Precious time for Little Stars.
Even near the end of his too-short life, 3-year-old Davie - officially David Victor Untz - still wanted to play.
"He would come out of his room, and his little legs would be hurting so much from the chemotherapy that he'd hang onto the door and say, `Come on door, don't move - help me out,'" his mother, Lynn Untz, recalls. "Even in the last weeks of his life, he was always in motion. The reality is, kids may be terminally ill, but they still want to be active. They want to try to be normal."
Too often, though, gravely ill children either end up spending their last days or weeks in a hospital bed or making frequent trips back and forth to specialized medical centers for treatment.
But not those who - like Davie Untz - become part of Little Stars, an in-home hospice program for children developed five years ago at PeaceHealth's Sacred Heart Medical Center by registered nurse Nancy Diane Manelli-Brewer and medical social worker Dora Parys.
"I started out as a pediatric nurse in Seattle, working in an oncology (cancer) unit," Manelli-Brewer said. "When I moved to Eugene, working with hospice seemed like a natural move, but I also wanted to work with children again."
After attending a seminar on providing palliative care - alleviation of the symptoms, pain and stress associated with illness - for children, she knew she'd found her niche. Back in Eugene, Manelli-Brewer put together a session at Sacred Heart, and Parys, too, was hooked.
"I also wanted to work with children, so this was very interesting," Parys said. "What's special is that it's not only pediatric care but it also can be end-of-life care, and that's something that many places won't do for kids. But it has a huge impact on them and their families, so we were willing to do it."
Their resolve became even stronger when they met 9-year-old Mary Kerns, a Eugene girl who had been receiving treatment for end-stage leukemia at Doernbecher Children's Hospital in Portland.
"She wanted to come home - her need and intention to be at home solidified this whole idea for me," Manelli-Brewer said. "So, when Doernbecher asked us to take her, that was all it took."
Not a huge program - besides Manelli-Brewer and Parys, its staff consists of another nurse, another social worker, a chaplain and a couple of volunteers - Little Stars works with about a half-dozen children and their families each year. The program took its name from another early patient, Tyson Maggio-White, who loved gazing at the night sky and told the hospice founders that the name should mention the stars.
Unlike many hospice programs that serve mostly elderly patients who are past the point of seeking curative treatment, Little Stars works with families to provide palliative, or comfort, care to children who still may be under active medical treatment. One of their main goals now is to increase the number of insurance companies willing to pay for palliative care for child patients who receive care at home.
"This is a heartbreaking scenario for any family, and we work with everyone involved because we don't want people in this situation spending their precious time in hospital hallways," said Parys, who along with Manelli-Brewer recently received the Oregon Hospice Association's Beth Wessinger award, which recognizes those who make significant contributions to end-of-life care.
The pair's efforts also have received much wider attention; they represented PeaceHealth at an international conference in Rome, where they shared their Little Stars effort with medical professionals from five continents.
But it's what happens right here at home that's most important to the two women, who along with their Little Stars teammates garner high praise from parents whose children have lived and died with the program.
Tim DeLage, whose son Devon was born with a rare degenerative disorder called metachromatic leukodystrophy and died at 2' years old April 3, said the hospice program made a huge difference in the quality of his son's short life as well as the ability of family members to accept Devon's death.
"He had been in the hospital at Doerhnbecher, but when his condition started downhill, hospice had all the medications we needed, so he was able to be at home," the still-emotional 35-year-old father said. "The last thing he did was smile at me, with his last breath."
His parents, Charlene and Bill DeLage, give Little Stars similar raves.
"Besides offering us counseling, Dora (Parys) helped us all through the death process," Charlene DeLage said. "Everything she and Nancy Diane (Manelli-Brewer) did made us able to move to the next step."
In the hours after Devon's death, the two women remained with them, she said, even making a Sicilian breakfast for the crowd that had gathered to be with Devon. "I don't know how people go through this sort of thing without that kind of help," DeLage said.
Although nearly a year ago, Devon's death "still seems like yesterday," his father says. "I still feel all those emotions - it's hard to believe all that happened."
To this day, in honor of Davie, who "was my total and complete heart," Lynn Untz still keeps one of her son's favorite toy trucks on her front porch. She adopted the infant boy from Guatemala soon after his birth on Nov. 18, 2000, and after going through all the necessary paperwork, brought him home to Eugene the following March.
