Jennie wants a new kidney for Royce
"This is our life," Jennie Schwanke said. "This is our world. This is where we spend most of our time."
"This" is the second floor of the Joseph Building at Mayo Clinic Hospital — Saint Marys Campus, where Schwanke's son, Royce, gets dialysis four times a week.
Royce, 7, suffers from branchiootorenal syndrome and is currently in stage 5 kidney failure. He and his adoptive mother have been together now for about nine months, since Schwanke adopted him from China.
The fact that his health was far from perfect was not a surprise. As Schwanke reviewed Royce's records while considering adopting him, she had access to medical records. There was an international adoption doctor who'd reviewed his case, advising that, eventually, Royce would need a kidney transplant.
But love at first sight is a hard thing to ignore, and Schwanke loved Royce right away.
In September 2017, she saw a video of an adorable boy and couldn't get over his infectious energy. By that December, he was still on the "waiting child list," she said. "I was reading his medical files, lying in bed crying. I called my mom and said, 'I think this is my son.' "
A nurse's eye
Schwanke said while the kidney disease was known, Chinese officials were more concerned with Royce's deafness, one of the manifestations of his kidney disease.
But deafness was not a big concern to Schwanke. Royce had good lungs, a good heart, and other than deafness and problems with his kidney, his health seemed fine.
But once she got him home, she could see him deteriorating.
The National Institutes of Health classifies BOR as a rare disease that is characterized by birth defects or anomalies of tissues in the neck, malformations of the external ear, hearing loss, and kidney malformations.
"I got him home on a Friday, and we were admitted (to the hospital) on Monday," Schwanke said.
What followed were six surgeries, including several to ducts that usually close during fetal development but did not in Royce's case, and the implanting of a port for his dialysis.
Over the past nine months, Schwanke, a nurse at Mayo, said she's seen Royce's condition worsen. His kidneys, which barely function, have shrunk. He's gone from thrice weekly dialysis to four times a week.
But she's also seen him thrive. He's gained 3 pounds, a lot for a little boy who wears size 3T clothes at age 7. He talks now and is learning everything from sign language — something he didn't learn in China — to English and other subjects as a first-grader at Bamber Valley Elementary.
A normal life for Royce
Mondays, Wednesday and Fridays are fairly normal, Schwanke said. They get up and get ready for school and work. She needs an extra 15-20 minutes to get his medication and his milk ready. Royce drinks a special milk that can be easily digested by his kidneys.
Tuesdays, Thursdays and weekend mornings are dialysis. Each treatment day is about three hours on the machine plus time getting ready, driving back and forth to Byron, and other errands that total about five hours, or 20 hours a week.
"It's hard to fathom a different life from this," she admits.
But it's also hard to imagine going through this with a different child. Schwanke said Royce knows the dialysis makes him feel better, and he happily comes to the hospital each day of treatments, running into the treatment area, greeting the nurses and going through the routine of getting his weight and blood pressure taken without complaint.
At home, he's affectionate, happy and loves to learn. Like most boys his age, he loves Legos and video games.
"I try really hard to make sure he gets to go and do things," Schwanke said.
Swimming is out because of his port. But he's gone rock climbing and running through a sprinkler.
Life after transplant
Once he gets a new kidney, Schwanke said she'd like to sign him up for an after-school Lego program or maybe gymnastics.
But a new kidney now won't solve all of Royce's problems. Transplanted kidneys tend to last about 10 years from deceased donors, maybe a few years longer from live donors. Plus, he'll be on anti-rejection drugs for the rest of his life.
Schwanke is trying to raise $25,000 through the Child Organ Transplant Association, a nonprofit organization that helps families raise funds for transplants and the ongoing life expenses associated with transplants. According to COTA, lifetime transplant expenses can exceed $1 million.
A fundraiser will be held at Bamber Valley on March 8, and Schwanke is raising funds through a COTA webpage, COTAForRoyce.com .
In the meantime, she is just happy to have found a son who needs her, and the child she needed.
"The shining star in all this is him," Schwanke said, looking at her son as he plays video games and has his blood run through filters. "It's so awesome to go and pick him up from school. He runs to me and can't wait to tell me about his day."
Donations are vital to a healthy life for patients like Royce Schwanke, both money and organs.
To learn more about living-donor transplantation, and how you can be evaluated as a living donor, visit the Mayo Clinic website at mayoclinic.org/livingdonor .
To donate organs after death for the 113,000 people waiting for an organ, visit donatelife.net .
And to help Royce with the life of financial struggles he'll face for what are likely to be multiple kidney transplants, anti-rejection drugs and other costs associated with transplant patients visit his Children's Organ Transplant Association website at COTAForRoyce.com .
There will also be a fundraiser for Royce at his school, Bamber Valley Elementary, called "Destination: Transplant." Scheduled from 10 a.m. to 2 p.m. March 8, there will be a pancake brunch and children’s carnival followed by a silent auction, raffle and a variety of family activities will occur. T-shirts, bracelets and can koozies will be available for a suggested donation on the day of the event.