Wishing, waiting: Front Royal girl needs a new pair of lungs
FRONT ROYAL – Noelle “Noey” Mikels loves fashion and make-up. The 9-year-old plays video games with her brother, watches “When Calls the Heart” on the Hallmark channel and has an infectious laugh that makes everyone in the room smile.
She’s sassy and full of spunk. And she needs a new pair of lungs.
Noelle, who was born at 24 weeks and spent over seven months in the hospital, has bronchopulmonary dysplasia, commonly known as chronic lung disease.
“We kind of knew it was potential that she was going to need a lung transplant at some point,” said Staci Mikels, Noelle’s mother. “But we thought it would be way down the road. Instead we learned the road was getting shorter.”
On Dec. 28, Noelle went through the transplant evaluation and was put on the waiting list for new lungs.
“There’s no telling when she’ll receive new lungs,” Mikels said. “Whenever new lungs with her blood type become available, we’ll get the call and we’ll have to be ready to go.”
Noelle’s transplant will take place at Children’s Hospital of Pittsburgh of the University of Pittsburgh Medical Center in Pittsburgh.
“You can kind of tell when she talks, when her voice gets lower and softer that she’s running out of breath,” Mikels said. “For you and I, we know how to take breaths when we speak, but she can’t take a deep enough breath to speak super loud.”
Because of this, Noelle takes oxygen around the clock. She’s never known a day without it.
“If she doesn’t have oxygen, her oxygen saturations will drop. She’ll get super tired and dizzy/light headed and will turn funny colors like purple,” Mikels explained.
Up until Thanksgiving, Noelle was attending Leslie Fox Keyser Elementary School in Front Royal as a fourth-grader. She took part in cheerleading and enjoyed seeing her classmates and friends.
“She wasn’t able to keep up with her classmates,” Mikels said. “She was getting super tired, even after a half day of school.”
Mikels added there was also a concern for germs. “Her immune system is too weak to fight off many infections passed around school.”
Katie Cantrell, Noelle’s day attendant, now helps Noelle with her studies.
“She’ll continue the same classes she would of taken at school,” Cantrell said. “She’ll just be in a more controlled environment.”
Teachers send home weekly assignments for Noelle to complete. And with the aid of a tutor, it will be like Noelle never missed a day of school.
“I’m sad not to be in school anymore,” Noelle said. “But it was hard for me to do some things the other kids were doing. Like running.”
Noelle said she couldn’t run like the other kids.
“When I try to run I get out of breath and winded very easily,” Noelle said. “When it does happen, I have to sit down and catch my breath.”
For Noelle, the possibility of new lungs means she’ll get to run around with her classmates, participate in cheerleading again and do other activities. But for now, it’s a waiting game.
“Transplanting is like trading one issue in for another set of issues,” Mikels said.
The waiting game is the hardest part. The donor lungs can’t be damaged or punctured and they can’t have any signs of infections or disease. Noelle is one of six children in the United States with chronic lung disease waiting for a lung transplant.
“Even with a transplant,” Mikels said, “there’s no guarantee Noelle’s body will accept the new organs. She’ll be on a lifetime of medications, and will have to be monitored for the rest of her life for rejection.”
Noelle said she is nervous and anxious about waiting, “but excited about the possibility of doing things I’ve never done before.”
In preparation, Noelle compiled a list of 15 questions to ask her doctor before the procedure. They include “How long will the transplant take?,” “Will it hurt when you take them out?,” and “Will I die?.”
But Noelle’s biggest fear, being the fashionista she is, are the hospital gowns.
“Why do I have to wear those ugly hospital gowns,” she said. “They should be a violation.”
Her mom added, “They’re cute, but they’re not up to her standard of cute.”
The hospital, they learned, will allow Noelle to wear button-up pajamas.
“Mommy’s on shopping duty,” Noelle said. “She’s looking for the cutest pj’s she can possibly find.”
Other things Noelle admitted to being anxious about include the IVs, where the lungs come from, and the possibility of her friends treating her differently.
Cantrell said Noelle doesn’t fully understand yet that the lungs come from someone else. Mikels said they have been working on explaining it to her.
“She thought you could go on Amazon Prime and have them shipping to the house,” she said.
Despite her situation, Noelle’s resolve and cheer haven’t waned.
“Nothing gets her down,” Cantrell said. “She’s just full of resolve. She keeps telling us she’ll get her lungs, that they’re coming.”
Noelle and her family went to Disney World through the Make-A-Wish Foundation. Noelle said her favorite memories were with her family. When asked if she could have another wish and what would it be she said her new lungs. “It’s all I really need at this point.”
Upon her return to Front Royal with new lungs, Noelle said the first thing she wants to do is run around the school four times.
“And when I walk into the classroom, I’m going to be like, ‘I’m back!,'” she said.
Her mom added, “It’s going to be so awesome.”