KAHLEN SALIS: AN UPDATE
JEREMY WALTNER – PUBLISHER
This week Friday, students at Freeman Public Schools will say goodbye to their classrooms, their teachers and their friends they won’t see much of during the summer break.
For 13-year-old Kahlen Salis, those goodbyes have already been said and came on Wednesday afternoon, April 27 — one day before the seventh grader finished her schoolwork and made a temporary move to St. Louis with her mom and dad to be closer to a medical treatment that could save her life.
Kahlen is waiting for a liver transplant — the byproduct of health issues that go back a decade, to when she was first diagnosed with Dyskeratosis Congenita, a bone marrow deficiency that required a life-saving bone marrow transplant.
“It was always a possibility that this could happen,” says Kahlen’s mom Kris, who said her daughter lived a healthy eight years following that successful transplant of 2012.
“We had no problems — certainly nothing we couldn’t deal with,” said Kris. “But now we’re starting up with something else again.”
Actually, the medical concerns began escalating in August of 2020 when Kahlen began developing headaches and shortness of breath during volleyball practices. Tests through Sanford Health revealed a condition called shunting in which her lungs were not getting the appropriate amount of oxygen. Kahlen learned remotely for almost the entire 2020-21 school year and was initially put on oxygen only at night, but as the condition worsened, the need for supplemental oxygen became more extreme, and in April of 2021 she was fed from a tank 24 hours a day.
The Salises were initially told that Kahlen would be best served by a lung transplant and were sent to the St. Louis Children’s Hospital — the closest health care system that could could it — but the team there decided that her particular blood disease required a liver transplant instead. And in the spring of 2021 they spent a week in St. Louis going to appointments and were put on the active transplant list on May 28, 2021.
“I’ll always remember that date,” says Kris, who notes that those in need of a transplant are prioritized base on urgency. “We are now one of the higher ones because labs aren’t getting any better — they’re getting worse.”
Kahlen actually has had two false starts — one in August of 2021 and another in February of 2022. In both instances, Kris says, the available liver was too large for Kahlen’s small body.
“The size is problematic because she’s so small,” says Kris. “She’s not a normal 13-year-old’s size.”
The decision to relocate to the St. Louis area this spring was driven entirely by logistics. Should a liver come available, being in close proximity to the St. Louis Children’s Hospital would be key to success. Being nearby would allow Kahlen to be placed on an expediated list, and also be given the opportunity for what’s called a domino liver transplant. Kris explains it this way: There is currently a patient who has a metabolic disorder that prevents the liver from working properly in the patient. Should a new liver come available from a deceased person, Kahlen would then get that patient’s otherwise perfectly working liver. Kris seems hopeful.
“In my mind I’m thinking six months,” she says of their temporary stay in St. Louis.
Actually the Salises are living in a house in Kirkwood, Mo., about 20 minutes away from the children’s hospital. The home is being made available to them rent-free through the Kirkwood Baptist Church, which has two homes it offers families “for this very reason.”
It’s a waiting game.
“You never know when the phone call is going to come, so I don’t sleep well at night,” says Kris. “You’re constantly wondering if that call is going to come and, if it does, do I have my phone turned up? Things like that.”
But she is optimistic and takes it a day at a time.
“You have to,” says Kris, who is working her job at Freeman Regional Health Services remotely, and says that she and Kahlen’s father, Walter, are finding ways to stay occupied. “Kirkwood is actually a very nice little town.”
As for Kahlen, her school year was done on that final day in Freeman last month.
“As long as she had everything completed that she needed for seventh grade, she was considered good,” says Kris. “They figured she had more important things to think about than schoolwork.
Kris said the teachers and administration at Freeman Public has been “absolutely wonderful” throughout the situation and they feel a lot of support from the larger community.
And she hopes everybody can be back in Freeman in time for Kahlen to start her eighth-grade year with her friends — and her brother Ricky, who is staying with his stepmom, and being cared for also by Kris’ mom and dad who are also in Freeman, while the others are in Missouri.
“You do what you have to do,” Kris says. “There are still a lot of unknowns, but Kahlen is doing OK. She’s just tired of it all — tired of being tired. She just wants to be with her friends and do normal things that kids do, but she’s trying to stay positive and I’m trying to stay positive. You have to. Your kids need you so that’s just what you do as a parent.”
