This was to be a story of triumph. It was to tell of Mikey Czech’s return to school, his battling back against his brain tumor, his desire to be treated just like everyone else.
“Treat me like Mikey,” his father, Stephen, related a few weeks ago “Don’t treat me differently.”
Instead, this is a tribute to a brave young boy who touched the lives of so many, and who leaves a legacy of courage and hope.
Mikey died Sunday, at the age of 11, watching the pregame show for the first weekend of National Football League games, wishing he could be on the gridiron.
A Celebration of Mikey’s life will be held at 10 a.m. Friday, September 12, at St. Aloysius Church. Those who attend are asked not to wear black, as the services “will be a celebration of his wonderful life.”
During the past nine months, Mikey met Pope Benedict XVI, stood on the field and sat in the dugout with the New York Yankees, and battled a brain tumor.
The tumor had shrunk to nearly nothing, thanks to treatment in a clinical trial, and Mikey was recovering while starting sixth grade at Saxe Middle School. Then cysts filled the voids left by the diminished tumor, and Mikey began to again display some of the symptoms caused by the pressure the tumor once exerted. Side-effects of the treatment were manifesting themselves as well.
The next course of action was being discussed when, unexpectedly, Mikey’s father found him Sunday in his favorite chair.
‘Our world changed ...’
Something was different when Mikey returned to fifth grade at Saxe after Christmas break, 2007.
“I noticed that he was so tired,” his mother, Jennifer Czech, said. “He’s the most energetic kid, on the go 24/7 like his dad.”
She figured it was the change in routine, the return to classes, that left him laying around.
“That didn’t bother me as much as when he said he was exhausted,” Jennifer said.
Mikey was also turning his head to watch television, “kind of out of his left eye.” When asked, he said nothing was wrong.
Finally, he said, “Mom, I don’t want to get glasses.”
He also said he had double-vision in one eye.
Jennifer told her husband, and it triggered a memory in him of the friend of a daughter who had a tumor behind her eye. He told his wife to get Mikey to a doctor.
Almost like an itinerary, Steve remembers January 6, 2008: 9 o’clock in the morning, a trip to Dr. Thomas Flynn, Dr. Harrison Pierce was filling in.
“Dr. Pierce is the one who diagnosed it,” Jennifer recalled. “He said it was either Lyme, an infection on the brain or a brain tumor.”
At 11 o’clock, Steve recalls going to Norwalk Hospital for a CAT scan; “1 o’clock, there’s something there.”
The Czechs were first told the scan was negative.
“We were like, ‘Maybe he just has Lyme then,’” Jennifer said.
Then they overheard a doctor on the phone, spelling their name, saying, “It’s not negative, it’s positive.”
Jennifer said she and her husband looked at each other, and her husband asked the physician.
“He said, ‘Oh yeah, this happens all the time,’” she recalled.
But for the Czechs, “Our whole world changed at the drop of a hat,” Jennifer said.
Steve describes feeling as if warm water was being poured over his head, dousing him, while someone hit the back of his knees with a bat. Someone reached under his arms to keep him from collapsing.
Jennifer described her reaction as “Disbelief. Why is God doing this to us? A lot of different emotions. I’ll never forget it, that’s for sure. It’s a matter of seconds that changed our life.”
“We couldn’t tell Mikey, we didn’t want to tell Mike what was going on till we knew for sure, till we knew what the diagnosis was,” she said.
At 3 p.m., Steve recalled, Mike was taken by ambulance to Yale-New Haven Hospital.
“At about 8:27,” he said, a pediatric neurosurgeon confirmed the diagnosis.
Mikey was given three to six months to live.
Nearly eight months later, when asked what the hardest thing was for Mikey, his father quickly replied, “The fact that he was diagnosed on his birthday. January 6, his 11th birthday — that’s one thing that gnaws at me, too. Should we have waited till the seventh, the day after? It is what it is, but to this day ... .”
Steve told the staff at Yale it was his son’s birthday. They got an ice cream cake for him.
Two days later, Mikey went home.
“As a mother, I thought ‘My God, I could lose my son.’ I never thought this would happen to us,” Jennifer said, adding that they told Mikey what he needed to know to stay positive.
A network of friends
Before Mikey’s diagnosis, Steven Czech logged 100,000 to 125,000 air miles in his work managing hedge funds. He’s now established his own fund, based in Stamford.
But the morning of January 9, 2007, all those miles and all those hands shaken were there to support the family.
Accustomed to reducing risk and being in control of the situation, Steve admitted to his wife, “We have no idea what we’re doing here.”
He composed an e-mail asking for help from anyone with any knowledge of childhood brain tumors. Within a half hour of sending those 600 to 700 missives, he had 100 responses.
Among them was a note from Scott Amero, who had been Mikey’s soccer coach four years earlier, saying that his partner, Larry, was on the board of New York University, home of the Hassenfeld Clinic.
Czech soon learned that Amero was vice chairman of Black Rock, a global provider of investment management services. Larry was Laurence M. Fink, Black Rock’s chairman and chief executive officer.
Forty minutes later, a second e-mail informed Steve that someone at NYU could help, asking how soon they could get there.
The Czechs were at Hassenfeld that afternoon, meeting for the first time with Dr. Jeffrey C. Allen.
Allen was expecting them. He had received e-mails from “all over Wall Street” and elsewhere advising him of Mikey’s diagnosis and the family’s plea for help.