"He called himself `the worker,'" Untz said, smiling at the recollection. "He was so connected; he knew the name of every possible type of construction vehicle."
While visiting Untz's relatives on the East Coast, Davie suddenly experienced lethargy - "He wanted to stay in one day and watch television, and he never did that," his mother said - followed by a severe bruise after a routine playground fall. She immediately took him to a clinic for
blood work, "and when the man called back with the results, his voice was shaking - you can't imagine terror like that," she said.
Davie's diagnosis was chronic myelogenous leukemia, caused by the presence of the "Philadelphia chromosome," an acquired mutation with an unknown cause.
"People have the idea that (childhood) leukemia is curable these days, and for probably 75-80 percent of cases, that's true," said Untz, who teaches English composition and writing at Lane Community College. "But when you're not in that percentage, it may not be like that."
After a couple of weeks in the intensive care unit in Virginia, she made the decision to leave her family and return with Davie to Eugene, "where he was at home and where we have a strong network of friends."
Davie's best chance was a bone marrow transplant, and she started a search for relative donors through the orphanage in Guatemala. In the meantime, he underwent high doses of chemotherapy to put the leukemia in remission. By March 2004, "we located several siblings, including a half-sister who had been adopted by a family in Indiana, and her parents were perfectly willing for her to be a donor," Untz said. "But unfortunately, the leukemia came back before we could do the transplant."
Then came the mention of "hospice, a word I had never even wanted to consider," she said, "But (Little Stars) allowed us to do a lot of things we hadn't been able to do for the previous 18 months. We could do it all here - (hospice) would come in twice a week and keep us stocked with medications - low-dose chemo to keep his counts OK and rounds of prednizone and morphine - and because of them we could just go to Sacred Heart for blood transfusions but do all the preparations at home."
Once, Untz remembers, she told Manelli-Brewer that she and Davie would love to go to the beach for a couple of days, "and she coordinated the whole thing."
During that summer, Davie's blood counts suddenly "started looking very good," and his doctors recommended a clinical trial in Baltimore, "so we flew out there," a decision she later regretted. "It seemed to work at first, and then it stopped working and he developed pneumonia," Untz said. "That whole trip was a total roller coaster. One day, Davie said, `Mom, I don't want to be with new friends, I want to be with my old friends.'"
They flew back to Eugene in early August, "and I really accepted in my heart that enough was enough - I was not going to let him endure any more," she said. "When you've got just those precious minutes ..."
From then on, with the hospice's help, Davie lived as normally as he could, going for walks "in this thing, a cross between a stroller and a wheelchair, that he called The Cadillac," she said. "Right up to the end, he was playing in the yard with his trucks, and he picked out a pumpkin at the pumpkin patch."
The two had paid a visit to Home Depot to buy wood to build a dump truck and a backhoe, but on Oct. 27, Davie had little appetite for breakfast and then crawled back in bed. When Untz followed him to his room, "he said, `Mom, let's not build the dump truck,' and I knew."
She started making telephone calls to friends and family, and many had gathered by the next day to be with Davie and his mom when he died - at home - 13 days before his fourth birthday.
One of the telling moments of their hospice experience occurred during Davie's last days when Manelli-Brewer was in the process of building a new house, Untz said.
"She took him over to the house when they were laying the foundation - he was thrilled to see that - and he made his handprints in the foundation."
His little handprints "are still there, and they always will be," Manelli-Brewer said. "But that's what working with these families is all about. You don't just take care, you stay in touch. These deaths are transforming experiences, with everyone trying to make a meaning of it."
Only now, going on five years after Davie's death, has the now 51-year-old Untz begun to think again about adopting another, probably older, child.
"Davie's death was such a loss," she said. "But his life was such a gift."
CONTACT LITTLE STARS PEDIATRIC HOSPICE
For more information about Little Stars, or to make contributions to support the program:
Mail - Little Stars, Hospice of Sacred Heart, 1121 Fairfield Ave., Eugene, OR 97402
Telephone - 461-7550
E-mail - NManelli-Brewer@peacehealth.org; DParys@peacehealth.org
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|Title Annotation:||Oregon Life; Families get help making their last days together count|
|Publication:||The Register-Guard (Eugene, OR)|
|Date:||Mar 8, 2009|
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