Life is different for this Gilroy family that deals with the
daily struggles of cystic fibrosis
By Rachelle Gines Staff Writer
Gilroy – Four-year-old Caley Camarillo propped her head against a pillow, and lounged on the couch in her living room. She crossed her right leg over her left, flip-flops dangling in the air, as the blue sequins on her shoes sparkled next to her painted red toes.
After she took a sip of her drink through a purple straw in her pink sippy-cup, Caley twirled a ringlet of light brown hair that had come loose from her pony-tail around her finger.
And in a flash, she was off again. Off chasing the family cat, Sassy. Off catching a ball her 8-year-old brother Martin Jr. threw down the stairs. Off seeing what her younger sister, 2-year-old Carly was doing with the My Little Pony toys they share.
Caley’s father and mother, Teresa and Martin Camarillo smile and nod, break up fights, give kisses and hugs. But at least three times a day, Caley sits still, mask in hand, while medicated vapors flow into her tiny lungs.
Caley has cystic fibrosis, a chronic disease affecting the respiratory system and digestive track, in which thick, sticky mucus creates a buildup in her lungs making it hard for her to breathe, Teresa Camarillo, 29, explained.
Though Caley has been hospitalized five times in the four short years of her life, and Teresa said the disease is terminal, she and husband Martin have not allowed cystic fibrosis to cast a spell of depression and hardship over their family life.
“Caley was blessed with cystic fibrosis, and it shouldn’t be frowned upon,” she said. “God blessed her with it for a reason. She wouldn’t be the person that she is today without it.”
Martin Camarillo Sr., 30, offered a simple explanation as to why his family thrives in spite of Caley’s disease.
“The amount of love I feel in this family, its crazy,” he said. “Not to say that other people don’t love their kids. But I love, I feel loved, and I am loved.”
All about Caley
Caley Camarillo gingerly took the hanger holding her satin yellow dress, and carried it carefully up the stairs to her room. Her dress, she explained, is just like the Disney character Belle’s in the movie cartoon, “Beauty and The Beast.”
“It is very beautiful,” Caley said as she eyed her dress. “Belle wore it at the castle.” Caley got the dress when she went to Disneyland in July through the Make-A-Wish Foundation.
Inside Caley’s room, it is a little girl’s dream. A whirl of pink butterflies decorate the walls and colorful heart-shaped balloons hang suspended from the ceiling. At least a dozen blue, green, pink and yellow Care-Bear stuffed animals sit on Caley’s headboard, presumably watching over her as she sleeps.
Back downstairs, it is easy to see the precocious little girl is intelligent. After some initial shyness, she answered questions quickly and easily.
“My favorite store to shop at is Target,” Caley said answering in a complete sentence. “I like Belle the best of all the Disney Princesses and I like Mary-Kate and Ashley Olsen,” she said referring to the famous twins who grew up on the television show “Full House.”
Besides Caley’s intelligence, her mother said she is amazed at her daughter’s ability to deal with all the medications, treatments and hospital stays that are a regular part of the 4-year-old child’s life.
“She takes them no problem,” Teresa Camarillo said of the at least 30 liquid, pill or aerosol medications that her daughter must take daily due to cystic fibrosis.
A little later, Caley heard a car and ran to the window.
“Daddy!” Caley said with excitement as Martin Sr. came through the front door. After Martin put his things down, he joined his wife and kids on the couch for some tortilla chips. Two-year-old Carly ran into his lap, and Caley and Martin Jr. clamored around him.
A day in Caley’s life
A day in the life of Caley Camarillo isn’t easy. Along with the numerous pills and liquid medications Caley must take, she also receives breathing treatments. During the treatments, Caley must inhale medicated vapors through a nebulizer, a machine that uses compressed air to turn liquid medication into medicated vapors that can be inhaled into the lungs, helping to break mucus up. The nebulizer is connected to a mask that Caley wears, or one she holds up to her mouth and nose.
Caley must sit through three to four breathing treatments a day, that last about 20 to 40 minutes each. Still, Teresa Camarillo said that Caley takes her treatments obediently.
“Caley doesn’t fight meds, and she doesn’t fight treatments,” she said. “She’s an amazing, gifted child. She’s amazing for accepting it. Since she accepts it, it is easier for us to accept it.”
On this particular afternoon, Caley sat on the couch, and swung her feet. She held the mask up to her face, while the nebulizer emitted a steady hum. The TV is on, and her eyes looked over the mask covering her nose and mouth at a cartoon on the television.
After Caley is done with each breathing treatment, it’s time for chest percussion therapy, where Teresa Camarillo uses two soft-plastic cups to pound points along her daughter’s back, sides and chest to further loosen mucus. Caley and her family like to call the treatments CPTs for fun.
Caley walked over to her mother and lay with her stomach across her mother’s knees, just as her younger sister Carly Camarillo ran into the living room. Carly Camarillo is dressed just like her sister, in khaki-colored capri-pants, and neatly combed hair. The two sisters and their mother are the epitome of style, all with matching pants and flip-flops.
