Bounding across the family’s living room, gliding onto the fireplace hearth, cracking jokes and flashing wit, Jackson Kloes is the picture of vitality.
Outside, Jackson swings at Wiffle balls thrown by his father, Craig, head coach of the successful Sheboygan South baseball team. In the kitchen, father and son bond, preparing their favorite blueberry muffins and sausage for the family.
“He wants to be a chef when he grows up,” said his mother, Jenny.
During the week leading up to Father’s Day, there are hugs aplenty in the Kloes home. Craig rubs his son’s back and reaches his strong left arm around the little man’s shoulders. On Jackson’s T-shirt is a blue star — a symbol of the Make-A-Wish Foundation.
“This is a very special day for me because Jackson treats me like a king; he is an extremely thoughtful boy,” Craig said. “As parents, we are trying to create as many memories as possible.”
For one week in May, in the middle of the Redwings’ charmed baseball season, Craig Kloes put assistant coach Will Madson in charge of the South team and with his family reported to the National Institutes of Health in Bethesda, Md.
His son, much more than his players and fellow coaches, needed him.
“I think the meaning of Father’s Day is a day to really appreciate your dad for what he’s done for you,” Jackson said. “He does a lot of nice things for us, takes me fishing and plays baseball with me. He takes me to the doctor and drives me to the Mayo Clinic. You should treat people how you’d want to be treated.”
Jackson is one of only three 8-year-olds in a 300-patient national study centered on a life-threatening condition known as neurofibromatosis type 2, or NF2, a genetic disorder in which tumors form unabated in the body, particularly on the nerves of the brain and spine.
In Bethesda, Jackson had three magnetic resonance imaging tests, of two to three hours each, and underwent vision, hearing and balance testing.
No known cure for NF2 exists, but Craig Kloes is resolute in his belief that in the coming years medical advances will give his son increased hope.
“What’s great about the National Institutes of Health,” Craig said, “is that if there is any cutting-edge treatment, we’re in the loop.”
His optimism, however, is tempered by the harsh facts the family has been forced to digest ever since December 2001.
When Jackson was only 4 months old, Craig and Jenny grew concerned their youngest son was having vision problems and brought him to Dr. Jean Schott, an ophthalmologist in Sheboygan. She detected a mass on both retinas.
“(A hematoma) was discovered as an infant, which was a blessing,” Craig said of the finding later that day at the Eye Institute in Milwaukee. “If not for early detection, we’d have no clue what was going on. Now we can be proactive. But all that we can do is monitor the tumors and have them removed if needed.”
In June 2002, through genetic testing, the Kloeses were informed Jackson had NF2, which affects one in 25,000 to 30,000 births, and that their son’s gene mutation was spontaneous, rather than hereditary. The existence of NF2 in children, they learned, is considered more dire than in adults because tumors grow more aggressively in youngsters.
During his first three years of life, Jackson was in vigorous therapy.
“When he was 3, the therapist gave up on the idea that he’d ever walk or crawl,” his mother said. “Then he just took off.”
In the five years since, Jackson has been determined to pack years into months. As some NF2 patients don’t reach adulthood, time can be invaluable and fleeting.
Early in 2009, doctors discovered that a tumor touching Jackson’s optic nerve, in his brain, had grown from zero to 3 centimeters in less than a year.
The family’s “lot in life,” as Craig calls it, was magnified prior to the surgery when Jackson leaned in toward his father and asked, “Dad, is this something that could kill me?”
Craig, 43, a physical education and health teacher at Farnsworth Middle School, steadied his son with reassuring words. But he knew the stakes were high.
“I was worried at the surgery, the severity,” Craig said. “When they go over the risks and expectations, it kind of hits home. It got to the point where I thought, ‘This is kind of the big leagues.’ It’s that fear of the unknown. That’s the thing with NF2: tumors are so unpredictable.”
The tumor was not judged malignant, but atypical, and was removed by Dr. Michael Link at the Mayo Clinic in March 2009.
“But if you have one near your brain stem, it doesn’t matter if it’s benign. You can’t get to it,” Craig said.
Jackson and family will return to the Mayo Clinic in August and to the NIH in November; the latter a biannual visit for which all expenses are covered and the family meets with Dr. Ashok Asthagiri.
