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Harrison Barnett is ready for the next step. Ready to catch up in height with his younger twin sisters and classmates. Ready to be able to play in a swimming pool. Ready to no longer be tethered to the pediatric dialysis unit at UNC Health Care.
On Monday, 9-year-old Harrison will enter the hospital and begin a very risky and intense, four-week desensitization process to prepare him for a kidney transplant.
“He’s ready,” said his mother, Rebecca Barnett. “He’s been counting down the days.”
Harrison is used to the hospital — goes there three times a week for dialysis — and has spent many weeks in a hospital room before. But this time it will be different.
“I think he’s truly counting down the days now because he believes he’s coming home with a kidney,” his mother said.
Harrison was born with hypoplastic kidneys that were too small to work efficiently. At age 2, he had a kidney transplant, but it failed. Barnett said doctors fought to save it for more than a year. In the process of trying to save the donated kidney, his body developed large amounts of antibodies to fight human tissue. It’s those same antibodies that have made it almost impossible to find a kidney for Harrison.
In June, a kidney was found, and it looked like it was finally Harrison’s turn for a transplant. But at the last minute, the kidney didn’t work out because of Harrison’s aggressive immune system. It wouldn’t have been safe for Harrison, his mother said, because his body would have rejected it.
It was a huge blow and an eye-opener for Barnett and her husband, Charlie.
“We spent the summer just listening to how sensitized he is, how resistant his body is to the entire world just about and how hard it would be to transplant him.” Rebecca said. “It wasn’t impossible, but it was like finding a needle in a haystack.”
Although they had talked before about desensitization, they came to the realization it was the right time.
“We are really stepping out on faith,” she said.
Harrison has had more than his share of medical problems, including infections at the catheter site where he receives dialysis. The antibiotic he was given to fight one of those infections left him deaf in both ears a few days before Christmas in 2013. He now has a cochlear implant so he can hear.
But Harrison is in good physical shape right now and hasn’t had an extended hospital stay in more than a year, Barnett said.
Quality of life issues have also arisen in the Barnett household.
As Harrison gets older, he questions why he is smaller than his classmates and more and more realizes how he is missing out on things. For instance, his sisters visited their aunt in Texas over the summer, but Harrison couldn’t go because he needs to be near Chapel Hill for dialysis three times a week.
And over the summer, Harrison continued to have blood pressure issues at dialysis, with the numbers reaching the danger zone as high as 220/180.
“You start to realize, if he doesn’t make it because we didn’t find a kidney, that’s one thing. But if he doesn’t make it because of his heart can’t continue to do this, it’s another,” Rebecca Barnett said.
Once they considered everything, the Barnetts decided it was the right time. They could see the whole situation was starting to wear on Harrison. “I can tell he is tired,” his mother said. But it still wasn’t an easy decision.
“We’re really scared about this,” she said. “It was a very serious talk with the doctors. There are no guarantees.
“We feel like we have come too far to give up now,” she added. “We think it will end with a beautiful story. We think it will — honestly.”
Donor a good friend
On Monday, Harrison will be admitted to the hospital in Chapel Hill. It is a place he knows well. The doctors and nurses know him, too.
Doctors will attempt to manipulate Harrison’s body with chemotherapy and a process of blood purification process known as plasmapheresis. Every other day he will receive treatments to remove the antibodies from his blood that make it almost impossible for him to match a donor. His treated blood will then be put back into his body. He will continue to get dialysis on the other days.
The risk of infection is great during this time, so he will not be able to have visitors, including his 8-year-old sisters. Barnett is not even sure if she and Charlie will be allowed in his room at times during the four-week process.
At the end of the treatments, he will have a kidney transplant if everything goes as planned. It’s already scheduled for Dec. 5.
For years, local family and friends have offered a kidney to Harrison. There was never a perfect match. But once the desensitization is over, the needs change, and he will be easier to match.
It won’t be a normal transplant. The procedure will basically be tricking Harrison’s body, Barnett said, and they know the antibodies will return. But the medical staff will be proactive.
Doctors looked back over the list of possible donors who had offered kidneys and decided on the mother of one of Harrison’s best friends and classmates at Wilson Christian Academy. A second person has been identified as a backup. The Barnetts have not been told the name of the backup donor.
“When you don’t know who the donor is, you are very thankful,” Barnett said. “But when it is somebody who is very close to you, it’s just beyond the definition of a friend.”
Barnett said she found comfort in knowing a really good friend would be the donor.
“It was like, ‘This is going to work; this is going to work,’” she said. “It was the comfort I needed — like the last piece of the puzzle.”
legos and NCSU
Harrison, who knows his way around the hospital, has requested a few things to make his stay more comfortable.
He wants a rug for the hospital floor so his feet won’t be too cold. He wants his N.C. State University beanbag chair and his own sheets for the bed.
He also wants his XBox hooked up at the hospital and some Legos to put together. Harrison has had to spend a lot of his time indoors and confined to his bed. It’s during those long hours that he’s become an expert Lego builder.
Barnett is hoping Harrison will feel up to playing with his toys. His doctors think the treatments will make him sick.
The process is not often used with children, she said, because few children are in Harrison’s position with a failed transplant.
On Thursday, Harrison’s third-grade classmates and teachers threw their friend a get well party. Barnett’s co-workers at Middlesex Elementary School wore Team Harrison T-shirts this week to show their support as well.
The next month or two will be very hard for Rebecca and Charlie. They wanted to share this part of Harrison’s story with the friends and strangers who have prayed for their son for so many years.
“Charlie and I, we’re scared,” she said. “We don’t like to put the ugly out there for everybody else, but we think it will be a wonderful ending for a beautiful Christmas.”