State of grace
Grace Kriegshauser is a blur as she circles the living room. “Catch me,” the 3-year-old teases. Her parents,
David and Heather, jump into a game of tag. One-year-old Jacob crawls into the action.
It’s a dizzying stab at normalcy for the Woodland Park family. What was once routine is a rarity since Grace’s leukemia diagnosis five months ago.
Some days, she can barely walk.
By the time her 27-month treatment regimen is complete, she’ll have spent nearly half her life battling the blood cancer.
Chemicals are injected into her body to kill the bad cells — wiping out good cells as collateral damage. Sedatives give Grace a reprieve from the ordeal.
How do her parents deal with it?
“I don’t know yet,” Heather said. “I don’t know if we are.”
Said David: “I say to myself, ‘Whatever it takes.’ I say that a lot.”
When David got a mild case of the sniffles on Christmas Eve, he considered spending the holidays alone.
“I was concerned: Should I leave the house and stay in a hotel? I was scared of giving Grace my germs,” he said.
Instead, he kept his distance from Grace, whose immune system is compromised. Any infection will put her in the hospital during this intensive stage of treatment.
As a precaution, David showers and changes his clothes daily after teaching sixth-grade science at Emerson-Edison Junior Academy.
His new job this year with the Colorado Springs School District 11 charter school was the break he and his wife wanted to get back to Colorado. The couple had gone to Arizona for teaching experience after David, 31, a New Mexico native, finished college in Durango. Heather, 34, a math teacher raised in Ohio, quit teaching when Grace was born.
On a whirlwind trip to find a place to live, they found Woodland Park.
“The town is what we saw in our minds when we were in the desert — a little town with unique shops and cool personalities, with the amenities of the city down the hill,” David said.
“We just knew right away this was where we wanted to raise our kids,” Heather said.
Completing their vision was the cedar home in the pines. Definitely worth David’s 45-minute daily commute.
They arrived in July. Two weeks later, Grace got a fever.
It seemed no big deal. Except it wouldn’t go away.
The parents, figuring it was a virus, decided to ride it out. After all, they were barely unpacked and didn’t have a doctor yet.
Still, Grace was lethargic and didn’t want to eat — out of character for the robust toddler who rarely was sick.
“It seemed like she was fading,” Heather said.
A trip to a Colorado Springs urgent care center indicated it might be a common urinary tract infection.
After more tests, Grace was diagnosed with acute lymphocytic leukemia, a rapidly progressing childhood blood cancer.
A few days later, she was a regular at oncologist Dr. Bruce Cook’s Colorado Springs clinic, Childhood Hematology Oncology Associates.
A volunteer with Compassion for Kids, a group that helps families dealing with cancer, came to their house with a gift basket.
In it was lip balm.
A soft hat.
A lint roller for when Grace’s hair started falling out.
It wasn’t the Welcome Wagon basket they’d imagined in the desert.
Grace was named before she was conceived.
When she came along, it fit.
“She was a gift,” Heather said.
Like so many parents of firstborns, they were overly cautious. But they couldn’t protect their child from a cancer that shows up for no apparent reason.
“Some days we feel hope,” Heather said. “We don’t really think about it and the seriousness of the disease. Some days, it’s all we think about.”
They are straightforward with Grace.
“I said, ‘You are very, very sick, and there’s leukemia living inside you and you have to take a lot of medicine for a long time to beat it,’” David said.
“She understands it. Leukemia is part of her life.”
So, too, is “Tubey,” what she calls the medicine tube in her chest. It’s her pal, making it so she doesn’t have to swallow so many bitter pills.
The self-portrait on Grace’s art stand shows a crooked face with a thin smile inside a round head topped with a few squiggly lines for hair.
It’s a faint resemblance to the little girl with flowing brown hair in so many family photographs.
Grace often isn’t her old self these days. She is moody, cranky, wobbly, nauseated.
Although it might not seem like it, Grace is also lucky. The survival rate for her cancer tops 90 percent.
“It was incurable before 1963. Virtually every child diagnosed with this died,” Cook said. “When I finished my fellowship training in 1982, we quoted parents a 50 percent chance of cure.
“We’ve learned how to treat it . . . There’s a lot more we need to learn.”
It strikes one in 2,700 children annually.
“In some ways, it is a better disease than the onset of diabetes in childhood. The future is more predictable and better for a child with leukemia,” Cook said.
There are about 14,000 new cases of cancer in children every year, he said, with a fourth having Grace’s type.
There are far more adult cancer cases — 160,000 new cases of lung cancer alone, Cook said.
Cancer in adults often is linked to degenerative, diet and environmental factors. In kids, he said, the cause is a mystery.
Child cancer patients share one thing: “Their sense of courage, their indomitable spirits.”
But, he said, “It is not natural to hang out with your oncologist. It takes a toll on the family with time and emotional energy. It is financially draining.”
What does he tell families?
“You have two discussions, one with parents, giving them all the scientific and technical babble,” he said.
“You have to figure out what the child really wants to know. You have to be honest with kids and know what their degree of maturity is. It’s like talking about sex.”
The clinic is Grace’s play group, of sorts. She knows the workers by name. She sees other balding girls in cute hats.
Not only does her blood get examined under a microscope. Every detail of her life is scrutinized.
Is she eating OK? Drinking OK? Sleeping too much, sleeping too little? How’s her activity level? Heather carries a binder thick with papers charting Grace’s lab results.
The week before Christmas, Grace’s white blood cell count was low, but increasing.
“A good sign,” Cook said during the exam.
He peered in Grace’s ears. He bent her toes. He listened to her heart. He looked for evidence of tumors.
Grace furrowed her brow. She meowed like a house cat. . . then howled like an alley cat.
Heather tried to calm her daughter. She stroked her head. Clumps of hair fell into her hands. Wisps fluttered to the ground.
Cook smiled. Grace is doing well at this particular difficult stage of treatment.
“I like to think we’re past the worst part,” he said.
Heather is relieved, but pensive.
“Sometime in the not too distant future,” Cook told her, “I’ll let you have your real Grace back.”
Grace’s white blood cell count the day after Christmas had improved and so had her mood.
The tag game was a belated Christmas gift to her parents. It was the “Gracie” they knew from her pre-diagnosis days.
But she still has about two years of treatment to go. They brace for the next round, when her growling will resume. The high cure rate is not high enough to ease their worries.
“I don’t know if I’ll ever be able to relax,” David said. “I don’t know if I’ll ever be able to say, ‘We beat this thing.’”
About this series
Ninety percent.
In school, it’s an A.
In the world of childhood leukemia, it’s a cure rate. And a good one at that.
But 3-year-old Grace Kriegshauser’s parents worry despite their hope. They are teachers — and they know some children fail.
Grace has acute lymphocytic leukemia, a rapidly progressing blood cancer. The Gazette will provide periodic updates as she undergoes the intensive 27-month treatment that started in August.
Her father, David, was featured in a Gazette Metro story in October, when students at his school, Emerson-Edison Junior Academy, launched a “Pennies for Grace” drive that has raised more than $1,200 for the Leukemia & Lymphoma Society.
To donate to “Pennies for Grace,” contact Emerson-Edison Junior Academy, 4220 E. Pikes Peak Ave., Colorado Springs, CO 80909. Phone: 570-7822.
