Money & Marrow -- Donations, determination provide hope for stricken Goble girl

By Cathy Zimmerman

July 04, 2006 - ST. HELENS, Ore. -- Chuck and Jacqueline Roberts of Goble, with the help of hundreds of area residents, have moved a mountain.

The couple raised $290,000 in fewer than six months for the non-covered medical expenses of their daughter's bone marrow transplant. On July 11, 7-year-old Victoria will begin the procedure at Fred Hutchinson Cancer Center in Seattle. Chemotherapy treatments will kill off her blood cells, then surgery will replace them with healthy cells from a donor.

The little girl has severe aplastic anemia, which causes the immune system to destroy white and red blood cells and platelets. The disease may have a genetic component and is linked to chemicals and viruses.

"We sold our place, we sold our furniture, and we're moving to St. Helens," Jacqueline said last week. "There's boxes everywhere; it's crazy."

In the midst of all this, the mother displayed her usual calm and good humor, rhapsodizing over the support of surrounding communities. "I'm blown away," Jacqueline said. "We pray every night for everyone who has helped us."

The Roberts' medical coverage pays $325,000 of the $625,000 approximate cost of the transplant. As soon as the Roberts did the math, they, their family and friends organized car washes, garage sales, a church supper, a bake sale, a car cruise.

In Longview, Kids World preschool at First Christian Church, which Victoria attended, raised $4,500 with a rummage sale. "They worked their tails off," Jacqueline said. NBA player Theo Ratliff of the Portland Trail Blazers donated $30,000 and invited Victoria to appear at half-time of a game. And last month, a father whose child did not survive a transplant transferred unused funds raised for her care to the Roberts.

"COTA allowed it, because we knew each other," Jacqueline said, referring to the Children's Organ Transplant Association.

COTA is a national group that guides and supervises fund-raising for people facing transplant costs beyond what they or their insurance pays. The group's Web site says "One hundred percent of all funds raised are used for transplant-related expenses."

According to Jacqueline, COTA President Rick Lofgren told her that their effort is among the top three fund-raising campaigns every supervised by the group. (Lofgren was on vacation and could not be reached for comment.)

The Roberts have liquidated their Goble house, horses, and rural property to meet expenses.

"We were really sad about selling our farm, but we're OK with it now," Jacqueline said. "I just want away from there."

How's Victoria taking all this?

"She is fantastic," her mother said. "She loves her new house; she's happy as she can be. She's a trooper."

The girl has not needed transfusions, which is a plus for transplant candidates, her mother said.

"She has an amazing ability to be low" in her hemoglobin counts even while taking no naps. "She has tons of energy. ... We've had the high fevers, but never a nasty infection. That's due to vitamins --- and the good Lord." Still, Jacqueline said, "You're rolling the dice every time you take her out," because a cut or accident can be fatal to someone with aplastic anemia.

"We were driving one day and an ODOT truck came at me head-on in my lane," she said. "I hit the ditch. We hit pretty hard, but we were OK. The worst thing that can happen is a car accident. You never know what's going to happen."

Eighteen months of minute-to-minute caution will soon move over for high-risk surgery and three months of waiting to see if it works.

According to the Web site of the National Marrow Donor Program, younger patients have the best chance of surviving such a transplant.

Victoria's age is on her side. And she has a willing donor, sorted from volunteers who are put through two rounds of genetic testing to find the closest match possible.

In late May, a 59-year-old male was the only one of 10 possible donors from three countries to make it through the tests. "They found a match," Jacqueline said. "The only thing that doesn't match perfectly with Victoria is the only thing that doesn't matter."

In Seattle, Victoria will undergo a series of tests, then chemotherapy to destroy her remaining bone marrow cells, and then the transplant that replaces her cells with those of the donor. It will be several months before doctors are certain she has accepted the new bone marrow.

The Roberts will stay at the Ronald McDonald House, Jacqueline said, "for $25 a night, which is good. It's practically in the parking lot. The main thing is to be close."

They decided to take along their 14-year-old son, Landon, although they had considered leaving him with a relative along with the family's two dogs.

Jacqueline called Parkdale Kennels in Rainier, owned by Butch and Bev Higgins, to arrange for the pets to be boarded for 50 days or more and factor in that cost. The next day, a kennel employee left a voice mail.

"She said the dogs could stay there for free, as a donation. She was crying on the voice mail."

To their list of things to do, the Roberts seek to express the gratitude that floods their days. "We have good angels," Jacqueline said. "Very tired, but very good."

To follow Victoria Roberts' progress on-line or communicate with the family, visit www.VictoriaRoberts7.com

According to COTA president Rick Lofgren in a press release, "More than 90,000 Americans are on transplant waiting lists and sadly, an average of 18 die each day because of the lack of donors." For information on donating bone marrow, contact the National Marrow Donor Program, www.marrow.org.