Carl Robert Langley was 8 when he learned he had a rare malignant brain tumor. Headaches, vomiting and low blood sugar counts had been attributed to sinus infections several times before it was discovered that a pinealoblastoma was creating irreversible pressure on his brain.
The life of the Fort Fairfield boy was slipping away April 2, 1994, as his parents drove him from Aroostook County to Bangor for surgery to relieve the pressure.
“Thank God my mother-in-law knew Dr. Sam Rideout,” recalled Carl’s mother, Linda Langley, of the day the Fort Fairfield surgeon who had examined the boy ordered them to demand a CT scan in Presque Isle immediately. It was a Saturday and they had an appointment the following Tuesday. Rideout said not to wait.
“You looked in his eyes and you knew something was wrong in his head,” Linda said. “We left home with $27.” They learned later if they had waited at all, Carl Robert would not have survived the weekend. When they reached Bangor he was rushed into surgery. His doctor told him he might live for three months.
“You can’t tell me when I’m going to die,” Carl responded. “That’s between God and me.”
During the next three and a half years, Carl Robert not only proved his claim, but also discovered his power to inspire charitable giving.
Today, 15 years after his death on Jan. 23, 1998, Aroostook County children with life-threatening illnesses and their families continue to benefit from fundraising efforts Carl Robert set in motion during his short life. The Carl Robert Langley Dream Foundation, formed to sustain his legacy, has donated more than $78,000 to County hospitals, pediatric and emergency room units and to families in need of assistance with expenses associated with the treatment of serious childhood illnesses. In addition, since 2003, when Carl would have graduated from high school, $66,000 has been awarded in annual $2,000 renewable memorial scholarships for Aroostook County students to attend college.
“Carl’s uppermost concern was always doing for others and learning,” said his mother. “He was always thinking of ways to help raise money for less fortunate citizens due to illness.”
Treatment for his illness required many visits to hospitals for chemotherapy, blood transfusions, infections and isolations, plus a stay at the Ronald McDonald House when he was in Bangor for radiation. Having been a patient in Bangor, Carl Robert — named for his Langley and Milliard grandfathers — found Aroostook County hospitals lacking in things to help young patients pass the time.
“Kids need something to do. They can’t just lie there,” he said. So he started a project called Just for Kids on Peds to raise money for toys and games to give to hospitals’ pediatric units in Fort Kent, Caribou, Presque Isle and Houlton.
He learned he could get family members and friends to solicit pledges from other family members and friends to raise money for a good cause. Walmart challenged Carl to raise $500 and offered to match the sum. He was short of his goal when he had to be admitted to the hospital, so he made cookies and sold them to the nurses to win the challenge, giving him $1,000 to buy toys, televisions, Nintendos and other games. In 1997, he raised $950, selected toys and games appropriate for ages 2-16, and delivered them to a local hospital himself.
When Carl was well enough to be outside, he discovered horseback riding through Operation Liftoff in Portage. Coordinated by horsewoman Sarah Brooks, the project raised funds to grant the wishes of children with life-threatening illnesses. Individuals who solicited pledges for the cause participated in a trail ride. Carl Robert won a trip to Disney World from Operation Liftoff.
“He chose Disney World because he thought his little sister [Danielle] would enjoy that more than car racing at Daytona,” which would have been his first choice, his mother recalled.
Carl was so grateful for the trip, he dedicated himself and his whole family to raising money for Operation Liftoff so other children could have similar opportunities. In three years, he raised $9,000 for the fall trail ride in Portage, gathering more pledges than any other participant in 1997.
He also rode a horse on the trail ride for two years, accompanied by his dad, Lee, and many friends. In 1997, his last ride, it took five shots of morphine to get him through the day, but he was determined to finish the ride with his dad on one side and his oncologist, Dr. Sam Lew of Bangor, on the other.
“He never complained or said ‘Why me?'” Linda recalled. Sarah Ulman, his teacher at Fort Fairfield Middle-High School, concurred. “He was very smart, very upbeat,” she said, describing his role among fellow classmates as “a peacemaker.”
On Aug. 28, 1998, Carl Robert would have been 13 years old. Despite the pain of losing him, his family and friends decided to celebrate his birthday with the kind of project Carl Robert might have organized. They launched the Carl Robert Dream Ride and Walk, a fundraising trail ride at Rocking S Ranch riding stables owned by Steve and Sarah Ulman, located across the road from the Langley home in Fort Fairfield.
Now it its 16th year, the weekend event is the culmination of fundraising efforts by participants who gather pledges to help County families of children with life-threatening illnesses, to support Carl’s JFK on Peds project, and to fund the annual scholarship in Carl’s memory.
This year’s event begins at 5 p.m. Saturday, Aug. 24, with a pig roast and auction at Fort Fairfield Middle-High School. The next day, riders who have their own horses will gather at Rocking S Ranch for a 1½-hour trail ride beginning at 10:30 a.m. At 11 a.m., those without horses begin a hike together on a trail along the Aroostook River. At noon, riders and hikers meet up with other friends and family members for a potluck meal.
Last year’s ride attracted 37 riders and an equal number of hikers ranging in age from 13 to 70. Prizes are awarded to the top fundraisers in different age groups. The Dream Ride raises between $11,000 and $12,000 each year with enthusiastic participation from young people.
“Those young people raise a lot of money,” Linda said.
When asked how many families have benefited from Carl Robert’s Dream, Linda responded, “Let’s see, do I look in the computer or the check book?” She ended up looking at both to count 75 Aroostook County families who have received assistance of between $500 and $1,000 to help, mostly with travel expenses, during a child’s treatment. The patient must be younger than 18 and the illness, treatment and travel needs must be verified. Last year Linda presented checks to 16 families.
The funds are managed by the 10-member board of the Carl Robert Langley Dream Foundation, and Linda presents the checks personally each year.
“I wish every board member could meet those families when I give them the check,” she said. “Mothers and fathers come through the door; they cry, I cry, we hug. They ask me, ‘How do we get through this?’ It’s hard for them. It’s hard for me. I’ve been through it.”
For information, call Linda Langley 473-4495.
Kathryn Olmstead is a former University of Maine associate dean and associate professor of journalism living in Aroostook County, where she publishes the quarterly magazine Echoes. Her column appears in this space every other Friday. She can be reached at firstname.lastname@example.org or P.O. Box 626, Caribou 04736.