By AMANDA BEAM
Brick by brick, Aiden Johnson has begun to assemble a masterpiece. In the basement of his Sellersburg home, piles of Legos grouped by color lie on a table.
Once all of the 3,803 pieces are puzzled together, the 9-year-old will have completed his largest Lego project to date — Darth Vader’s massive Death Star from Star Wars.
Much of Aiden’s young life has been like piecing together one of these kits. At the age of 2, he was diagnosed with acute lymphoblastic leukemia. Bit by bit, treatment after treatment, he conquered the cancer only to have it return two years later. Using chemotherapy again, Aiden, his family and his doctors continue to construct a plan that will keep him cancer free, hopefully this time for good.
“Cancer affects absolutely every aspect of your life,” said Aiden’s mother Gena Johnson. “It affects the siblings. It affects your marriage. It affects the family, the children. There’s a reason why cancer is called the beast.”
Gena is living what most parents fear. Her child is sick, and the medicine needed to cure him, at times, makes him even sicker. Every day, she administers chemo to her son. On Thursdays, his toughest day out of the week, Aiden takes about 26 pills to maintain his current remission. For close to half his time on this earth, the young Lego lover has been on the lifesaving, yet devastating, drug. The last go around, the chemo continued for 3 1/2 years.
Kids on chemo can’t always be like other kids. Aiden receives schooling from his home. Classrooms full of students could be full of potential illnesses that Aiden’s weak immune system might not be able to take.
But somehow, amidst all the pain and worry and fear, the Johnson family decided to fight childhood cancer on a different playing field — one that raises both money and awareness. Just finishing up its first year, their nonprofit organization, Aiden’s Legacy, has collected close to $25,000 for Kosair Children’s Hospital.
In addition to the funds, the organization has also distributed more than 500 Lego sets to other area children battling cancer. In December, they even threw a party for those suffering from the disease. Despite the cold, snowy conditions, more than 75 kids attended the indoor festivities.
No one really understands how Legos can brighten a kid’s day. Aiden’s dad Jason Johnson said maybe it’s the toy being both simple and complicated all in one.
One thing, though, he and Gena do know. For some reason, children light up at the word. And for patients undergoing cancer treatments, assembling the little blocks might provide a small respite from their circumstances.
“Our experience with Aiden and the Legos was that it took his mind off of having the cancer. It took his mind off of that he was hooked up to an IV pole; that it took his mind off of that he was being pumped with toxic poisons,” Gena said. “They need to know that the world is still going on and they are still a kid. They can still play. They can still laugh.”
Childhood cancer is another of those cancers that lurk in the background. You don’t hear very much about the disease unless someone you know is affected. Yet the numbers are astonishing.
Gena said our region remains the third largest for pediatric cancer diagnosis in the United States. In this area, more than 80 children every year are diagnosed with some form of the disease, and, at any given time, 650 kids are being treated.
“You never think of a child being sick until your child is sick,” Gena said. “And then all of the sudden you start to do the research and you find out that, in the world, every four minutes a child is diagnosed with cancer. And, in the world, one out of every five won’t survive. To me, those are astonishing numbers.”
Even more astounding is the amount of research funding pediatric cancers receive. According to the St. Baldrick’s Foundation, “all types of childhood cancers combined receive only 4 percent of federal funding for cancer research.” Yet much of these studies show promise.
Only 40 years ago, the type of leukemia Aiden was diagnosed with would be seen as a quick death sentence. Thanks to advances in medicine and other treatment options, more than 90 percent of children with these cases can now be cured. That’s definitely more bang for your buck.
As research continues, the Johnson family’s work goes on as well. Three upcoming fundraisers have been planned. More Lego sets have been bought and are ready for distribution. And Aiden grows stronger and closer to his end-of-chemo party each and every day.
“The cancer world is not normal by any means,” said Gena. “It’s what we have been given. It’s what we do.”
— Amanda Beam is a Floyd County resident and Jeffersonville native. Contact her by email at email@example.com