The year was 2012 and Judi and Kurt Buckardt were expecting their third child. Their daughter, Emma, was not yet 2. Their son, Lucas, was 4.
Out of the blue, Lucas started getting sick almost constantly. Terrible stomach troubles plagued him. High fevers kept showing up. He started to shed weight from his already slight frame. The night before Judi was scheduled to give birth, Lucas began coughing up blood.
Brock, a baby boy, was born the next day.
“Kurt’s in the pediatric wing with Lucas; I’m in the maternity ward with Brock,” Judi Buckardt said. “We had no idea what he had. They checked him for parasites, they checked him for all different viruses.”
Lucas was referred to Lurie Children’s Hospital of Chicago, where gastrointestinal specialists took x-rays of his esophagus, stomach, small intestine, colon and rectum. Over the next few weeks, he underwent multiple biopsies. He tried steroids and antibiotics.
Eventually, his doctors diagnosed him with Crohn’s disease, an inflammatory bowel disease that can cause diarrhea, fevers, fatigue and inflammation.
“We spent the summer of 2012 in and out of the hospital constantly,” Judi Buckardt said. “For 12 weeks he lived on PediaSure shakes. He was so miserable. One night we came down to the kitchen late at night and he was eating fried rice out of the fridge. He turned to us and he had rice all over his face and he said, ‘I’m so sorry. I’m just so hungry.’ It was like, ‘Oh my gosh. There’s got to be something different.’”
Lucas, Emma and Brock, who listened recently as their mom recounted the saga of 2012, giggled uncontrollably at the fried rice story. They’re 11, 9 and 7 now.
And Lucas is healthy now.
“After a lot of blood, sweat and tears,” said Dr. Jeffrey Brown, medical director of Lurie’s inflammatory bowel disease program. “Mostly Lucas’.”
After his initial diagnosis, Lucas tried a series of prescription medications used to treat Crohn’s. Remicade worked for about six months and then suddenly didn’t. Humira worked for a while and then suddenly didn’t.
“It’s like someone would turn off a switch,” Kurt Buckardt said. “His symptoms would come back, and with a vengeance.”
The side effects of the drugs, meanwhile, were ravaging Lucas’ little body. His hair started to fall out. He developed severe psoriasis.
“It was an awful, awful experience,” Kurt Buckardt said.
“If we were in and out of the hospital once a month, it was a good month,” Judi Buckardt said.
By third grade, Lucas had been through half a dozen surgeries and had half of his colon removed.
“During this whole thing, this kid is so resilient,” Judi Buckardt said. “He’s going to school. He’s playing baseball. He picked up the trumpet. Dr. Brown said, ‘I’m looking at this kid and he should be in the fetal position.’”
The Buckardts live in Elgin, Ill. They would routinely drive to Lurie for check-ups and treatments when Lucas finished school around 3 p.m.
“I’d say to him, ‘You don’t look good, buddy. We got your lab tests back and we’re considering if you need to be admitted to the hospital,’" Brown said. “And his response would be, ‘Uh, not only am I not getting admitted to the hospital, I need to be out of here in 15 minutes. I’m meeting my friends at the batting cages.’"
In summer 2018, Brown referred the Buckardts to Children’s Hospital of Philadelphia for genetic testing. Because Lucas was diagnosed with Crohn’s before age 6 (considered “very early onset”), he fell into a group of patients that researchers were just beginning to look at for monogenetic anomalies — one broken gene — causing an inflammatory bowel disease in young children.
Lucas was seen by genetics, immunology, nutrition and gastrointestinal specialists. The family had no history of inflammatory bowel disease, but Kurt and Judi were tested for genetic markers as well.
“Two months later, we got a call from genetics saying, ‘We have an aha moment,’” Kurt Buckardt said.
Lucas had a spontaneous genetic mutation — meaning neither of his parents carried it — that causes an extremely rare condition called X-linked lymphoproliferative syndrome type 2 or XLP-2.
“It affects about one in a million boys — literally, that’s not a figure of speech,” Brown said. “Mathematically, that’s the odds of having this. And a small portion of those patients get the bowel disease associated with it.”
XLP-2 is also associated with another rare disorder called hemophagocytic lymphohistiocytosis, or HLH, and HLH is often fatal.
Judi Buckardt received all of this news in one phone call from Children’s Hospital of Philadelphia.
But there was also a glimmer of hope: XLP-2 — this extremely rare condition wreaking havoc on their little boy for the past six years — could possibly be cured with a stem cell transplant.
“Cured” wasn’t even a word the family had allowed themselves to ponder when Crohn’s was the diagnosis. “Managed” was the best they could hope for.
“The impact of the word ‘cure’ can’t be overstated,” Kurt Buckardt said. “It’s a jaw-dropping moment. He’s been wrestling with this since he was 4 years old and he’s now 11. And we may have a path out of this?”
