spending months at Denver’s Rocky Mountain Hospital for Children. Any travel and college plans she entertained were on hold out of fear she’d need to return to the hospital again.

Now, she’s living life outside the hospital’s walls, on her own for the first time, traveling with friends to Utah, and volunteering at a camp for chronically ill kids — and she’s sharing it with the world.

Learning more about long COVID

Lilly was 16 when she first became sick and was hospitalized during one of Colorado’s deadliest waves of the virus. Soon after, she began developing ulcers all over her body that doctors were unable to explain and struggled to treat.

When she first became ill, pediatric doctors were unprepared for patients with COVID-19 to develop persisting symptoms. Long COVID was first seen in adults, and researchers and physicians didn’t know how common it was in children and teens.

A lot has changed since Lilly first became sick, and even since 2022, when her symptoms worsened to the point she had to relearn how to walk on her own and she spent most of the year in the hospital.

While COVID-19 is still around, vaccines and treatments are now available. Doctors and researchers have also learned more about long COVID, including how it affects adolescents, and are working on finding better treatments, such as IVIG, for patients with persisting symptoms, said Dr. Alexandra Yonts, a pediatric infectious disease physician at Children’s National Hospital in Washington, D.C.

Doctors still don’t know why someone specifically develops long COVID, but there are risk factors, such as if someone has multiple symptoms when they first get sick or have autoimmune diseases, she said.

Adolescent girls are at a higher risk of developing long COVID, although the condition also appears more in boys ages 5 and younger, said Yonts, director of the hospital’s post-COVID program.

In 2022, researchers estimated that as many as 651,000 Coloradans had long COVID, with clinics struggling to keep up with the demand for treatment.

Studies also show that the more times a person gets COVID-19, their risk of developing lingering symptoms increases, she said, adding that getting vaccinated decreases a person’s risk of getting long COVID.

“We’re definitely in a much more knowledgeable place of this disease,” Yonts said.

At Yonts’ clinic, doctors have found that patients can experience a range of long COVID symptoms. Fatigue and decreased exercise tolerance are among the most common.

Patients also appear to fall into two groups, Yonts said. One group has more cardiovascular symptoms, such as heart palpitations and difficulty breathing. The other group has more gastrointestinal and neurological symptoms, such as headaches, vomiting and stomach pain.

“It was a way to connect with people”

While there had been a period in 2021 when Lilly appeared to be doing better, she took an unexpected turn as she began vomiting and had trouble swallowing and eating. She landed in the hospital again at the end of summer 2021, missing the first days of her senior year at Lakewood High School.

Lilly was eventually diagnosed with gastroparesis, which means food doesn’t move through her body when she eats, and was placed on a feeding tube.

But her central line — the very thing that gave her nutrients — kept causing life-threatening infections that put her in repeatedly in the intensive-care unit.

So when the autumn of 2022 rolled around and Lilly’s friends left for college without her, she decided to make the best of the situation by posting on TikTok.

The social media app became not just a distraction, but a way to meet people. Lilly has met others living in Fort Collins who also follow her videos, she said.

“It was a way to connect with people because it’s a lot harder in real life when your friends are gone,” Lilly said.

TikTok helped Lilly not only make new friends, it also let her friends from high school better understand her illness, she said.

The TikTok videos help show “that I am a normal person,” she said.

Elisa Downs, Lilly’s mother, said she didn’t quite understand when her daughter started making TikToks — even as she helped make Lillly’s dance videos in the hospital.

“When she really started to pick up momentum, I was, of course, worried because this world is cruel,” Downs said, noting how controversial the topic of COVID-19 can be online.

But then, Downs said, she witnessed the community her daughter found online.

“I saw that it was giving her a sense of purpose,” she said, adding, “She was able to really find a great network of people there who understood.“

Lilly has also been able to earn money for her TikTok videos via the platform’s Creator Fund, which pays users based on how many people view and engage with their posts. To join the fund, a person must be at least 18, have a minimum of 10,000 followers and at least 100,000 video views in the past 30 days, according to the social media app.

Lilly’s videos about her illness — especially the ones about how she receives supplemental nutrition — earn the most views. One of her clips about her nighttime routine received more than 60 million views, bringing in about $5,000 alone.

Lilly said she is “technically” a social media influencer — she has a manager and has started getting brand deals, such as with BeeKeeper’s Naturals, which sells natural remedies. Lilly posted a video showing her using one of the company’s products to help with her brain fog.

But Lilly has other plans, too. She moved to Fort Collins from Golden in August and is adjusting to living on her own for the first time. She wants to get another job and start college next semester at Colorado State University, studying nutrition science in hopes of becoming a pediatric dietitian.

