Assertiveness Training - Page 7 of 7

Children live at home, not with their doctors. Before each child leaves UCSF after a bone marrow transplant, Abramovitz and inpatient BMT nurse coordinators Kendra Toomey and Marissa Quinn educate the family in all the details of at-home care, from safe SCID nutrition to when to call the doctor. The whole team -- as well as the pediatricians at home -- especially reinforce infection prevention. Even though the child's immune system is largely reconstituted, a fever or diarrhea should still mean a quick trip to the emergency room. To prevent such events, parents should watch for unwashed hands, spoiled food, dust and allergens. Friends and family should stay away when they have a contagious disease.

"In these visits to Tuba City, I am beginning to see how heroically these families work to accomplish all this," Abramovitz says. One year a young mother invited the UCSF team to her home to see the challenges she and the other parents overcome. In a dry landscape where people prize isolation, the water supply for remote houses like hers arrives by truck in steel drums. If a fever spikes when the family's vehicles are not available, the young mother's only option is to carry her child a mile to the highway, then hope to hitch a ride to the hospital.

Parents have jobs in town, and fathers often find work far from the reservation. But many families also raise horses, cattle and sheep, and the children pitch in on farm tasks. It's a strain to keep a child away from germs while other kids work and explore. One family had a favorite hen that strolled into the kitchen each morning to lay an egg. Their toddler with SCID found the egg before it could be safely boiled, and smeared raw yolk all over his face. The child ended up hospitalized with salmonellosis; the hen had to be adopted by an aunt.

For some, the most difficult task of all is the assertiveness that Abramovitz and the others teach the SCID parents. "I tell them this condition is very rare. They're the experts on their child's health. They may have to tell doctors or teachers or even family elders the facts about their child."

Lorria Trujillo takes assertiveness along to her job. She works for the Navajo Nation as a health outreach worker, encouraging pregnant women to get prenatal care and helping new mothers learn parenting skills. As Hu teaches health care workers, so does Trujillo teach every mother the symptoms of SCIDA. Most times, a baby with a fever or a few days of not eating well has an ordinary childhood disease. Still, if a mother is concerned about persistent symptoms, Trujillo says she should ask the doctor for a very careful exam.

Years ago, before a blood test was available, her own newborn showed those symptoms, but the doctors did not recognize SCIDA until too late. Now she has a lively toddler, Grace, thriving nearly three years after a bone marrow transplant.

For Katherine Keyahane, the problem is that assertive action can be seen as bad manners. In the Navajo community, it's not polite to put oneself before others. The first time she took her son Marley to the emergency room near her home, the staff did not understand that for a SCIDA child, a fever is a serious matter. When she insisted on sitting outside the waiting room to keep Marley away from people coughing and sneezing, even the E.R. doctor took offense. "They thought I was asking for special treatment," Keyahane says. "All I wanted to do was protect my son."

While Marley's situation is now familiar to medical staffers, Keyahane says she has a few relatives who don't understand. "They say that if I just have the right healing ceremony, he'll be cured. If they come to my house with a cold or flu, they don't understand why I have to ask them not to come in. It's terrible to have to turn relatives away from your door."

Several families have become guides for the San Francisco BMT team, helping them to understand the values that are based on Navajo traditions. The Nez family has guided Cowan and his team on hikes into canyons that few visitors know about, including the one where they raise and train horses.

Last June, sitting around a campfire next to the snug desert house belonging to Courtney's grandmother, Caroline Hosteennez, Karen and Benson Nez began to recall the years when their younger daughter seemed to have one medical crisis after another.

The middle-of-the-night scenes are as vivid to Karen as a recurring dream: she would wake up to a half-heard noise and know Courtney was coughing up blood. She and Benson would leap into the truck, sometimes still in their pajamas, and hurtle down the dark highway to Tuba City. Depending on what the doctors found, sometimes Courtney would be airlifted to Tucson or Phoenix. She spent months at UCSF, as doctors worked to stabilize her condition. A move to the city, nearer a major hospital, began to seem like the only choice.

Instead, the family found what they needed at home in the Navajo Nation. As Courtney began to recover, teachers at her school taught the other children to understand her condition and they became her defenders and advocates. Meanwhile, the Nezes' oldest daughter, Brittney, earned leadership positions in ROTC at high school. Karen, a park manager for the Navajo Nation Parks and Recreation Department, began to work on her college degree through a work-study program. Benson took early retirement from his work as a Navajo ranger, to raise horses and maintain the land grant held by his late father. This gives the family a way to allow his aging mother to stay safely in the remote home that she loves, and to introduce their sons to skills and traditions beyond their schoolbooks. At 12 and 10, both Whitney and Devin can rope a pony while riding bareback, and expertly guide sheep and goats into their corral for the night.

Courtney is becoming the family caregiver. "When someone is in sorrow, she can tell," says her mother. "She'll go right up to them and give them a hug. 'Don't worry,' she tells them. 'It will be all right.'"

The Nez family lost their first child, Brandon, to SCID. "At that time," Karen Nez recalls, "it was new and the doctors could only explain in medical terminology. At one point I asked, 'Doesn't anyone speak English here?' After Courtney was born, everything was different. Dr. Hu, Dr. Cowan, all of the staff at UCSF took care of us. They made sure we knew what was going on and that we were comfortable with it."

She remembers how frightening a bone marrow transplant sounded until she learned it did not involve surgery, only a needle to remove bone marrow from the donor and an intravenous-fluid bag to infuse the treated marrow into the recipient.

Nearly a dozen families brought their children to the UCSF clinic in June, 2002. All but a few stayed until evening, for a barbecue organized by Hu. Fathers in cowboy hats grilled hamburgers and hot dogs. Toddlers and big kids played under the shade trees while teens did their best to hang cool. Mothers and grandmothers and aunts chatted at picnic tables, in Navajo and English. The younger generation wore shorts; grandparents were adorned with silver jewelry set with coral and turquoise, symbols of earth and sky.

The icing on a giant chocolate cake read, "SCIDS Kids Rule!" Only those in the know could tell which of the children were born with SCIDA.

Many of these families were strangers to one another before gatherings like these, so Cowan asked someone from each group to introduce themselves and name their clans.

While parents rummaged for their cameras, someone tried to organize the SCID kids and siblings for a group photo with their doctors. Later the pictures would show Jolana and Shailene sitting with dignity while little boys teased their sisters and little girls took turns in Hu's and Cowan's laps. A determined three-year-old Marley marches toward something more important off camera. Courtney gives Grace a hug. They're all one big unruly family, enjoying their day in the sun.

Page 1 - Two Different Worlds

Page 2 - Translating Science

Page 3 - SCID Genes

Page 4 - Treasured Laughter

Page 5 - UCSF in Tuba City

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