Biking bonds two boys with health-riddled pasts
Published 3:21 pm, Thursday, July 22, 2010
Each had their harrowing moments. For Parker Ward, it came when he couldn't even cut a pancake.
For Luke Whittaker, it was the unthinkable: the return of leukemia after 18 months of chemotherapy and recovery from the disease -- and he wasn't even 7 years old yet.
But today, both 12-year-old boys are doing well and preparing to ride in this weekend's Connecticut Challenge, the charity bike ride in Fairfield that raises money for unique cancer survivorship programs in Connecticut.
Participants can choose between the 12-, 25-, 50-, 75- or 100-mile course options. The two Darien boys will give it a full effort in the 25-mile course.
Luke and Parker met each other at the beginning of last year; they shared homeroom together at Middlesex Middle School as they embarked upon a scary time: sixth grade. Luke -- and everyone's -- eyes immediately found Parker for the obvious reason: he was in a wheelchair. Luke has overcome his battle with leukemia, though his parents, Brenda and Martin, still don't feel out of the woods.
Parker has not yet conquered the autoimmune disease that afflicts him (Guillain-Barre syndrome). It is something that has most likely permanently damaged some of his nerves. The one-in-four-million disease has turned his immune system against the inside of the nerves in his joints. Parker's no longer in a wheelchair, but it's been a long battle back to where he has the ability to ride a bike, swim in a pool or go for a jog.
He'll never have reflexes again, though. His fingers don't have the capacity to straighten completely; he uses custom-made pens that have grips which adapt to his curling fingers. He cannot open bottles and sometimes has trouble using utensils. Though he has physical range of motion, doctors expect him to have to wear foot braces for another year, and there are still substantial fatigue issues.
"It's one of those things where they don't know," Wendy Ward, Parker's stepmother, said.
Truly, they don't know, as evidenced by doctors originally telling Parker he would be "back to normal" within a few weeks when the first signs showed. This all began after the family believed Parker had a lacrosse-related injury in March of 2009. They took him to a pediatrician because of the bizarre symptons.
"He thought Parker was faking it," Ward said.
No, he most certainly wasn't. Soon enough, the cycle of hospital and doctor visits came. Some doctors believed it to be a respiratory infection, while others centered in on a problem the molecular structure in his nervous system. He stayed at Yale-New Haven Hospital for five nights for tests. From there, it was believed he'd be at full strength soon enough.
So Parker did home therapy in the weeks that followed, but progress wasn't being made. A trip here and a trip there, and suddenly he was staying in a 24-hour hospital in Valhalla, N.Y.
That turned into a month-long stay. Still, he wasn't progressing. Still no definitive diagnosis. One-in-four-million is tough to accurately asses.
Eventually the Guillain-Barre verdict came down.
"His body deteriorated," Ward said.
Parker returned home to Darien in August of 2009 and went to Stamford Hospital for physical therapy and treatments. Doctors told the family it was 50/50 if he'd ever walk again.
He walks just fine now.
And Parker's muscles were never threatened, so now he's doing physical therapy once per week to gain the strength he lost while laying in a hospital bed night after night. Currently, Parker's 5-2, 110 pounds. Puberty is about to begin. At his neurology appointment last week, Ward said the physician was startled by how far along Parker had come in a year. He swims with the Piranhas at the Darien YMCA, and being a part of the Darien High swim team a few years down the road us a big-time goal.
Luke's thinking soccer. The 4-11, 85-pound to-be seventh-grader just witnessed his first Major League Soccer game in person Wednesday night, when he traveled to Philadelphia.
Luke got his leukemia diagnosis -- the first one -- as a 5-year-old. When the Whittaker family, which is six people deep, decided to move from Toronto to Darien six years ago, Luke was in the exit stages of chemo.
Within three weeks of being in town, the cancer came back. The family was frightened for the obvious reasons, but also because they didn't know anybody. The first person to give was his sister, Grace. All of 2 years old, she was a match for the bone marrow he needed.
"The chemotherapy was intensified and he needed a (bone marrow) transplant," his mom, Brenda Whittaker, said. "They had to take as much (bone marrow) from her as they possibly could without endangering her. She donated three times as many cells as he needed."
Luke, the oldest of four, was also a rare case a la Parker's situation. It's not often a young boy has to deal with multiple bouts of cancer, let alone recover from them strongly. Now, it's long-term when doctors talk about his life. That most definitely was not always the case. When fighting the leukemia, Luke didn't have the strength or ability to get up and peek over the window ledge in his hospital room at the Memorial Sloane-Kettering Cancer Center -- until the last day he stayed there.
"After nine weeks he hopped on the window ledge to finally see the view," Whittaker said. He's enjoyed it ever since.
Throughout that process, the Whittaker family became very intimate with such a large portion of the people that lived around them. Three years ago, a child won a bike in a raffle. Shortly thereafter, that child saw Luke's story in the newspaper and decided to donate the bike to Luke. It's the one he's ridden in every Challenge since he began, and the one he'll hop on this weekend.
"We are so grateful for this community," Whittaker said. "The community, not knowing us at all ... what really got us is the people that would drive all the way into the city to donate blood."
One person who could donate the rare type, A negative, was a youth hockey coach, Tom Raymond. Since then, the two have referred to each other as blood brothers. Luke has taken up hockey as well.
He's a catalyst of inspiration for Parker, just like Parker is for him.
"It's really fascinating, I probably couldn't even deal with what he's been through," Parker said of his friend. "He's so strong, but he's pretty quiet."
Parker taught Luke about the value of fundraising after the friendship grew when the two saw each other at the First Congregational Church in Darien.
"It's a similar situation because he was in the hospital and he had to go through a lot of stuff like I had to," Luke said.
And while Parker infused some philanthropy into Luke's life, participating in Saturday's event stemmed from his father, Martin's, initiative. A year after Luke left the hospital Martin took Luke and his siblings to a movie on a summer day. Prior to the start of the movie an ad ran for the Connecticut Challenge.
"Martin was struck by the fact Luke was a cancer survivor -- and even still a cancer patient at that point -- so Martin felt it was time to acknowledge they had moved on to another stage," Whittaker said.
The first year Martin rode it on its own, and for his son. The following year, Luke pedaled in the opening "Survivor's Lap," which is a quarter-mile loop around the green that kick-starts the festivities and features all participants who are cancer survivors or battlers. He did that when he was 9. He's done it every year since, and will do it again this year before starting the 25-mile portion of the ride.
"It's very emotional," Whittaker said. "You see riders there with prosthetic legs and people who are clearly just coming out of treatment."
Parker said the person most responsible for getting him to ride this weekend is a girl named Sammy Mazzone. Luke called her "a source of inspiration." She's the one that wrote Parker a letter, asking him to be a part of the big day. Her father, Bob, is the organizer of the event.
After getting the letter, Parker began training for the 25-mile trek. He and his father have biked around Darien, into Norwalk and beyond in preparation for it. But fatigue still remains an issue. When he first began 25 miles meant four lengthy stops for water and a recharge of the battery. Parker's whittled that down to two, and Saturday he just may push himself to only one break. Friends and family will be by his side.
He said he tires easier than most because he "doesn't do it right."
If anything, Luke and Parker have showed hundreds they couldn't have done it any more correctly or with much more bravery than what they displayed by beating their diseases at such young ages.
What we could have here is the beginning of a beautiful, healthy friendship.