“I’m excited to have a routine,” Lilly said. “Being in class — I’m nervous just because my brain… is just not where it used to be.”

A new normal

Physically, Lilly said, her symptoms have gotten better. She still has days where they flare and she struggles with brain fog, which makes her lose her train of thought.

“I’m definitely having better days,” Lilly said, adding, “Just taking care of myself is a full-time job.”

Her gastroparesis has also improved to the point where Lilly can sometimes eat food without getting sick. She craves things that she didn’t like before, such as condiments and ranch dressing, and is on a self-proclaimed cream cheese kick, especially with pizza. “It’s so good,” Lilly said.

There was a time, Lilly said, when she expected that her life would go back to the way it was before the pandemic, before she got COVID-19, when she used to play soccer and go to school.

“For so long we were just holding out for the normalcy,” she said.

But, Lilly said, “This is my new normal.”

Two heavily armed shooters had entered the Jefferson County school late in the morning on April 20, 1999, and proceeded to kill 12 of their classmates and a teacher, injuring dozens more in a tragedy that shocked Colorado and the nation.

The shooting, which ended with the two killers taking their own lives, reshaped school security across the United States and served as a precursor to the litany of mass killings that have taken place across the country in the decades since — so much so that the school’s very name, Columbine, remains synonymous with school shootings.

But what happened next, after DiManna fled the building with her colleagues and pupils, is also part of Columbine’s legacy, the one that, 25 years later, both current and former employees talk about the most: the resiliency and hope that persists in a community marked by one of the deadliest school shootings in American history.

“We take care of each other,”  DiManna, who still teaches math at the high school, said in a recent interview. “You don’t really leave your family after trauma — and that is what Columbine is.”

And that’s why the 53-year-old, who will retire at the end of this academic year, has spent her entire career at Columbine despite such tragedy. DiManna is one of 15 current Columbine staff members who were either employees or students at the time of the shooting.

As Jeffco Public Schools marked the shooting’s 25th anniversary, officials held a media day with Columbine and district staff earlier this month to talk about the changes to school security that occurred nationwide in the wake of the shooting, such as lockdown drills and the creation of Safe2Tell, Colorado statewide anonymous reporting system for students.

Much has changed in 25 years. Those who were students at the time of the shooting have become parents and the pupils that now sit in the high school’s classrooms are too young to remember the tragedy, having not been born until years later.

One thing that hasn’t changed, though, is that at 11:20 a.m. each April 20 — around the time the shooting began — former Principal Frank DeAngelis gathers at the school with families and staff to read the names of the 12 students and one teacher who died that day: Cassie Bernall, Steven Robert Curnow, Corey Depooter, Kelly Fleming, Matt Kechter, Daniel Mauser, Danny Rohrbough, Dave Sanders, Rachel Scott, Isaiah Shoels, John Tomlin, Lauren Townsend and Kyle Velasquez.

“Columbine represents a time to remember,” said DeAngelis, who served as principal for almost two decades, and made it his mission to rebuild the school after the shooting and to help his students through the trauma.

DeAngelis retired in 2014, two years after he fulfilled a promise he made after the attack to remain as principal until all of the students in Columbine feeder schools at the time of the shooting had graduated.

“Columbine also represents hope,” he said. “Columbine is strong.”

The day has also become an annual day of service where students and staff give back to the community through volunteer projects.

“The community came together and made it stronger,” said current Principal Scott Christy, adding, “I hope Columbine is a place of hope for those who have experienced tragedy.”

On the day of the shooting, DiManna was a 28-year-old in her fifth year of teaching at Columbine, a school she also graduated from in 1989.

For DiManna, the moments after she heard screaming followed like this: A teacher pulled a fire alarm to evacuate the building. Her sister, Kim, who was a senior, found her and DiManna told her to leave — but she did not do so herself until after helping evacuate the math department’s classrooms.

DiManna found her sister again outside, where they saw an injured student near a stoplight before going into a house across the street, which is where she called her husband.

Residents opening their doors to students and staff fleeing the shooting isn’t the only thing DiManna remembers. She also recalls youth ministries helping care for students in the days that followed no matter whether they were members of their churches or not.

“I don’t know how many communities could take care of kids as ours did,” she said.

At the time, the shooting at Columbine was the deadliest at a K-12 school in U.S. history. There hadn’t yet been massacres at schools in Newtown, Connecticut, Parkland, Florida, or Uvalde, Texas.

In other words, there weren’t many people who knew what the survivors of the school shooting experienced and how it would affect them in the years that followed. They couldn’t understand how, for Columbine survivors, routine fire drills can be a trigger, how lockdown drills can create a panic, or how each year when April rolls around, so, too, comes anxiety about what might happen, DiManna said.

That’s also why DiManna stayed at Columbine. The support that the community provides didn’t end 25 years ago, she said.

