Elmwood kindergartner celebrates beating the odds
By Sarah Nigbor ELMWOOD – While birthday celebrations are a beloved part of childhood, it’s not often that a “liverversary” is celebrated. One special little boy in Elmwood celebrated his third liver transplant anniversary on Oct. 7, a day his mother had only dared dream of while spending weeks watching him recover in a hospital room.
Kindergartner Owen Weber, the son of Kelsey Leach and Neil Weber, wanted to celebrate his liverversary by bringing his class cupcakes
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Elmwood kindergartner Owen Weber celebrated his third “liverversary” on Oct. 7. Three years ago that day, Weber underwent a liver transplant in Cincinnati after being diagnosed with hepatoblastoma, a rare pediatric liver cancer. Photo courtesy of Kelsey Leach
I and stickers. Then a teacher asked Leach if it could be mentioned in the morning announcements. It soon evolved into “a big celebration that was not expected,” said Leach.
“As soon as Kelsey reached out to us at school asking if Owen could bring something small for his class to celebrate his ‘liverversary,’ we knew we had to do something big!” said Owen’s teacher Stephanie Hartung. “On his special day, students and staff from 4K all the way up through the high school wore Owen’s favorite color, blue, to show Owen just how special he is to all of us!”
As Leach sat in her kitchen Thursday, Oct. 21, she matterof- factly told Owen’s story, though emotion bubbled up here and there, causing her to pause in her recollections.
In April 2018, Owen was diagnosed with autism, at which time Leach and Weber learned children with autism can have food and texture aversions. Owen had been a “very good eater” up until then. He began working with a speech pathologist and occupational therapist through the county Birth to 3 Program. Nothing seemed out of the ordinary.
But, going between two households (Weber and Leach did not live together), things can get lost in the shuffle, as any parent from a split household can attest. At first, Owen’s parents didn’t realize he was constipated; they assumed he’d gone at the other house. But soon, it was apparent he was in immense pain. He was just two-and-a-half years old and couldn’t verbalize what was wrong.
Leach took him to urgent care in Menomonie on a Friday and after an X-ray, the medical staff agreed Owen was constipated and prescribed treatment. By the time Monday rolled around, he was “wailing and writhing in pain” at daycare, Leach said.
“I said, no way, something is very wrong,” she said. “We went to urgent care again, but were upgraded to emergency due to the pain. I thought maybe it was a ruptured appendix.”
Two nurses began to perform an ultrasound, and Leach knew something was wrong when they looked at each other and one left the room. The other kept performing the ultrasound with a stone-face, until a doctor arrived. Within an hour, they were at a pediatric cancer treatment facility in Minneapolis.
“At first you just sit there, they had to have just messed something up,” Leach said. “This doesn’t happen to a healthy 2.5-year-old.”
At first, the solid tumor specialist overseeing Owen’s care thought the tumor was a neuroblastoma. However, a CT scan and biopsy revealed it was a hepatoblastoma, which is a rare form of pediatric liver cancer.
“One in 1 million get it,” Leach said. “He’s a one in a million baby. At least we had a diagnosis and something to set our sights on.”
The tumor had reached “so far down and around” that it pushed on his kidneys, Leach said. The specialist even asked if he’d had a kidney removed. It was no wonder he was in so much pain and had trouble going to the bathroom.
“I would not want to do it again and it gives you more of an appreciation for kids and families going through a diagnosis,” Leach said. “Everyone fights their own battles.”
During their stay at the children’s hospital, they came to know other children on the pediatric cancer floor and their families. They basically lived there from June until September that year. Owen underwent chemotherapy, but it was soon obvious the chemo wasn’t working. After the third round at Children’s in Minneapolis, Owen’s doctors decided to discontinue treatment. His body was shutting down and not responding to the chemo. The only hope was a liver transplant.
“But a lot of pediatric liver surgeons who do transplants were not willing to do one because he was so high-risk,” Leach said. “We knew there had to be someone somewhere that would help us.”
On to Cincinnati
Their search for a miracle took them to Cincinnati Children’s Hospital Medical Center, which is known as an international leader in treating patients with liver tumors.
According to the Liver Tumor Program website, the team is led by oncologists and surgeons who collaborate with other specialists from a variety of disciplines, including hepatology, radiology, gastroenterology, nutrition therapy, nursing and more. Owen’s doctors included Jim Geller, a pediatric oncologist and expert in liver tumor therapy, and Greg M. Tiao, a pediatric general and transplant surgeon.
“We consulted with the whole liver team, which included transplant doctors, fellows, surgeons, psychiatrists, billing, etc.” Leach said. “The team voted and Owen was put on the transplant list.”
Leach received the phone call on a Monday that Owen would be put on a transplant list. However, if he got a liver offer, Owen would have to undergo exploratory surgery to make sure no diseased nodules would hinder the transplant.
“It’s an amazing feeling, but you kind of hold your breath knowing he might not be able to get a liver,” Leach said.
However, a few days later, the call they’d been praying for came. A little boy from the South who had drowned would be Owen’s donor. With that hope came guilt and sadness.
“It messes with your mind,” Leach said. “Knowing your good fortune is someone else’s tragedy.”
