Growing stronger every day, fifth grader recovers with a lot of help from his friends

Michael Menne, Mitch Ross and Ben Coates crack up at a joke told by Lukas Nedelco, via Skype technology. Lukas is attending Our Lady of the Presentation School by computer this year as he recovers from a bone marrow transplant that has cured his chronic granulomatous disease. (Kevin Kelly/Key photo)

By Kevin Kelly
Catholic Key Associate Editor

LEE’S SUMMIT — Don’t ask Lukas Nedelco who his best friend is. He’ll give you a look of utter bewilderment, as if you just asked the dumbest question in the world.

“I have 60 best friends,” he said.

And he does — the entire fifth grade class, all three home rooms, at Our Lady of the Presentation School.

He has seen them all together exactly once since before Christmas 2009. That was on a glorious afternoon last Sept. 24, the day after he returned home from Cincinnati Children’s Hospital.

Lukas begged his mother, Susan, to let him go outside to breath fresh air and feel the sun on his face. Mom let Lukas spend those few precious minutes outside, as long as he wore his surgical mask to protect him from any infection.

They weren’t out there long when in the distance they saw a large group of children walking down the street. No big deal. Probably on their way to the nearby park for a field trip, Susan thought.

Then they turned down the street where Lukas lives, and mother and son recognized the distinctive Our Lady of Presentation uniforms.

It was his 60 best friends — the entire fifth grade class, all three home rooms — his teachers and principal Jodi Briggs, walking the 1.7 miles from the school to welcome him home with prayer and a rousing chorus of “For He’s a Jolly Good Fellow.”

Lukas calls them his friends. Jim and Susan Nedelco call them 60 blessings.

“You can’t go through something like this and not have it strengthen your faith,” said Jim, Lukas’ father. “One of the kids had a lemonade stand to raise money for Lukas. How can you respond to that?”

Their son’s ordeal has also tested their faith, the Nedelcos admit.

“You might ask God why he lets kids suffer like that, but I’m not so sure now that God has anything to do with kids getting sick,” he said. “God provided all the support around us, all the doctors, family, friends. What more could you ask? We put Lukas in the best possible circumstances we could, and that certainly includes Our Lady of the Presentation School.”

Lukas hasn’t complained much, only when the pain or nausea becomes too much for an 11-year-old boy to handle. In fact, he will tell you he has two “birthdays” — Nov. 22, 1999, which was the day he was born, and March 11, 2010, the day he received his bone marrow transplant in Cincinnati that has cured the rare blood disorder, chronic granulomatous disease (CDG), he has had since birth.

Lukas was two years old and constantly running fevers when his disorder was discovered, Susan Nedelco said.

His parents have become experts on CGD, which prevents infection-fighting blood cells from doing their job.

“It used to be a death sentence,” said Jim Nedelco. “Probably before they knew what it was, they would have just said the child had died of pneumonia.”

Lukas was “lucky” — if a child with an immune system disorder can be lucky — that it was diagnosed when he was still an infant, well before infections started breaking down his vital organs.

He was put on a regimen of oral antibiotics and three inoculations a week of interferon gamma-1b, a therapy discovered only in the mid-1990s, and could have lived a normal life. Maybe.

“Since it’s so new, they don’t really have any data about the long-term outcome,” Jim Nedelco said. “They couldn’t say how long he could expect to live.”

Three trips a week to Children’s Mercy Hospital in downtown Kansas City for his inoculations weren’t easy.

“He would have done anything to get rid of those shots,” Susan said.

The Nedelcos learned from physicians that researchers discovered a cure. Not a therapy, but full cure.

Using adult stem cells in bone marrow from a “perfect-match” donor, Lukas could be cured of CGD, but the procedure was not without risk, and certainly not without pain.

The Nedelcos did more research to discover that the world’s leading hospital in juvenile bone marrow transplant was Children’s Hospital in Cincinnati. But the process was still so new and the disease so rare, that even the team led by Dr. Stella Davies had only done 11 bone marrow transplants on children with CGD, with complete success in nine cases.

The medication and inoculation therapy was working and Lukas was doing just fine when his parents faced a gut-wrenching decision.

“He was just a normal kid. He never had any serious infections, and even the kids in his class didn’t know,” Susan said. “He never asked why he had this disease, and he never carried on about it. He just didn’t tell anyone about it.”

His parents could have let Lukas continue on with his medication. Or they could put him through a procedure that would be close to hell for an entire year, hoping to rid him of CGD once and for all.

A bone marrow transplant meant extensive chemotherapy to destroy all of Lukas’ remaining white blood cells to allow the donor cells to grow, and that meant pain, nausea, and months in a hospital in as sterile an environment as possible, and at least a full year out of school.

It also meant waiting, hoping and praying for a perfect match on the national Bone Marrow Registry. Neither Jim nor Susan, nor Lukas’ big sister Sophie, a seventh grader at Presentation, were matches.

It meant months of follow up drugs, including those administered at home by IV tubes still planted in Lukas’ chest, nearly a year later.