Martin Sr. said Caley’s detailed medical schedule does not prevent the family from going on outings or having fun.
“We live the normal family life, plus treatments,” he said.
Teresa Camarillo credits much of Caley’s nine-month spell of good health to treatments consistently given on schedule. The mother of three has it down to a science.
“It’s important to make sure that scheduling her treatments don’t get out of whack,” she said.
However, Teresa Camarillo said that there are aspects of the disease that have made Caley seriously ill in the past.
“She has been that sickly child,” she said of Caley. “We’re just really lucky that the last couple of months have been going really well for her.”
Teresa Camarillo went on to point out that breathing, something most people take for granted is extremely difficult for Caley because of cystic fibrosis.
“When Caley was about two, her pulmonologist said her lungs looked like swiss cheese. Basically, she tries 10 times as hard as we do to try and breathe. It’s like asthma times 100,” Teresa Camarillo said.
Hospital Stays
It has been almost a year since Caley’s last hospital stay, a triumph for Caley and a blessing for the family, Teresa Camarillo said. Two of Caley’s five hospital visits were life-threatening.
Though Teresa Camarillo said that the first few days of Caley’s recent hospital visits are the hardest for the small child, Caley knows that being in the hospital is important to stay healthy.
“Going to the hospital makes you feel better, and taking medicine is the best because it helps me feel better too,” Caley said.
Caley also shared the hardest thing about going to the hospital, which is usually Lucile Packard Children’s Hospital in Palo Alto.
“What’s sad is going away from home,” she said simply.
Teresa Camarillo said once Caley is admitted to the hospital, a intravenous line is usually hooked up to a main vein in an artery above her heart, supplying antibiotics to fight off infections. It is hard for Caley, because her parents can not be in the room with her during the half-hour procedure. She wakes up confused and crying especially since she and her husband are not there, Teresa said.
“Caley wakes up screaming and crying. She is upset and angry. The first couple of days at the hospital we usually spend just calming her down,” Teresa Camarillo said.
A couple of days later however, Caley is charming her visitors, doctors and nurses. Instead of the standard hospital gown, Teresa said Caley, the little fashionista, loves to wear her own clothes.
“After she comes out of her shell and the meds kick in, she’s completely normal at the hospital,” Teresa Camarillo said.
For her cooperation, Caley gets special rewards. Last time, she got a pink CD player that plays her favorite Disney songs.
In spite of Caley’s struggle, her father thinks the world of his little girl.
“Caley is perfect to us. It’s just medically she is sick,” he said.
Not forgetting his son and other daughter, Caley’s dad is quick to convey how much he loves all of his children.
“I am the father of three perfect kids,” he said. “I try and treat them the same, it’s just that Caley has treatments. When people at work see our family picture, or people see us on the street, they tell me how beautiful my family is. They wouldn’t believe Caley is sick.”
Caley: Just like a normal kid
Her pink shirt flowing in the wind, Caley scampered around the backyard as she chased her 8-year-old brother Martin riding a scooter.
“Try to catch me Carly!” Caley yelled as her 2-year-old sister in a matching pink shirt and toddled after them. Bored with her older brother and sister, Carly bent her knees, shut her eyes and jumped a short distance off the family deck to the grass instead.
There, in the bright afternoon sun, behind the Camarillo house just off Santa Teresa Boulevard, Caley exhibits no visible symptoms of cystic fibrosis. Granted, her mother said she might tire easier than other children, but more often than not, Caley participates in normal activities like jumping, dancing and singing. Caley even goes to gymnastics classes.
Caley does fine in her gymnastics classes and is not singled out or treated special for cystic fibrosis unless she begins to cough a lot, Teresa said.
“Caley is not shunned, and the other girls are nice, sometimes even asking her for a drink of water if she coughs. The coaches don’t make a big deal of it,” Teresa Camarillo said.
family, love and sacrifice
Mother and father are hip, young parents. They watch MTV. They met and fell in love as teenagers at Gilroy High School in the ’90s. It is this love, they both said, that allows them to endure the ups and downs of regular life on top of Caley’s diagnosis.
“A lot of it has to do with me and my husband. We’re the best of friends and Caley is such a wonderful child,” Teresa Camarillo said.
Martin Sr. works at Custom Chrome, a motorcycle parts-distribution company in Morgan Hill. It is apparent by the muscular arms coming out of his sleeveless shirt that he keeps in shape. He is greeted with an excited chorus of “Daddy! Daddy!” whenever he walks through the front door.
Wearing a fitted red shirt, capri jeans, silver earrings and cork-wedge shoes, Teresa Camarillo hardly looks like the caretaker of a child with a demanding illness. She gives her daughters manicures and pedicures. She dresses her girls fashionably, complete with pretty hair-dos. She works at the Party Outlet in Morgan Hill when she has time, which isn’t often given Caley’s schedule.
