If it wasn’t for the machines, tubes, IVs and the hospital bed 12-year-old Caley Camarillo of Gilroy remains in most of the day, it’s hard to tell she’s fighting for her life given the smile plastered on her face.
For 21 hours of the day, the sixth grader at Ascension Solorsano Middle School is hooked up to ventilators and oxygen machines laboring over her every breath at Lucile Packard Children’s Hospital in Palo Alto. Caley has been hospitalized since Feb. 18, and her mother Teresa calls the couch next to her daughter her “home away from home.”
Caley was diagnosed with an often deadly genetic disorder called cystic fibrosis before her first birthday. The disorder has since filled her lungs with fluid, which affects other organs from her digestive tract to her liver.
Caley’s doctors are certain she would not survive a lung transplant surgery – even if she made it onto the lengthy list of transplant candidates.
In the meantime, Caley says she has one wish while wearing a hand-painted shirt reading “Ellen” Monday afternoon: She wants to sit next to her mom in the audience of a taping of her favorite show, Ellen DeGeneres’ “Ellen Show.”
But there’s a problem: Audience members have to be 14-years-old to sit in the audience – and Caley’s not sure she can wait that long.
“I don’t know if I’ll make it to 14,” she said.
Teresa says her daughter isn’t asking for “anything incredible” like meeting Ellen or being featured on the show.
“She just wants to enjoy that experience,” Teresa said, explaining that she’s been in the audience herself and promised Caley she’d take her along when she turned 14. “She enjoys watching it on TV so I know she would enjoy it if she was there. It’s something we’d share together.”
There’s something inexplicably magical about the “Ellen Show” for Caley. Watching each one-hour episode from her hospital bed alongside her mom every weekday afternoon at 4 p.m. provides Caley a respite from the suffering caused by her condition.
“For some reason, whenever I watch Ellen it’s the only time I can laugh and not start coughing,” Caley said, sitting on a hospital bed with a zebra print pillow propping her up. “It’s like my freedom from (cystic fibrosis). I stop coughing for that whole hour. It’s almost like I was sick for the whole day and I just got better.”
Having cystic fibrosis is like breathing through a straw during each breath, Caley explained. Her parents encourage Caley’s brother and to try it for 60 seconds. Once they’re done, they feel relieved. But as Teresa often reminds Caley’s siblings, Caley will never feel that sense of relief.
Since September, Caley has been admitted to the hospital’s intensive care unit four separate times. Waking up is the hardest part of her routine, she explains, as she coughs for up to five hours expelling the fluid from her lungs that keeps her sick.
“I just want to get it out,” she said.
Her lungs pump oxygen ineffectively – 35 percent of what a normal person does – according to the latest test results.
When she’s not in the hospital, Caley enjoys going to school, walking her two dogs, hangs out with her siblings when her parents are out shopping, listening to Taylor Swift and writing her own creative fiction.
And while in the hospital, Caley likes to paint her nails. This week, she chose colors to match the changing seasons with of mixture of purple, blue, gold and pink, plucking the colors out of a nail polish bag containing only a fraction of her 150-color collection.
When Caley’s done – and while wearing an oxygen and pulse monitor on her finger after hours of intensive breathing treatments – she holds her hands up to Teresa.
“I’m her personal nail blower,” Teresa said, laughing.
Morgan Hill resident and past president of the San Martin Lions Club, Don van Straaten, first read about Caley in the Dispatch about Caley’s “disaster of a trip” to Disneyland through the Make-A-Wish Foundation in 2006. He and the Club have been behind the Camarillos ever since, he said.
Caley and her family received a private room at the theme park and she got to meet her favorite Disney princess and her least favorite pair at the time – two blind mice. “I was really scared of characters at that time, so they had to send the mice away,” Caley said, grinning.
Though she was only four, she’ll never forget meeting Cinderella. Caley remembers being so nervous meeting her she started coughing. And when she starts coughing, she was afraid of coughing in Cinderella’s face.
“I was really tired, I was coughing and I didn’t really want to do anything,” Caley said. “We also had tickets to go to Knott’s Berry Farm but I didn’t get to do that either because I got sick. I didn’t really get to finish my Make-A-Wish.”
That’s when van Straaten and the Lions Club stepped in and sent Caley back to Disneyland, with all expenses totaling $2,500 paid by the group.
Now, van Straaten is hoping DeGeneres will hear Caley’s plea.
“I think it would mean the world to her to be in the audience,” van Stratten said.
Teresa prays the video, which was posted to YouTube Feb. 26, will go viral and someone associated with the show will come across it on Twitter.
“It’s a shot in the dark and I have my fingers crossed but we’re not going to lose anything by trying,” she said. “If that’s something she’s going to look forward to, that’s all I care about. The process and the support she feels from people tweeting it out makes her feel special – and even if it never happens – means a lot to her and to me.”
With Caley’s cystic fibrosis moving along much quicker than she and her husband Martin would like to see, Teresa explains it’s just a “waiting game.”
“All we’re doing is waiting for the next admission. It could potentially be her last admission – we just don’t know,” she said. “I just want to do whatever she wants to do to make her life worth living.”
Caley smiles through it all, whether wearing an oxygen mask or fighting for each breath for the three hours a day she’s off the ventilators.
“We get photos from her mom when Caley is in the hospital for weeks on end – that smile is always there behind all the tubes and machinery,” van Straaten said. “She’s the most amazing sick person you’d ever meet.”
• YouTube video of Caley’s plea: http://t.co/5ZX8xNhGZc
• Caley’s web site and link to donate via PayPal: www.misscaley.com
• Caley’s Twitter handle: @MissCaley