During Owen’s exploratory surgery, three nodules were removed; each was benign. Then on Oct. 7, 2018, Owen received his new liver and surgery was successful.
Owen was supposed to go through “clean-up chemo,” which lessens the chance of the cancer coming back. The family was all set up to stay in the Ronald McDonald House during that treatment, but they never made it there. Owen did not respond well to the additional chemo and doctors nixed it after two rounds.
“It was supposed to take six weeks, but it ended up taking three months,” Leach said. “His bone marrow wasn’t bouncing back and it needed to be in a certain range for them to continue.”
When he was moved into the maintenance chemo portion of his treatment, he handled that terribly as well, Leach said.
“He just needed to be done,” Leach said. “It was doing way more harm than good.”
The doctors were very optimistic they’d removed all the cancer and did weekly labs to measure tumor markers, which are substances found in higherthan- normal levels in the blood, urine or tissues. These levels were dropping by half after each test, which is what the doctors wanted to see.
However, Owen was in the hospital until February. It was a long road of trying to figure out his nutrition, because everything the doctors tried was not working. Through his feeding tube, Owen needed consume 45 or 46 milliliters per day. He slowly went up about 1 milliliter per day, Leach said.
“We were transferred to a rehab floor where he learned how to walk again and built strength,” said Leach. “Then it was on to the Ronald McDonald House for a couple of weeks, because he was still gaining weight.”
The tumor had pushed on his stomach and intestines for so long, that it was a struggle to get his nutrition levels to where they needed to be.
“He really tanked in that department,” Leach said. “Everything had to stay in a normal range before we could go.”
Support from friends, family and the Elmwood community kept Leach going.
“Elmwood and all of the surrounding communities have been wonderful,” Leach said.
Owen had his own Facebook page (“Team Owen”) where Leach published updates about his progress. The comments and encouragement helped her during the long hours.
On Owen’s third birthday, his aunt sent a huge farmthemed banner to the hospital and ordered cupcakes to be delivered from a bakery in Cincinnati. The hospital provided a Lorax and Moana cake.
While Owen was in Minneapolis, people could come and go for visits since Elmwood wasn’t too far away. It was much, much harder for Leach in Cincinnati, though Weber, Owen’s brother, Leach’s parents, her boyfriend Brewster and others visited when they could.
“We were confined to his room,” Leach said. “Risk of infection was high. He liked to sit in the doorway to look out the window at other kids, but he couldn’t understand why he couldn’t go out.”
The last month of Owen’s stay in Ohio, Weber took Leach’s place in Cincinnati so she could come home and ready the house for Owen’s return.
At the time of Owen’s diagnosis, Leach had been working at the Elmwood School District daycare. She had to take a leave of absence when Owen was diagnosed. She said her bosses told her they’d hold her job for her, so she was grateful to not have that worry. Two benefits were held for Owen, one at the Waverly Bar and one at Booz Bar in Knapp.
“We made it through Owen’s whole treatment period without having to worry about money,” Leach said. “Some families don’t have that. All of the families – it was a great effort of many people.”
On a frigid February day in 2019, Owen was allowed to go home. He immediately started outpatient therapy at Foundations Therapy in Menomonie, where he works on his speech, occupational therapy and physical therapy.
“He still has some residual effects,” Leach said. “When you don’t walk or crawl for so long, your muscles tighten up, so we’re still working on that.”
He also had hearing lost which is a direct result of the chemotherapy he endured. The chemo caused him to lose his hair, including the hair in his ears. Inside an ear, about 15,000 microscopic hair cells sense movement in the cochlea, then carry that sound to the auditory nerve. The nerve then sends the movements and vibrations to the brain, which interprets the sound a person hears. Owen wears hearing aids.
“He has severe high frequency hearing loss,” Leach said. “He can hear most things, but not the ‘s’ or ‘sh’ sounds. But he’s not supposed to be able to hear airplanes and he can. There are so many things where we’re like, ‘huh?’” Last year, Owen was supposed to attend 4K, but the COVID-19 pandemic curtailed those plans. Because he is a solid organ transplant survivor, he will be immunosuppressed for the rest of his life. His parents feel fortunate for Beyond Behavior LLC in Hudson, an applied behavior analysis center that provides comprehensive and focus treatment to children and adolescents diagnosed with autism.
“It really helped him get ready for kindergarten,” Leach said. “Everybody says he’s doing great. He is very stubborn.”
Owen must go for checkups every six months with transplant doctors at the University of Minnesota or in Cincinnati.
“After two-plus years, it’s a sigh of relief,” Leach said. “But we’re still not out of the woods yet. There’s always the chance of secondary cancers. He understands things a 6year-old shouldn’t.”
Leach considers her family fortunate, despite everything they’ve been through. She just tries to make everything, including his routine lab checkups, seem as routine and normal as possible.
“He loves school and he has friends,” Leach said. “He loves riding the bus and he loves recess. He loved handing out cupcakes and smiling liver stickers at school. I’m not sure he knows the magnitude of how absolutely loved and lucky he is. Hopefully one day he can look back at his page and all the cards and it will just be a chapter in his book.
“We are still so, so thankful for the huge following that he still has. Thank you cannot be said enough.”
Another special day occurred on Oct. 22 – Owen celebrated his sixth birthday.