September 1, 2022
Perspective on Childhood Cancer
Editor’s Note: September is Childhood Cancer Awareness Month, and SMA's Jennifer Price had the opportunity to speak with one mother who is honoring her daughter’s life and legacy by giving back and raising awareness about pediatric cancer.
How It Began
When her daughter Elaine was diagnosed with metastatic alveolar rhabdomyosarcoma, Laura Roberts found herself in a position parents neither envy nor envision. “Cancer was the furthest thing from my mind,” Laura recalls. “I told Elaine, ‘This will be a year out of your life and then you will be as good as new.’” Laura chronicled Elaine’s journey that began in fall 2014 after the 15-year-old, fun-loving teenager and member of the Thompson High School (Alabaster, AL) Tennis Team complained of foot pain. When the first X-rays came back negative, a diagnosis of tendonitis was given and Elaine, feeling better, played through the spring 2015 tennis season. The pain returned, during which time more negative X-rays led to an MRI and the diagnosis of rhabdomyosarcoma in May 2015.
In the days following the diagnosis, the family researched hospitals that could best treat Elaine. “We had Children’s of Alabama and UAB (University of Alabama at Birmingham) close by, but we also consulted MD Anderson in Houston, and Children’s Hospital in Boston,” Laura said. Upon learning that Children’s of Alabama utilized the same protocols of chemotherapy and radiation as those in Houston and Boston, the decision was made to stay close to home. “It’s what Elaine wanted and we had our family and friends, our support here,” she added. “That made it much easier.” And so did Elaine’s medical team at Children’s. “The love and compassion these doctors, nurses, and staff showed her were wonderful,” Laura said. “They loved her.”
Finding Comfort in Faith, Family, and Friends
Throughout Elaine’s treatment, which initially yielded encouraging results, Laura, who purposely chose not to consult “Dr. Google” regarding statistics and prognoses, always maintained her strong composure for Elaine. “Her attitude was paramount,” she said. “I was the cheerleader, plus I kept her focused on school work and other future things like when she was going to return to tennis. I kept her mind on getting well.”
When anxiety and doubt would cloud Laura’s mind, she made sure to take some time for herself. “If I cried, it was normally in the shower. If Elaine viewed me as doubting that she would make a full recovery then she might [have the same doubts],” Laura recalled. “If I felt anxious I would sometimes go outside with the dogs and call a family member or a friend to vent. I had to be talked off the ledge a couple of times, and I ate a lot of Cheetos!” Even with some old-fashioned comfort food, Laura found her greatest solace in God. “The main thing I did when I felt very anxious was go to my Bible,” she said. “He will and did provide a peace that passes all understanding.” It is this serenity that allowed Laura to be calmer and to continue in a productive way that was helpful to Elaine. “She wanted me 90% of the time and I had to be strong and able to be there for her,” Laura said. “Jesus was the best decompressor I had.”
As Laura took care of Elaine, family and friends rallied around them, never leaving their side. “God truly provided for us with a spectacular support system,” Laura said. “It’s pretty amazing how people from all seasons of my life came to our aid to help us in any and every way they could.” These included her family who “was right in the trenches with me the entire time”; her “incredibly supportive” boss, colleagues, and owner of the company; her church family; and the Thompson Tennis Team, coaches, and parents. Laura’s Auburn University sorority sisters also stepped in, making sure that when Elaine was placed in hospice care, they were there to help by sitting with her and pushing the pain pump button at the appropriate time throughout the night, which allowed Elaine to sleep pain free and Laura to get some much needed rest. “They did something for me that I can never repay,” Laura shared. “Without them, I never would have made it through.” Laura also found strength through the kindness of strangers via Elaine’s CaringBridge website. “People who read our updates were encouraging, and some of these people I didn’t even know,” Laura recalled. “There were people all over Alabama and the entire country praying for us.”
Unfortunately, by January 2016, Elaine’s treatment protocol was no longer effective and the cancer was spreading. Because she was now only 16 years old, she wasn’t eligible for adult clinical trials. “There were no trials going on that Elaine could participate in and the chemo drugs she had been taking were developed decades ago. We really didn’t have anything out there to try,” said Laura. Sadly, Elaine’s battle ended February 6, 2016, six weeks after her father Brent passed away unexpectedly. But, Elaine’s story doesn’t end there…a new chapter was beginning.
A New Chapter…The Elaine Roberts Foundation
Shortly after her daughter’s passing, Laura established the Elaine Roberts Foundation with the purpose of educating people about pediatric cancer and to raise money for research to cure childhood cancers. “Elaine’s outcome is not what we wanted, but the cancer was ugly, rare, and aggressive,” she said. “We need better treatments for this particular type of cancer and other pediatric cancers. Some are very beatable, but we need all cancers to be cured.” It is the desire for no other families to suffer the loss she did, as well as a determination to fund research that will ultimately lead to a cure that drive Laura in her dedication and devotion to the Foundation. “The reality is my daughter lost her life,” she said. “But through that, I have seen how much people want to help; they may not know just how.” Through the Foundation, those wanting to help can do so by simply visiting the Foundation website and finding a way – whether through a variety of fundraising and volunteer opportunities or a monetary contribution – to “rid the world of rhabdo and ALL childhood cancers”.