CARMEL-BY-THE-SEA, Calif. —
Volunteers were busy at the Crossroads on Monday getting ready for the Rio Resolution Run bright and early on New Year’s Day.
Every year hundreds of people show up on the first day of the year ready to set a healthy tone for the new year and raise money for a good cause.
The Rio Resolution Run raises money for Coastal Kids Home Care and organization that provides pediatric care for children who are chronically or terminally ill.
The 5k and 10k races are the biggest fundraiser of the year for Coastal Kids and in 2019 those dollars could be more important than ever.
Executive Director Margy Mayfield said the state is cutting its decade long funding of palliative care, one of Coastal Kids’ most popular programs.
“Some of the best things about the care that we provide children when they have long term diagnosis or potentially life threatening diagnosis are our arts, music, and massage therapy, and some of those may be going away,” she said.
Mayfield said a massage may sound like a luxury for many but for bed bound children it’s care that helps improve their circulation as well as their emotional well-being. She says the other therapies are also critical in helping children cope with terminal illness.
“It’s really important kids don’t sit down and talk to a therapist they do play art and you know play therapy art therapy,” Mayfield said.
The Rio Resolution Run raises about $34,000 each year for Coastal Kids. The run starts at 9:00 a.m. on Tuesday and walk ups are welcome in the morning.
Salinas kids got to sit in the big chair — a bunch of them, in fact, at the fifth annual Touch-A-Truck fundraiser Sunday afternoon.
They packed into the Salinas Rodeo grounds to tour, sit in and look through more than 40 public safety, industrial and heavy duty vehicles with their operators on-hand for questions, said Kelli Brown, development director with the event’s organizer Coastal Kids Home Care.
Home Care’s nurses provide regular house calls for children with serious illnesses after they’ve been released from the hospital, Brown said. They also provide children end-of-life care, she said.
Proceeds from the $5 tickets help fund the organization — about 2,500 tickets were sold last year.
For the price, kids and adults get an up-close view of fire engines, dump trucks, law enforcement cruisers, old military trucks and a medical helicopter that landed at the grounds.
The CALSTAR medical helicopter lands at the Touch-A-Truck event Sunday in Salinas. The event allowed kids to get up close to all kinds of work vehicles Joe Szydlowski, The Californian
Every year the program grows with new additions, such as the CALSTAR paramedic helicopter, she said.
“They called us,” she said. “That’s what’s so fantastic about the event. People come with their families and say, ‘I want to bring my truck.'”
CAPITOLA >> In some ways, Josalyn Catarino is a typical 11-year-old girl. She likes getting her nails done, spending afternoons by the ocean, going on trips to Disneyland and watching sappy teenage romances on TV. But Josalyn also suffers from spinal muscular atrophy, a rare — and ultimately fatal — genetic disease that is slowly degrading her muscles and ability to move her body. These days, she can communicate only through eye movements. Recently, she lost her ability to blink. She breathes with the assistance of a mechanical ventilator, eats through a feeding tube and requires full-time care. And her condition is continuing to deteriorate.
But unlike many children with severe and life-threatening illnesses, Josalyn doesn’t live in a hospital or intensive care facility. After living from age 1 to 5 at a care facility in Campbell, she now lives with her parents, Jesus Catarino and Nancy Zepeda, and 5-year-old brother, Jesse, in the family’s Capitola apartment. The front room of the apartment is retrofitted with a hospital bed and medical equipment.
“I’m basically running a subacute care facility in my home,” Jesus Catarino said during a home visit with the Sentinel on Tuesday. Dressed in scrubs and with a stethoscope draped around his neck, Catarino looks ready to step into a hospital room himself. And, indeed, he is. Motivated by his daughter’s condition, Catarino just finished his first year of two years of training as a respiratory therapist.
Despite staying home with his daughter full-time while his wife works, Catarino said the family couldn’t manage alone. They rely on assistance from Coastal Kids Home Care, a Salinas-based nonprofit that provides in-home nursing and therapy services to families with acutely and terminally-ill children.
The Catarino family credits Coastal Kids with allowing them to keep their family under one roof and have the freedom to take Josalyn on trips to not just to enjoy Disneyland but also to attend conferences and meet other children coping with spinal muscular atrophy. Its staff helped the family navigate the state’s medical bureaucracy, and its nurses taught the parents how to care for their daughter at home, giving her respiratory treatments six times daily and among other essential therapies. The nurses still make frequent home visits, and as Josalyn’s condition deteriorates Catarino said the organization has begun working with them to prepare for the end.