Christy, the school’s principal, checks on the staff members who were at Columbine in 1999 each time there’s another school shooting or something else happens that could upset them, DiManna said.

“We just pick each other up,” she said. “You always knew if you were having one of those days, or something happened, you had someone to talk to.”

The reason DiManna returned to Columbine after the shooting is also simple.

“I wanted to teach,” she said.

A student at Denver’s East High School shot and wounded two administrators Wednesday while the teen was undergoing a required daily search for weapons, then fled the building, authorities said.

Denver police identified the suspect as 17-year-old Austin Lyle and said he was wanted on suspicion of attempted homicide.

Later in the day, police located Lyle’s vehicle in Park County and then, around 8:15 p.m., found his body nearby. Park County Coroner David A. Kintz Jr. said Thursday that preliminary autopsy findings confirm Lyle died as a result of a self-inflicted gunshot wound.

The latest incident of gun violence at East in recent weeks inflamed frustration about safety at the school, where students have this year endured the shooting death of a classmate, threats of violence and lockdowns.

East hasn’t had Denver police assigned to the school since Denver Public Schools’ Board of Education removed all school resource officers following the national reckoning over the murder of George Floyd in 2020.

But DPS Superintendent Alex Marrero suggested Wednesday that could change in the wake of the attack. He announced two armed officers will be at East for the rest of the school year, and said he was “committing” to have an armed officer at each comprehensive high school in the district — despite the fact that it “likely violates” school board policy.

Students and parents identified the victims of Wednesday’s shooting as Dean of Culture Eric Sinclair and Jerald Mason, a restorative practice coordinator in the dean’s office.

Denver Health confirmed that both men were patients at the hospital Wednesday. Mason was listed in good condition and Sinclair in serious condition, hospital spokesperson Amber D’Angelo said.

The shooting Wednesday happened at about 9:50 a.m. in an office area away from students, officials said. Lyle was undergoing a search for weapons when a gun was discovered. The student then fired shots and “was able to get out of the school,” Denver police Chief Ron Thomas said.

Lyle, who previously was “removed” from Overland High School in Aurora over discipline issues, is required to be searched when he arrives at school every morning as part of what DPS officials described as a pre-existing safety plan because of his past behavior. But administrators had never before found a gun on him, police and school officials said.

Police said they took the unusual step of publicly identifying the juvenile after the attack “due to the public safety concern.”

“We don’t have any sense of where he is. We know where he lives,” Thomas said at a morning news briefing, lamenting “a very troubling situation” at East High School.

“The screaming was so horrible”

Senior Eliza Romero was in the school nurse’s office when she heard four bangs come from the room next door.

At first, she wasn’t sure whether they were gunshots. The 18-year-old had been wearing headphones and the noise was so much quieter than the bangs she heard last month when a 16-year-old student was shot outside of the school.

Romero looked to another student who was also in the room to see whether they also heard the noise. That student had a panicked look on their face. They’d both heard gunshots.

“Right as we had that realization, I saw people flooding out of the dean’s office,” Romero said. “I saw people screaming.”

A security officer sprinted into the nurse’s office and locked the door. Romero and the other student ran into a bathroom connected to the office and hid in a stall.

From their hiding spots, the students could hear screaming, police sirens and noise from walkie-talkies, Romero said.

“We were both just in there panicking, trying to help each other out,” she said.

After about 30 minutes, police officers came into the nurse’s office yelling, asking if anyone was in the room. They escorted the two students to the auditorium, where they stayed briefly before being moved to a classroom, Romero said.

“Hearing it happen and hearing the screaming was so horrible,” she added. “I haven’t really processed it at this point but it was so horrible.”

“We are all East High Angels”

Students said the two wounded administrators were both well-liked at school. Janaiya Hopper, an 18-year-old senior, saw them before a school assembly Wednesday. They wanted to hear about her 18th birthday, which she had celebrated on Friday.

“They were telling me they were so proud of me and they can’t wait to see me graduate,” Hopper said.

One administrator was in critical condition undergoing surgery when initially hospitalized Wednesday, Thomas said.

Paramedics were already in the school when the shooting happened because a student was suffering an allergic reaction, Mayor Michael Hancock said. Those paramedics were able to treat the shooting victims immediately, he said. The mayor called that “lucky” and said the quick medical treatment might have saved a life.

Gov. Jared Polis wished the administrators speedy recoveries while speaking at a news conference about new legislation at the Capitol.

“Today, we are all East High Angels,” Polis said.

School officials placed East on lockdown following the shooting, and students later were let out during a controlled release. Classes at East were canceled for the remainder of the week, Marrero said during a news briefing.

Parents waited outside yellow police tape at the school Wednesday to collect students, craning their necks to spot their children.

