Logan, 11, staying determined and brave in fight against rare cancer-like illness | 2024 Free Care Fund
The 71st Annual KDKA-TV Free Care Fund Telethon is this Thursday and all week, we're introducing you to some of the local children and families who are alive and thriving today thanks to UPMC Children's Hospital of Pittsburgh.
PITTSBURGH (KDKA) -- Ray and Ashley Tinneny are in the thick of the beautiful chaos that comes with raising a family.
Their five children keep them busy, but things came to a shocking halt after a routine appointment for their son, Logan.
"He had his PCP appointment at the age of 8 and he just completely plateaued on his growth chart," Ashley said. "Didn't grow in height, didn't gain any weight."
There were other symptoms too that just didn't add up.
"He was having stomach problems, the severe thirst," Ashley said. "There were a lot of symptoms. I can't really remember, cold all the time. So, then we started to realize, okay, we need to make an appointment with endo."
"We met with the endocrinologist, and he indicated that Logan might have something called diabetes insipidus, which is not like the diabetes we typically know," Ray said. "It's just the body's inability to concentrate urine.
"From diabetes insipidus, it usually means that something is wrong with his pituitary gland," he said. "So that started our whole next adventure of his diagnosis."
It meant more testing and hospital visits and more doctors for Logan as they started to zero in on a lesion on his back.
"They biopsied it," Ashley said. "It took weeks to come back, and finally came back with something called JXG, which typically resolves itself in most adolescents. But in Logan's rare case, this, along with the Langerhans cell histiocytosis, is affecting the brain, the pituitary."
It's also stunting Logan's growth. At 11, he still has the bones and structure of an 8-year-old.
"Since it affects his pituitary gland, it affects all his hormones as well," Ray said. "So, that's why he has a problem with growth because the human growth hormone isn't getting secreted, it's getting essentially blocked."
"Initially, you just black out," Ashley said. "You lose track of your family, and you just, it's all you think about. It was hard. It was really hard. But with the community, thank God for them, because they really lifted us up."
It's not classified as a cancer but acts similarly and is treated the same way with chemotherapy. Which brings them to UPMC Children's Hospital of Pittsburgh.
"I go to chemo once every three weeks, and I have an MRI every three months," Logan said.
"Thank goodness we're back, because UPMC of Pittsburgh, I mean, of all hospitals, we were lucky enough to be there at Children's. I mean, how blessed were we?" Ashley said.
While all of this is going on, the Tinnenys are still parenting and raising their family. But they've found comfort at UPMC Children's.
"His name's Mr. Mike," Logan said. "He like comforts me whenever I need it."
"Mike, the specialist, they just gave us that breath when we needed it," Ashley said. "You're so fearful, and you've got other kids, so the way that the community came together to distract them as well, and just, then you get through it and then you gain perspective. Then, it gets easier because he does better and better and better. You just become more grateful and just thankful."
Even when it feels like the world stops turning, life doesn't stop and neither does this family who's fighting together with UPMC Children's on their side.
"I think the support at Children's Hospital should not be understated, no matter what anybody's going through," Ray said. "I think that support, support system is crucial to making it through any hard time. I think without it, this would have been a much more challenging situation."
"It's so important to be there and be present," Ashley said. "Children's helps take that stress off your back that you're walking in with, and they take it off your back."
You can help children like Logan during the 71st Annual KDKA-TV Free Care Fund Telethon. The Free Care Fund at UPMC Children's Hospital of Pittsburgh ensures no child is ever denied medical care this Thursday.
Please join him and the rest of us from 3 p.m. until 8 p.m. on Thursday, Dec. 19 on KDKA-TV and donate to the Free Care Fund.