“I feel like I’ve been able to show her the world,” Jesus Catarino said.
Coastal Kids Home Care has an array of support services, including family counseling and social workers to help navigate the practical and financial challenges of long-term care. They also offer art, music, massage and pet-therapy programs.
“To me it is the most beautiful continuum of a program where you can meet a family’s needs and understand their stress and not wanting to give up,” said Margy Mayfield, the nonprofit’s executive director. “You can be with them every day, and have hope with them everyday but keep them very comfortable and watch them go at home.”
The nonprofit is the only organization of its kind operating on the Central Coast, according to Mayfield and other area children’s health advocates.
“They essentially saw this great need that nobody was filling, and that was where Coastal Kids was born — to meet this need and serve these kids in the tri-county area where nobody else was, and, frankly, nobody else still is,” said Jennifer Ramirez, executive director of the Partnership for Children, which works closely with the nonprofit and provides transportation and other services to ill children in Santa Cruz, Monterey and San Benito counties.
Founded in 2005, Coastal Kids Home Care works with more than 600 new families each year. Children with life-threatening conditions make up more than half of their clientele, according to Mayfield.
Mayfield said the impetus for the nonprofit came out of her own work experience in area health agencies where she said she realized the system was often geared toward geriatrics than pediatrics. Many of the systems in place to care for elderly patients in-home, such as hospice care, didn’t apply to children whose prognosis was much less certain. Patients on hospice care can’t travel and are generally required to have a six-month end-of-life prognosis.
“I kept thinking to myself, if we ran a really lean and mean organization that focused on children, can we make that happen?” Mayfield said. “And 13 years later, here we are.”
story by Nicholas Ibarra
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
Register-Pajaronian, “A Place of Comfort” Todd Guild, September 4th, 2015
Cynthia Guzman was diagnosed with sulfite oxidase deficiency, a rare metabolic disorder, when she was only 6 days old. Doctors predicted she would die within a few months.
“We cried a lot,” says her father, Jose. “They said they weren’t going to be able to do anything.”
Seven years later, Cynthia is living in North Salinas and, according to her doctors, is the world’s longest-living sulfite oxidase deficiency patient. She can’t walk or talk, nor can she breathe, swallow or eat on her own. Someone has to keep an eye on her at all times to make sure she doesn’t suffocate on her saliva. Her team of pulmonary, neurology and gastrointestinal specialists at Lucile Packard Children’s Hospital at Stanford have no idea how long she’ll live.
Most of the time Jose sits by his daughter’s side, exchanging frequent smiles with her and intermittently giving her chest compressions to help keep her breathing while he cleans out her breathing tube.
Life With Cynthia
Jose Guzman talks about life with his daughter Cynthia. Photos by Nic Coury.
It’s a common routine at this point. He and his wife, Esther, have cared for their daughter almost 24 hours a day for the past seven years – and it’s taken a steep toll on their marriage, jobs and mental health.
“We had a very hard time. She got pneumonia by aspiration a lot and would usually be in the hospital for more than a month at a time,” Jose says. “Both me and my wife were in deep depressions. We didn’t know what to do and didn’t have enough money because it’s a hard time to go to work after your child is sick. You can’t concentrate.”
Had Cynthia been 70-years-old instead of 7, she could have received services in spades, all covered by Medicare: in-home hospice services, therapy for her stressed out, scared family and what’s called palliative care – specialized treatment that focuses on the pain and ongoing management of serious illness.
Until recently, such programs for the 21-and-under set didn’t exist. A chronically ill or dying child in need of immediate care instead took frequent and expensive trips to local emergency rooms, facing treatment in potentially strange surroundings by unfamiliar doctors and nurses.
Meanwhile, parents in the midst of the worst crises of their lives were left without a road map on the worst trip imaginable: helping their child die.
But in April 2010, things changed for the Guzmans and families like them throughout Monterey County.
Lucile Packard Children’s Hospital referred the Guzmans to a program newly covered by Medi-Cal: Coastal Kids Home Care, one-third of a pediatric collaborative that also includes the Children’s Hospice and Palliative Care Coalition and the Jacob’s Heart Children’s Cancer Support Services.
Coastal Kids provides the Guzmans with a nurse who’s on call 24/7 to make house visits as needed.
“It saves us a trip to the doctor, which is good especially in the winter, cause she gets sick really easy,” Jose says.