“I’m sad, frustrated, upset, alarmed,” said Julie Siekmeier, a parent of an East High School senior. “Although the kids are almost numb to it.”

Jamela Brown hugs her 18-year-old daughter, Janaiya, outside East High School. “I don’t want to come back to school,” Janaiya said as tears streamed. pic.twitter.com/rR3M8hVRIX

— Noelle Phillips (@Noelle_Phillips) March 22, 2023

Recent shootings, threats at East

Students at East have spoken out in recent weeks about no longer feeling safe on campus after their classmate was fatally shot about a month ago. Luis Garcia, a junior, was sitting in his car near East when he was shot on Feb. 13. The 16-year-old died from his injuries more than two weeks later, on March 1.

After the February shooting, the school experienced multiple lockdowns and other alerts, students said. A weapon was found on campus the day after students returned to class.

Students have called on Denver Public Schools to respond more aggressively to the threat of violence. Earlier this month, they also walked out of their classrooms and to the Colorado State Capitol to advocate for gun legislation and safer schools.

“I feel like it’s something that everybody has to worry about here a lot,” said student Anae Hernandez, 15. “Because this is not like something that just happens once in a while. This is a recurring theme and it’s not something that should be going on.”

She was outside the school and walked up to see an ambulance and one of the wounded faculty members on a stretcher Wednesday. Someone told her there had been a shooting, so she ran to a nearby 7-Eleven convenience store to hide.

“It’s scary,” she said.

Marrero said two armed guards will be stationed at the high school when classes resume after spring break, and those guards will stay through the end of the school year.

“We’re looking forward to expanding that conversation to see how we can reestablish a relationship (with Denver police),” he said.

Denver’s elected school board voted in 2020 to remove police school resource officers from the district’s schools, arguing that having police in schools harmed students of color and perpetuated the school-to-prison pipeline.

The board issued a statement Wednesday evening saying it supported Marrero’s decision “to work in partnership with local law enforcement to create safer learning spaces across Denver Public Schools for the remainder of this school year.”

The statement did not address the future of school resource officers in DPS, and board President Xóchitl “Sochi” Gaytán did not respond to questions on the issue. The board is expected to hold a news conference Thursday.

https://twitter.com/DenverPolice/status/1638634282552901632

Prior discipline, removal from Overland

Lyle, the suspect in Wednesday’s shooting, had transferred to East from another district, Marrero said. Officials did not reveal why the student was being searched daily.

He previously attended Overland High in Aurora.

“He was disciplined for violation of board policies and was removed” from the school last academic year, Cherry Creek Schools spokesperson Lauren Snell said. She declined to say which policies were violated.

Marrero said safety plans for students are enacted in response to “past educational and also behavioral experiences,” adding that it’s a common practice throughout Colorado’s public schools.

But daily pat-downs are rare, said Matthew McClain with the Colorado School Counselor Association, and Franci Crepeau-Hobson, a University of Colorado Denver professor specializing in school violence prevention.

“Clearly they were concerned,” said Crepeau-Hobson. “I can’t imagine they’d do that if there wasn’t a history of the kid carrying a weapon for whatever reason.”

School safety plans are often imposed after students exhibit threatening or suicidal behavior, said Christine Harms, director of the Colorado School Safety Resource Center. A team that can include counselors, administrators and police officers assesses the possible threat and develops a safety plan, which can include mental health support, more supervision and searches, she said.

Pretty chaotic scene at 17th and Esplanade, where students are reuniting with their parents pic.twitter.com/ofUrtHf87C

— Shelly Bradbury (@ShellyBradbury) March 22, 2023

Rising teen violence in Denver

Denver teens have increasingly become both perpetrators and victims of gun violence over the last five years.

In 2022, five juveniles were arrested in connection to homicides and 11 others were arrested in connection to non-fatal shootings. Twelve juveniles were killed in homicides last year and 42 were injured in non-fatal shootings.

Gun possession by a minor has become the most common charge in Denver’s juvenile pre-trial services in recent years.The Denver District Attorney’s Office has filed an increasing number of charges for juveniles in possession of handguns. In 2022, the office filed 115 cases — up 47% from the 78 cases filed in 2017 and up 150% from the 46 filed in 2016.

Experts have said that teens often arm themselves out of fear for their safety.

Ben Roy, father to a senior, said this year has been “relentless” for East students.

“It feels like every other week there’s been a perimeter lockdown. It’s just constant,” he said outside the police line on Wednesday.

“I think what scares them, for my son, is how little he reacts now,” he said. “He’s grown numb to it and at other times anxious. I hate this is the world we’ve made for them.”

Denver Post reporter Sam Tabachnik and the Associated Press contributed to this report.

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