After a rough start, Selah boy finding his way forward

SELAH, Wash. -- If he could just make it through surgery.

Just stay alive. That's all they hoped for, all they wanted.

They were lucky -- they got that.

Plus, so much more.

Greg and Tanya Kuhlmann of Selah have had plenty to celebrate for the past nine years; that's how long their 13-year-old son Tristan has been tumor-free.

Diagnosed with a brain tumor when he was 6 months old, Tristan has endured five surgeries along with chemotherapy and a daily regimen of multiple medicines.

Later this month, the Kuhlmann family, including Tristan's sister, 15-year-old Ashley, will celebrate again: they're heading to Washington, D.C., where they'll make a visit to the White House.

Tristan was chosen to make the trip representing Washington state for the Children's Miracle Network, a charity which raises funds for children's hospitals.

He'll join children from the other 49 states who also have received services from one of 170 hospitals in the national network. Called Hospital Champions, the children will be hailed for overcoming medical struggles.

The six-day trip also includes a visit to Orlando, Fla.

Outgoing and engaging, Tristan already knows what he'll do if he gets to talk to the president. "I'll shake his hand and say 'Thank you,'" he reports.

And Tristan isn't the only thankful one.

"We're very fortunate," said his father, Greg, who is 42. "We've got good kids, good friends, a supportive family, and we've got good jobs." (Both work at Stewart Subaru.)

And a son who lived through not just two surgeries to remove the tumor -- it grew back when he was 4 -- but also a hemispherectomy, where half his brain was removed 10 years ago.

That was the last-ditch surgery recommended by Seattle Children's Hospital because the earlier surgery and weekly chemotherapy hadn't stanched the tumor, which left Tristan suffering as many as 300 seizures a day.

It was a radical step, but the Kuhlmanns felt they had no other recourse.

"Whatever we needed to do for him, we'd do," Tanya, 39, said.

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To everyone's great relief, the surgery that removed most of the left side of Tristan's brain was successful.

But there was a time that his parents didn't know if their son would ever walk or talk after the radical surgery -- they were cautioned that he might not.

"We weren't sure he'd be able to do anything; we didn't know what would happen," Tanya explains.

Tristan, however, disproved the warning fairly quickly.

He was up and walking three months later and soon was running, chattering and even teasing his sister.

"Tristan does everything," his mother says.

"It's a wonderful story," reports Kellie Connaughton, development director for Yakima Valley Memorial Hospital's foundation and local coordinator for Children's Miracle Network. She helped nominate Tristan for the Hospital Champion designation.

As successful as the hemispherectomy was, it also created new challenges for Tristan, who lost some use of his right arm and leg, as well as vision, speech and developmental problems.

The seizures took their toll, too.

"We watched him waste away," Tanya says, of the debilitating seizures that occurred during Tristan's first three years. "That's why he has trouble catching up. Birth to 3 are very important years."

A seventh-grader in the special education program at Selah Intermediate School, Tristan struggles with math and reading and has some memory lapses.

"He can remember the strangest things from three years ago but has trouble with his ABCs," says Tanya.

Since the hemispherectomy, Tristan has tripped twice and fallen, injuring his head, which meant two more surgeries to alleviate pressure on his brain.

He receives occupational and speech therapy at school and physical therapy at Children's Village. His sister Ashley volunteers as a mentor to children at the special needs facility.

Upbeat and filled with brio, Tristan rolls with just about every punch there is.

"He's always moving, very physical and very social," says his mom.

And diplomatic: Will he mind missing school while he's on the Children's Miracle Network trip?

"A little," he hedges.

He plays soccer and basketball, where he's dead on with his free throws, and is an avid swimmer. He loves video games, Harry Potter movies, NASCAR driver Jimmie Johnson and cookie dough ice cream.

When Tristan is home, "I play with the dogs. I shoot baskets, and I go see the neighbors."

Connaughton, with the Memorial Foundation, has known Tristan since he was an infant and marvels at his progress. "Thirteen years later, there's this child who is a walking miracle. He had a tumor and life-threatening seizures. The quality of his life is extremely good for that kind of problem."

From the very beginning, the Kuhlmanns vowed to make Tristan's life as ordinary as possible.

"One of the best things our doctor said we've done is that he's just a normal boy," Tanya said.

Tristan is expected to listen to others and be polite. He goes outside to play like other children but wears a helmet to protect his head when he's in physical education class at school.

"People are going to look at him funny, and kids stare at him," Tanya concedes, "but to him everybody is his friend."

She adds, "He has no malice in his heart. He doesn't worry about status; he just wants to be included and to be loved."

There's no denying that Tristan has put in his time at hospitals. At one time he had an MRI every three months. Now it's every two years.

Although he was too little to remember his surgeries, he recoils when he sees someone coming toward him in a white coat. But even that has a solution; physicians have been very accommodating and take off their white coats whenever they examine Tristan.

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As lucky as the family feels, they admit they shudder when remembering the travails of those early years.

They struggled, Tanya admits. They were young, had two small children and had to face the horrible dilemma of what to do about a child who wasn't responding to medical treatment.

"The first year was hell," recalls Greg.

"The first three years were terrible," counters Tanya.

In fact, they endured a six-month span about 13 years ago that veered on brutal.

Greg ticks off the incidents in order: He was in a bad car wreck, then suffered an injury to his hip. Tristan was diagnosed with a brain tumor. Tricky surgery followed. Then Greg lost his job. Next, they were told they didn't qualify for a loan on a house they were trying to buy (they ultimately did get the loan). Finally, their car, filled with Christmas presents, was stolen.

"We were afraid to leave the house," laughs Tanya.

It was definitely a pressure-filled time. Their physician told them that 85 percent of families in their situation, under the stress of severe medical problems, get divorced.

But that cemented their resolve.

"From that point on, we knew we'd stay together as a family and be there for the kids," Tanya says.

Medical bills -- which topped more than $1 million -- were a strain, but the family had health insurance, which covered many of the expenses. Coupled with that, Children's Hospital provided some services at no cost. Tristan also qualified for state aid for some expenses.

Inevitably, the experience has shaped their outlook and how they relate to each other.

"It was a life-changer," Greg says, explaining it gave the couple a new perspective on what's important.

Tanya agrees. "We're all into sports, and if this hadn't happened, we would have been busy running kids around to this activity and that. This brought everything together for us."

Greg adds, "We do everything together. The whole family."

That helped them endure the bad times.

Now they're looking ahead to the family trip to Washington, D.C., and the chance for Tristan to charm the president.

And they have plenty to celebrate.

"I still look back on the whole thing, and I'm amazed," says Tanya. "I'm really proud of our family and every individual in it."

* Jane Gargas can be reached at 509-577-7690 or jgargas@yakimaherald.com.

Miracle Network

* Children's Miracle Network, founded in 1983, raises funds for hospitals that treat seriously ill children. There are 170 hospitals in the network around the nation and three in Washington state -- Seattle Children's Hospital, Providence Sacred Heart Children's Hospital in Spokane and Yakima Valley Memorial Hospital.