Fundraiser tonight for child fighting rare cancer

By ERIKA I. RITCHIE 2011-08-20 18:38:27

FOOTHILL RANCH Caylee Saati, whose voice for now is silenced following aggressive surgeries and treatment to fight a malignant tumor at the base of her skull, still finds ways to communicate. The silly 2-year-old will do anything for a laugh and uses sister, Joy, 5, to help her communicate. The two have a beautiful relationship, Mom, Jamie Saati, said. "She'll make games out of everything even suctioning out her mouth and trach when she's in the hospital," said Saati, a speech pathologist. "The hospital staff would come in just to play with her and she always put on a good show and made them laugh." But laughing now is a blessing in the Saati's Irvine home. Jamie, 33, and husband Chris, 35, say their unbreakable bond, faith in God and unbelievable support from relatives, friends and community members has kept them going. On Monday a fundraiser to benefit Caylee and the Saati family will be at Peppino's Italian Family Restaurant in Foothill Ranch. The restaurant will donate 20 percent of all food and drinks to the family from proceeds throughout the day. The Independent Therapists of Orange County, colleagues of Jamie Saati, will coordinate a special evening fundraiser. Eveyone is welcome to that event which goes from 6 to 8 p.m. What the family most needs is a nurse to help out with daily care, they said. "We have been surviving off of the love and support we have consistently received from family, friends, and many people we have never met, Jamie Saati said. "We are consistently overwhelmed by and in awe of the love and support we are given day after day after day for nine months now. Our supporters have been so faithful and steadfast. They just don't quit and we are sustained by their love. We are upheld and energized by the love and prayers of so many people." The Saati's ordeal began relatively innocently. Jamie Saati, 27 weeks pregnant at that time with her third child, noticed that Caylee was more fussy then her older daughter, Joy, had been. When one day, then 20-month Caylee began to talk the toddler pointed under her ear and said "see dat owie" or "owie owie bonka my head," Jamie Saati, knew something wasn't right. A visit to an ear, nose and throat specialist revealed her adenoids were enlarged. The doctor took them out. When Caylee became listless, lost interest in playing with sister, cried for no reason and sounded like she had a constant cold, Jamie and Chris Saati's anxiety over their young daughter grew. A day after Thanksgiving when Caylee refused to move her neck, sit up and suffered from a low-grade fever, the Saati's took their daughter to the Emergency Room at Children's Hospital of Orange County. A CT scan revealed Caylee had a mass growing at the base of her skull pushing on the brain stem. Doctors said she needed immediate surgery because she was in danger of dying because of respiratory distress the tumor's pressure was causing on the brain stem. During surgery doctors found clival chordoma, a rare form
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of bone cancer in the skull and spine. "It had eaten away the bone at the base of her skull and two of the vertebra in her neck, Caylee's mother Jamie Saati said. "The tumor was the size of a lemon in my baby's neck and head. It was located near her autonomic nervous system which controls involuntary actions, such as breathing, heart rate, digestion." For the next 13 days, Caylee underwent six surgeries. She had a tracheotomy, where a feeding tube is placed in the belly. She was sedated for days, on a ventilator, had blood transfusions, developed a stage two ulcer wound on the back of her head, went through withdrawal from the narcotics and woke up to find she couldn't eat, talk or play. She underwent eight weeks of daily radiation and developed pneumonia. For four months Caylee has been out of the hospital. She still goes to daily appointments for swallowing therapy and to see specialists. She struggles with nausea and vomiting every day. Every six weeks she has an MRI to monitor additional suspicious masses. Despite it all, Caylee stays resilient and keeps bouncing back each day, Jamie Saati said. For months unable to sit up, Caylee now runs and dances again. She's strong-willed, playful and determined. "When I put Caylee down to bed, I hook her up to all of her medical equipment and rub her to sleep," Jamie Saati said. "She likes to sleep in just a diaper. As I rub her I am reminded what an over-comer she is. Her small body is covered in scars. There are eight of them. There is one scar that I long to see, that I beg God for. That is the scar that I want to feel on her neck once her trach is removed and we can hear her voice once again. Her big sister and baby brother want to hear her. I know she has so much to say." To help the Saati's: An account "For the benefit of Caylee Saati" has been set up at Farmer's and Merchants Bank, 31873 Del Obispo San Juan Capistrano, CA 92675. Peppino's Family Restaurant is at 26612 Towne Centre Drive in Foothill Ranch. Information: 949-951-1210

Contact the writer: 949-454-7307 or eritchie@ocregister.com or twitter.com/lagunaini

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