In early 2000, Jaci was brought into this world by the loving hands of the doctors and nurses at Children’s Hospital of Illinois. She was born 11 weeks early and weighed 3 pounds. After three weeks of hospitalization, she was able to leave the wonderful Neonatal Intensive Care Unit.
Little did we know that two years later, we would be back for many more months to battle a tumor that was killing our young daughter.
What seemed like a chronic sore throat was actually a life-threatening tumor growing inside Jaci’s tiny body. She developed mentally and physically at a normal pace, but her breathing was always labored.
When Jaci was 2-1/2 years old, she had a CT scan that revealed a mass in her chest. An oncologist then referred us to Dr. Richard Pearl, director of Pediatric Trauma and surgeon-in-chief at Children’s Hospital. Dr. Pearl and Dr. Trent Proehl performed a biopsy that revealed that Jaci had a benign compression tumor known as a "neurofibroma."
Drs. Pearl and Proehl patiently answered our questions and explained the tumor malady that engulfed her lungs, trachea and heart and extended to the base of her skull. Intensivists from the Pediatric ICU, Dr. Kris Bysani and Dr. Julie Wohrley, also patiently told us about the tumor.
We were in shock. There was no family history of any type of tumor. How could we have just taken Jaci to the zoo two days prior to all of this? She was running, laughing and having a great time at her sister’s fifth birthday party.
After Jaci’s biopsy, her lung collapsed because the tumor had damaged and constricted her left mainstem bronchus, the primary airway to the lung. She was then placed on a ventilator to help her breathe.
It is impossible to describe what parents go through when their child is struggling to stay alive. There were many sleepless nights, and at times we feared answering the phone. The pain of seeing your child lying motionless, heavily sedated in a hospital bed with a breathing machine in her mouth, is almost unbearable.
The Peds ICU nurses were very informative, caring and compassionate to our family during this heart-wrenching experience. The staff from Child Life Services was also a great help. Cookie Bannon often came to sing, which gave Jaci comfort. Family and friends prayed for us daily, which strengthened us.
Tests and computer models showed that Jaci had 10 percent airflow on her left side. Dr. Pearl placed a stent in her bronchus, which inflated it close to its normal size. Without the stent, Jaci was suffocating.
Just as we thought the worst was over, Jaci went into a coma-like state for three days. Though her eyes were open, she was non-responsive with uncontrolled drooling. At this point, we were terrified. Does she now have brain damage? Will she ever come out of this state?
Dr. Blas Zelaya, a neurologist, ordered an MRI of the brain, which revealed that her brain functions were OK. Jaci was actually suffering from drug withdrawal, which lasted about three weeks. Drug withdrawals are a terrible experience. Jaci’s delirium changed to agitation and paranoia. After being home for three weeks and after being put on a withdrawal management regimen, she slowly recovered from the withdrawals.
Three weeks later, on Sept. 20, 2002, we brought Jaci back for a 9-1/2 hour surgery to remove the tumor. The excellent surgeons who performed the surgery, Dr. Pearl and Dr. Dale Geiss, cardiovascular surgeon, had someone update us every couple of hours while Jaci was in surgery. Finally, Dr. Pearl appeared and said, "The surgery went as well as could be expected."
We felt a tremendous amount of gratitude for Dr. Pearl and Dr. Geiss. They literally saved Jaci’s life.
Although the tumor was removed successfully, there are still many risks involved with this disease. The tumor had damaged Jaci’s trachea (windpipe), which made it difficulty for Jaci to swallow properly. Her vocal cords were also paralyzed, so she was unable to speak, which was very frustrating and frightening for her.
Because of these problems, it was necessary for Jaci to have a tracheostomy (a tube in her throat), which was done by Dr. Ravindra Vegunta. He also placed a gastrostomy tube in her stomach, enabling her to receive her diet via tube feedings.
After many weeks in the Peds ICU, Jaci was transferred to the Peds Intermediate Unit, where the nurses and techs also took outstanding care of her.
The hospital has a Home Ventilation Program that helps train parents to take children home with trachs. Dr. Bysani, Colleen McElroy and Tracy Doty are a great team who are helping prepare us to go home with Jaci. Jaci will require private duty nursing at night in her room, which was converted into a mini-ICU.
One of the best days of our lives was when Jaci said the word, "two." We were not sure if she would ever talk again, since her vocal cords were paralyzed, so we were elated when she said just one word. At least it gives us hope on that front.
Jaci has spent more than 100 days in the hospital, and has had a total of eight surgeries over this period. She continues to be our "miracle," and we know that she would not be here if not for the efforts of everyone who contributed so admirably to the treatment of this horrible disease.
Although we spent Thanksgiving Day 2002 in the hospital, we knew we had many blessings to be thankful for: family and friends who supported us and prayed for us; the remarkable nurses and techs from the NICU, PICU and PIC; the intensivists – Dr. Bysani, Dr. Whorley, Dr. Joel Manaligod and Dr. Al Torres; the surgeons – Dr. Pearl, Dr. Vegunta, Dr. Proehl and Dr. Geiss; resident physicians; dietitians; physical therapists; Dr. Zelaya and his colleagues; Dr. Barry Gray, infectious disease specialist; nurse practitioners; social workers; anesthesiologists; respiratory therapists; occupational therapists; speech therapists; Cookie; Child Life Services; unit clerks; volunteers; housekeepers; parents of other patients; the Children’s Miracle Network (that provided daily meals for us and donated toys for the playroom that Jaci loved); the Home Vent team; case managers; X-ray techs; Family House; and Security, who drove us to and from Family House at any hour of the day.
There are far too many people to mention by name, but we hope that all who cared for Jaci know how much we appreciate them and their kindness. Hopefully, the above-mentioned people will always remember that each one of them made a difference. It definitely took a whole team to help bring Jaci home.
We are looking forward to taking Jaci to the zoo again. She is still the same spunky 2-year-old (when she is feeling well) who will continue to fight her own battles. For now, Jaci struggles with speaking, eating and drinking, but hopefully she will continue to improve one day at a time.
Rob and Kira