“Jack’s tough. That’s the thing. We never know if he’s sick,” his mother said. “If he has killer headaches, he’ll never tell anyone. He’ll throw up at school and not tell anyone because he doesn’t want to miss any more school.”
Despite missing 33 days in 2009-10, Jackson’s reading scores fall in the 99th percentile of students, and the soon-to-be fourth grader at Jackson Elementary School has been enrolled in the school district’s Program for Academic and Creative Extension. PACE is for the gifted and talented.
“What they told us at the Mayo Clinic is that there’s a dark side (with NF2),” Craig said. “But that he’s going to amaze you with what he can do.”
Among his interests, Jackson bowls, sleds, fishes, rides his bike, explores Kohler-Andrae State Park and goes to the movies. But for all his energy, Jackson faces many obstacles.
“We have a lot of support, family and friends,” Craig said. “You do what you have to do to make it through the day. You stay positive, but you have to be realistic.”
Jackson is legally blind, only able to see out of the periphery of his eyes. He reads with the help of a magnifying machine and walks with a cane in public. He has a mobility teacher, Diane Gafney, who helps him with his orientation skills. He has tumors over both retinas and on three facial muscles and is having problems with dizziness, nausea and balance, belying his sure-footed movement through the family’s living room last week. In his ears, he has bilateral tumors, called acoustic neuromas, and will lose his hearing.
“It’s hard because you progressively see more things taken away from him,” said Jenny, 40, a first-grade teacher at James Madison Elementary School. “It kills him now because (sister) Emma goes out and plays, and the doctors have him on restriction. He’s so cognitively able, it’s heartbreaking. To see him so unhappy … Yesterday, he did a lot of crying. He just wants to be normal, like everybody else.”
The Kloeses cannot say enough of the earthly angels they have encountered during this journey and how Jackson’s condition has brought the family together.
They call his big brother Jacob, 17, his “caretaker,” while Emma, 11, sang “Star in the Sky,” written and composed by Jackson, at the school talent show on June 9. Jackson, in turn, will write his parents love letters when he can tell their stress levels have peaked. Jacob has Asperger Syndrome and Emma an organic impulse disorder.
“It’s very difficult having three special-needs kids,” Jenny said.
The Kloeses said the outpouring of support from fellow teachers has been impressive, along with precocious gestures by Jackson’s good friend, Zach Polster, a child without disabilities who has brought a cane to field trips and is learning Braille with this classmate.
“So Jackson doesn’t feel left out,” Jenny said.
The Make-A-Wish Foundation and Give Kids The World have been generous to Jackson. Today, the Kloes family hopes to embark on a tour of 21 amusement and waterparks in 21 days, made possible by GKTW. And soon Jackson will be pictured on Make-A-Wish literature.
“I think he’s made a difference in people’s lives,” his mother said. “He likes the good in people and he likes what’s right and he’s appreciative.”
Jackson has made an indelible imprint on the lives of his siblings and parents.
“If you’re contemplating doing something now or later, you do it now,” his father said. “I think I am more straightforward now, more sensitive, more aware of what’s going on around you. The cliche of stopping and smelling the roses. …”
Craig and Jenny hold dear to them every detail of Jackson’s life, every memory, his every reaction — snapshots in time that other parents might not deem worthy to preserve.
“Remember when that giant, bouncing ball got stuck in the tree?” Jackson said last week to anyone within earshot. “That was great.”
And what about that smile that graced Jackson’s face in early June when his father was named the Fox River Classic Conference coach of the year, after the Redwings had broken 28 of 47 individual and team records, tied for the East Division title and finished with a 19-7 record?
That smile stretched from here to Bethesda, Md.
“I think the character of that team, there was always concern for the family first,” Craig said. “There are bigger things in life than baseball.”
Star Josh Gruenke bought Jackson a framed photo of Milwaukee Brewers slugger Prince Fielder last year, while standout Sam Raff spoke of the Kloes family and of South volunteer assistant coach Mark Reinemann, who is battling cancer, in a speech June 10 at the team banquet.
Afterward, the smallest member of the team waited in the wings to congratulate Coach. It was Jackson’s turn at-bat, and he was just one of the guys.
“That’s the saddest thing about NF2,” his mother said. “He’s wanted so badly to play on his daddy’s baseball team.”
(Published in The Sheboygan Press, June 20, 2010)