A faithful journey: Levi Dybdal lived life to the fullest

Levi Dybdal’s story is a journey of perseverance, positivity and unwavering faith.

“Levi was a great young man. He was an inspiration for many of our students and staff. Levi always had such a positive attitude, and you would have a hard time finding a more polite and respectful young man. I didn’t know Levi long but I feel very fortunate to have known him for the time that I did,” said Scott Axt, Seward High School principal.

Levi, 17, attended St. Vincent de Paul School, Seward Middle School and Seward High School. He was beginning his senior year at SHS. He passed away Sept. 5 in Omaha.

Levi was diagnosed with cancer at the age of 8, but he never let it define him.

“He was always happy, even through everything he went through,” Jon Dybdal, Levi’s dad, said.

Levi was diagnosed with acute lymphoblastic leukemia (ALL), Ph-positive (a mutation of the 21st chromosome). The Ph-positive condition made relapse risk a lot higher from the start. Levi’s treatment plan was changed because of the extremely rare condition.

“He was on a much more intensive treatment from the get-go. Then, we knew if he had a relapse that we would have to go for a bone marrow transplant,” Tausha Dybdal, his mom, said.

Jon and Tausha said for kids who have the cancer but are not Ph-positive, the typical treatment is three years of chemotherapy, and the kids can participate in different studies for treatments. Levi was not eligible for a study because he had Ph-positive ALL. Fewer than 1 percent of all kids diagnosed with ALL each year are Ph-positive.

Levi finished three years of cancer treatment in 2010. Doctors took his port out in the first week of January in 2011.

From what they could tell, he was cancer free, but Levi got the flu in the last week of January. Their pediatrician referred them to doctors in Omaha and their fears were confirmed.

“That was a really hard day to find out he had a relapse because he had just been a champion to that first three years of treatment,” Tausha said.

Bone marrow transplant

Tausha was pregnant with Erich (Levi’s younger brother) at the time. Doctors asked Tausha to fill out paperwork about cord blood in case Erich was a donor match for Levi. They knew Levi would need a bone marrow transplant. Erich was not a match nor was any other family member so they looked into the international donor pool.

The first potential donor declined to donate so the second-best match was contacted, and he agreed to help. The Dybdals believe he was from a European country.

Tausha and Jon encourage everyone to get added to the donor pool.

“Even if you sign up to be a donor, you don’t have to donate if you’re ever contacted. That’s important for people to know. It’s an awesome opportunity to be able to try to help someone, but if you’re in a situation where it’s not right for you to do that, you have the option of saying no,” she said.

Levi underwent high-dose full body radiation in 2011 to kill his immune system in order to prepare his body to accept the donor’s new immune system during the transplant, a process that took three to four hours and was similar to getting a blood transfusion.

A concern for people who have a bone marrow transplant is graft-versus-host disease, a condition that Levi developed and that ultimately took his life.

Levi’s new immune system could not recognize what it was supposed to be fighting off. The disease ultimately started attacking healthy ares of his body.

Jon said the new immune system did not recognize Levi’s body as its own so it was fighting him. It was an ongoing battle for Levi. He took anti-rejection medicine and steroids to try to subdue the disease until the immune system recognized his body. The Dybdals said the hope was that the immune system would have regenerated cells so that his body and the new immune system would work together. Over the years, they kept trying to treat it, but they said the disease kept attacking Levi as it moved through his body.

“It was just a race,” Jon said. “You can’t see it until it’s already in an aggressive state, and you’re seeing the damaging effects.”

Jon and Tausha said with graft-versus-host disease, it’s often said that you trade one disease for another.

“And that’s truly what happened for Levi,” Tausha said.

What never changed for Levi was his positive spirit.

“That was the thing about Levi is no matter how knocked down he was about cancer, he didn’t ever let it show that it was knocking him down. He fought it. He fought it as well as he could from the very beginning,” Tausha said. “He just wanted to be as normal of a kid as he could. We’ve been saying, he lived his life in fast-forward.”

Jon and Tausha said Levi was an active, and even ornery, young child but they did see a change after his diagnosis.

“It was kind of a check back, and he wasn’t quite as ornery and he was a lot more patient and tolerant of things he wasn’t before,” she said. “You just saw this unfortunate change in him of maturity. You want your kids to grow into but not overnight at 8.”

Tausha said Levi understood the reality of what had happened to him at a young age.

Humor

He did maintain his sense of humor. His parents remember him filling up some syringes with water with the help of a nurse to ambush an unsuspecting favorite nurse of his. They also remember him having fun with hairstyles as he lost his hair during treatment.

“He would take a lint roller and make a mohawk,” Jon said.

Tausha remembers a day when Gov. Dave Heineman stopped by the hospital with a teddy bear for Levi. Levi was playing a game on his computer. The state troopers who came ahead of the governor started talking to Levi about the game.

