“Our 3-year-old Tess started complaining that her leg was hurting. We kinda dismissed it for a while as growing pains,” says Libby, mother of now 17-year-old, cancer-free Tess. “She was a little dramatic, so it seemed to only hurt when it was bedtime or time to pick up or those kind of things. So we ignored it for a month.”
Tess complained of leg and back pain, and when her pediatrician couldn’t figure out what was wrong, she was referred to St. Jude. Tess was diagnosed with a high-risk, stage four neuroblastoma at what is now The Jim and Trudy Maloof St. Jude Midwest Affiliate Clinic in Peoria, IL. Upon her diagnosis, Tess was given a 20 to 30 percent chance of survival.
“When we got to Memphis and drove through the gates and walked in the doors, it was just kind of an immediate exhale,” Libby says. “We knew we were there, we knew we were in the best place for her and the best place because they take care of the family, not just the patient.”
“During her treatment, a new protocol was approved by the FDA for antibody therapy and her prognosis was changed to almost 70 percent,” adds Libby. With this approval, Tess underwent 18 months of intensive treatment of antibody therapy which also included stem cell transplant, chemotherapy, and radiation. “It’s so important that research never stops. For 10 years nothing had changed. And then we got in on the newest latest and greatest. She is one of the oldest living survivors of neuroblastoma, especially with the new treatment — she is the only one who had that particular treatment.”
Tess’ family is truly appreciative of the support and care they received from St. Jude. The family didn’t have to worry about the affordability of staying away from home or about the medical bills. “We didn't have to figure out long term for the tests and the things she needs now or her hearing aids,” says Libby. “It took that stress completely away and all we had to do was focus on Tess and keeping her happy and getting her healthy.
“Resilience is probably a good word because there's a lot of lows and a lot of really low lows and then a high for a cancer parent is different from a high for a regular person. That you’re not in the hospital is a high, it's a win, even if she feels yucky, you don't really do anything. Just making the best of each moment whether it was when we were together or Tess really liked to watch home movies.
“What St. Jude does by supporting us medically, financially, emotionally just really reinforces to us that we were in the right place. They weren't just treating the cancer, they were treating the entire family and like I said, taking that burden away from us.”
Tess received her final cancer treatment on July 4th, 2010. Tess and her father, Spencer, will participate in St. Jude Runs, an annual charity event on August 2nd and make the 465-mile journey from Memphis to Peoria, not for a medal or to break a record, but for hope.
“Every summer a group of approximately 100 people from Peoria and 10 to 15 from Memphis start in Memphis at the hospital and run back to Peoria so it’s 465 miles they run in a leap-frog fashion over the course of 4 days,” Libby says.
“This is the 41st year [for the St.Jude Runs], and my husband has been involved in it since 2010 so it's his 12th year. There are thousands of people working on behalf of your child to make sure they are getting the best care. Every dollar counts, someone’s dollar made a difference for our family to be whole.”
For more information, visit stjuderuns.org
For more information on St. Jude, visit stjude.org