Yarelli Barrera, 13, had occupied her sister and brother-in-law’s bedroom for the past two months and before that, the home of an aunt. The troubles began when the MRI, the X-rays, and the CAT scans revealed that Yarelli had a tumor the size of a golf ball in her knee. That was about the same time that her mother, father, two sisters and she lost their home.
Her mother, Hilda, explained in Spanish, “When we learned about the cancer, we asked the landlord if he would fix up the house. It was old and needed a lot of repairs: a sink that was plugged-up, cleaning and painting. He said he would take care of it if we would move out so he could do the work. We put our things in storage and eventually had to move in here with my daughter. We thought it would be for a month or so; but when we went back, the man had already rented our home to someone else. I don’t think that he did anything to repair that place.”
The plight of Yarelli’s family came to the attention of Coastal Kids Home Care. The organization was launched in 2005 by its co-founder, executive director, and registered nurse, Margy Mayfield. It provides pediatric in-home care to families who have a child suffering from chronic illness, injury, or a life-threatening condition. Coastal Kids Home Care is the only organization in Monterey County that provides such vital care to children. The local hospice focuses only on adults.
Yarelli lay on the bed, her head covered with a knit cap. She was dressed in sweatpants and a pullover. She clung to a light blanket. Crutches were set against the wall. With her mother and sister standing alongside, a reporter introduced himself and asked Yarelli if she would like to share her story. She looked to her mother and her sister, Karen, for help.
“She’s kind of shy,” Karen explained and then continued for her. “At first, in December of 2014, we noticed bumps on her lower leg and then swelling. After a while, it seemed to go away. But then, it came back. This went on for several months. In May, we took her to Natividad. They transferred her to Stanford Children’s Hospital in Palo Alto for tests.”
Karen had broken the ice, but what did this aggrieved young girl have to say about it all.
“Did they tell you what was going on?” she was asked. She thought back to that hospital room so many months ago.
“After the tests,” she said, “they didn’t tell me anything; just talked to my mom. About a week later, they said I had cancer.”
She shrugged and smiled briefly as if that simple sentence explained it all.
When asked “What happened next?” Yarelli waited for her mom or sister to answer, but they urged her to continue.
“I started chemo right away. I got two medicines through an I-V; first the red bag for 15 minutes and then the yellow bag for 4 hours. I had to stay at Stanford for two weeks. Then I had to do it again. Two rounds in about a month.”
Yarelli spoke of her plight with a calm resignation; but the more she talked, the more strength and fight beneath the surface grew evident.
“I was supposed to keep going with the chemo,” she said, “but, in August, the doctors decided I should have surgery right away. They went in to remove the tumor in the bone, but they only got about 75% of it.”
“You have crutches. Were you able to start back to school in September?” she was asked.
“At first, I had an in-home teacher through Washington Middle School; but after the surgery, I had to make up the chemo sessions I missed. I went to Stanford once a week. Sometimes I’d have a bad reaction so they’d have to stop them for a while and then start up again.”
“She couldn’t keep up with the home schooling,” Karen added, “because of the time she spent at Stanford and because of the chemo. She had some pretty rough days.” Karen stood at the foot of the bed. Hilda knelt on the floor beside her daughter. Karen continued, “Then on January 1st, she had a fever of 104°F. She went into shock. Her whole system started shutting down. They said, if the ambulance had taken too long, she would have gone into a coma. It turned out that her body was under attack from bacteria. Her knee had become infected. They didn’t know if it was related to the medicines or the blood transfusion.”
As it turned out, Yarelli was diagnosed with a mycoplasma infection. In late January, she had to undergo a second surgery to try to clear the bacteria. After surgery, the doctors decided that the remainder of the tumor would have to be attacked with more chemo sessions.
Now, six weeks later, these sessions are just one more ordeal that Yarelli has successfully overcome.
“It’s been a long battle,” Karen said, looking proudly at her sister. “She’s been sad, frustrated, and depressed at times; but now, she’s happy to be done with all that chemo although she’s still has to take 12 pills a day to fight the infection.”
“I’m hoping to work with a home teacher again to start and complete my 7th grade before September.”
“Good for you. How about your friends,” I asked. “Do they come to visit?”
Asked if her friends come to visit, he answered, “They used to. But then, I didn’t want them to come anymore.”
“You have to let your friends come see you,” she was told teasingly. “They want to know how you’re doing, don’t they?”
“I guess I’m embarrassed,” she said with a shy smile.
That smile was the perfect cue.
“Well, you know what I say to that?” her visitor said.
“Get over it!”
Yarelli laughed right out loud.
The reporter finished the interview and thought he had gotten the essentials of Yarelli’s story. He stepped out of the bedroom, into the living room and started talking with Hilda and Karen.
The story was just beginning.
