Eight times Jeremy and Melissa Hogan have had to hand over their children to surgeons for heart surgeries that could either save or take their lives.

MIAMI – The Hogan family’s story is one of endurance and seizing every chance at life despite the monumental challenges they have faced.

As they share their unique story, great character shines through each Hogan family member; Miami Public Schools Superintendent Jeremy Hogan, his wife Melissa and their children Hestan, 14, and Brynlee, 11.

Melissa has fought through two battles with cancer, Hestan has had five open-heart surgeries and Brynlee has had three open heart surgeries, and through it all, Jeremy has maintained a spirit of strong support for his family and leadership role at work. During Hestan’s last surgery and recovery, Jeremy was working on his doctorate and in the midst of dealing with the Oklahoma statewide teacher strike.

Fight like a Hogan

Eight times Jeremy and Melissa have had to hand over their children to surgeons for heart surgeries that could either save or take their lives.

“I was an emotional wreck, I’ll just be honest,” Jeremy said, his face flooding with emotion. “We gather with our large family that was there to support us and pray, and we give them a hug and we give them a kiss…but it’s tough. You touch them that one last time and they’re rolling them away, and you want to say, ‘Hold on, one last kiss,’ or hug them again. It’s tough. We lean on our faith and pray and ask for guidance.”

Jeremy said leaning on their faith and believing in a commitment to excellent medical care gives his children the best chance they can have at life.

“When Hestan was born in November of 2003 it was a few hours after he turned a little blue, and so that caused the doctors to run a few tests,” Jeremy said. “The Lord works in mysterious ways, and it just so happens a cardiologist from Cook Children’s Hospital in Ft. Worth was there at our small hospital on her every three-month rotation.”

The cardiologist determined that Hestan had serious, life-threatening congenital heart defects.

“They gave us a couple of options, and to us, there was only one option, and that was to give him every chance,” Jeremy said with a detectable fierceness in his voice. “They throw out percentages and stuff, I just never listen to them.”

At three days old Hestan had a Norwood surgery, and at two months old another surgery to fix a shunt that had kinked. At 8 months-old Hestan underwent a Bi-directional Glenn surgery, and at three years old Hestan had a fourth surgery a Fontan that included an attempted repair of a leaky heart valve.

Hestan

As Hestan grew to his teenage years and became more active during his March 2018 cardiology checkup the family got the news it was time to make a huge decision, one no family should have to make.

“They said, ‘We’ve got to do something very quickly and if we don’t we’re looking at setting the timetable for a transplant.’ That was the options before us. It was a difficult decision. We had known since he was born this was inevitable, but it was just, do you want to go ahead with one now and try this repair, or do you wait for the transplant which is probably going to happen some time,” Jeremy said.

An intense MRI indicated Hestan’s heart function was dropping and there was no time to wait to make a decision.

“There’s a number they come out with, and as soon as that number gets below a certain level they won’t do surgery other than a transplant. He was very close to getting under that amount, so that’s where that timeline kicked in to say either we do the surgery now and prolong the transplant, or we hold off and wait until he goes into failure before we do a transplant. Then you’re on a timeline of what’s available to you. We’ve always leaned on our faith and we prayed about it,” Jeremy said.

Together the Hogans made the nearly impossible decision after deep conversations and prayer to attempt the repair surgery with guidance from their team of surgeons and medical experts.

“It was a horrible decision to try to make because they told us with his heart function as low as it was he would have to go on bypass, and the bypass would drop that function and there was a chance they wouldn’t be able to get him off of it and have to do transplant quicker. If his heart function continued to drop he may not be able to undergo the transplant and if they waited too long we wouldn’t have an option. We talked to Hestan about it, we’re always up front and honest with him,” Melissa said.

“We know with his own heart that his body’s not going to fight that like it is a transplant…so we made the decision to go with the repair to try to push off the transplant. This surgery will allow that transplant to be pushed off until his late 20s or 30s maybe in further, we just don’t know,” Jeremy said. “The good Lord has a plan for Hestan and Brynlee, maybe that’s their testimony. These kids are strong.”

