Kiersa's story: Last September, Kiersa Jacobs, 3, was diagnosed with Ewing's sarcoma, a bone and soft-tissue cancer rarely found in children so young.
Because Montana has no medical facilities offering comprehensive pediatric cancer care n from diagnosis to surgery to remission n Kiersa, her parents, two brothers and sister had to leave their lifelong home in Belgrade and relocate in Portland, Ore. With Kiersa still in treatment and fears of remission down the road, the family may never be able to return.
PORTLAND, Ore. n Curling up inside her mother's arms on her hospital bed, Kiersa Jacobs reaches up to twirl a strand of her mother's short brown hair. In the light cast by cartoons playing on television, Kiersa's own hair sparkles, just a blonde frizz covering a 3-year-old's crown.
Unless pictures remind her, Kiersa often forgets she had hair.
She focuses on another memory - her old house in Belgrade. The only way to get medical care for the cancer that robbed Kiersa of her hair, and a normal childhood, was for her family to pick up and move to Oregon.
"Lately, she's started in with, 'I wanna go home,'" said her mother, Jill Jacobs, 31. "We're like, 'We're at home,' and she says, 'No, Mommy, I want my red house."
The family still owns that red house on David Drive in Belgrade that Kiersa's dad, Nick, 34, helped build. But because there's nowhere in Montana that offers comprehensive care for a child with cancer, the Jacobs' family of six n Kiersa, her parents, brothers Tyson, 10, and Avery, 9, and sister Glenna, 7 n might never move back.
Like Kiersa, most children in Montana diagnosed with cancer must leave the state to get treatment.
THE DIAGNOSIS
The Jacobs' saga began in August. Just before her third birthday, Kiersa gradually stopped eating, drinking, sleeping, walking and going to the bathroom. When she began complaining about pain in her bottom, her parents took her to several Bozeman-area doctors over the course of about a month.
Doctors tried X-rays, bone scans and enemas. They poked Kiersa with IVs and hydrated her. At the end of each visit, the doctors said Kiersa appeared to be OK and sent her home.
By early September, Kiersa was averaging about four hours of sleep a night. One Sunday night at her grandparent's house, she didn't sleep a wink.
"She was awake the entire night," grandmother Marcia Jacobs said. "She tossed and turned and moaned and groaned. She looked at me and she went, 'Nanna, I want to go to sleep, but I can't.'"
The sleepover prompted Jill to take Kiersa back to the hospital, where doctors finally did a CAT scan that revealed a spot on her spine.
"They said it was a blood clot or a mass of some sort and they said, 'We can't treat you,'" Jill said.
The doctors recommended a pediatric cancer team in Salt Lake City. But the Jacobs didn't know anyone there, so Jill asked if a similar team might be found in Portland, where her sister lives and where there's an affiliate of their church, Christ's Church.
The answer was yes: The type of pediatric cancer care Montana lacked could be found in Portland.
Less than 24 hours after Kiersa's CAT scan, mother and daughter boarded a Panda Flight, a private plane sent by Doernbecher Children's Hospital, bound for Portland.
"When we got here … she actually didn't walk anymore," Jill said. "She had really hypersensitive feet. Doctors had been trying to put IVs in her feet and she had pokes all over her."
Four days later, on Sept. 7, doctors at Doernbecher identified the golfball-size tumor surrounding Kiersa's sacrum, the bone that attaches her pelvis and spine. The tumor had grown so large that doctors could feel it when they gave her a rectal exam.
Kiersa was diagnosed with Ewing's sarcoma, a bone and soft-tissue cancer usually found in adolescent boys and rarely found in children under 3. The overall survival rate five years after diagnosis for Ewing's sarcoma patients is 60 percent to 70 percent, according to the National Cancer Institute.
A week later, Kiersa started an aggressive chemotherapy regimen n alternating three-or five-day treatments every two weeks n in an attempt to shrink the tumor to a size that could more easily be removed by surgery. If the tumor doesn't shrink, removing it surgically could cause Kiersa to lose the ability to walk and control her bladder and bowels.
