NORTH LOGAN — March 1 was a typical day for 6-year-old Nicolas Oakeson. He went to school, played with friends and went to bed at his home in North Logan like usual.
But in the middle of the night he suddenly sat up in bed hysterical, clutching his eye.
"Mom, it feels like someone's stabbing me in the eye with a fork," he said.
Wendy Oakeson tried to comfort her son through the weekend until they could get into the doctor’s office. Outwardly, everything looked fine. But when they got Nico's MRI results, they realized how serious it was.
"I got the call from the radiologist on a Friday morning," said Wendy Oakeson, "It was two weeks later to the day (from Nico’s first pain). He used a lot of words I didn't understand, but basically it summed up to the fact that there was a large mass behind his eye and he needed further testing to determine what it was."
It turned out to be Langerhans Cell Histiocytosis — a rare brain cancer.
Friends of the young boy and his mother have created a project to not only raise money for the family, but to help Nico feel love and support during his difficult struggle.
Nico began radiation treatments. He couldn’t go to school anymore. With his weakened immune system, a common cold could be life-threatening.
To pay for the mounting medical bills and finish projects at work, Nico’s mom took him with her to her job at Advent Creative. She set up a place for him to play in an unused office.
As treatments progressed, other health issues appeared: a failing kidney, a belly full of kidney stones, a damaged urinary tract and low blood levels necessitating transfusions. Nico began to spend more time with doctors and nurses. For days before any of his many surgeries, Nico had to stay away from people to keep him germ-free.
He had to be in isolation so often that he began to feel so lonely that he quit talking.
Before the tumor, Nico loved to read and play with friends. But his tumor made reading difficult and he missed his end-of-year class party.
“The thing that’s been the hardest for me to watch is Nicolas’ emotions,” his mother said, “and his pain with being lonely, and no friends, and missing all these childhood things that he wants so badly.”
Oakeson's co-workers wanted to do something to help.
"We thought, 'We are a creative agency full of people that have all these wonderful skill sets,'" said project organizer Logan Clifford. "'We need to take advantage of the resources that we have and do something to help Wendy and to help kind of take care of Nico and make him feel a little less alone.'"
That's how Project Nico was born.
Using a turquoise T-shirt and Facebook, strangers reached out to show love to Nico. It was a simple idea: Buy a shirt to help out with the medical fees, wear the shirt somewhere cool and post your picture on the Facebook page for Nico.
"When we explained the whole idea to him, showed him the design for the T-shirt, it was really amazing to see him kind of cheer up about the whole idea," Clifford recalled.
The team's goal is to sell 1,000 shirts. They are nearly there. On the front of the shirt is a simple logo: N-I-C-O with a cartoon of Nico’s face in the last letter. On the back, a smartphone QR scan code links straight to his website for information, sparrowalliance.org/nico.
Another component of the project is a Facebook page where people post photos wearing their shirts. Nico asks his mom to check the Facebook page every day. He sees pictures of hundreds of people supporting him.
Former Utah Jazz player Thurl Bailey and the Jazz Bear give him a thumbs up in posted photos. A semitrailer bed full of primary kids rode in a parade for Nico. Travelers have worn the shirts in front of the London Bridge, at Glacier National Park, and at the Arizona Diamondbacks' Chase Field.
Through the Facebook page, Oakeson also updates Nico’s fans on his progress. He’s just finished another round of chemotherapy. Doctors are working on repairing kidney and urinary tract damage.
Through it all, the project shows Nico and his mother that they are loved.
To participate in Project Nico, visit sparrowalliance.org/nico or visit on Facebook at facebook.com/projectnico.
Copyright 2017, Deseret News Publishing Company