Ethan Fisher

Jimbo, Ethan and ex-wife Candi Fisher in Minneapolis, Minnesota, on March 8, 2016.

Ethan Fisher

FSU football coach Jimbo Fisher and his ex-wife, Candi, divorced last year after 22 years of marriage. But they remain united in raising money – millions so far through their Kidz1stFund foundation — to help find a cure for Fanconi anemia, an incurable disease that affects children, including their 10-year-old son Ethan.

By Tom D'Angelo

Palm Beach Post staff writer

Photography by Allen Eyestone

 

MINNEAPOLIS — Ethan Fisher lay on a table, EKG wires connected to his chest and stomach crisscrossing his body like the lines on a pass pattern his father might draw up on a white board.

Ethan is familiar with the poking and prodding that define his annual visits to the University of Minnesota Masonic Children's Hospital. But this test was different, even for a tough 10-year-old who deals with needles being stuck in his arm four times a year and having a mask placed over his face while being asked questions about his favorite animals knowing he probably won't get through one answer before the anesthesia kicks in so doctors can biopsy his bone marrow.

Ethan is hooked up for an EKG.

So needing reassurance that this test would go as smoothly as any of the other 15 he was put through during his three-day visit last month, Ethan had one question:

"What's it going to do?"

Jimbo Fisher — who along with his ex-wife Candi are Ethan's rocks as he fights a rare, life-threatening disease called Fanconi anemia — did what dads do … lighten the mood by teasing his son.

"It's going to make your hair stand up and blow your shoes off," Jimbo said with a mischievous smile.

And even as Ethan rolled his eyes, the nursing assistant did what she does … comfort the child.

"It's not going to shock you or blow your shoes off," she says. "You won't even feel it."

Ethan looked at his dad, satisfied he got the better of him.

Jimbo and Candi Fisher's divorce was finalized in December after 22 years of marriage. Yet they remain united – caring for Ethan while trying to tackle Fanconi anemia, not only for their son, but for every other child who suffers from the disease, which currently has no cure.

Alarming diagnosis

Ethan Fisher looks and acts like a normal kid. He likes wearing shirts and jerseys from his favorite teams, especially those from Florida State, the school where his father has spent the past six seasons restoring its national championship status. He plays all kinds of sports — flag football, baseball, soccer, tennis, golf — and he loves to hunt, a passion of his dad's.

"He can shoot," Jimbo says proudly.

And Ethan has let his hair grow to shoulder length, but with a warning from his mom that "if you keep chewing on it we're going to cut it off."

Ethan prepares for an EKG.

But below the surface Ethan is suffering from a disease that affects one in 130,000 children worldwide. Fanconi anemia is an inherited disorder that causes bone-marrow failure, a very high risk for leukemia and other cancers; along with physical changes or anomalies.

The life expectancy for children with FA is on average about 35 years, according to Dr. Margaret MacMillan, an internationally known bone-marrow transplant physician and Professor of Pediatrics at the University of Minnesota. But that number will rise with some FA patients now living into their 40s and 50s because of the advances in research and the ability to identify the disease much earlier, as it was for Ethan who was diagnosed in March 2011, six weeks shy of his sixth birthday.

"We have this whole group of patients 10 years past their transplant," MacMillan said. "The parents are not saying 'Are they going to survive this transplant?' They're saying, 'Are they going to have a job? Are they going to have children? What's going to happen 20, 30 years from now?'"

Dr. Margaret MacMillan explains her research.

Jimbo and Candi recall every detail of that day five years ago which changed their lives forever. Three months earlier, around Christmas, Ethan wasn't feeling well. The couple took him to Shands Hospital in Gainesville where he was diagnosed as having a low blood-platelet count. A battery of tests followed, and at one time it was believed he had leukemia before a bone-marrow biopsy ruled out cancer.

Still, doctors needed time and by March one test remained for a disease so unfamiliar that it sent Jimbo and Candi scrambling.

