Meet Ciara, synovial sarcoma warrior! When Ciara was just 5 years old, she suffered what doctors originally thought were growing pains just below her left knee. Doctors assured her mother, McKenzie, that Ciara would eventually outgrow them with time. However, as time went on, a bump developed, along with worsening pain. After numerous visits to the hospital, Ciara was finally given an answer: along with normal growing pains, she was diagnosed with Osgood Schlatters Disease. Between orthopedic surgeons, pediatricians, and countless emergency room personnel, everyone was certain that Ciara’s diagnosis was spot on. That was, until a few years later when she fell and experienced the most excruciating pain coming from the bump below her knee. When she told her mom that she could not feel her leg or even walk, her mother rushed her to their local emergency room with a pit in her stomach. The doctors assured Ciara and her mom that the diagnosis was still correct, but that the bump had a contusion that was causing the additional pain.
“My mom instinct kicked into full throttle mode,” shared McKenzie.
The following morning, McKenzie carried her daughter into an orthopedic surgeon’s office and demanded to be seen, even though she was not a patient of their practice. The doctor sat down with them and, to McKenzie’s surprise, listened to Ciara’s detailed history and their concerns.
McKenzie shared, “He’s the FIRST doctor to truly listen to me concerning her history.”
An MRI was ordered, but the news that Ciara was most likely suffering from Osgood Schlatter’s disease left little room for hope. That is, until the doctor reviewed the scans and agreed to perform surgery to investigate further. Her doctor found something that no one expected to find: a soft tissue mass inside her little 8-year-old leg. Three agonizing years after the pain first started, Ciara and her family finally had some answers. A week after the mass was found, an official diagnosis was given: she was diagnosed with synovial sarcoma.
Now that Ciara had answers to this once-mysterious pain, her family knew a treatment plan could finally begin. They traveled three hours from their home to meet with the closest pediatric oncologists and surgeons who specialized in treating sarcomas. Her case was especially difficult because of the location of her tumor. Since her tumor was removed by a regular orthopedic surgeon, rather than an orthopedic surgeon who specialized in oncology, cancerous cells were left behind after the tumor was removed. For a sarcoma patient, this added an extra layer of complications.
McKenzie struggled to choose the best treatment for her daughter because every doctor had a different opinion about her care. The recommendations varied, from chemotherapy and surgery, to talks of amputation.
“I pumped my mom brain with as much knowledge as possible about pediatric synovial sarcoma and specifically my daughter’s tumor behavior overnight,” said McKenzie.
After receiving multiple opinions from an array of esteemed doctors, a doctor from Houston reached out to McKenzie after learning about Ciara’s case. Dr. Chappie had extensive experience in limb salvage and treating soft tissue sarcomas in children – exactly who Ciara needed to see. Ciara and her mom endured a six-hour car ride to meet with him.
McKenzie shared, “That mom-gut feeling kicked in! I fell in love with his passion to save my child’s life. His knowledge and his game plan blew me away.”
A new treatment plan was in place and Ciara went on to have a second major surgery, known as limb salvage surgery, shortly after. Her surgeon removed the rest of the cancerous cells left behind from the first surgery and performed reconstructive surgery with a bone and tendon transplant. The next few months were especially hard on Ciara as she was wheelchair-bound while she healed. Through intensive physical therapy, she learned how to walk and eventually run with her newly-built leg.
By the age of 12, Ciara was walking, running, and playing. Ciara, her mom, and her medical team still closely monitor the areas in her leg that were cancerous when she was younger, as synovial sarcoma is tricky and often returns, and her original diagnosis was so hard to come by. She still receives frequent scans and biopsies to make sure the cancer has not come back, and as of June 2022, she is still cancer free!
McKenzie shared that she and her daughter travel about 900 miles round-trip every time they visit their beloved Dr. Chappie in Houston. Some visits last a few days, while others last up to a week. This created a huge travel expense that Ciara’s family was not prepared for, and her hospital social worker referred her to the NCCS for financial assistance to get to and from treatment.
Getting Ciara to the life-saving treatment she needed was essential, and the NCCS stepped in to help her family. They took advantage of the other services offered by the NCCS as well, not only did she receive compassionate emotional support from their NCCS case manager, but were able to benefit from our Emergency Assistance Fund to help with unforeseen expenses. Ciara received one of our free publications, the activity book “I Can Move Mountains,” and her parents received a copy of “The Other Side of the Mountain: A Parent’s Guide to Surviving Childhood Cancer.”
“In the last three years, we would not have been able to afford to travel back and forth to Houston as often as we’ve had to go without the help of the NCCS. Y’all have been an absolute blessing and truly a lifesaver for our family,” said McKenzie.
September is Childhood Cancer Awareness Month, which coincides with Ciara’s birthday. With each passing year, she gets to celebrate another birthday and remembers what it means to be a survivor of childhood cancer. She overcame so many obstacles, including missing school for treatment, being bullied because of her scars, and of course, the mental toll cancer takes on a young mind. Through it all, she has come out on the other side stronger than ever. We are so proud to have been a part of Ciara’s story and we are forever grateful to donors who helped get her to treatment.