LIVE LIKE YOU’RE DYING
A Victoria Advocate Special Report
WHEN EVERY MOMENT COUNTS
June 18, 2017
Tightly gripping the steering wheel, Alice Geryk felt her world falling apart.
She had just learned her teenage son was diagnosed with a serious heart condition.
She looked over and saw his worried expression.
Taking a deep breath, she broke the silence.
“We were just dealt a pretty bum deal,” she said. “Tony, what are we going to do now?”
She offered him a choice. They could go home, curl up on the floor and cry about it, or they could start making every single day count.
He chose the latter.
That was the beginning of what’s been a wild ride.
At the age of 13, Tony Geryk had a pacemaker put in and suffered several cardiac episodes that landed him in the hospital with a failing heart and on a waiting list for a new one.
After waiting 18 months, he underwent a transplant in August 2013.
In October 2014, Tony’s transplanted heart started to struggle. His heart stopped, but he was resuscitated and became the first child at Texas Children’s Hospital put on the Impella device, which temporarily pumped his blood.
Tony recovered a couple of months later but suffered neurological damage, said Dr. Jeff Dreyer, medical director of heart failure, cardiomyopathy and cardiac transplantation.
Feb. 2, Tony’s heart again started to fail, and he was rushed to the hospital.
“We have sort of pulled out all the stops to try to control his rejection,” Dreyer said.
When conventional therapies failed, Tony’s care team got approval for an off-label use of the drug Eculizumab.
After four treatments, his heart function is still unlikely to recover.
Even if the doctors believe his body would accept another transplant, Tony is out of time.
Making a bucket list
On their way home to Port Lavaca, Alice reminded her son of his choice to make every day a good one.
Tony smiled and agreed.
“Maybe it’s time to start making a bucket list,” she said.
So at 21, Tony is planning for the end of his life with no guarantee of how much time he has left.
Raised with a strong faith in God, he said he’s ready.
Still, he’s trying to experience as much as he can.
First on his bucket list was getting a tattoo - something he couldn’t do after his transplant.
He got the sign language symbol for “I love you” inked on his left arm.
It was this hand motion he made for his mom while lying on a bed at the hospital unable to talk.
Several friends and family members also got the tattoo.
Last month, Tony checked off seeing and meeting some of his favorite bands in concert.
He still wants to ride a horse, hunt hogs with his dad and go deep-sea fishing.
Tony also hopes to see the Grand Canyon, visit the Creation Museum in Kentucky and visit his grandma Caroline before his heart gives out.
This week, he and five family members will hit the road in a rented RV.
His plan is to also play Pokémon Go and take photos at each state marker.
To him, making the stops on his trip matters less. He just wants to spend time with his family.
“Everything we do is at Tony’s pace,” Alice said. “His energy is limited.”
Alice said they are keeping him on anti-rejection medication in the hope he will get more time. Hospice also gave him medicine to ease any pain in the coming weeks.
The family has experienced a considerable amount of stress during the past few years because of Tony’s condition.
But they’ve also had a lot of support.
Alice said she was praying about coming up with enough money for the road trip, but her prayers were answered.
Her daughter, Patty Hermes, brought home a card with donations from her co-workers at Citizens Medical Center.
Mother, son bond
Loved ones say to know Tony is to love Tony.
He’s the kind of person who likes to jump out and scare his aunt, loves taking photos with Snapchat filters and watches “The Walking Dead” with his family.
Alice used to cut hair at her home in a rural part of Port Lavaca, but these days, she spends her time watching after Tony and raising goats named after “The Walking Dead” characters.
On a recent weekday, she and Tony sat on a red couch near her craft projects.
She teared up, recalling Tony’s close calls and how she rushed to Houston in her car as they lost his pulse.
When she arrived, the medical team was still doing compressions.
“He’s never been a fighter,” she said. “He’s always been more of a lover, but he fought.”
Close family and friends arrived at the hospital, and she told them not to dare cry over him.
“I said, ‘I know he’s still in there,’” she said.
Alice has shared a close bond with Tony since the first day he walked into her home at age 3.
Alice and her husband, Mark Geryk, adopted Tony and his younger brother, Michael, and later their sister, Rebekah.
She and Mark each had a child from a previous relationship and welcomed the three additions, determined to do the best they could by them.
“Tony’s always been super easy,” Alice said.
His sweet smile and a sly sense of humor easily win people over.
When he was placed on the waiting list for a heart, she packed up and moved to what she called the “home-tel” in Houston.
But her family also needed her at home in Port Lavaca.
That’s when her sister, Jeanna Hooker, decided to move back to Deer Park so Tony could be close to the hospital.
Jeanna said she wanted to do what she could.
Throughout this journey, she prays losing Tony won’t destroy Alice.
“I worry about her more than him,” she said. “You’re not supposed to lose your children.”
Still, she’s admired her sister’s strength over the years.
Together, the family shares an odd sense of humor and tries to stay positive.