It meant all his blond hair would fall out, and steroid treatments that would radically change his appearance.

The Nedelcos buried themselves in research. They peppered Lukas’ medical team with questions.

And they turned to God.

“We did a lot of soul-searching and praying,” Jim said.

“We knew he was going to be very sick before he got better, but we researched a lot and found out that with a lot of kids getting older, their bodies are so broken down by the infections they get that they can’t handle a bone marrow transplant. If we were going to do it, it had to be now.”

You got to be tough to go through a bone marrow transplant, and Jim said his son is tough.

In fact, Lukas is his father’s hero.

“I’d say so,” Jim said. “It’s just something in him, and I don’t know what it is. It’s his natural disposition that helps him cope with everything he’s been through.”

Around Lukas’ 10th birthday in the fall of 2009, the Nedelcos reached their decision.

And the miracles began to happen.

Two perfect donor matches were discovered. One was a 22-year-old woman who backed out. Another was a 47-year-old woman who agreed.

That’s all the Nedelcos know about the donor. Someday, they hope to meet her, but the National Bone Marrow Donor Program won’t contact her until a year after Lukas’ transplant, and then the decision to meet the child whose life she changed forever will be entirely hers. They hope she agrees.

“We are looking forward to that day,” Jim said. “What greater gift can you give than to save somebody’s life?”

“It’s actually a miracle,” Susan said. “You have to have faith and trust in God that he’ll find that perfect match. This was meant to be.”

Lukas was pulled out of Presentation School at the Christmas break in 2009. He checked into Children’s Hospital in Cincinnati in January, and began the chemotherapy to prepare him for the bone marrow transplant a year later.

His 60 best friends, then fourth graders, didn’t know why Lukas didn’t return after Christmas.

“They totally didn’t understand what was going on,” said Susan Reaka, his fourth grade home room teacher. “We prayed for him every day.”

The prayers were not wasted. Lukas, with 60 best friends behind him, slowly got better and was able to go home. But not back to school, until his immune system rebuilds itself completely. That might not happen until next fall, and that is if everything goes well, his parents said.

In the meantime, how could Lukas, a straight-A student, keep up with his class?

The answer wasn’t if it could be done, but how, said Presentation Principal Jodi Briggs.

“We had to figure this out,” Briggs said. “We would do this for any of the kids in this building.”

Fifth grade teacher Emalee Rogers suggested using Skype technology to bring Lukas from his home, by computer, into the classroom where he could see, hear and participate in every lesson.

Using the technology, he not only is linked by camera and voice to Presentation, Rogers’ home room is linked to him. Every day.

“He is such an amazing student,” Rogers said. “When you think of what he’s been through, it’s humbling. As a teacher, what more can you ask for but the love of learning that Lukas has. It’s a gift to have him.”

He has also inspired his best friends.

“I’m a big complainer, and he doesn’t complain at all,” said classmate Kimlan Phan. “He taught me to complain a little less.”

Yes, he’s treated differently, and he gets to “go to school” from home. But so what, said Maima Lewis.

“It doesn’t mean anything if your different,” she said, pointing to the computer screen with Lukas face beaming at the class. “He taught me that even if your sick, you can’t feel tired of going to school. That doesn’t stop that guy over there.”

“He’s really determined and won’t give up,” Madison Clark said.

“He is the same guy he always was,” said Ben Coates. “He’s funny and still a great guy.”

So funny that even by long distance, he’s the class clown. And a computer whizz. If a particular lesson is boring, he’ll put computer “z-z-z-z’s” in a balloon coming out of his head. Or he will put on a computer stovepipe hat. Or he’ll put a computer clown next to him on the screen beamed into his class.

But it’s still not the same, his classmates said. They want him back, in school, with them.

“A lot of people say, ‘I don’t want to go to school.’ But not Lukas. He wants to be here,” said Reilly Atkins.

“We want him because he’s our classmate,” said Mitch Ross. “We want to put a smile on his face.”

“You can’t give up, no matter what,” Courtney Hiatt said.

“He taught me that no matter how hard life is, you should always think of your friends,” said Megan Warneke.

Lukas does think of his friends. In fact, if he gets permission from his doctors to return to school next fall, Lukas Nedelco may be the only child in Lee’s Summit for whom next summer can’t end fast enough.

“When they change classes and go to social studies, I don’t get to see them,” Lukas said. “They get to do lots of stuff that I don’t get to do, and I miss out on it.”

But he isn’t missing the thoughts and prayers of his 60 best friends.

“The kids pray for him all the time,” said religion teacher Carol Feuerborn. “That is faith alive, and our kids get it because of Lukas.”

In Denise Russell’s fifth grade home room, where Lukas was supposed to be assigned but isn’t wired for Skype technology, there is an empty desk with Lukas’ name on it.

“They still think of him as part of the class,” Russell said. “They have taken to heart all the hardships he’s been through, and they pray for him every morning.”

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  • Mooretom57

    Wow. What a kid! Amazing story and testament to faith and love.

Monday
September 01, 2014
Newspaper of the Diocese of Kansas City ~ St. Joseph