A Gilroy family found out last week their 12-year-old daughter, who has battled cystic fibrosis since she was four weeks old, isn’t eligible for a lung transplant, and her doctors doubt she’d survive long even if she did.
Caley Camarillo’s wish of obtaining audience tickets for the “Ellen Show” is edging closer to coming true as her classmates at Ascension Solorsano Middle School send letters to Ellen DeGeneres pleading for the sixth grader to attend, but doctors said she’s in no shape to be going anywhere.
Early Wednesday morning, Camarillo landed in the intensive care unit after doctors at the Lucile Packard Children’s Hospital in Palo Alto, found blood in her lungs, likely from a pulmonary embolism, according to her mother, Teresa Camarillo.
“One moment she was a happy, smiley kid and the next she was coughing up blood,” Teresa said. “Now, we wait.”
As long as she’s kept in the hospital, Caley will likely remain confined to her room and hooked up to machines for at least 21 hours a day.
During a Friday meeting with a team of physicians, Teresa rushed out of the room after 40 minutes feeling sick, searching for the nearest trashcan. The doctors told the Camarillos that even if Caley did receive a transplant, her condition could worsen, and her life could be cut even shorter.
“We’d exchange all these issues she has now for another whole set of issues,” Teresa recalled the doctors saying.
Since Caley was admitted to the hospital Feb. 18, Teresa has stuck by her side. Now, she and her husband, Martin, have a tough choice to make: keep her in the hospital with no expected discharge date or rush off to another hospital for a chance at giving Caley a new set of lungs.
That chance remains uncertain.
“If we find someone to do a transplant, do we want it to be a definitive end to a 12-year fight since we don’t know if she’s going to make it? Are we willing to take that chance?” Teresa asked.
There’s another option the Camarillos are mulling over, however.
Teresa wonders if they should take her out of the hospital and let her live the remainder of her life at home surrounded by her parents, brother, sister and two puppies.
“Now that I’m sitting with her, I’m seeing that there is more time for her to enjoy life,” Teresa said. “I want to just whisk her away and do things with her.”
To help during this transition period, the Camarillo family has set up a website for donations. To make matters more complicated, Teresa’s mother-in-law – who serves as a caretaker of Caley’s older brother and younger sister while she’s with Caley in the hospital and since Martin has no vacation time at his job – fell down the stairs and broke her neck and shoulder.
“Hopefully, with donations, (Martin) will be able to take some time off to be there and help with her or be home with us, depending on what we decide – or uproot our family,” she said. “There are a lot of reasons we could use the financial help. We want to have Caley enjoy the quality of her life. It’s going to take my husband and I as a team to get through this.”
To donate to Caley’s fund, visit http://www.youcaring.com/medical-fundraiser/journey-to-lung-transplant/146710 or http://www.gofundme.com/7b1510