“To get that news,” Judi Buckardt said, “It’s like, ‘Oh my gosh, there’s a cure.’ But there’s also tremendous risks. A stem cell transplant can be fatal. But if we do nothing, he could develop HLH, which could also be fatal.”
Lucas wanted the stem cell transplant. He told his parents he prayed about it. He told them he was certain it would work. He told them he had no doubt.
“He kept saying, ‘Mom. I know it’s going to be OK,’” Judi Buckardt said.
His parents decided to move forward with the stem cell transplant. In November, they underwent testing to see if their stem cells were a match for Lucas. They had Emma and Brock tested.
“Emma and Brock both wanted to be their brother’s superhero,” Judi Buckardt said.
They asked their friends and relatives to join the Be The Match bone marrow registry in case a match didn’t turn up within their little family of five.
In December, they received another life-changing call: Emma was a perfect match.
“Lucas was like, ‘I want to tell her! I want tell her!’ ” Judi Buckardt said. “He took her into the other room and he was like, ‘Guess what? You’re my match.’ I just remember them embracing.’ ”
When Lucas was just 2, before health complications started to define his young life, he asked his parents for a baby sister. They tried to explain that sisters don’t show up on demand, but Lucas persisted. Eventually, Kurt and Judi were expecting a baby and it would turn out to be a baby girl: Emma.
Emma was born eight weeks premature. She spent the first few weeks of life in the neonatal intensive care unit. She weighed less than five pounds when she came home and had to be attached to a heart monitor.
“He watched over her,” Judi Buckardt said. “He was always her little protector.”
Now Emma was 8 and she would have the chance to return the favor.
In January, Emma took a series of Neupogen injections to prepare her stem cells for extraction. She had a 6-inch catheter placed in her neck. The drugs made her vomit, and she had to stay perfectly still for eight hours after the procedure.
“She just kept saying, ‘I’m doing this for my brother,’” Judi Buckardt said. “She was a real trooper.”
“I never even cried,” Emma said.
That was a Thursday. By Saturday, she was back at ballet lessons.
“The risk to Emma wasn’t so much physically, but emotionally,” Brown said. “If it goes wrong — if her cells started to attack him or they didn’t work and he died from an infection, then there’s the guilt like, ‘I did that to him. Everyone told me I was going to save his life and then he died.’ ”
While Emma was undergoing the extraction, Lucas was sequestered in the hospital for an intense, 10-day chemotherapy regimen. The chemo wiped out his immune system and made way for the new stem cells, which left him physically depleted and at high risk for infection.
“There can be no exaggeration of what this kid has been through,” Brown said. “He has been through hell and back.”
When the transplantation day arrived, Emma and Brock could finally see their older brother. The family gathered around Lucas’ hospital bed. Judi’s and Kurt’s parents joined via FaceTime. Judi’s sister flew in from San Diego. A chaplain blessed Emma’s stem cells.
The transplant worked beautifully. Lucas’ body accepted Emma’s stem cells. He didn’t develop an infection. His body slowly started getting healthier. Heavier. Taller.
In April, he was able to leave the hospital and move back home. He had to avoid grass and dirt and anything that might carry fungus until late June. He had to sit out the summer baseball season. But the symptoms that plagued him for the past six years disappeared.
He weighed 57 pounds in January. Now he weighs 90. He’s grown several inches. He’s playing fall baseball. (Second base is his favorite position.) He’s attending 6th grade at St. Catherine of Siena School in West Dundee where Emma attends third grade and Brock attends second.
On a recent visit to their house, I asked Lucas how it felt to be home and healthy after so many months of doctors and hospitals.
“I just want to say a huge thanks to all the people who supported me and prayed for me and everything they did,” he answered. “All the people at my church and the Ronald McDonald House and Lurie.”
Some families from his church, First Presbyterian in Elgin, had T-shirts made. (#TeamLucas on the front; #prayersforstrength on the back.) Three Elgin Little League teams invited Lucas to throw out the first pitches at their opening games this season. Word got out that he was collecting pop tabs for Ronald McDonald House (where his family often stayed during his hospital visits) and friends delivered him 15 gallons of them.
Kurt and Judi Buckardt run a technology security company together. They said between their Muslim, Jewish, Buddhist and Christian customer base, neighbors and friends, they figured Lucas was being prayed for in every faith tradition they could think of.
“It was an extraordinarily humbling experience,” Kurt Buckardt said. “Everyone came together for one common goal: We want this child to do well.”
Lucas will continue to see Brown every six months for the next few years. Eventually, if all goes well, the appointments will dwindle to once a year.
Emma is fully recovered from the donation. She turned 9 on Oct. 6. The family celebrated with shrimp cocktail and birthday cake. Brock and Lucas smothered her with birthday hugs.
“Every day is a new normal,” Judi Buckardt said.
And normal is huge, especially for this family whose patience and faith and resilience have been aggressively tested.
“If you pick a kid who was due for a win, it was Lucas,” Brown said. “And he got a home run. He’s perfect.”