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Woman pushes on 2 years after brain tumor changed her life

April 27, 2019

PITTSBURGH (AP) — Meah Ezykowsky was lying unresponsive in her bed when her mom rushed into their Latrobe home, knowing something was wrong.

That morning of March 20, 2017, the family learned Ezykowsky had a record-sized meningioma tumor — a noncancerous mass that will impact more than 32,000 people this year. The grapefruit-sized tumor had grown so large that it pushed Ezykowsky’s brain to the side until she could no longer function.

Rushing to Excela Health Latrobe Hospital, Michelle Kuba pleaded with doctors that her daughter wasn’t high or drunk. She eventually persuaded them to perform a CT scan, which provided a clear picture of the tumor.

“The doctor came in and said, ‘I’m so sorry, but your daughter has a massive brain tumor. We cannot help her. It’s taking her life,’ ” Kuba recalled. “And he said, ‘I cannot stay with you. I have to go find somebody to take her case.’ ”

At that moment, Kuba prayed — to God and to her late husband, Ryan Ezykowsky, thinking of it as a custody battle.

“I kind of was, like, arguing with him down the hallway,” Kuba said. “Because I thought, ‘Who wins custody?’ I was just begging, just begging God and begging Ryan, just please let us keep her.”

‘Tina’

Strapped into a helicopter with her mom sitting next to the pilot, the then-19-year-old Ezykowsky was flown to UPMC Presbyterian in Pittsburgh.

There, she endured hours of tests that ended when doctors needed time to plan for the surgery on the tumor Ezykowsky named “Tina,” for reasons unknown to the family.

Finally, she was wheeled to the operating room for what was supposed to be a surgery that lasted six to eight hours.

Michele was left in a waiting room with her second husband, Joe Kuba, and her 17-year-old daughter Ryssa Ezykowsky.

During that time, Michele took a trimmer to her head, cutting off her hair, knowing her daughter would be bald the next time she saw her, but having no idea what else to expect.

She cleaned the waiting room, she passed out snacks, emptied garbage cans and ran the sweeper, waiting for the every-few-hours phone call from a nurse who would tell them everything was OK.

“The eighth hour passed, and the ninth hour and the 10th hour and the 11th hour,” Michele said. “And in those hours, I was literally losing my mind.”

When Ezykowsky’s doctor came out of surgery 15 hours later, all Kuba could do was grab hold of him. She was told the entire tumor could not be removed without killing her daughter.

About 20% is left and it will grow in the future — doctors just aren’t sure when, Kuba said.

After, she was led down the neurological intensive care hallway — walking past patients in vegetative states or who were ventilated — to her daughter’s room at the end, not knowing what to expect.

“I get to her room and they had just removed her breathing tube, and all she had was oxygen and she was talking,” Kuba said. “And that does not happen. And right then and there she got named Miracle Meah by everyone at Presby.”

Green Day

A week after surgery, Ezykowsky once again found herself in an unexpected situation — at a Green Day concert.

Ezykowsky and her mom were in a courtyard when a woman approached them, offering free tickets to see the rock band, playing across the street from the hospital.

“Pretty much as soon as I said, ‘Yeah, sure, we’ll go see them,’ I was like, ‘Why did I say yes to that?’ ” Ezykowsky said, laughing.

By then, Ezykowsky learned she had only a pinpoint of vision out of her right eye and had lost any memory prior to junior high school. But what she wasn’t expecting was a personality change.

The formerly quiet student studying social work with a focus on substance abuse was now “a party,” Kuba said.

Through high school, Ezykowsky advocated for Students Against Destructive Decisions, speaking on state and national levels.

“My dad was actually killed by a drunk driver,” Ezykowsky said. “So I wanted to do what I could to prevent it from happening to other families, so that’s why I started speaking about it and telling my story.”

But “Tina” quickly changed her path.

The 21-year-old is now an outgoing artist, photographer and musician, with slightly different goals.

Recently finishing mobility training with a cane, she is setting her focus on getting a guide dog, which she hopes to use to educate kids about being blind.

“It seems like leaving the house, people just look at you like, ‘What’s her deal?’ Like they don’t understand it, and there’s so many misconceptions about being blind,” Ezykowsky said.

Kuba agreed, adding, “That’s the hardest part is people will say, ‘Well, she’s back at school, right?’ or ‘She has a job?’ That’s kind of where we’re at a loss because . she’s not just blind, so it’s, like, if that was just one aspect that would be one thing. But it’s like how do you go back to something when you don’t have a memory?”

Recovery

Released from the hospital March 27, 2017, Ezykowsky was forced to relearn skills — “second firsts,” her mother calls them — such as walking, cooking and doing basic chores.

But the 19-year-old found herself back in the hospital a week later being treated for hydrocephalus, or fluid on the brain. The morning of surgery, Ezykowsky woke up with a fever of 104 degrees, forcing doctors to apply a temporary stent to remove fluid from her brain until they could complete the surgery.

Finally, doctors were able to add a tube that runs from her brain into her belly, where the fluid is absorbed by the lining, Kuba said. At the same time, doctors worked on her eyes, providing the only way Ezykowsky has any vision at all.

Over two years later, Ezykowsky and Kuba are still working to master basic skills, filling their days solving TV mysteries, attending art classes and keeping anxiety and post-traumatic stress low.

While the future is still uncertain, Ezykowsky is positive about one thing.

“I know I’ll be helping other people somehow with whatever I do, because I’m not happy if I’m focusing on me,” she said. “I like to be focusing on somebody else.”

Through it all, Ezykowsky stuck to that philosophy.

When their dad died, Kuba told her daughters, “It’s your story that made you stronger. I said, ‘You have the choice to make that happen. You can choose to let it wreck you or you can choose to let it help you and help other people.’ ”

And not once has Ezykowsky asked, “Why me?” Each time Kuba wishes she could take that pain from her daughter, Ezykowsky says, “This is for me. This is for me for whatever reason.”

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Online:

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Information from: Tribune-Review, http://triblive.com

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