Friday, March 23, 2018

For FSU football coach Jimbo Fisher, Fanconi anemia hits home (w/ video)

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.

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 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 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."

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 6th 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?' "

Jimbo and Candi recall every detail of that day five years ago that 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.

Light for parents' dark days

The children's hospital at the University of Minnesota, which sits on the banks of the Mississippi River southeast of downtown Minneapolis, 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 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 is comes time for Ethan's bone-marrow transplant surgery.

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.

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.

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.' "

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. Trey, now 14, does 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.

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.

'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.

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.

Wearing the No. 40 hockey sweater of Wild goalie Devan Dubnyk, Ethan is ushered from specialist to specialist. The day starts with about eight vials of blood drawn from Ethan, something he has become accustomed to but nonetheless remains unpleasant.

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

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 2 inches to 4 feet 5.

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

Jimbo grabs his son, gives him a hug and plants a kiss on 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.

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."

Cox Newspapers

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