Tuesday, September 24, 2013
Brayden Ballew watched the numbers add up in real time: 1,997, 1,998, 1,999 ... 2,000!
"It was like, happy New Year!" said the 9-year-old Lawrence boy.
When his goal for "likes" on his "Bray's Fight" Facebook page was met, it was as if he were watching the ball drop Dec. 31: a countdown followed by ecstatic joy.
There haven't been a lot of recent moments like that for Brayden, who has been fighting Hodgkin's lymphoma since his diagnosis in June. But family, friends and community members have done their best to cheer up the fourth-grader, who likes karate, baseball and Kansas University basketball.
Over the past few months, local businesses and community members have held several benefits for Brayden. They have included the Buzz for Bray (where people shaved their heads in his honor), the Bash for Bray (where attendees bashed cars for charity) and Kickin' for Bray (at Brayden's karate studio).
People have donated money and hotel stays, brought his family home-cooked meals and shared their experiences with childhood cancer; one anonymous woman even bought Brayden a wheelchair when he and his mom were looking at them at a store in Lawrence. The money and support received at the events have helped get the Ballews through a difficult time.
September is Childhood Cancer Awareness Month. As Brayden's story illustrates, the disease can strike anyone, of any age, often without a definitive cause. But as his case also shows, children can be extremely brave and resilient in the face of such a significant health challenge.
"You don't see a lot of children affected by cancer," said Brayden's mom, Kari, 34. "So it's pretty humbling when you walk into a room at the hospital and see children, babies, infants."
The problems started last October, when Brayden began suffering from swollen lymph nodes. It took several more months and numerous doctor visits before Brayden and his parents got a diagnosis they didn't want to hear: stage 2 Hodgkin's lymphoma (his father, Kevin, also battled the disease, as a teenager).
Since then, Brayden has been anything but a regular 9-year-old boy. He spends much of his time receiving chemotherapy at a Kansas City, Mo., children's hospital, staying the night at the Ronald McDonald House afterward, or resting at home on off days. He can't go out much, especially when his blood counts are low, for fear of being infected. He is unable to have things like fountain drinks, soft-serve ice cream and deli meats because of the risk of bacteria (he has, however, been able to chow down on his beloved donuts). He hasn't returned to Lawrence's Langston Hughes School; teachers bring his assignments to his home.
"Why can't I just go to school tomorrow?" Brayden asked his mom on a recent day, as he rested on the couch of her Lawrence home, exhausted from his cancer treatments. He is skinner than he was a few months earlier, and has lost his hair from the chemo.
Simply put, Brayden hasn't been able to be a kid lately. He didn't get to swim, go on vacation or hang with his friends much this summer. What he has done, however, is show the type of fearlessness usually not expected of someone so young.
"He's definitely learned to be braver and stronger," said Kari Ballew. "I've also noticed the selflessness in Brayden. Being an only child, sometimes we have that selfish thing: me, me, me. I've noticed the shifting of him thinking about other people and wanting to help other kids." That includes his plans to one day volunteer at the children's hospital and Ronald McDonald House. (He also hopes his future includes a visit to Disney World, and, when he grows up, attending KU and becoming a basketball player.)
Brayden's parents have had to devote many of their waking moments to making sure he gets to and from his various medical appointments. His dad is employed by a software company and able to work remotely, but his mom, who worked in the laboratory of a local family medical practice, has had to switch to part time. Luckily, Brayden has health insurance; he recently received 10 shots that would have cost $9,000 without it.
Doctors are hopeful that Brayden's cancer will be in remission by the end of the year. He may finish his chemotherapy around late October, when he will likely begin radiation. The goal is for him to stay in remission for five years, though a relapse would make him a candidate for a bone-marrow transplant.
Brayden's original goal for Facebook "likes" was 120,000. Since he was only at 1,300, his mom suggested 2,000. They have more than doubled that number since — so maybe 120,000 isn't insurmountable. At the same time, Brayden has bigger goals beyond social media.
"I can't wait to go into remission," said Brayden, who turns 10 in November. "Then I can have a birthday/remission party!"