Childhood Cancer
- Lilly Bumpus, the 8-year-old cancer survivor who broke the Girl Scout Cookie sales record, is now seven years in remission. But she is still dealing with lasting side effects, such as bone deformation, from her chemotherapy treatment.
- Lilly’s mother gave her little girl’s Instagram followers a look into what life is really like as a childhood cancer survivor by explaining that she never thought the treatment needed to save Lilly’s life would have such lasting effects.
- Childhood cancer research is lacking, but one of our experts says targeted treatments and different immunotherapies that have been studied in adults and have now moved into clinical trials for children. This means that doctors may have more treatment options for childhood cancer patients in the future.
Lilly underwent both chemotherapy and bone removal before she turned one. She’s been cancer-free, but chemotherapy has lead to abnormal bone growth for the tough little girl. In a recent post to her Instagram account, her mother, Trish Bauer, gave followers a bit more insight into what life has been like for her “everyday hero” since treatment.
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“The scans showed that her ankles, aren't the problem. It's her hips, knee and leg,” Bauer wrote. “As you can see in the scans, one leg isn't growing like the other one and it's effected alottttt. The difference between her hip bones, and the surrounding organs and bones are the most alarming.”
These bone issues have caused one of her knees to buckle inward and lead to ankle issues. To address these problems, Lilly was referred to a bone deformation specialist and will have to come in for a scan every four months. Trish also explained that when doctors tried to discuss possible treatment protocols, she simply said it was “not the time” as she pointed to her little girl.
“8 years ago today lilly was starting her last round of chemotherapy,” Bauer explained in the post. “The drug that she needed to stay alive with since she was 3 months old. I never fathomed what ‘treatment’ would do. I never knew 80% of childhood cancer survivors develop life threatening health conditions from treatment, not cancer. That the very treatment you need to save you and kill your cancer, would always be after you. Always waiting to collect a debt. I never fathomed it was all because childhood cancer is the lowest funded form of cancer research.”
Bauer is nervous for her daughter’s future, but Lilly is taking everything in stride.
“She skipped out of the hospital knowing her life outside the glass was waiting for her, and her life inside the glass will always be worth fighting for,” Trish wrote.
Understanding Ewing Sarcoma
Ewing sarcoma is a specific type of cancer that occurs in bones or in the soft tissue surrounding the bones. It is most commonly found in adolescents, but younger children, as well as adults (in their 20s and 30s) can also be diagnosed with this disease.
According to the Mayo Clinic, some signs and symptoms of Ewing sarcoma include:
- Pain, swelling or tenderness near the affected area
- Bone pain
- Unexplained tiredness
- Fever with no known cause
- Losing weight without trying
Treatment for Ewing sarcoma depends on the location of the cancer and the size of the tumor at the time of diagnosis. A doctor's treatment plan may involve a combination of chemotherapy, radiation and surgery. Sometimes the aggressive nature of these treatments can cause both short-term and long-term side effects. According to the Mayo Clinic, "lifelong monitoring is recommended" after completing treatment to watch for potential late effects of the intense treatment like Lilly is experiencing.
Childhood Cancer
Treatment advances in recent decades have lead to 84 percent of children with cancer now surviving five years or more, according to the American Cancer Society. This is up from 58 percent from the mid-1970s.
But according to the National Pediatric Cancer Foundation, more than 95% of childhood cancer survivors have significant health-related issues because of the current treatment options, and only 4 percent of the billions of dollars spent each year on cancer research and treatments are directed towards treating childhood cancer in the United States. Since 1980, fewer than 10 drugs have been developed for use in children with cancer while hundreds of drugs have been created exclusively for adults.
Dr. Elizabeth Raetz, director of pediatric hematology and oncology at NYU Langone’s Perlmutter Cancer Center, reminded us in a previous interview that there is still reason for hope.
"There are also targeted treatments and different immunotherapies that have been studied in adults and have now moved into clinical trials for children and there has been a great deal of excitement in the community about that," Dr. Elizabeth Raetz told SurvivorNet.
Still, navigating a child's cancer diagnosis can be tricky. But it is important to remember that children often possess an innate ability to see the light in the dark.
“Lilly was excited to use the new scan machine at the hospital that gives off less radiation,” Bauer wrote. “My 8 year old excited for a new scan machine. This is childhood cancer.”
Jayne Wexler can surely relate to the hardships of watching your child fight cancer. Her son battled acute lymphoblastic leukemia and now deals with heart disease as a side effect of chemotherapy. In a previous interview with SurvivorNet, Wexler explained that in addition to regular parent worries having a child with cancer means living with a whole new world of anxieties.
The Impact of a Childhood Cancer Diagnosis on the Whole Family Jayne Wexler Shares Her Story
"My husband and I will always have fear," she said. "I don't think we can ever let go of that. Just when he was OK, then he relapsed, and then he had the bone marrow transplant … so there's always some sort of worry."
Wexler admits she tries to live for each and every day, but its understandable that this does not always come easy.
"And I do try you hear people say this we do have to live each day and be thankful for what we have," Wexler said. "And it's hard to remember that when you're caught up … it's very hard to just sort of enjoy the moment, because we just don't know what's going to happen in the future."
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