She has a suitcase packed and ready in the corner of her house, because she knows that at any moment she may have to take her granddaughter Alyssa back to the hospital.
Janie Anderson knows that at any moment she may have to drive four hours south so Alyssa Terrazas can return to the Mattel Children’s Hospital at UCLA for treatment for problems with her bladder ““ a condition that has resulted in 37 visits to the hospital in the past eight years.
At any moment, they will once again have to part for a period of time as Alyssa is tended by doctors at UCLA while her grandmother returns home, back to her job and back to take care of Alyssa’s siblings.
Alyssa is one of many patients at Mattel Children’s Hospital who come in from outside of Los Angeles. Due to employment or personal circumstances, some guardians of young patients are unable to be with them during their stay at the hospital.
But to some of the guardians, the care they receive from Mattel Children’s Hospital is worth the distance and the possible familial disconnect.
“Home away from home”
Alyssa has many experiences typical of a 13-year-old girl.
When she shyly smiles, she cautiously closes her mouth to hide the braces that signify her adolescence. Whenever she’s away from home, she spends endless hours talking to her friends, catching up on the latest sixth-grade gossip.
“I like (the sixth grade), but there’s a lot of drama,” Alyssa said excitedly.
But since she was eight, she has had numerous surgeries and visits to the hospital to treat a bladder problem that has diverted her from living the “typical” 13-year-old life.
Anderson, as Alyssa’s legal guardian, has taken her granddaughter back and forth for the past eight years between Los Angeles and their home town of Visalia near Fresno so Alyssa can receive what Anderson said she believes is the best medical treatment and environment to nurse her granddaughter’s condition.
Though Mattel Children’s Hospital has become their “home away from home,” Anderson’s job and means of supporting Alyssa and her siblings is an obligation that allows Anderson to visit only during the weekends, leaving her granddaughter in the care of the personnel at the hospital.
“I cry all the way (on the drive) home ““ she’s far from home, with no relatives,” Anderson said.
But it is the environment at the hospital that compels Anderson to bring her to Los Angeles rather than receive treatment and undergo surgeries at the local hospital. But distance is not without obstacles.
Anderson said she wishes she could be there so she can have direct interaction with Alyssa’s doctors. Then there are the transportation costs and taking time off work.
But she said what the hospital and staff can give her beyond medical care is a sense of friendship.
“She always feels different. Kids at school don’t know why she’s out. When Alyssa is there, she feels loved, she really does feel special. They’ve adopted Alyssa,” Anderson said.
Alyssa says when she is at the hospital, she misses home. She misses her friends. She misses her brother and her grandmother.
Anderson said she hopes her granddaughter will overcome these temporary pains and obstacles and will one day experience normality in her future.
“I can almost plot it on a calendar … when we have to go back. We have to work our lives around it,” Anderson said. “I’d like to see her grow up, fall in love, get married. I would love to see her grow and be happy.”
Bumps in the path to normality
Amy Bullock, the director of child life services at Mattel Children’s Hospital, said there are different variables that can determine how often a guardian will be present during a patient’s stay at the hospital.
These variables include how flexible employers can be in letting the guardians take time to care for their child
Julie Vosdoganis, whose son Anthony is being treated at the hospital for complications with his liver he has had since he was young, travels with her 9-year-old son from their home in Twin Falls, Idaho.
She said her employer understood the difficulties of her situation and reassured her that the job would be kept secure for her. She also added she doesn’t have any other children to care for back home.
“My job is secure. They don’t give me any grief about it. A week (into the job) I had to leave for three months for UCLA, but my job is secure. They know that I can be gone from one to three months,” Vosdoganis said.
But from talking to other parents, she said she knows that not every guardian has that luxury.
Bullock agreed, adding that guardians, such as Anderson, have to go back to their job or find other means of financial support.
“You either have someone who’s really lucky like Julie or find other sources to compensate for the lack of income,” Bullock said.
But Bullock said to help the patients cope with the potential of not having their guardian with them, the staff members at the hospital are routinely assigned to particular patients so they are able to get accustomed to one another and develop more of a personal relationship in a different environment.
“We try to limit the primary caregivers so there’s a consistent group of nurses for the patient. (The children) know they’re going to see the same person every day so (the caregivers) make sure if a child isn’t developing like they could be that that’s communicated to the medical team,” Bullock said.
She added there are also programs and activities, such as music therapy and interactive guitar games, at the hospital to “help facilitate coping and peer interaction.”
It is this environment and the treatment that Anthony receives that has committed Vosdoganis and her son to Mattel Children’s Hospital for the past nine years.
“The doctors are unbelievable. They would do anything they need to help out, and they go overboard for us. I wouldn’t go anywhere else,” Vosdoganis said.
And like Anderson, Vosdoganis hopes that her son will soon be able to receive a liver transplant and resume a path of normality.
“I hope he can start playing baseball and doing what the other kids do ““ that we can just kind of move on with our lives and that he’ll be healthy and no longer in the hospital anymore,” Vosdoganis said.