Hestan underwent a 10-hour open-heart surgery on May 24.

“I was just scared,” Hestan said, of his last surgery.

“He’s a man of few words and holds in a lot, but we could tell he was, and we were scared for him,” Jeremy said. “To be completely honest, after the surgery, it was a struggle for a few days – we almost lost him. There are times you want to second-guess, but you’ve got to stay strong and committed to your decision and your faith. You have to be because there’s no other way to explain the obstacles he overcame in front of him. There’s no reason what we witnessed with Hestan, nobody else can tell me the good Lord didn’t intervene.”

After the surgery Hestan was conscious, and being intubated was very difficult and uncomfortable, and his health began to decline. During a terrible event, Hestan’s blood pressure went dangerously up and down, his body temperature dropped to an ice cold 28 degrees, and his body was shutting down. Hestan’s heart stopped and because of a fortunate turn of events he was still hooked to a pacemaker and intubated and he miraculously survived the frightening episode

“I went and found a corner to pray and I saw his color and the machine go flat and thought, he’s gone, and had to have my moment. Jeremy wouldn’t leave Hestan’s bedside. If he had been extubated when they were supposed to he wouldn’t have been able to breathe, and if they hadn’t started the pacemaker 10 minutes before he would have died and not came back,” Melissa said. “There’s no medical reason at all that he recovered, so what you’re looking at is the power in prayer. There was a nurse who came back the next day, off duty in street clothes and told us, ‘I haven’t been able to get this off my mind. I haven’t seen anything like it and I’ve been a nurse for 22 years.’ She said in a matter of two minutes she looked up from what she was doing and Hestan’s heart went to a normal rhythm, his blood pressure stabilized perfectly, and his temperature rose to normal. He looked like another kid. Everything was just a complete turnaround

“From that moment his recovery was amazing,” Jeremy said. “From talking to our friends we know that word got out very quickly and we became aware that there was a prayer rally that happened at one of the schools, and I don’t think you can underestimate that either because the improvement that happened over the next 24 hours was truly remarkable. It defied medical logic, and they told us that.”

During the Hogan’s ordeal, the community had followed along on a Facebook page created to allow friends and family to stay updated and receive specific prayer requests.

“So many people were reaching out we never even met,” Melissa said.

“All I really remember is what my doctors looked like and what I ate,” Hestan said, making his sister giggle, "and being grateful for getting ice chips to eat afterwards."

Brynlee was by her brother’s side during his recovery and understands what Hestan has endured all too well; they have an understanding and bond between siblings few can relate too.

“When he could talk all he would say is ‘water,’ and they just had to get a sponge and wet his mouth,” Brynlee said.

Hestan said he doesn’t remember much during that time and his parents said he finds some of what he does remember hard to speak about.

“I honestly think he remembers more than he says he does, because I’ve heard some conversations with some friends, and I think he remembers and was more aware, and is almost scared to talk about it. He saw things and felt things that are not easy for people to talk about like seeing the light and he’s made comment that he felt God touch his cheeks, and I think it’s hard to talk about stuff like that because you don’t know how others will react,” Melissa said.

Melissa candidly admits there was some tension during the darkest moments and said during that frightening time she second-guessed their decision to do the surgery, but Jeremy reminded her they had to give Hestan every chance.

“Jeremy’s always so positive and I was really struggling with the decision we had made, feeling like it wasn’t right. I was going five days back when he was playing laser tag with his friends and having the time of his life,” she said. “Jeremy later sat down and told me what he felt and saw…and it only made more sense.”

Melissa and Jeremy decided to post what they experienced on their Facebook page.

She posted in part: “When things calmed down and Jeremy and I had a minute to talk about what had happened this is what he said to me with tears in his eyes, but joy in his heart that was so evident. Jeremy said to me, “Melissa I held my hands on Hestan and prayed for God to give him life, wake him up, give him back to us. My hands while on his body became very hot, like burning hot, so hot it almost hurt. I could feel God answering my prayer through my hands and giving Hestan life.WOW. I will share this story with everyone I know for the rest of my entire life. I truly believe God saved Hestan today through Jeremy’s hands and our prayers. God is so good and so is Hestan! Hestan has always been my hero, but today he should be everyone’s.”

