Oak Park boy's death from rare fatal cancer spurs mother's quest for more research

An Oak Park boy's swift and unexpected death from a rare fatal cancer has spurred his mother to work to raise money for more research and maybe one day a treatment.

Owen Shaker loved ninjas, his sister Sydney and life in general. But his life was cut short by a rare brain cancer that seemed to come out of nowhere.

"We started doing home kindergarten because of COVID. He started exhibiting some really bizarre behavior," his mother Amanda Shaker said.

Amanda and her husband Adam couldn't figure out what was wrong with the 5-year-old.

"He wanted lights out, was making forts and wanting to stay under them," she recalled. "He started running into walls, he would crawl up stairs."

Then Owen started to spiral.

"We were downstairs, he was playing like a ninja, jumping from couch to couch," Amanda said. "He had slipped and hit his head on a table. We took him to urgent care; they thought he just bumped his head."

But an MRI revealed Owen had Diffuse Intrinsic Pontin Glioma, or DIPG, an aggressive cancer that is always fatal. Doctors told Amanda and Adam that Owen had six to nine months to live.

"We just kept thinking this can't be accurate. There can't be a way there's zero chance of survival. There has to be a wait that we can fight, and there has to be a chance," she said.

The standard treatment for DIPG is 30 rounds of radiation to relieve some symptoms. It didn't work for Owen. The other choice was heavy steroids, which doubled the small child's weight.

"He was ravenous for food. Steroid made him irritable, but still very lovely and funny," Amanda said. "He lost movement on his left side. Couldn't lift his arm."

Doctors advised Amanda and Adam to "make memories" with their son. They took family trips to Michigan, Minnesota and Wisconsin.

"We opened up our tent a bit so he could see cousins, have water balloon fights on the lawn with neighbors, and tried to bring him as much joy as we could. He turned into this very lovely wise old man. He'd say it was his job to make people happy," Amanda said.

Amanda and Adam never told Owen what was ahead.

"He knew he had a bump on his head and he was taking medicine and treatment to fight it," Amanda said. "We're just gong to fight the bump. He said ninjas never quit and he's gonna keep fighting it."

He fought for five months. When the end came, it was swift. His mother said they were given a prescription for morphine, which told her and her husband just where in this process they were, and a few days later he had died.

"Our final chapter was short, comfortable and he was surrounded by a lot of love," Amanda said. "He knew he was loved."

And Owen is remembered. September is Childhood Cancer Awareness Month and every September since he first got sick, there's been a showing of love outside his home. First it was a 5K run sponsored by the group Chad Tough, honoring another child who died from DIPG. Now, Amanda said, it's grown into a block party.

"Each year we have a different shirt that honors Owen in some way. We created this Lego ninja that honors him each year, a ninja in a different setting," she said. "There are over 1,000 people. We have four to five bands a year. Food vendors donate, an arts and crafts station, basketball, Pop-A-Shot."

Owen was a fighter and so is his mother. She's battling for more research to treat and hopefully one day cure DIPG. She wants to make sure "rare" doesn't mean "forgotten."

"We have to care. We have to say even if the population size is smaller than other diseases, they still matter," she said.

Tomorrow at 10 p.m., we will meet the researcher whose work may one day change the course of DIPG, and learn about the unlikely connections he has to Owen and his family.

Know someone or something that should be featured on "Eye on Chicago"? Send us your ideas by clicking here.