Research into the power of Immune Based Therapies is making great strides in the fight against rhabdomyosarcoma.
Rhabdomyosarcoma – Karli’s Story
For Karli’s sixth birthday she celebrated with a party, tickets to The Sound of Music, and smiles. Earlier that month, Karli and her mother, Jill, father, Pat, and younger sister, Jadie, all enjoyed a memorable trip to Disney World in Florida. On September 1, just one week after her sixth birthday, Karli started kindergarten. Birthday party, summer family vacation, first day of kindergarten - all typical experiences for a child Karli's age. But Karli is not a typical child. She was one of only four in one million to be afflicted with a rare form of cancer called Rhabdomyosarcoma.
A Mother's Intuition
Karli's departure from "typical" began shortly before her fifth birthday with her diagnosis. Her family had moved into their new home in Elk River, Minnesota in mid-May that year. Shortly afterward, Karli began complaining that she felt pressure on the back of her left eye and that she felt as if she had cotton in her left ear. Her left eye was unusually sensitive to the sun, and her voice was becoming hoarse.
Suspecting environmental problems in their new home, Karli's parents sought the help of local doctors whose diagnoses ranged from a severe ear infection to mononucleosis, to displaced pain, to possibly Lyme disease. But Karli's mother, Jill, knew intuitively that something was seriously wrong.
Her fears intensified one summer evening when she was watching television. She saw a local sports anchor, Randy Shaver, sharing his experiences with cancer, describing his symptoms. When she voiced her concerns to Karli's local doctors, they dismissed them as unlikely. But when, in the course of one day late in July, the left side of Karli's face began to droop and became paralyzed, her doctors performed a CAT scan on a Friday and referred her to the University of Minnesota Amplatz Children’s Hospital for an emergency MRI the following Monday morning.
A doctor called with the news that the MRI had detected a large mass growing in Karli's left ear canal. In fact, it had perforated her eardrum leaving her deaf in that ear. A biopsy one week later confirmed that the tumor was malignant.
Karli's treatment began with a regimen of several chemotherapy and radiation sessions. For nearly a year, family life was ruled by Karli's treatment. Her treatment ended approximately one year after diagnosis. However, vigilance calls for routine follow-up care including MRI’s and a CAT scans every three months for a year.
Grateful for the Care
Pat and Jill can't say enough about the care that Karli received. "All the doctors, no matter how high in the hierarchy, spent so much time with us," Jill raves. "They treated us with respect and never made us feel stupid." Jill continues, "Karli’s primary physician was wonderful about this whole thing. All the doctors took all the time in the world with us!"
Today Karli is a beautiful, energetic, and engaging young woman. Because her tumor caused some facial paralysis, she has an asymmetric smile, but Jill hastens to add, trailing off gratefully, "But if we have her...".
These days, the family has reason to be grateful. There has been a 70 percent shrinkage of Karli's tumor, and hopes are that the remaining 30 percent is dead. Karli's partial facial paralysis, which doctors thought would be irreversible, has lessened.
They feel so thankful for the wonderful team of doctors assigned to Karli. They are also very grateful for the support of their church, co-workers, friends and family. Jill says, "We couldn't have done it without my parents," and Pat agrees.
Soon after Karli completed her treatment, Pat celebrated his birthday while on a Florida vacation with his wife and two young daughters. He joyfully recalled feeling that this was his best birthday ever! His joy resonates in Karli's smile.
It has been 11 years since Karli finished her cancer treatment. She is now a happy, healthy 16-year old. Currently, the doctors are discussing the possibility for Karli to have plastic surgery to correct the damage the cancer caused. She is very excited about this. Karli’s teachers and friends always comment about her positive attitude and her work ethic. Her parents say that she is an angel that was sent here to teach them how to live. Karli loves life and it shows. She recently got her driver's license - a brand new worry for mom and dad!
