Having cancer is not a choice — how you live with it is. This is one of the mottos of Gilda’s Club Louisville. Thirteen-year old Dawson Barr wholeheartedly agrees. Diagnosed with multiple brain and spinal tumors at six months old, Barr never lets the reality of cancer affect his positive outlook. The charismatic teen has done several fundraising speaking engagements for Gilda’s Club, and he brings tears to many eyes with his precocious wisdom and personality.
Dawson’s mom, Aimee Barr, explained some of what the journey has been like for her family, and how Gilda’s Club helped.
“My first reaction was complete shock. I remember thinking ‘there’s nothing wrong with my baby. Why were the doctors overreacting?” said Barr.
“It was very overwhelming,” she said. “I saw the MRI film on the light display and I was looking at a spot that took up about a fourth of my baby’s brain that was not supposed to be there – it was massive. It made me feel helpless. But then I put my fight mode on and was willing to do whatever I had to do to get my baby better,” she said.
Dawson was treated with chemotherapy by a pediatric neuro-oncologist for a total of five years. Barr said she felt they were really on the right track after they did three protocols in four years and were getting ready to start a fourth protocol in May 2008.
“That’s when the doctor finally looked at us and said, ‘We don’t know what else to do if this doesn’t work,’” said Barr. “Take him home and love him while you can. We did Make-A-Wish and took him to Disney. Literally, in my mind I planned a funeral. Now that’s been 10 years ago.”
Dawson’s last chemotherapy treatment was in February 2012, and he has had none since. There is still one tumor that encompasses the hypothalamic and pituitary glands that doctors are watching, but Dawson himself said he feels like a living miracle, and it is faith that has made him strong.
“Even when you feel like you’re in the middle of a storm in a small boat, and it seems like no hope, all of a sudden it’s the eye of the storm and there’s hope,” he said. “Then it gets rough again, but God still has his hand on anyone who puts faith and trust in him.”
Dawson’s visual impairment means he is legally blind, and he struggles with other issues, but his mother said he is more than a collection of medical issues. “I can paint this picture for you of his problems but when you meet my kid in person, you would have no idea he has cancer or visual impairment. It’s absolutely not what defines him right now – it’s his magnetic personality.”
Barr and her son and daughter, Lauren, now 15, initially contacted Gilda’s Club through Camp Quality, a cancer camp for children and their siblings that Dawson and Lauren both attended.
“One of the things I love about Gilda’s Club is how it supports the whole family,” said Barr. “In the pediatric cancer world, people almost always feel sorry for the child with cancer but a pediatric cancer diagnosis affects whole family. They’ve been able to support my kids in a way maybe I couldn’t. It also helped them blossom into being leaders, speaking out more and advocating for pediatric cancer awareness.”
“When your child has cancer, too often parents can get caught up in the superman or superwoman complex,” said Barr. “We want what’s best for our child, and we think we can do it all by ourselves. That’s commendable, but sometimes we run ourselves down. These support groups can lift you up,” she said. “It’s just life – not a sit-down pity party; some days it is, but we celebrate our accomplishments as well as our hardships.”
Dawson said he recommends Gilda’s Club to other kids because “they can just have a fun and safe place to talk about cancer and not get made fun of. Anyone in that building they could talk to and trust. You become like a big family, like a cancer family, to be able to fight cancer and kick cancer,” he said.
The teenager, who lives in Taylorsville and attends Spencer County Middle School, said he wants to go to Purdue and become an engineer. Dawson is unrelentingly positive in his outlook.
“My advice is never to give up. Keep striving for what you want to do. Don’t let cancer take over your life. You can’t just decide, ’Hey, I don’t want to have cancer. But you can say, I have cancer and look at me, I’m still living and kicking cancer’s rear end.”