“So the governor comes in and he’s kind of standing there watching the troopers have all this conversation with this kid and so finally he goes, ‘Well, Levi, I have a bear for you,’ and I thought ‘Oh no,’” Tausha said laughing.

Tausha said Levi enjoyed meeting people but he wasn’t too often star-struck by famous people. She said he really liked meeting the college athletes.

Through the Make-A-Wish Foundation, Levi was able to meet Bo Pelini at a dinner. The Pelinis and Dybdals became close family friends over the years.

Tausha said Pelini is an amazing person and friend. He invited Levi to watch practice anytime.

“Bo just dropped whatever he was doing and spent an hour talking to Levi,” she said. “He’s a very good person. He’s a giving person. We loved his football players and his family, and he loved Levi.”

For Levi’s wish through the foundation, he chose to go to Hawaii with his family in 2009. He wanted to do land, air and sea in Hawaii and was able to swim with the dolphins in the ocean.

Jon and Tausha did everything they could to find a way to give Levi life experiences. He played football in fifth grade and enjoyed showing animals at the Seward County Fair. He loved watching football, specifically the Huskers, and he also enjoyed watching hockey.

“He did fencing, he did football, he did fishing, he drove the go-cart. He got to drive a car. He got to be 16 and drive a car,” Tausha said.

“He got to wreck a car,” Jon said.

Tausha said he also got to experience being pulled over and questioned about being old enough to drive a car.

“He was so little,” she said.

Jon and Tausha appreciated the fact that Levi had many amazing experiences in his life.

“He and Grant Wistrom had a baked-bean eating contest,” Jon said.

Levi also met Texas Gov. Rick Perry on a trip.

“Levi just had this magnetism about him that he didn’t even have to do anything but that governor, he was hot, so he took off his blazer, and he was like ‘I need a place to put this.’ And he looked at Levi and said ‘You look right,’ and he puts his coat on Levi and it makes the evening news in Texas,” Tausha said.

On one trip, Tausha remembers Levi coming home with a gift for every person in the family.

“And that was Levi. Every Christmas, people would give him money to spend on himself for what he wanted, and he would save that money that people would give him and he would buy gifts for all of his cousins and his family,” she said.

Tausha said Levi matured beyond his years.

“I kind of say he was an old soul by the time he died,” she said. “He had this thing that happened to him that just started fast forwarding his mind and being to well beyond his years of 17.”

“He got life,” she said. “He trusted God with his whole life.”

Tausha said Levi probably had a better understanding of what was happening to him than she did.

“And he would protect me from what I think he knew was happening to him in his life,” she said.

Around Easter time this year, Jon said Levi was sick from a line infection, and he had been declining before that.

“This Easter, I had a very overwhelming washing of grieving for Levi that he was going to die, like I was grieving him dying and he wasn’t dead, and he wasn’t really even that sick yet,” Tausha said.

Tausha said she did a lot of grieving and praying during that time.

They got through Easter but then Levi couldn’t eat very well. He had a feeding tube for about a month. It had gotten blocked and had to be pulled out. When doctors took x-rays to prepare for the new tube, they found pneumatosis, free air floating in the body that creates extreme pain.

“Levi had no pain. So the doctors were very confused,” she said.

Tausha said the doctors were concerned then that Levi was going to die, but the pneumatosis eventually cleared.

Doctors were then concerned that Levi’s bowel would rupture and that they wouldn’t be able to save him.

“We wouldn’t even be able to life flight him to do anything,” she said.

The Dybdals discussed the options with doctors but didn’t accept that Levi would have to stay in the hospital waiting to see if it would rupture.

“When he’s not in pain, he needs to go live life,” Tausha said.

World Youth Day

One of the highlights of Levi’s life came in July of this year. Levi had signed up three years ago to attend World Youth Day in Poland in July of this year. Tausha said at that time he signed up, his condition was far better, and he could still walk.

Tausha, Levi and Levi’s brother Lance traveled to Poland this summer to attend the event. Levi’s other siblings, Erich, Wyatt and Jessica stayed with Jon in Nebraska.

“And I’m like how are we supposed to take this kid who, he’s on TPN, he can’t eat. He just, he was a huge medical-need person and fragile,” she said.

Levi wanted to see the Pope, and his parents wanted to make it possible for him. Tausha and Jon made arrangements for Levi to go on the trip. Tausha had two carry-on bags on the airplane, one with 75 pounds of TPN and emergency fluids and the other full of medical equipment.

“I had a death grip on those bags,” she said. “You just accepted whatever you had to, to make that trip happen for him and it was an amazing experience for him. It was a very good spiritual experience for him.”

Tausha said Poland is one of the richest places in the world for canonized saints for the Catholic Church so they had an amazing experience together. They were able to see where many of the well-known saints were buried and saw their relics.

Levi also learned about the culture and food in Poland.

“He loved good food and the idea of cooking,” she said. “He just appreciated everything.”

