Landry Cole is home from the hospital and her folks would like to keep it that way.
“Since her diagnosis, she’s been in the hospital nearly every month,” said her mother, Heather Cole. “Our goal is to find a way to manage her medical issues at home and keep her out of the hospital.”
The 15-year-old was diagnosed with cancer a year ago. Since then she’s had two major surgeries to remove tumors, lost her vision, and suffered a stroke.
She now also has an endocrine disorder, a side effect of one of the cancer surgeries. Diabetes insipidus, a rare disease, damages the pituitary gland causing excessive thirst and urination and as a result makes it hard-to manage Landry’s critical hormone levels like sodium.
When sodium levels are out of wack, Landry could have seizures. The disease means constant blood monitoring.
To do that requires a machine, called an iStat, which would cost the family $6,500. Cartridges to test the blood could cost another $800 a month.
“It’s a game-changer, it’s not something we can spend,” said her father, Dan.
Right now the family is guessing how much medication to give to Landry. The decision is based on her symptoms, such as lethargy, weakness, and memory issues, but it’s all guesswork, said Dan, an emergency medical technician for the South Lorain County Ambulance District.
“We would know all this if we had the machine at home,” he said. “That machine would be invaluable.”
Instead, the Coles often end up taking Landry to the doctor and she is admitted to the hospital, where she can spend weeks. “This is severely affecting the quality of her life,” Heather said.
Landry, who should be in ninth grade, has not been to school on any regular basis since her diagnosis. “It’s been a long, tough year,” her mother said. “We’re working with the school to integrate her back for a few hours a day.”
She’s missed out on everyday teenage events like sleepovers and even texting. “Those are all normal teenage things,” Heather said. “The social aspect is vital.”
“We want to get her back to school so she can have a semi-normal life,” Dan said. “If that costs me everything, I don’t care, as long as she can get back in the game.”
Classmates have stepped up and donated by holding a run, Spirit Week events, and one even donated proceeds from a market hog sold at the Lorain County Fair. Firefighters built a wheelchair ramp. “The town has been wonderful with this,” Dan said.
Pastor Paul Wilson of the United Methodist Church of Wellington visits Landry at home and in the hospital. He said the congregation prays for her.
“I went and asked what she wanted me to pray for and she said to pray for Troy, her brother,” Wilson said. “Even though she can’t see she’s asking me to pray for someone else. She’s a special person.”
In addition to her twin brother, Landry has two older sisters. Shelby, 19, is a college sophomore, and Whitney is 16.
The Coles are huge Dallas Cowboys fans. In fact, both Landry and Troy are named in their honor — Landry for legendary coach Tom Landry and Troy for Hall of Fame quarterback Troy Aikman.
Dan said he’s thought about asking the Cowboys to get the iStat machine. He said he asked Wilson what he thought about that. “The worst they can do is say no,” Wilson told him.
Dan said, “If it helps my daughter, I don’t care if I look like a beggar or not.”
In the midst of all this, Heather said she has to remind herself that the problems all started with cancer. While Landry is tumor-free, the family is now consumed with keeping Landry stable and out of the hospital.
If you ask Landry, she says, “Cancer sucks.” She hopes for the day “when I can take showers by myself.”
Catherine Gabe can be reached at 440-647-3171 or @ReporterGabe on Twitter.