"We're very hopeful that we're going to be able to cure this," Dr. Suman Malempati, one of Kiersa's pediatric oncologists at Doernbecher, said in March. "The goal is to do that without causing her long-term problems."
LIFE-CHANGING DECISIONS
As an employee of T.J. Electric in Belgrade, Nick Jacobs had worked alongside his father, Tom, and brother, Charlie. The small family-owned business could not afford the premiums for employee health insurance.
In the past, when Nick's children needed medical care, he just paid the bill.
But Kiersa's medical needs presented a seemingly insurmountable financial challenge n until the family found help in Oregon.
Luckily, when Kiersa was diagnosed with cancer in September, the state of Oregon accepted her as a new resident, granting her insurance through a plan for medically needy children under the age of 6.
"That's when we knew we were going be here and that's when I knew everybody was going move here," Jill said.
Montana had always been the Jacobs' home. Nick's grandparents homesteaded in the Bridger Canyon. Nick and Jill attended Bozeman Christian School together. Besides the couple's honeymoon to Walt Disney World and the Bahamas, Nick had hardly ever left the state of Montana.
Nick, who had flown to Portland for Kiersa's diagnosis in September, briefly returned to Belgrade to pack up Tyson, Avery and Glenna. Jasper, the family's cocker spaniel, had to stay behind with relatives.
For the first four months in Portland, the six members of the Jacobs family lived with Jill's sister's boyfriend, Ken Lei. An anesthesiologist who was able to help care for Kiersa, he also had a four-bedroom house he shared with the family for free.
Nick left his job at TJ Electric. In Portland, he worked odd jobs until he found an employer who would allow him to work just a few days a week.
Tyson, Avery and Glenna transferred from their Christian school in Belgrade to its sister school in Portland. The switch meant the children went from a school with about 30 students to a school with just six n including the three of them.
"We had to leave all our friends, which was kind of sad," Glenna said. "We have a friend that's pretty close here, but we can't walk there because there's a busy road."
The Jacobs put their Belgrade house up for sale in October. But when it still hadn't sold six months later, the family had to find renters to cover the mortgage payments.
In January, the family moved into an apartment in Portland. Working out the rental agreement, Jill pleaded with the landlord.
"I told him about Kiersa and I was like, 'My kids have had to change everything in their life,'" Jill said. "'If they have to get rid of their dog, it's really going to crush them.'"
And Jasper, the family dog, was finally able to join them.
THE NEW LIFE
"We've been really, really blessed by the people in Bozeman and the people here in Portland," Nick said. People have been pretty generous, not just with money but with compassion. It's been a good experience for us."
Students in the Sparrow Club at Portland's Rosemont Middle School, a club for children helping other children, "adopted" Kiersa, raised money to help the family and held an assembly in Kiersa's honor in February.
A Portland McDonald's owner, who lost a granddaughter Kiersa's age in a plane crash, donated all dinner proceeds from one night at the restaurant to the Jacobs family.
When the Jacobs' van broke down n thankfully right in front of a Chevy dealership in Portland n the local Candlelighters Childhood Cancer Foundation picked up the bill.
"The way that some of the things just fall into place, it amazes me," Nick said.
Without the state of Oregon's insurance plan covering Kiersa, Nick guessed the medical bills for Kiersa's care would top a million dollars. The procedures that led to her diagnosis cost about $75,000 alone. That's not factoring in lost work, moving expenses and mortgage and rent payments.
The organizations that have helped the Jacobs are too numerous to list. The Payden Foundation in Livingston, Christ's Church in Bozeman and Portland, and dozens of people and businesses in Belgrade and elsewhere across the nation are among the donors. People also have written messages of hope on Kiersa's Caring Bridge Web site, www.caringbridge.org/visit/kiersajacobs.
The Jacobs take it day by day. Soon, they'll learn whether surgery is possible for Kiersa and if there could be other options. It's unclear if she'll ever have a normal childhood, her parents said. But for now, they know they're in good hands.
"I never really thought I was a strong enough person to go through something like this, but when adversity is put in front of you, you rise to the occasion," Jill said. "You've got to have faith that God is going to help you through it."
Amanda Ricker can be reached at aricker@dailychronicle.com or 582-2628.
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