“When you have a moment like that you don’t keep it to yourself,” Melissa said. “That’s God saying, ‘I’m here for you and we’ve got to give him the credit and the praise. As it just happened at that moment people were meeting and praying and read the post and were crying and praising…We knew that it was real, and we thought even if some people thought we were crazy we had to share the story and if we reach someone and it changed them it’s worth it. ”

Brynlee

The couple underwent genetic testing before having another child and were told they had less than a 2 percent chance of having another child with congenital heart defects, and despite statistical odds discovered Brynlee also would be born with congenital heart defects.

“Our pediatrician once said to us, ‘God gives special babies to special people,’” Melissa. “ Not that all babies aren’t special, but there’s a reason God gave us Hestan and God gave us another one.”

Brynlee is under cardiologist’s care, watching a leaky valve in her heart closely, and may need to have future surgeries to repair or block off the leak if needed.

Both children must be closely monitored with regular checkups with Dr. Clark Osborn every six weeks, and their cardiologists yearly and quarterly to ensure no other organ damage occurs, and both siblings take medications daily, Brynlee is on two and Hestan is on four.

“We have to watch them closely,” Jeremy said.

Brynlee is charismatic and outgoing with a magnetic personality.

“Since we can’t do sports, I cheer, and take a tumbling class,” Brynlee said. She will be in Fifth grade this school year at Nichols Upper Elementary.

“People would see Hestan on the news and people would say something and I would just be honest. People would say, ‘Oh my gosh, he almost died ‘ and I would say ‘Yeah, but he’s doing good now, ‘Brynlee said.

Hestan has plans to be a veterinarian or a YouTube gaming sensation one day, he has his own YouTube channel, and has the skills to accomplish that goal.

“I’m the team manager for football, basketball and baseball, and for my big hobby I mostly play video games,” Hestan said interrupting his sister when she tried to answer for him. He is also involved in FFA and will be a freshman at Miami High School.

Melissa

Brynlee was only one-year-old, and Jeremy was in his first year as principal in a new district when Melissa, a petite blond beauty, was diagnosed with cancer. She thought she had bitten her tongue and her ear was hurting.

“I have no risk factors, and finally found a doctor who did a biopsy, “Melissa said. “ I went back for the results by myself and was bouncing Brynlee on my leg and he said, ‘You have oral cancer.’”

The first time she showed up for radiation treatment Melissa was among 70 and 80-year-old male cancer patients who had used tobacco, and they thought she was a volunteer and asked her to get her coffee.

“We formed a bond,” Melissa said.“ We were there for six weeks together, they came to love me and I came to love them.

After a couple months of being fine, the cancer came back.

“It was bad, I had major surgery,” Melissa said.

As one of the youngest oral cancer patients and survivors treated at MD Anderson Hospital in Texas, Melissa is now experiencing side effects from treatment that effect her jaw and teeth, something much older patients aren’t as concerned with.

“It’s kind of new to everyone,” she said, and she is researching and is hopeful her teeth and jawbone destroyed by the necessary radiation to restore her health can now be restored. She may undergo future surgery procedures toward this goal.

“I am almost nine years out,” Melissa said.

Jeremy said his family has moved as he has been “called” to serve in different positions in education in five school districts and the Hogans have been met with support and compassion wherever they have lived.

“Every community we’ve been in since we’ve had kids, we’ve had a surgery or battled cancer, and every community has wrapped their arms around us and helped us out tremendously,” Jeremy said. “It’s very heartwarming and makes you feel very welcome in the community. I think people get to see you as human, you battle things too, you’ve got a wife, you’ve got kids, you’re not at school all the time. For us as a family, we were in awe. We definitely felt it up there and we still feel it today. We’re very appreciative.”

Melinda Stotts is the associate editor of the Miami News-Record. She can be emailed at mstotts@miaminewsrecord.com or followed on Twitter @MelindaStotts1.