2010-12-23 / Health & Wellness
Family keeping the faith in the face of rare illness
14-year-old is battling bone cancer
Life for the Knickmans—Roy, a 45-year-old firefighter; Debbie, a 47-year-old stay-at-home mom; their sons, Andreas, 14, and Bo, 12—changed dramatically in July 2009, when Andreas was diagnosed with a rare bone cancer called osteosarcoma.
The cancer has reduced the agility of the once-athletic teenager and could cost him his life.
As word spread in the community about Andreas’ illness, so did the support. Friends, casual acquaintances, even strangers offered help. People brought the Newbury Park family meals and sent Andreas gifts.
“It’s been phenomenal as far as the support . . . almost overwhelming,” Roy said last week.
Newbury Park resident Jack Nosco organized two cycling fundraisers. Last year a bike ride through the Santa Monica Mountains raised $15,000.
“It was pretty cool,” said Nosco, a Ventura County firefighter.
This year the event drew more than 300 cyclists from across the country, Europe and Australia, raising more than $30,000. Nosco hopes to raise $70,000 more for the family through an online raffle at his website, www.mikenosco.com.
A cycling enthusiast and community track team coach, Nosco knew of Roy Knickman long before Knickman volunteered as the assistant track coach four years ago.
Nosco remembers when Knickman won a bronze medal in cycling at the 1984 Olympic Games in Los Angeles.
Helping the family is the right thing to do, he said.
Roy and Debbie are thankful for the support.
“We’re incredibly grateful for the help everyone gives us. Not only that, we feel like we’re not alone,” Debbie said.
“I think that’s the one thing that’s kept all of us able to keep our heads in this,” he said.
In April 2009, Andreas complained of a pain in his left leg. A lump later developed there. The family thought he’d injured himself while skiing or cycling.
An orthopedic doctor took an X-ray but found nothing. After four weeks of physical therapy, Andreas felt better.
Three weeks later, Andreas was having a routine physical when the family pediatrician noticed the lump and recommended Andreas have an MRI as soon as possible.
Two hours after the procedure, Andreas was admitted to Childrens Hospital Los Angeles, where he was diagnosed with osteosarcoma, a rare bone cancer that annually strikes about 400 American children, usually adolescents going through growth spurts.
The cancer had already spread to Andreas’ lungs. Doctors removed a tumor from his left lung and ordered rounds of chemotherapy.
Andreas underwent another surgery to replace the malignant thigh bone in his left leg with a prosthesis and an artificial knee.
In February 2010, doctors found no cancer in Andreas’ body. But the good news didn’t last. In September, tests revealed four tumors in his left lung, and Andreas underwent another surgery.
Now, Andreas is in the middle of a 30-week regimen of chemotherapy sessions. He spends the first week of each three-week round in the Los Angeles hospital, receiving six consecutive days of chemotherapy. He returns to the hospital twice a week for the next two weeks to receive blood transfusions and a trial drug. On those days, he can be at the hospital 12 hours or more.
Medical science has made little if any advancement in the past 30 years treating osteosarcoma patients, Roy said.
The cancer is so rare that there’s no financial incentive for drug companies to invest in research that would increase the survivability of patients. Andreas is participating in a drug trial for pediatric osteosarcoma patients that could save his life, Roy said.
Life with cancer
The family has been aided not only by moral support from the community but also by donations. Roy missed nearly eight months of work last year, sharing with Debbie the responsibilities of caring for Bo and staying by Andreas’ side at home and in the hospital. This year, he’s missed two months and used up all his leave time.
Even so, Roy said, “We’re making it all work.”
Roy and Debbie try to carve out time for Bo, not wanting him to feel neglected. They also must deal with their own feelings of vulnerability.
“It’s very, very draining when you’re trying to balance everything,” Roy said. “It’s . . . hard to stomach the helplessness of being that guy who can’t do much of anything but be there for your kid.”
To boost the couple’s emotional stamina, Roy’s mother comes to the hospital or the house to stay with Andreas while they take a break.
Roy and Debbie must also motivate Andreas, who’s tired of being sick. Knowing how much their son loves airplanes, Roy bought him flight lessons at the Camarillo Airport. Andreas has taken four lessons and logged six hours of flight time.
In February, Debbie plans to take Andreas and Bo to Cape Canaveral to watch a space shuttle launch. The family should be able to fit the trip in between Andreas’ chemotherapy treatments.
Recuperating from treatment last week, Andreas wasn’t available for an interview. But his longtime friend Joe Barnes was.
Joe, 14, and two other friends visit Andreas at least once a week.
“We make him laugh, tell stories; we have fun playing Xbox,” said Joe, Andreas’ buddy since second grade.
The boys find other ways to have fun. Once Andreas held onto a rope tied around Joe’s waist and Joe, riding a bicycle, pulled Andreas in his wheelchair.
Nearly every minute of the day Andreas is reminded of his illness, but around his friends he’s just another 14-year-old boy having fun, his mother said.
“It takes him into the world of being a normal kid, and that’s all he wants.”
Andreas enjoys seeing comments from friends and wellwishers on his Caring Bridge Web page, which he reads every day, Debbie said.
To contact Andreas, visit www.caringbridge.org/ visit/ andreasknickman.