The program also supplies Cynthia with massage and music therapy, and her parents with in-house counseling from a social worker and a babysitter trained to care for sick children so Esther and Jose can spend much-needed time alone on Friday nights. Esther, shy and with a ready smile, prefers to let her husband speak about their daughter.
“We see Cynthia as a gift now, not a problem,” Jose says as he kisses his daughter’s small hand.
As of 2010, more than 140 families in Monterey County were dealing with the harsh realities of caring for a child with a life-threatening or life-ending condition. Making a devastating situation worse, state-sponsored home hospice programs require parents and doctors to end all curative treatments under the assumption that the child has no more than six months to live.
Lori Butterworth, founder and former executive director of Jacob’s Heart, saw firsthand how detrimental that all-or-nothing approach was for families. In 2001, she took her concerns to her friend Devon Dabbs, a Central Coast documentarian and television marketing executive with film credits including the Peabody-Award-winning CBS documentary, Break the Silence: Kids Against Child Abuse.
The women turned their talk into action, and developed the Children’s Hospice and Palliative Care Coalition, a service network similar to that provided by adult hospice, but for children ranging in age from newborn to 21 years old.
Their goal was to change the backdrop for children by loosening the restrictive hospice regulations for children. “Hospice has always been a challenge for children,” says Dabbs, now executive director of the coalition. “For families to sign off on a document that states that their child has likely less than six months to live, it feels as if they’re giving up hope.”
Dabbs, a mother of three, admits she has no idea what it would be like to see one of her children die. But in a voice both empathetic and assertive, she says it’s not “rocket science… if my child were sick, this is something I’d absolutely want.”
A report from the Institute of Medicine found that eligibility barriers prevented more than 99 percent of children from getting needed hospice services – and further fueled the women’s fire. Dabbs and Butterworth wanted a way for families to access community-based hospice and palliative care while continuing the hunt for a possible cure.
From 2001 to 2005, they pounded the pavement to raise awareness. And in 2006, former Gov. Arnold Schwarzenegger signed into law the Nick Snow Hospice and Palliative Care Act, drafted by former Assemblywoman Wilma Chan and co-authored by former Senate Pro Tem Don Perata and former Sen. Deborah Ortiz.
That law allows the coalition to obtain a federal waiver so Medi-Cal can cover a portion of the services the group provides.
It also mandated that the state Department of Health Services work with the Children’s Hospice and Palliative Care Coalition to create a three-year pilot program that enables children to receive both hospice and palliative services, while letting them continue to seek cures and life-prolonging treatments.
“Families get the full package of services,” Dabbs says. “It makes a difference in both quality of life and quality of care.”
The coalition – mostly funded by grants from the Hospice Foundation, the Community Foundation, a state waiver and private donations – also makes good economic sense. Hospice care costs significantly less than an ambulance trip to the hospital, which can run anywhere from about $650 to $1,000 per trip, and hospitalization, which can cost $2,000 per day on the low end of the spectrum.
“It’s only been recently, with all the cutbacks with Medicare, that hospitals started to listen to options that saved money. Palliative care has come to the forefront, using that as leverage,” says Dr. Leslie Foote, a palliative care specialist in Salinas and consultant to the collaborative.
Also on the Central Coast, nurse Margy Mayfield had already committed her life to providing home care for terminally ill children – founding Coastal Kids Home Care in 2007. The Salinas agency has since become an integral piece of the collaborative.
“Instead of just sending in a nurse, I have a social worker next to me, and we also can bring in other therapies,” Mayfield says. “It’s a whole-team approach that’s never been done before.”
Previously, when children were sent home from the hospital, there was very little support for their families. If something went wrong in the middle of the night, the only option was to call 911. The child would be rushed to the nearest emergency room and would eventually have to be transported to one of the nine children’s hospitals in California.
For Monterey County, the closest children’s hospitals are University of California San Francisco and Lucile Packard in Palo Alto.
“It costs a lot, financially and emotionally,” Dabbs says. “Our goal was to create this community network of support that would enable families to continue with treatments… in Monterey County there currently is not a hospice agency that is willing or able to care for children.”
Only patients with Medi-Cal are currently eligible for the pilot program, and that Medi-Cal waiver could be yanked if the program doesn’t remain budget neutral.
At the Children’s Hospice and Palliative Care Coalition office in Watsonville, crayon drawings with words like “hope” adorn the walls, confirming what the program’s all about: helping critically ill children live and enjoy life, no matter how much time they have left.
It’s also about helping parents endure, because when parents are asked to stop a child’s treatment, it can make them feel as if they’re giving up all hope.