“Things have been a little tough for us,” Karen said. “I’m not working now and this place is small with all of us here. It’s only a one bedroom.”
“So, it’s you and your mom and Yarelli living here; and only one bedroom?” she is asked.
“Yeah. But then there’s also my husband and my 21/2-year-old, and my dad, and two other sisters.”
“You have eight people living in this one-bedroom apartment? How do you manage?”
“My mom shares the bed with Yarelli. We all find our space for the night. But, yeah, it’s kind of crazy. I heard there’s a three-bedroom opening up a few doors over, but it’s $1,600 a month. I don’t think we can go that high until the work starts up again.”
“I pick strawberries, but I won’t be going back to work until I know Yarelli’s OK,” Hilda said. “And we don’t know how long it will take for her to recover; and then, she has the other problem.”
Hilda looked at Karen, and Karen explained.
“When Yarelli was at Stanford, they discovered that she has a heart condition. One of the arteries isn’t working right. It’s twisted somehow. So, when she recovers from the cancer, they’re going to have to go in and fix the artery.”
Hilda’s motherly eyes welled up and tears came.
CHISPA to the rescue
Later, Karen explained that her father and husband were both working in the berry fields. Hilda and Yarelli’s dad, Israel, had applied to the Housing Authority and to CHISPA for an apartment, but were on the waiting lists.
That night, Alfred Diaz-Infante, CHISPA’s executive director, was told about Yarelli and the Berrera family’s living conditions. When he heard, Alfred was concerned and responsive.
“That’s a situation that we may be able to help with. It qualifies them for an emergency priority designation,” he said. “I don’t know if we have any units available, but I’ll find out.”
Two days later, Alfred had news.
“I spoke to our management staff. We have a four-bedroom coming open in the next couple of weeks. It’s $1,100 a month. Do you think they can handle that?”
Hilda confirmed that the couple had been paying as much for their former home — the one the landlord had rented to someone else.
The following day, Hilda and Israel Barrera stood at the counter at CHISPA’s office at South Main and Alisal in Salinas. They updated their application with fresh hope that perhaps some relief from their burdens was on the horizon.
Coastal Kids Home Care
Kim Hell, a registered nurse with Coastal Kids Home Care, has cared for Yarelli since first starting with the organization last September. During her 10-year career, she has provided direct care in children’s hospitals in St. Louis, Tucson, and Los Angeles. She also has worked in pediatric AIDS research and HIV community outreach and education.
“I love my work with children because I have the opportunity to engage with the whole family,” she said. “I help them learn how to care for their child at critical moments. It’s an honor to be invited into the home and minister to a child who is suffering from a life-threatening disease; to help relieve pain.”
She has encountered all kinds of situations, she said.
“We see a wide variety: kids with cancer or diabetes, pre-mature babies; circumstances, like Yarelli’s with great hope for the future, and others — unfortunately — beyond treatment.
“Generally, we’re there to assess the child’s health, draw blood, provide specific medical treatments; but nursing is so much more than medical procedures. Sometimes we’re teachers, sometimes counselors, helping the family to cope.
“The parents know their child, but they may not know how to care for them in the unusual circumstances they find themselves. We teach them what signs and symptoms to look for, so they know when to call the doctor. There observations and actions can often prevent the child from getting worse and having to be hospitalized. A large part of our work is to empower the parent and the child.
“Stanford is a long way away for a family struggling with a major illness. Because we’re there in the home once or twice a week, the time in the hospital and the number of trips back and forth to Palo Alto can be greatly reduced.
“Yarelli, for example, has had a nasal-gastric tube. It was uncomfortable and at first she kind of fought it. Then we were able to teach her how to insert it herself. She struggled to overcome her fear and the discomfort; but once she learned how, she found that she was in control. She could use it only when she needed it instead of having it there all the time with her having no control.
“Ultimately, we’re there to support the parents so that the child is as comfortable as possible and the appropriate treatments are maintained.”
In 2015, Coastal Kids Home Care provided in-home care to 661 children, 80% of whom were under the age of 10. In that year, its nurses and social workers made 4,798 home visits.
Kim shared her own 2-day-per-week schedule. She serves approximately 20 patients in any given month with one or two visits each week.
It was clear how important these two non-profits — Coastal Kids Home Care and CHISPA — are to the future of Yarelli and her family.
In the coming weeks, The Californian will follow-up with the Berrera family’s story as her parents complete the process of finding an adequate home through CHISPA and continue to receive vital support from Coastal Kids Home Care.
In the meantime, one comes away fairly certain that Yarelli will push forward her fight against the disease that has attacked her leg and then confront her coming heart surgery with the same indomitable albeit, at times, shy resolve.
The Salinas Californian, “Nonplussed, thanks to two Salinas nonprofits” Edward Moncrief, April 13th, 2016