Candi was at home cooking spaghetti when the phone rang. "I knew it when I got a call at that time," she said. She jumped in the car, racing to find Jimbo and Ethan, who were down the street at a pond where Ethan likes to shoot his BB gun.

"She was in the car screaming, 'Jimbo, Jimbo!' and was blowing the horn. I knew it," Jimbo said.

A light for parents' darkest days

The children's hospital at the University of Minnesota sits on the banks of the Mississippi River southeast of downtown Minneapolis. The hospital is as bright and cheery as a place can be where parents and their children spend the most frightening and uncertain days of their lives.

The University of Minnesota Children's Hospital in Minneapolis.

A giraffe greets you at the revolving door and there is another in the children's library next to the receptionist's desk. A giant mobile consisting of colorful birds, fish and other animals hangs from the ceiling of the library. Walls in examination rooms and nurses stations are painted in an aquatics theme with brightly colored plants and fish and mammals.

Ethan is weighed in.

The hospital is the largest treatment center in the United States for patients with Fanconi anemia, with more than 100 actively seeking care. And the physician whose life ambition is to one day help find a cure for this disease is known to her patients and her colleagues as Dr. Margy.

Margaret MacMillan is co-director of the hospital's Fanconi anemia Comprehensive Care Program. She treats patients in offices on either side of the Mississippi, one where she sees children and one where she sees adults.

Jimbo Fisher talks with Dr. Margaret MacMillan.

MacMillan is a slight woman with a distinct laugh and luminescent personality that helps brighten the Fishers' darkest days. A hockey fan who is torn each time her hometown Toronto Maple Leafs play the Minnesota Wild ("I cheer for every goal," she says), MacMillan knew little about college football and certainly had never heard of Jimbo Fisher five years ago.

"I didn't know who they were," MacMillan said about meeting Jimbo and Candi for the first time. "To me they were parents of a child with Fanconi anemia just like my other parents."

Now, she is the woman the Fishers will turn to when it comes time for Ethan's bone-marrow transplant surgery.

Dr. Margaret MacMillan explains some of the research with which she is involved.

"She is genuine and honest and I trust her," Jimbo said. "What she sees every day and goes through and fights and gets close to those families, it's amazing."

Fishers fight for cure

When visitors enter the hospital they see a wall, separated by a hallway that leads to the first-floor wards, filled with names of donors.

To the left are those who have contributed hundreds of thousands of dollars, including Hall of Fame quarterback Brett Favre and his wife Deanna.

To the right are the names of 17 individuals, corporations, foundations that have donated at least $1 million.

Among them: 'Jimbo and Candi Fisher's Kidz1stFund.'

A sign in the lobby of the University of Minnesota Medical Center recognizes million-dollar donors.

The foundation has raised about $3.5 million, of which about 90 percent goes directly to the hospital. MacMillan called the Kidz1stFund a "game changer" when it was in its early stages and her opinion only has been strengthened.

"I was dumbfounded. I was just amazed that while trying to cope with the understanding of 'What is Fanconi anemia? What does it mean to my child?' … They immediately thought about other families."
— Dr. Margaret MacMillan

"Kidz1st allows us to act now and to change the face of medicine now," she said.

"It's given hope."

The Fishers not only are determined to prolong and make a better life for Ethan, but also for the other children affected with FA.

"The moment I met them, they said 'We want you to take care of Ethan, optimize all his health, but we also want to help other children,'" MacMillan said. "But I kept redirecting them saying, 'In this conversation we're going to focus on Ethan.'"

"I was dumbfounded. I was just amazed that while trying to cope with the understanding of 'What is Fanconi anemia? What does it mean to my child?' … They immediately thought about other families."

From there Kidz1stFund was created. Jimbo credits Candi for being the catalyst behind the foundation.