“We often don’t know how children will respond to treatment,” Dabbs says. “There are a lot of difficult questions and issues, and often the conversations are never had among the physicians and the parents, because everyone wants to keep trying for as long as they can.”
For Nora Bianchi, chair of the Family Advisory Council and director of the coalition’s operations, end-of-life care for children hits especially close to home. When her daughter Ruby was 6 weeks old, Bianchi noticed she’d lost muscle tone in her legs.
“We raced up to Stanford, and I think they knew immediately what it was, but didn’t want to tell us,” she says. “We got a phone call telling us it was a degenerative muscular disorder called spinal muscular atrophy, and she had 6 to 12 months to live.”
Bianchi was faced with a common question asked by parents after hearing such news: “What do we do?”
Her options were limited.
“For us it was a matter of when do you bring in hospice rather than whether we bring in hospice, because we knew there was nothing we could do for her,” Bianchi says. “It was a matter of keeping her comfortable and supporting us, and she lived a fairly normal life until her last couple months.”
At the time of her daughter’s illness, the services now offered through the collaborative weren’t available to Bianchi and certainly not covered by any form of insurance.
“We were asked to sign over our rights to hospice and walk away from medical options, which is a very difficult thing for a parent to do,” she says.
About eight weeks before Ruby died, she began receiving hospice services and she was able to be cared for at home. It made the difference between spending her final weeks in the hospital, or dying in a place that was familiar.
“It was a life-changing experience, and after 10 years I was ready to work for children’s hospice and share my story,” Bianchi says. “It’s a gift to have a child who brings your whole focus into what’s most important for you and your family. I look on it as the greatest gift I could have been given, to walk that path with her.
“Every child’s story is different, and every child’s story is perfect,” she adds. “It’s hard for a parent who’s in it to see how much wisdom they’ll gain. These children that we see are all little packages of profound meditation on love.”
Even with the federal assistance to Medi-Cal, adequate funding continues to be a challenge.
The state doesn’t pay anyone on the Medicaid program very well as far as reimbursements,” Mayfield says. “So the collaborative had to start writing grant applications.”
Medi-Cal pays a flat fee to Coastal Kids for every patient visited. But Mayfield says the reimbursements are about $70 short, on average, and the rest has to be made up through grants, private donations and fundraisers.
Meanwhile, Medicare covers full costs for adult patients to receive the same basic health care.
“We’re not doing anything fancy here,” says Mayfield. “We have little overhead and I’m out seeing patients as an administrator all the time. That’s how I run the place, and that’s how I’m able to keep it going.”
For Coastal Kids’ first three summers, Mayfield worked without pay and took out a second mortgage on her home.
“I would go three or for months without getting paid by the state, and I had just opened my doors,” she says. “We figured it out, and we’re getting stronger and healthier.”
It wasn’t until January 2011 that Mayfield and her employees were able to receive medical benefits of their own. And money is still tight.
“We’re so lucky because we have these services and the waiver, but the reimbursement for us to provide these services still doesn’t come close to the cost of doing it,” Mayfield says. “We’re billing for everything we can bill for, but it doesn’t cover everything.”
Cynthia spends most of her time in a miniature mobile hospital bed in the Guzmans’ den, which looks like an ordinary family gathering spot with a television, puffy couches and family photos on the walls. She’s all smiles, and communicates with her left hand, which is covered with a fuzzy red glove to keep it warm.
“Before Coastal Kids, we had many sleepless nights,” Jose says. “Now, we’re more secure and more confident.”
The Guzmans are as prepared as they can be, knowing that any given night could be their daughter’s last. But they have peace of mind knowing she is able to live with them comfortably and have the necessary support just a phone call away.
A couple weeks ago, Cynthia had a bladder infection and Coastal Kids treated her in her own home. It’s a simple luxury the Guzmans didn’t have a year ago.
“She’s been making noises and smiling,” Jose says. “When she’s smiling, we’re happy.”
The sight of Cynthia’s smile and the ability to care for her at home helps the Guzmans get through the day.
“We just go one day at a time,” Jose says. “We don’t want to worry about what will be the last day. We’ve learned to give those things to God. When she’s gone, she’s gone.”
But it’s how she goes, when she goes, that may leave a sense of peace.
Monterey County Weekly, “Network of Caregivers Shuttles Children and Families Through the Complex World of Critical and Life-ending Illness,” Adam Joseph
Coastal Growers Magazine, “Improving Care for Children and Adults with Life-Threatening Illnesses”, Jennifer Pettle