Every day, 5-year-old Caley Camarillo amazes her parents. She
delights them when she sings, and inspires them when she laughs.
Caley, they said, is a fighter even in spite of the cystic fibrosis
that has devastated her body since she was born.
Gilroy – Every day, 5-year-old Caley Camarillo amazes her parents. She delights them when she sings, and inspires them when she laughs. Caley, they said, is a fighter even in spite of the cystic fibrosis that has devastated her body since she was born.
But as each day passes, Teresa and Martin Camarillo Sr. have struggled to accept the shocking and sudden truth that the cystic fibrosis attacking Caley’s little lungs has brought the necessity of a life-saving, lung transplant years closer than both of them imagined.
“In my mind, a lung transplant wasn’t even in her near future, not when she was a child. I thought maybe in her late teens or early 20s,” Teresa Camarillo, 30, said.
The truth about Caley’s condition came during a CT scan during her last hospitalization earlier this year. Teresa Camarillo said Caley’s doctors were just as shocked as she and her husband.
“Both of her lungs are severely damaged,” she said. “She has very few airways left.”
That means that Caley may need a lung transplant in as little as three to five years, when she would be about 8 to 10 years old.
“Now, we embrace Caley a lot more, if that’s possible,” Teresa Camarillo said. “We look at her in awe in every quiet moment of her life.”
Cystic fibrosis is a fatal, chronic disease affecting the respiratory system and digestive track, in which thick, sticky mucus creates a buildup in the lungs making it hard for Caley to breathe. There is no cure for the genetic disease, and managing the illness involves a series of daily breathing treatments, along with numerous medications and hospital visits.
Although Caley was well when she first left the hospital at the end of January, Teresa said Caley hasn’t been feeling so well lately.
“I’d say 80 percent of the time she feels horrible. She does have her good days though,” Teresa Camarillo said. “She knows eventually she has to go back to the hospital. She’s ready. She’s knows she’s going there to be fixed.”
Neither Caley, her 9-year-old brother Martin Jr., or her 3-year-old sister Carly, know of her situation. They do know that Caley is sick, but none of them know what a lung transplant is. Teresa said she and Martin Sr., 31, have no plans to tell Caley or her siblings anytime soon.
“I’m not going to tell her until it’s time. There’s not any reason. A 5-year-old won’t understand. In 5-year-old words we would say the doctors will fix you,” Teresa Camarillo said. At this time, Caley appears to look well, and is behaving much like any 5-year-old.
Though Caley’s siblings don’t know how sick she is, Teresa said Martin Jr. and Carly show her how much they care for her in their own ways.
“The children have the utmost compassion for her,” Teresa Camarillo said.
In order to slow the progression of Caley’s cystic fibrosis, and delay the necessity of a lung transplant, Teresa said the doctors have increased the number of Caley’s 20- to 60-minute breathing treatments from three to four times daily, added more medication and antibiotics and scheduled hospital stays every six months.
Caley also will begin using an Intrapulmonary Percussive Ventilator. The IPV machine delivers moist, mini-bursts of air that remove mucus from the lungs, administers medications and circulates air throughout airways at the same time, said Kristin Shelton of the Lucile Packard Children’s Hospital at Stanford.
Shelton, the respiratory therapy coordinator for cystic fibrosis at the hospital, emphasized that the removal of mucus is particularly important for patients with cystic fibrosis to prevent infections that cause further lung damage. She explained that the IPV uses a mouthpiece or mask that generally covers both the mouth and the nose to push air into the lungs.
Teresa Camarillo is determined to follow her daughter’s new treatment schedule to help slow the progression of the disease, but she expressed frustration because she said she ultimately knows that her daughter will eventually need a lung transplant.
“Even if we keep up the new regimen, nothing’s guaranteed. We won’t know if the aggressive treatment is working for six months, and we won’t know how her lungs are doing until her next CT scan,” Teresa Camarillo said, explaining that Caley’s CT scans are scheduled once every two years to keep her exposure to radiation low.
Since the aggressive treatment and new medications began, Teresa Camarillo said Caley has acted differently.
“She gets emotional about everything. It might be about her grandma, or a toy she can’t find. She wasn’t like that before. She’s different with the new medications,” the girl’s mother said.
Some patients with cystic fibrosis who receive lung transplants do not have to continue breathing treatments, Teresa Camarillo said, noting that it would be ideal for Caley. However, she added that most patients also become diabetic after the transplant.
“In theory it’s supposed to improve the quality of her life. She won’t have to go through breathing treatments. But you nix the breathing treatments and inject insulin instead,” Teresa Camarillo said with a sigh.
As her daughter’s disease has progressed, Teresa Camarillo said her family remains strong by maintaining a positive attitude. But now, given her daughter’s condition, she admitted the family’s battle has become harder and harder.
“Never once did we say we couldn’t do it, but we downplay it so much. Everything has been so positive. We act like everything is hunky-dory. It is and it isn’t,” Teresa Camarillo said.
Teresa Camarillo said her husband helps her see things in better light when she worries about their daughter, but that she still can’t shake her feelings of sadness sometimes.
“My husband, he’s great. He tells me not to think about it ‘like that.’ But going through it for me, it’s like looking at a dark light, a negative vision.”
Although both husband and wife said they rely on each other, Teresa Camarillo said their faith is another source of strength.
“Besides each other, we put our life in God’s hands. We pray every day, to help Caley, to help us. Sometimes, I ask my mom to watch over her,” Teresa Camarillo said of her mother who died in 2002.
For now, Caley has big plans for kindergarten. Perched on the couch in the family living room, she told her mom that she wants to have a slumber party and that she plans to walk home from school with her big brother Martin Jr.
But then she stopped talking, cocked her head to the side and thought for a moment.
“I will miss mommy and daddy because I want to stay with them,” Caley said of going away to Luigi Aprea Elementary School this coming August.
Martin Camarillo Sr. smiled at his wife. She also smiled, but kept looking at Caley.
But Caley was not finished listing her plans. As for the future, Caley said she wants to be a lot of things, but one thing in particular.
“I want to be a doctor,” she said as her father smiled. “I want to make people better.”
In spite of the fact that he will miss his daughter, Martin Camarillo said he is excited for Caley’s new adventures as she enters school.
“What she knows is hospital and home care. I’m really excited for Caley to make friends because she such a friendly and caring person,” he said while 3-year-old Carly climbed onto his lap.
Teresa Camarillo said the support the family has received from the Gilroy community is incredible.
“We’ve had a lot of support from Luigi Aprea parents,” Teresa Camarillo, who accepted ready-made dinners from a group of mothers because they insisted, said. “You wouldn’t believe how many offers I’ve had to clean my house, make dinner and grocery shop,
The support was welcome, given Teresa Camarillo’s 11-year-old cousin Jennifer Hoyland, who was also diagnosed with cystic fibrosis and also received a lung transplant, died in late 2006. Hoyland previously lived in San Martin.
“Jennifer’s life makes every day that much more special, and our whole family is thankful and grateful for each day we have,” Teresa Camarillo said.
She said she often thinks of her cousin, and spent time with Hoyland in the weeks before she died. She said it was very hard to see what happened to her cousin because her daughter is battling the same illness.
“Sometimes when I pray, I ask Jennifer to guide Caley,” Teresa Camarillo said.
Rachelle Gines is an intern attending San Francisco State University. Reach her at ra**********@*****il.com.
