A closer look at pediatric cancers and the quest to find a cure
Written by Amber Lanier Nagle | Photography courtesy of Christy Tate; CURE Childhood Cancer
CHRISTY AND MARK TATE of Suwanee have lived through every parent’s nightmare – not once, but twice. While on a much-anticipated beach getaway to Pensacola, Fla. in April 2004, the Tates noticed their 2-year-old toddler, Olivia, tilting her head to one side and stumbling a bit while walking. Later that night, little Liv woke in a state of distress – crying, vomiting and clutching the back of her head.
“We rushed her to the emergency room,” Christy recalled. “They did a CAT scan and told us it was a brain tumor. Our world stopped at that moment. It was like the walls were closing in on us.”
Time was of the essence. The Tate’s pediatrician arranged for the family to be flown immediately from Florida to Children’s Healthcare of Atlanta (CHOA).
“Six hours after we arrived at Children’s, Liv had surgery to drain fluid off her brain,” Christy said. “Less than 24 hours after the first surgery, she had a second surgery that successfully removed the tumor. She recovered quickly, and for three years, the MRIs showed no trace of a recurrent tumor.” Until a recurrent tumor was detected in 2007, and in June of 2008, a neurosurgeon removed the growth from a maze of brain tissue. Olivia has been tumor-free since.
Just as life was feeling normal again, another nightmare ensued. On April 6, 2009 – exactly five years to the day from Liv’s diagnosis — the Tate’s older daughter, Elena, was diagnosed with leukemia.
“Elena had been complaining about back and leg pain, but we had brushed it off at first thinking she had probably injured herself on the playground,” Christy said. “But after her pain intensified, tests revealed acute lymphoblastic leukemia [ALL]. We were in disbelief. It was almost impossible to process it.”
Elena endured 28 months of aggressive treatment including blood and platelet transfusions and chemotherapy. Then less than six months after her treatment ended, she relapsed.
“Elena’s body didn’t respond to the chemo,” her mother said. “We were scared and frustrated and running out of options when we learned that Elena met the criteria to be part of a clinical trial at CHOA Egleston. The experimental treatment was very hard on her and she was in the hospital for several months, but the treatment cured Elena.”
It Takes a Village
Cancer forever changed the Tate family. Today, Elena and Olivia — now aged 15 and 13 — are both beautiful, caring, compassionate survivor sisters, but like so many children who’ve defeated pediatric cancer, they deal daily with the long-term side effects of their treatments. And, the entire family has become tireless advocates and spokespeople for CURE Childhood Cancer, a nonprofit organization based in Atlanta that helped provide funding for the clinical trial that saved Elena’s life.
“Just as other CURE parents helped us, we help other families now,” Christy remarked. “There are few words to comfort a family dealing with pediatric cancer, but we encourage others to accept help when it is offered; be hopeful; never stop fighting; ask lots of questions; and most of all, make the conscious effort to choose joy every day.”
Wondering how to help a family dealing with childhood cancer? It all starts with saying something. Don’t be silent! Instead, take the time to make a phone call, send a text, shoot an email to the family or send a card in the mail with a thoughtful message such as, “You guys are always in our thoughts and prayers,” or “Just wanted you to know how much we care.”
A kind gesture, such as offering to make and deliver dinner to the family on a particular night, is another suggestion. If there are other children in the family, offer to take them to and pick them up from school for a week or two. Do the family’s lawn maintenance for a month. Make a whimsical blanket or pillow for the child. Raise money to help fight cancer and fund research. And because dealing with a child with cancer can be financially devastating to families, consider giving them gift cards for gas, groceries, fast food restaurants, coffee shops, or anything that can momentarily make life a little easier.
Last — and perhaps most importantly — be there for the long haul. Treatment can go on for months and years. While many friends circle the wagons during the initial diagnosis and early treatment period, attention often tapers with time. Continue sending notes, personally delivering warm hugs and showering them with offers to help them throughout the journey.
Taking a Closer Look
According to the American Childhood Cancer Organization, about 13,400 children (newborns to 19-year-olds) are diagnosed with cancer each year in the States. About one in every 300 boys and one in every 333 girls will develop cancer before their 20th birthday.
“Although it seems like the number of pediatric cancer cases is increasing, statistically, the incidence rate is about
the same,” noted Glen Lew, M.D., a pediatric oncologist at the Aflac Cancer and Blood Disorders Center at CHOA. “The number of children has increased, and so the number of children diagnosed with cancer has increased.”
According to Lew, the types of cancers that occur most often in children are quite different from cancers affecting adults. Childhood cancers are usually lumped into three main categories: leukemia and lymphomas, brain tumors and other solid tumors. Of these, leukemias – cancers of the blood and bone marrow – are the most common and account for about 31 percent of all childhood cancers. Brain and central nervous system cancers are the second most common cancer in children, making up about 21 percent.
“No one knows what causes childhood cancer,” Lew said. “Research suggests that there are multiple factors that
contribute to the disease, and there seems to be a small genetic component that makes some children more likely to develop cancer than others.”
There are some silver linings to the dark clouds of pediatric cancer. Although cancer kills more children in the United States than any other disease, the mortality rate has declined. The five-year survival rate for all childhood cancers combined has increased from 50 percent to 86 percent over the last four decades thanks to
better treatments, strong participation in clinical trials and the sharing of information between children’s hospitals and researchers.
“The physical cure is not easy. There are many hurdles,” Lew said. “We typically treat these cancers with chemotherapy, radiation and surgery. Getting through the complications and side effects of these
treatments is very challenging.”
“Kids are tougher than adults,” he added. “They tend to heal very well both physically and mentally. They maintain a positive outlook – perhaps their innocence protects them. Most children actually enjoy coming to the clinic because everyone is friendly, they can play video games or make crafts.”
He describes what he calls a “psychosocial support team” that reaches out to children and families during their journeys.
“Our team of psychologists, social workers and chaplains are also available to patients and families. Cancer is not just a medical challenge – it is a mental challenge, as well. It often challenges a person’s faith.”
Organizations like CURE understand this well. They offer their support to every family dealing with pediatric cancer.
“We try to connect with families at the time of the diagnosis and let them know that they aren’t alone,” remarked Kristin Connor, who is not only the executive director at CURE, but the mother of a child who battled cancer in 2001. “Nurses give families CURE totes full of useful items like resource booklets and tips from other parents. We connect families with volunteers who’ve been through the same ordeal. Our volunteer families understand and can help new patients and their families navigate through the process and manage the emotional ups and downs.”
Connor said that the support structure is in place, but there are some deficiencies that need to be corrected. “There’s a dramatic lack of funding for pediatric cancer research,” she said. “So little of the national cancer research budget targets childhood cancer. It comes down to private philanthropy.”
“We need to invest more and find a cure, and that’s part of our mission,” she continued. “We believe that we can find a cure for this disease in our lifetime, but we have to direct more funds toward research, studies and clinical trials. A cure is within our grasp.”
FOR MORE INFORMATION:
CURE Childhood Cancer
1117 Perimeter Center West, Suite N-402
Atlanta, GA 30338