"Once they provided the hope we wanted to go into action and it was (Candi) that had the great idea to start Kidz1st and the ambition to do it," Jimbo said. "Then it was … 'We've come to grips with it, now we're going to attack it. We're not going to let it control us. We have to deal with it but we're going to attack it like it attacks us. Go at it.'"

Candi with a "Fight Fanconi" bracelet.

Said Candi: "I had to focus this energy into something positive or it's going to eat me up. I felt like it was our responsibility. No one knew what FA was."

Nick Engbloom, the development officer for the University of Minnesota foundation, cultivates relationships with donors while raising funds for the hospital. He has worked closely with Jimbo and Candi and the Kidz1stFund.

"I had to focus this energy into something positive or it's going to eat me up. I felt like it was our responsibility. No one knew what FA was."
— Candi Fisher

"It provides hope not just for the children in Minnesota but for children around the world," he said.

MacMillan credits the money raised by Kidz1st for helping prolong lives of those suffering from FA. According to MacMillan, just 8 percent of research grant applications are approved by the federal government. Kidz1st provides the money for the initial research before grants for further research are applied for, which greatly enhances the chances of having that application approved.

"The great thing about Kidz1st, they are giving us the money and trusting us to make all these decisions that no one else is doing," MacMillan said. "From that, hopefully, will spawn more researchers getting involved."

In 1998, 22 percent of FA patients who underwent a bone-marrow transplant survived past three years. Today, that number is 94 percent, according to MacMillan.

"In a sense, Ethan and other children with Fanconi anemia are ticking time bombs. (But) with this research things have changed substantially. In the past it was trying to get them to survive. Now they're surviving. Now we're saying, we need to optimize their health.

"It's like, 'Oh my Gosh, we have a good problem, our patients are living.'"

Ethan plays with a toy before his bone-marrow biopsy.

For a child to be stricken with FA, both parents must carry the gene, and Jimbo and Candi each carry one of the 18 known FA genes. After Ethan was diagnosed they had their older son, Trey, tested. It took five anxious weeks before they learned Trey, now 14, did not have FA.

The couple shielded Ethan as much as possible and were told to only answer questions he asks. One rule they enforced was to never use the word "disease" around Ethan or Trey.

But then Ethan learned of the hazards of being part of a family that lives in a fishbowl.

Candi Fisher.

ESPN ran a story about Ethan and Kidz1stFund before the Seminoles' game against Clemson in 2012. The following Monday, after many of his classmates saw the piece, Ethan had questions for his mom and dad.

"He got in the car and said, 'Mom, some kids said 'Ethan, you have a disease,'" Candi said.

The Fishers, who prefer the term "condition," calmed his fears. Ethan now knows his condition is called Fanconi anemia, but "he doesn't know all the ins and outs of that," Candi said.

That is the job of the battery of doctors and researchers, about 100 of them in total, MacMillan is leading.

In addition to bone-marrow failure, the risk of patients with FA developing cancer is 300,000 times higher than someone without FA. MacMillan said these children are being diagnosed with head and neck cancers that heavy smokers and drinkers develop in their 60s.

"With cancer a cell is being made that's bad, but (patients with FA) don't have the checks and balances to say, 'Hold on, don't keep producing that cell. It's a bad player. Correct it,'" MacMillan said.

"That's their inherent problem."

And FA patients can handle just 20 percent of the normal dose of chemotherapy given to cancer patients without FA. "If you give the full dose, they die," MacMillan said.

'If you looked at him you wouldn't know'

The trip to Minnesota this year was Ethan's seventh. Jimbo and Candi make sure Ethan does not dwell on "the real reason he's here" by scheduling as many activities and events as possible.

Ethan Fisher playing one-on-one with slam-dunk champion Zach LaVine of the Minnesota Timberwolves on March 8. Just a few hours before, Ethan had undergone a bone-marrow biopsy.

