Written By: Brianna Sudrla
Colton was 2 when he was diagnosed with retinoblastoma. His parents joke with him now, nearly 5 years later. His mother, Stacia, says, “What if that was one of your spelling words now? You would be the only one to get it right!” His dad, Justin, chimes in, “Or, you could just say ‘I have that’.”
In 2009, they noticed an odd glare in Colton’s eye. They brought him into their pediatrician, an Iowa grad, who noticed the tumor right away. She sent them to an optometrist to be sure, and then later that day they were on their way from Sioux City, Iowa to Iowa City.
For those of you who are unaware, the drive is almost across the whole state and takes around 5 hours.
From the time they had their first idea that Colton had cancer, until he was officially diagnosed was 4 days. Within a week, he had his first surgery where they removed his right eye. About 2 months later he began chemo.
Within the first year, between surgeries, treatment, and check-ups, Colton was back to Iowa City about every 3 weeks.
Transitioning from a normal family to one with a child who has cancer in just 4 days is a surreal moment. Stacia says that almost all parents have the same mentality of “it’s never going to happen to you” and when it does, you become in a state of shock and very angry.
“He was never sick. Colton looked healthy the entire time. In fact, when they told us at the Children’s Hospital that is was cancer for sure, we could hear him jumping and screaming and having fun in the hallways with the nurses,” says Stacia.
Since June, he has had 3 surgeries on his eye, and altogether 9. He will be getting his new eye this week, right before the Big Event and everyone is so excited.
Normally, he would have an eye in all the time, and then they would place a new one in every year. However, since he is growing so much right now they have had some problems with the tissue and socket, which need surgery. After the surgery they have to wait before putting in the eye to give it time to heal.
Becoming a Dance Marathon family
August 31, 2009 is when the Barkers first heard of Dance Marathon. Colton had just started his chemo.
The social worker brought in a backpack with a bunch of general information about the hospital and treatment. He briefly mentioned Dance Marathon, but it really didn’t mean anything right away.
The next day Lauren walked in, who was a leadership member for DM16. Stacia remembers Lauren being happy and asking if Colton wanted to go for a walk. She didn’t think that he was able to go, but Lauren jumped right in, unplugged the IV from the wall and took him for a walk.
Colton vividly, and happily, remembers being able to ride the John Deere bike around the hallways while being hooked up to his machines.
Stacia and Lauren talked for a while and then Stacia knew, after a few meetings and a couple months, they should be a DM family.
They realized over time that there were dancers and other students who are a part of DM from around Sioux City, too, who would meet them back home for ice cream.
Throughout their time with DM, they really appreciate the money for prescriptions, food vouchers, parking passes, and students playing with Colton.
DM leadership members have struck their family and really changed their experience. Some of these include Jamie, who always asked to meet them for ice cream or to hang out, and Taylor, who is currently their FR representative.
Fun Fact: Their youngest daughter’s middle name is Lauren, because of how close their family became to her.
The Big Event
The Barker family’s first Big Event was one week after Colton’s last treatment. They weren’t sure whether or not they were going to attend, but after seeing other children praying to be well enough to attend they decided to go.
“We were totally blown away. We couldn’t even believe it,” says Stacia.
She remembers waking up in the middle of the night and turning on the live feed and seeing everyone still going full force and thinking to herself, “this is unbelievable”!
When asked what his favorite part of the Big Event was, Colton’s reply was, “Not the last part, when we are all getting ready to go.” But after some thought his face lit up and he says, “When we go down the aisle [at the beginning] and say ‘Colton Barker, 5th year’.”
Colton’s older brother, Brady, says, “Everything,” is his favorite part, but he especially enjoys the Best Buy video game room.
This year, the whole family will be attending, including Colton’s younger sisters Kinley and Hannah.
The family is anticipating Colton to graduate next year, although Colton wants to graduate on his 7th year, because he is 7.
Advice to Dancers
“Uh, good luck dancing for 24 hours without drinking any pop!” – Colton
Maybe you will even run into Colton. His goal this year is to stay awake for all 24 hours… not that his mother agreed.
If you do happen to run into him, another goal he has set for DM20 is to learn the Morale dance, so help him out! “If I can do it I will try,” Colton says.
“We constantly hear as a family that we’re their motivation to keep dancing, but I think the dancers might underestimate how much it means to us. You see the dancers that by 2 p.m. on Saturday are doing wall sits and doing anything to wake up, and as families we talk about it. We talk about how cool it is that they do that for us. Their energy, their clapping, I really have no idea how a human can do it!” -Stacia.