The Rev. Johnny Kisiah, of Six Mile Assembly of God, has known the family for years and said he knows Tony’s struggle has been hard for Alice.
“I was thankful that she has that attitude because some people just go to pieces, you know,” he said.
A new heart
Alice vividly recalls when she got the call four years ago that a heart had been found for Tony.
It was 4 in the morning when the phone rang.
She called her sister and asked for Tony, who was up listening to music.
Tony looked up and said, “Aunt Jeanna, I got a heart.”
They rushed outside, and her truck wouldn’t start.
Jeanna said she called dispatch because they needed to be there within an hour.
The officials knew her from her job in animal control, and the paramedics had taken Tony to the hospital before.
This was a trip they said they were honored to make.
At the hospital, family members goofed off, and Tony wore a purple glove on his head like a rooster.
Aside from all the excitement, Alice remembers feeling overwhelmed that someone else’s child had to die for hers to live.
She later found out his name was Zach and he died in an accident at 16.
Some time later, Alice still couldn’t find the words to thank the donor family for Zach’s gift.
When the two mothers finally spoke, they learned Zach’s sister, Bethany Guined, had already found Tony online.
“These kids put the dots together,” Alice said.
As part of his bucket list, Tony plans to visit Zach’s family in August.
Zach’s family rented a condo in Panama City, Fla., for Tony and his family.
“I think about (Zach) a lot ... a lot more lately,” Tony said.
TONY'S ROAD TRIP
Part of the “Live Like You’re Dying" series
Four years ago, Tony Geryk received a heart transplant. Now at 21, his heart is failing. Not knowing how much time he has left, he went on a two-week road trip with family to cross items off his bucket list. Later in summer of 2017 the family traveled to Florida to meet the donor family.
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WHEN THE JOURNEY ENDS
JULY 23, 2017
PORT LAVACA - Back from a two-week road trip, reality starts to set in.
Tony Geryk, 21, has limited time left as his heart fails.
“You can basically get through anything in life if you have faith,” he said.
Geryk and his family continue to plan a lifetime of memories with no guarantee of tomorrow.
Next month, they plan to hit the road once again to spend a week on the beach in Panama City, Fla.
Geryk will visit with the family of the teen who donated his heart four years ago so the family can say a final goodbye.
But thinking about the inevitable is painful.
While he’s not afraid of dying, he’s unsure what it’ll feel like when he actually dies.
“I have my hopes some days, and I think I’m gonna go to heaven,” he said.
His mother, Alice Geryk, said she feels relieved that he won’t be sick anymore.
“I know he’s going to be saving a spot for me,” she said through tears.
They family has discussed what will happen after Tony dies. They don’t want flowers or a traditional funeral service.
The plan is to have a celebration with everyone writing a memory with a Sharpie marker on a balloon.
They’ll then send the balloons up to heaven.
Tony said whether his remains are in an urn on a shelf or used in jewelry, he knows he’ll always remain in their hearts.
As part of his will, he plans to donate his organs for transplantation or allow his body to be used for teaching and scientific purposes.
“I just want people to remember me as the upbeat Tony they always knew with a smile and comforting people,” he said.
Alice Geryk said it’s probably going to be real quiet around the house.
“You hear about empty nest, but normally your kid is going off to college or moving out to get married,” she said. “Tony’s going a lot farther than the next town.”
Alice said after the road trip, Tony’s sister, Rebekah Geryk, 17, has started spending more time with him.
She worries how Rebekah will be affected by Tony’s death.
“These are grown-up issues,” Alice said. “These aren’t things that are supposed to happen to young people.”
Tony said he wishes he could get married and watch his children grow up.
But he knows he may not make it until Christmas or his 22nd birthday in February.
When asked about his favorite memory, he said although he doesn’t exactly remember it, his favorite is when his mom and dad adopted him and his siblings.
Alice vividly recalls a moment after they adopted Tony, and he was in the grocery cart at Walmart.
He was a toddler at the time and spoke few words.
Tony motioned to her and said, “You, Mommy.”
Alice said she doesn’t know what she’ll do with her time when her son is gone.
She hasn’t decided whether she’ll go back to cutting hair or just take time off.
Alice takes care of Tony’s day-to-day needs while her husband, Mark Geryk, works to financially support their family.
“Mark keeps us afloat for the important things,” she said.
All the rest, she says, is just the small stuff.
She knows that a lot of people don’t get time like this to say goodbye to their loved ones.
Still, there’s the feeling of being rushed.
“We’re kind of racing against the clock in making these memories,” she said.
There was one moment at the beginning of the road trip after they arrived at Stinkin Jims in Mississippi that she will hold onto.
Tony crossed riding a horse off his bucket list that day.
Alice remembers seeing the expression on his face almost like he was overwhelmed behind that big smile and cowboy hat.
And the look on his face when he rode on a small boat with his dad in Missouri.
“I know when he leaves this world, he’s had so many breathtaking experiences,” she said.