Orem boy fighting against rare cancer

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OREM -- Medical research has done amazing work on several types of cancer over the years, extending the lives of many throughout the world. But for one Utah family, very little research is done on the type of cancer that has their little boy fighting for his life.

Three-year-old Rex Stuart can't get enough of his favorite movie. He has watched "Toy Story" dozens of times.

Rex's favorite character is Buzz Lightyear, and he practically lives in his own Buzz costume. Playing make believe is a great diversion for him, and a welcome relief to his parents, because real life took a nasty turn in March.

Stephanie (left), Steve (middle) and Rex Stuart (right)watch "Toy Story" together.
Stephanie (left), Steve (middle) and Rex Stuart (right)watch "Toy Story" together.

"He actually started tilting his head to the right," Rex's mother, Stephanie Stuart, says. "That happened for about two weeks, and then the third week he started getting clumsy and and maybe running into some things."

An MRI just days later confirmed the family's worst nightmare: cancer. The type Rex has is in the brain stem and is inoperable.

"It's called diffuse intrinsic pontine glioma, and about 200 kids a year will get it. It's really rare," Stephanie says.

"The best way I've heard it explained is pepper in Jell-O. So, think of a big dish of Jell-O, and somebody dumps in 5 percent pepper; so, the ability to go in and remove the cancer is non-existent," says Steve Stuart, Rex's father.

Most children with the disease live nine to 12 months from diagnosis, and the bulk of them don't make it a year.

Because this cancer is so rare, the Stuarts say there's very little research being done. There are clinical trials, but so far they've offered very little hope.

"I think that's been the hardest thing, is just to pray that we know when to accept," Stephanie says.

So, the Stuarts enjoy every moment with their only child, hoping for the best -- especially since Stephanie is four months pregnant.

"We're having a little girl. We just found out, and he's excited. So, we're hoping we have us all together for a while," Stephanie says.

Rex recently finished six weeks of radiation, hoping for more time. When he was done, the family celebrated with, of course, a party fit for Buzz himself. After all, make believe is a great escape.

"It's just through faith of knowing there's a bigger picture and there's a bigger plan for our family, and that he'll be taken care of one way or the other," Stephanie says.

The Stuarts say they're grateful for the tremendous support and prayers from their community. A 5K race is planned for Saturday morning at 8:30 in Orem, with a silent auction to follow. CLICK HERE for more information.

E-mail: kaiken@ksl.com


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Kathy Aiken


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