Tausha said the trip was a pilgrimage, not a vacation and was difficult.

“It was a tough trip for healthy people to make which is why I know God was with us and with him every day of the trip, to keep him well enough to keep up with the hiking through the mountains, the hills, through all of these shrines we were going to, and riding on the buses for hours,” she said. “And we went to the concentration camps. It was a tough trip but God just made it happen and He took care of us.”

Tausha remembers trying to get into a park for the event which was packed with about 3 million people shoulder-to-shoulder.

There were some kids from Chile who were weaving through the crowd creating a traffic problem.

“I get frustrated and I said, ‘If the Chileans would just chill out, they would realize we’re all trying to get to the same place,” she said smiling.

A girl looked back at her and then turned and yelled something in Spanish. Then, others were yelling in different languages.

“Pretty soon, it was like Moses parting the red sea. The crowd just opened up,” she said.

A priest told her that the people were yelling, “Let the wheelchair pass.”

“And we just walked into the park. It was amazing,” she said.

Tausha said the plan was to do the adoration in the park Saturday night and then travel back to the city to sleep. The group they were traveling with was planning to sleep in the park to prepare for the Pope’s appearance and mass in the morning. Tausha said she knew Levi would not be able to stay in the park. Their transportation back to the city that night fell through and it was about a 10-mile trek back to the city.

The three left the park at about 9:30 p.m., but it took about two hours to get through all of the people.

“At 11:30 at night, I had this 10 miles, and it’s just me and Lance and Levi. Thank God I had Lance. Someone said about Lance on the trip that Lance is Simon of Cyrene where he, Lance really helped Levi carry his cross by pushing him everywhere he needed to go especially that night. There were sand areas,” she said.

As they were walking back, they found a group of Americans who walked with them.

“I thought, God you sent me 15 guardian angels to help us get back to the city,” she said.

The group helped Tausha, Levi and Lance eventually get a taxi, and one of the women rode with them and helped pay for the taxi.

“God just has such a hand in everything, and I truly believe God made Levi well enough on the trip to very much enjoy it,” Tausha said.

Meeting the Pope

Levi was in the crowd the next day to see the Pope as he walked by, waved and blessed the people.

“We see him coming, and he meets Levi’s eyes and he waves at Levi and smiles, and then he moves to the next person,” Tausha said. “He’s about ready to get out of the park because we’re at the end of this thing, he turns around over his shoulder like this and he looks back at Levi and he waves at him one more and looks at Levi. And Levi goes, ‘Oh my God, did you see that? He looked at me. He looked at me. I can’t believe how excited I am. It’s like I’m a little school girl.’

“It was the only time in his whole life where I saw him truly star struck by someone famous,” Tausha said.

Tausha said it was an amazing experience to share.

Coming home

When they arrived home, they were preparing for the Seward County Fair and for the start of school.

Levi was sick for a couple of weeks, and Tausha was concerned that something more serious was going on.

The doctors ordered lab work for Levi but it all came back clear.

Jon said it was always difficult to know Levi’s level of discomfort and pain because he never complained.

On the Wednesday before Labor Day weekend, they noticed he was sleeping more.

On Friday, Tausha wanted to take him in to have a feeding tube put in. The doctors wanted to hold off until after the holiday weekend.

Jon said there was nothing that gave them any clue that something was going to change.

“Nobody could tell what was going on. And there was nothing specific that said yes, get him up here,” Tausha said.

She believes that was done by God on purpose so that Levi could remain at home.

“God made him well and we had this holy trip to Poland and we came home and he got to do the fair and I think God said, OK, it is time. It’s time. But he wasn’t going to announce it to the world that you’re dying but he was truly dying and we didn’t even really didn’t even know it until it happened,” she said.

Over the holiday weekend, Jon said Levi was tired and uncomfortable.

Tausha called the doctors in Omaha and said they were coming, if for anything, pain management. She thought they would send them home but the doctors decided to take some x-rays just to check. Everything looked fine.

“But Levi is just so exhausted,” Tausha said.

Tausha said at that point, the doctors didn’t know what they were going to do because they had tried everything and nothing was working. Tausha said she was mad at them for saying that but it was the truth.

Levi stopped breathing at 5 a.m. the next morning with Jon by his side.

“The medical staff had no reason to think this was going to happen,” Jon said.

Jon said Levi was trying to sleep throughout the night but he was uncomfortable. Doctors tried to resuscitate him and he was placed on life support. During CPR at a later time, the Dybdals had to make the difficult decision to let him go.

“In the end, we prayed a lot. We prayed his whole life for God to heal him and I believe that God gave him the ultimate healing by letting him go,” she said. “We’re going to miss him so much.”

Tausha and Jon said Levi loved other people.

“It was always about everybody else and never about him,” she said.

“He had strength like no one else that I have other known,” Jon said. “I don’t know that we have a full grasp on his impact yet.”