FAMILY CARRIES ON IN FACE OF BOY'S ILLNESS : CANCER PUTS FOCUS ON HERE AND NOW.

Byline: Alicia Doyle Daily News Staff Writer

Susan and Rick Wagner are good at hiding their pain.

They speak of the misfortune that scarred their lives in matter-of-fact tones, as if they were well prepared to face a parent's worst nightmare. Their calm expressions reveal little of the overwhelming sadness - little of what it must feel like to have a 5-year-old son with cancer.

It was less than three years ago that Matthew Wagner's brainstem tumor was found. Though the boy's illness has greatly affected his motor skills, Matthew works hard at being a ``regular kid,'' his parents say.

``He keeps insisting that he's not sick - that nothing is wrong,'' said Susan Wagner of her son's undying will to play and learn like most kids his age. Then she looked at Matthew's half-paralyzed cherub face and fragile limbs with unconditional love. ``It gets frustrating sometimes. But it's not his fault. This is what we've been dealt. It's just life.''

How do they cope?

Susan Wagner embraced her 10-year-old daughter, Elizabeth, and gave her much of the credit. She and her 10-month-old baby sister, Sarah, are their parents' strength.

``We could not have survived without them,'' said Susan Wagner of her and her husband's blond-haired, blue-eyed girls.

Instead of acknowledging her little brother's illness, Elizabeth treats Matthew like she would any other kindergarten boy. As she playfully stuffed a messy, jelly-covered bagel into his mouth, Elizabeth said she is not overcome by sadness or pain.

``I don't know why,'' said Elizabeth, who is as equally protective as she is playful with Matthew. ``I don't really think about it.''

On the card attached to his Christmas gift she wrote: ``I picked this toy soldier because you are a brave kid that's ready to fight enemies, and you will be remembered in everyone's heart like a favorite toy - From my whole heart, Elizabeth.''

The Wagners accepted long ago that Matthew's future would be grim. While six surgeries have chipped away his brain tumor, they also caused nerve damage that left the boy with some physical handicaps, his parents said. Over time, Matthew has become paralyzed in parts of his face and body. His smile disappeared after one surgery froze the left side of his mouth. He has been unable to walk, sit up or crawl by himself since his most recent operation in December.

But his spirit is strong.

``I look at him, and I'm amazed,'' said Rick Wagner, whose son inherited his deep blue eyes. ``I'm surprised to see him the way he is. It's just his spirit - his desire to be a kid.''

After Matthew's diagnosis in 1994, his parents were told his chance of survival was between 2 and 17 percent. One year ago, the boy was given three months to live. But Matthew is not bound by statistics or percentages, his mother said.

``It's always been a big question mark,'' she said. ``But there's strength in his spirit. We're just enjoying him while he's here.''

When surgery or chemotherapy leaves him too weak to attend Garden Grove Elementary School, Matthew is at his Simi Valley home with his baby sister and mom, immersed in his room filled with toys and games. His light-blue bedroom walls are covered with life-size Power Ranger decals. Several stuffed toy Dalmatians are scattered on the bed and floor. Toy dinosaurs, trucks and Winnie the Pooh dolls leave little walking space.

``He's a pretty typical 5-year-old,'' his mom said.

And Matthew's refusal to give in is what keeps his spirit alive.

``He's very independent - he doesn't like it when we try to help him,'' Susan Wagner said. ``He wants to do it all on his own. So we support him. And we treat him like a normal kid.''

Matthew's greatest wish came true last month, when his family and grandfather traveled to Disney World in Orlando, Fla. The trip was made possible by the Make-A-Wish Foundation, which fulfills desires of children with life-threatening illnesses.

Looking back on the past two and a half years, Susan Wagner considers her family ``lucky.''

``Some families lose their children to tragedies like a car accident or kidnapping - they lose the chance to do all those things they talked about doing with their kids,'' she said.

She then spoke of the lessons her family has learned. Since Matthew became ill, they follow through with their plans and rarely procrastinate. Family time together always comes first. And Susan Wagner learned to never again say ``someday.''

``Because you don't know if someday will ever come.''

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2 Photos

Photo: (1--color in SIMI edition only) Rick Wagner of Simi Valley helps his terminally ill son, Matthew, 5, to try to enjoy life as much as possible.

(2--color in SIMI edition only) Matthew Wagner, 5, gives his sister, Elizabeth, 10, a bite of his bagel. The Simi Valley boy has been diagnosed with a cancerous tumor on his brainstem. Therapy has left him without the ability to walk.

Evan Yee/Daily News