Under Allen’s supervision, the Hassenfeld Clinic is one of 200 institutions world-wide participating in a clinical trial of a new treatment of Mikey’s tumor, known as diffuse intrinsic pontine glioma.
Patients are given Metoxifan, a radiation sensitizing agent, approximately four hours before the administration of external beam radiation. The agent “potentiates the efficacy of radiation therapy,” Allen explained.
Treatments are given daily over a six-week period.
The effectiveness is not known, but Allen expressed hope it would result in better outcomes for patients.
“What bothered me was the pain he was in,” Jennifer Czech said. “It was not just the tumor — the steroids were worse. He couldn’t walk, he was weak.”
Despite being physically weak, his mother said Mikey remained strong throughout the process.
“My son and I are very close. We have a very special bond,” she said. “It’s just very hard for both of us to even see our child going through this.”
A Web of support
Those close to the Czechs have been regularly updated throughout Mikey’s treatment and recovery by e-mails composed and sent by his father.
Steven described the correspondence as cathartic, and they allowed him to keep those who wanted to know how Mikey was doing and what they could do to help informed.
Young and old donned wristbands in a marbled blue and white pattern — colors chosen by Mikey — stamped with “Stay Strong” and “Feel Better, Mikey.”
Signs at baseball games this spring also urged Mikey to stay strong, and children signed cards and did all they could for their friend.
“His friends have been just unbelievable. They’ve been so supportive,” Lisa Popper said. “When he was so sick, in the middle of the steroid treatments, even if Mikey couldn’t do anything they’d go over, play video games, hang out with him.”
Mikey’s illness was hard for Popper’s son, Michael, but “once he was able to spend time with him, it was like old times.”
Popper recalled that Meg Domino make a blanket, and had the idea of children signing it. Messages such as “Go Yankees,” “You’re the best quarterback” and “You’re the best football player” joined words of encouragement that were always within Mikey’s reach.
So when Mikey returned to school toward the end of last year, “It wasn’t like he had missed a beat,” Popper said. “He was with old friends.”
“The entire town rallied to assist us — everyone we knew and hundreds we did not,” Steve said. “It was amazing.”
Neighbors offered us use of private jets to ferry Mikey around the country for opinions; offered use of apartments and condos so the Czechs could stay in New York City if Mike was too tired to travel, and offered places elsewhere for times the family just had to get away; provided three meals a day every day, as well has housekeeping, laundry and dry cleaning; arranged car service to and from NYU for seven weeks, and had a car available 24/7 in case of emergency; and set up tabs at local stores and restaurants so people visiting the family could eat and shop free of charge.
New Canaan Baseball prepared a 30-foot-long, five-foot-high banner for Mikey (an avid baseball player), had it signed by every member of New Canaan baseball and hung it on the outfield fence during Mikey’s first game back.
More than 40 moms in town (“M&Ms or “Moms for Mikey”) organized and established the distribution network for the Mikey wristbands that were sent to more than 20,000 people in 20 countries, including members of the New York Yankees and NFL quarterback Kurt Warner.
Students at Mikey’s school prepared and signed an enormous banner for his first day back, and teachers had quilts made bearing “get well” messages from each child.
Classmates at Saxe and in CCD at St. Aloysius sent bundles of cards and gifts every Friday while he was out of school.
Meanwhile, more than 60 families “we had never met” offered to set up a fund to cover miscellaneous expenses, Steve recalled.
“The community of New Canaan has been absolutely wonderful,” said Jennifer. “I would not want to live anywhere else, with how they’ve pulled through for us and for Mikey.”
While working to make a miracle happen, the Czechs had an audience with Pope Benedict.
Mikey then made a pilgrimage to see his baseball heroes at Yankee Stadium, serving as honorary bat boy on a day organized by the Make-A-Wish Foundation. Some players, such as Bobby Abreu, spent significant time with Mikey, and Abreu and Johnny Damon could be seen wearing his blue-and-white wristbands long after the visit.
The family also met the Doobie Brothers at the first rock concert for Mikey and his sister, Sydney.
Anne Worcester of New Canaan, director of the Pilot Pen tennis tournament at Yale, and her team of Sara Wilcox and Meredith McCaslin, made accommodations for Mikey at a regular Czech family event.
With the help of Kathy Giusti, founder of the Multiple Myeloma Research Foundation, and her husband, Paul, the Czechs have established a foundation in Mikey’s name to continue to fight pediatric brain tumors.
Steve has also been named to the board of directors overseeing the Hassenfeld Clinic at NYU Medical Center.
Knowing what the children who are patients at the Hassenfeld Clinic are going through, the Czechs teamed with local establishments to offer a treat. Baskin-Robbins and Joe’s Pizza served food during Mikey Czech Ice Cream and Pizza Day, with volunteers traveling to New York to serve patients and local families footing the bill.
They’re an extraordinary family,” Dr. Allen said.
He added, “It’s a lovely gesture, and I think they get a lot of pleasure out of it. Here’s a guy (Steve) who’s confronted with a likely loss of a child — that’s how serious this disease is — and he tries to do what’s best for his child and raise awareness in the local community and beyond.”
Words about Mikey show him following in his father’s footsteps.
“He made an enormous mark in a short time,” Superintendent of Schools Dr. David Abbey said during Monday night’s Board of Education meeting. “He talked the talk and walked the walk. How many people can say that?”
The Stephen J. Czech Family