LAKE STEVENS — Nine-year-old Austin Stubrud tries to hug his younger sister, Katelyn, while she sits in her highchair eating.
He can’t reach up far enough. So he just puts his hands around her shoulders, stands on his tiptoes and reaches up until his forehead touches hers.
The two look at each other, smiling.
These little displays of affection between brother and sister help the Lake Stevens family cope with a series of hardships they never thought would end, say parents John and Teresa Stubrud.
Austin was born with Down syndrome. At age 2 1/2, Austin was stricken with leukemia. He successfully completed treatment three years ago.
During the treatments, Katelyn was born with Down syndrome.
At 2 1/2, she was diagnosed with leukemia.
“John was sitting on the couch and holding her and crying, and saying, ‘Not my baby girl,’ ” said Teresa Stubrud, 32.
And the bad news kept coming. In January, when Katelyn was less than a year into her treatment, John’s mother, Karen Stubrud, was diagnosed with breast cancer.
“We really did feel like we had a black cloud over our head – what’s going to happen next?” said Teresa Stubrud.
This could be the last holiday season the family spends in the shadow of that black cloud. Katelyn, now 4, is in remission and has only six months to go in her treatment. Karen, 56, of Marysville, is also in remission and has three months of treatment left. Austin remains cancer-free.
The cure rate for the kids’ type of leukemia now is about 85 percent, said Dr. Blythe Thomson, who was in charge of the later stages of Austin’s treatment and now is handling Katelyn’s.
Children born with Down syndrome share distinctive physical features, are at risk for developmental problems and are more prone to illnesses such as colds, heart attacks and cancer. For leukemia, the risk is 15 percent to 20 percent higher among children with Down syndrome, according to the National Down Syndrome Society.
Down syndrome is a genetic disorder that can occur from a variety of causes, including complications associated with the age of the mother and whether one parent carries an abnormal chromosome. In this case, Teresa was identified as carrying the chromosomal anomaly. It also increases the risk of miscarriages. Teresa has had several.
She and John wanted more children. With the difficulties, they’ve encountered, they are stopping at two, she said.
Austin and Katelyn can be a handful. “They’re stubborn, they’re impulsive, they have no safety judgment,” Teresa said.
While the kids bring their own challenges, Katelyn and Austin enrich their parents’ lives in their own special way.
They’re affectionate. They feel the pain and joy of others, and of each other, acutely.
Austin shows concern for his sister each month when she has to go to Children’s Hospital in Seattle for treatment. He still suffers trauma from his chemotherapy sessions — he’s agitated by bright lights and ceiling fans, which he associates with the hospital. It’s hard for him to go along on Katelyn’s visits, but he does.
“He does get very anxious when she goes,” his mom said. “It’s, ‘Oh, no, Kate’s sick again,’”
Austin will also say, “It’s OK, sissy, you’re going to be better.”
Katelyn is the more outgoing of the two. “She loves people,” her mom said.
As she sat in her highchair with her blond hair tied in two small buns, she made a pronouncement.
“I’m cute,” she said.
Her energy has helped her through the treatment, which has been important because Down syndrome kids are more susceptible to the nausea and headaches that go with chemotherapy, Thomson said. The treatment has included oral drugs taken at home, monthly chemotherapy and, every three months, injection of the drugs directly into her spinal cord.
The little girl says “icky, icky, icky, icky” when she sees the hospital.
“Right after chemo she’s just nasty sick,” Teresa said. Early in her treatment, the most intensive phase, “she would lie on the floor and scream for days because her head hurt so bad.” But she always bounces back.
“She’s got this amazing spirit that just keeps her going,” her mom said. “She’s a spitfire.”
Karen Stubrud said her grandchildren’s toughness in dealing with their illness actually helped set an example for her.
“It was like, ‘Look at what they’ve gone through,’” she said.
Austin is in third grade in a class for kids with special needs at Mount Pilchuck Elementary School in Lake Stevens. Shannon Mackay taught him in kindergarten and first grade.
“He was a wonderful student,” she said, with “a strong desire to learn.”
Mackay has become a close friend of the family — so close that she asked that Austin be the ring bearer and Katelyn the flower girl at her wedding last summer.
“They did fantastic,” Mackay said. “It brought tears to my eyes.”
The Stubruds worry about their children’s future. Down syndrome adults often are unable to live independently. They’re also more susceptible to conditions such as Alzheimer’s and heart disease later in life.
“We haven’t been able to save anything for them,” Teresa said.
The family’s medical bills — in the hundreds of thousands of dollars — have been covered by insurance and by a state program.
John Stubrud works for Waste Management. To be eligible for the state program, Teresa had to quit working, so the family has practically no discretionary income.
But they do get help. Recently, a Marysville office of Windermere Real Estate donated $1,275 in gift certificates for the Stubruds to buy holiday gifts and for Teresa to get her hair done.
“It was huge, it was so nice to not have to worry about what bills we’re not going to pay to get Christmas and birthday presents,” Teresa Stubrud said.
Every year they also get a gift certificate to Old Navy for the kids, donated anonymously.
“I still don’t know who sends them,” Teresa said.
The one special activity the family pays for is horseback riding once a week. It costs $345 for 10 rides.
“That’s kind of been the hallmark of the only thing that’s normal for them,” Teresa said.
The kids need a lot of supervision and their parents get few breaks. John gets up at 4:45 a.m. to go to the gym and then to his job. He doesn’t get home until late afternoon or early evening. When he does, he’s helping Teresa get dinner so she can get off her feet.
“They are a day’s work, they are a challenge,” Teresa said of the kids. “But they give back to us way more than we give to them. They give this unconditional love. They just glow, they really do.”
Reporter Bill Sheets: 425-339-3439 or sheets@heraldnet.com.
Talk to us
> Give us your news tips.
> Send us a letter to the editor.
> More Herald contact information.