Teresa Camarillo repeatedly has said that she would not know what to do without her husband, particularly during the time that they learned of Caley’s cystic fibrosis diagnosis. Caley was a newborn infant at the time. To complicate matters, Teresa’s mother died of a brain aneurysm in February 2002, a little more than a month after Caley was diagnosed.
“My mom and I were so close,” Teresa Camarillo said while her husband reached over and took her hand. “We had a wonderful relationship.”
Even given Caley’s diagnosis, Teresa knew that the love and strength she shared with her husband would get them through their baby daughter’s illness together.
“I took it pretty well. I was saddened to know, but I didn’t break down to the point that my daughter couldn’t depend on me,” Teresa Camarillo said.
Teresa adopted a no-nonsense attitude to the regime she and her husband had to learn in order to care for their daughter.
“When I found out, I wasn’t overwhelmed,” she said. “I thought to myself it’s time to get a pen, and document her medical needs.”
As it turns out, both Teresa and Martin Sr. were no strangers to cystic fibrosis. Teresa’s first cousin was diagnosed with the disease when Teresa was in high school.
“I knew of it, I knew my aunt had a hard time with it. I knew the basics, and that it was very hard,” Teresa Camarillo said.
Then, a surprise came for the Camarillos a year later in the summer of 2003. Although she was on birth control, Teresa Camarillo became pregnant again with daughter Carly.
Though people close to the Camarillos suggested the idea of abortion given Caley’s situation and the genetic nature of cystic fibrosis, Teresa said terminating the pregnancy was never an option for her or her husband.
“If the baby had cystic fibrosis, then so be it. I was ready and prepared to deal with it. It would hot have been an issue, if God placed it in our hands.” Neither Carly, the youngest of the Camarillo children, or Martin Jr. have the disease.
Presently, Martin Sr. said he and his wife help each other by working as a team with Caley’s treatments and hospital stays. Though Teresa Camarillo made it clear that her family is financially fine now, hard times did fall on the Camarillos in 2005 when the family had to declare bankruptcy.
“It was really our last resort. We tried everything,” Teresa Camarillo said.
Now however, Teresa Camarillo said their financial picture is much better and that Caley’s health has improved, allowing her to work more hours at her job.
“My kids are clothed, there’s food in my fridge,” Teresa Camarillo said of her family life today. “We don’t have extra money to do a lot of things, but things are taken care of.”
No matter what happens, Martin Sr. said he and Teresa know that their children are number one in their lives.
“Some people have different priorities, and they don’t find time for their kids. Our time is our kids.”
Martin Sr. also added that family time is essential to making sure things run smoothly in the Camarillo household.
“Sometimes people come home from work, and look at family life as a chore, but we don’t,” Martin Sr. said as his wife nodded in agreement. “We make it work, rearrange our schedule and we sacrifice.”
Caley’s future
Teresa Camarillo is working extra days to make sure that Caley can spend her birthday in Disneyland when she turns five this December.
“Caley was sick on part of her (recent) trip to Disneyland, so I’m gonna make it happen for her birthday, even if it means I have to work my butt off,” Teresa Camarillo laughed.
In the Spring of 2007, Teresa Camarillo said she and Martin Sr. are planning on enrolling Caley in preschool. She noted it will be a challenge with Caley’s treatments, but she said that Caley would receive breathing treatments before and after school.
“I’m concerned about everything, like when kids wipe their noses and touch the pencil sharpener,” Teresa Camarillo said of the possible germs that could infect her daughter. “But Caley knows to wash her hands often and uses hand sanitizer. Her brother and sister know to use it to.”
As for the long term future, Teresa Camarillo said the life expectancy for people diagnosed with cystic fibrosis is about 30 years old.
“Yes, it is a disease. Yes, it is terminal. But I do not believe that cystic fibrosis is the end of her life. As a mom, I can’t allow myself to believe that. I refuse to believe it. I can’t think it’s my last day with her.”
Martin Sr. said that he and his wife want Caley to have the fullest life possible in spite of her illness.
“We are showing her the most normal life that we can,” he said. “We don’t let the disease control us, we control the disease.”
Cystic fibrosis, a typical day:
– Upon waking up: two liquid medications
– With breakfast: one acid reflux pill
– 9am: First breathing treatment. Caley breathes two aerosol medicines through one mask for 20 mins., and one percussion therapy where someone pounds her chest, back and sides to further loosen mucus in her lungs.
– 1pm: two liquid medications and a second breathing treatment.
– 5pm: two liquid medications and a third breathing treatment.
– 9pm: one liquid medication, two multi-vitamins, and a fourth treatment.
This last treatment is also followed by chest percussion therapy.
– Other medications: one nostril spray in each nostril daily, an inhaler as needed and about 30 enzymes for food digestion, depending on the amount of food and drink Caley consumes. She also drinks about four or five fortified drinks for children with special dietary needs.
– Monday/Wednesday/Friday: In addition to the treatments above, on these days, Caley takes a liquid antibiotic and additional vitamin to prevent blood clotting.
Rachelle Gines is an intern attending San Francisco State University. Reach her at ra**********@*****il.com.
