Even before the holiday season, 13-year-old Conner Smith was feeling a little like George Bailey at the end of the classic film It’s a Wonderful Life.
“He had lots of friends who showed him how much they cared about him,” Conner said. “Our family and friends have been like that too.”
Conner and his Lafayette family needed a lot of support this past year. The teenager went through a national search for a bone marrow donor and finally underwent his transplant in August in Cincinnati.
The transplant was his only chance at being cured of a rare immune disorder, called Nuclear Factor Kappa B Essential Modifier Deficiency, or NEMO. Conner and his mother, Kristin Smith, spent more than three months living in Cincinnati — inside or close to the hospital where he had his transplant — until finally being allowed to return to Lafayette the week of Thanksgiving.
Doctors have ruled Conner’s transplant a success, but he’s not out of the woods yet and hasn’t had an easy time so far.
“The most annoying side effect has been the BK virus, which has caused lots of pain and bleeding,” Conner said. “It’s getting better, but still is not completely gone, I’ve been dealing with it for more than three months.”
The BK virus commonly reactivates in patients’ bodies after a transplant, especially when aggressive chemotherapy regimens are used, Kristin Smith said. At its worst, Conner’s BK virus landed him in the hospital for six weeks to get daily blood and platelet transfusions.
Conner is still at high risk of developing other infections, which could be life-threatening due to his decreased immune function. So he’s not allowed visitors at his home, and he won’t really go anywhere except doctor’s appointments for at least the next few months.
Conner stays home while his two brothers — fraternal triplets Evan and Hayden — and his younger sister, Kelsey, go to school. Some teens might think that sounds like a good arrangement, but Conner misses his friends and even his classes. He won’t be able to return to school until next year at the earliest, Kristin Smith said.
Despite some setbacks, Conner said he’s more optimistic about life since his transplant.
It “helped me realize how important my family and friends are to me,” he said. “I guess it helped me appreciate my life more.”
Each of the Smith children carry a variation of immune deficiencies, and most recently 11-year-old Kelsey, who’s also a NEMO carrier, has been struggling with a respiratory illness.
“The container of Clorox wipes is my best friend at the moment,” said Kristin Smith of her efforts to keep germs away from Conner and the rest of her children.
She and her husband, Chris, feel grateful for Conner’s success through the transplant so far, but are still apprehensive about how far they still have to go.
“There’s aren’t any guarantees,” Kristin Smith said. “So we’re cautiously optimistic and are just trying to focus on the positives.”