Fun time includes ice skating and attending Wild hockey games and Timberwolves basketball games. One trip he got to skate with the University of Minnesota hockey team and had his own locker, hockey sweater and stick. On this trip he watched the Wild play and attended a Timberwolves shoot-around two nights later, playing one-on-one with slam-dunk champion Zach LaVine, along with Adreian Payne and his favorite Timberwolves player, Ricky Rubio.

Ethan with the Minnesota Timberwolves.

And he was disappointed as temperatures soared into the upper 60s.

Which meant no snow.

Which meant no snowball fight with his dad.

Ethan's favorite activity in the hospital is playing the card game "Uno" with Kirstin Rayborn, the director of Kidz1stFund who accompanied Jimbo and Candi on the trip, and continually reminding Kirstin he has the upper hand.

Kirstin Rayborn, the director of Kidz1stFund plays UNO with Ethan.

"He's definitely a different soul," Rayborn said. "He has a love for life. There is always a smile."

Wearing the No. 40 hockey sweater of Wild goalie Devan Dubnyk, Ethan is ushered from specialist to specialist. He is repeatedly asked his name and birthdate, and he addresses the employees as "ma'am" or "sir."

The day starts with about eight vials of blood being drawn from Ethan, something he has become accustomed to but nonetheless remains unpleasant.

Vials of Ethan's blood for testing.

Candi sits down first, clutching her son on her lap. After informing the nurse the tourniquet around his arm was tight, Ethan had one request. He wanted the nurse to count to three before inserting the needle.

"One, two, three."

Ethan closed his eyes and Candi squeezed her son as tight as she could to help dull the pain.

Candi Fisher comforts her son, Ethan, 10, as a nurse inserts a needle to draw blood.

One of the physical effects of FA is that it stunts growth. Because of that, Ethan is administered human growth hormone six days a week. The result is that his weight is up nine pounds to 71 in the last year and his height more than two inches to 4-foot-5. When he was diagnosed, Ethan was in the first percentile in height and weight for a child his age. Now he is in the 21st percentile for his height and 31st percentile for his weight.

"The chart shows how fast he is growing. I'm impressed," the doctor tells Jimbo and Candi.

Jimbo grabs his son, gives him a big hug and plants a kiss on top of his head.

And by the look in his eyes, he did not want to let go.

The news is encouraging as Ethan makes the rounds seeing several specialists from an ear, nose and throat doctor to a cardiologist to a dermatologist to an endocrinologist and more.

Jimbo gives his son Ethan a kiss between doctor visits.

Ethan's blood levels remain in the abnormal range, some are up. One number that will always remain dangerously low is his platelet count. Normal counts range from 150,000 to 450,000. Ethan's is at 54,000. Because of that Ethan is prohibited from playing contact sports. The danger: If hit in the head he could develop a brain bleed, and if his blood is not clotting fast enough it could be fatal.

"Ethan is doing very well," Dr. Margy says. "He couldn't be doing better for a child with Fanconi anemia. If you looked at him you would not know anything is wrong.

"But, and there's a big but, the big but is he has Fanconi anemia."

Dr. Margy's advice to Jimbo and Candi:

"Do what you have to do and then forget about it. Live life."

The most difficult moment for Jimbo and Candi on this day is seeing their son still under anesthesia after the short procedure to biopsy his bone marrow. Neither leaves his side until he awakens, Candi standing at the head of the bed stroking her son's hair, Jimbo next to her, gently rubbing his leg.

Candi and Jimbo Fisher wait for their son Ethan to wake up after a bone-marrow biopsy.

Both at different times cradle their son's head with the tender touch of a concerned parent.

"He's special," Jimbo says. "God has blessed him with a special attitude or a demeanor or a perspective on life. He doesn't have fear and he attacks it."

Candi and Jimbo Fisher comfort their son Ethan as he wakes up after a bone-marrow biopsy.

 

 

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Video by Allen Eyestone/Palm Beach Post staff. Edited by Jennifer Podis/Palm Beach Post staff.