Understanding Childhood Cancer
- Lilly Bumpus, the 9-year-old cancer survivor who broke the Girl Scout Cookie sales record last year, is cancer free, but she still deals with lasting side effects, such as bone deformation, from her chemotherapy treatments.
- Ewing sarcoma is a type of cancer that occurs in the bones or in the soft tissue surrounding the bones, and “lifelong monitoring” is generally recommended after treatment for the disease.
- 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 was born with Ewing sarcoma, a rare type of bone cancer often found in children and young adults. All before she turned one, she underwent intense rounds of chemotherapy and had some of her bones removed from her chest wall. Thankfully, those efforts were successful, and she’s cancer free today. And as if kicking cancer’s butt wasn’t enough, last year she sold more than 32,000 boxes of cookies despite operating in a world ensnared by the pandemic.
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“My favorite thing about Lilly is that she never gives up,” her mother, Trish Bauer, previously told SurvivorNet. “So, Lillybug got to 10,000 boxes one week into Girl Scout cookie season. Never, ever has that happened. So we went from there. I then approached Girl Scouts and said, ‘What happens now if she sells 20,000 boxes?’ And they said, ‘20,000 boxes, yeah, okay.’ So we said, ‘Game on.’ So then we sold on and sold on, and she got into 20,000 boxes.”
“And then we went to 32,000,” added Lilly.
Fast forward to today, and Lilly is trying to live life as normally as possible while still making a difference. She’s back to selling Girl Scout cookies for the season – but that doesn’t mean she can escape the realities of her past completely. In a recent post to her Instagram account, her mother gave followers a look into the lasting effects chemotherapy has had on the little girl’s body.
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“Lilly had her scans last month to check the difference in her bone growth and it’s a bit overwhelming what’s going on in her fighting body,” Bauer wrote under a sweet picture of Lilly. “About 9 months ago her leg pain was properly diagnosed as a bone growth abnormality. We thought it was just her ankles but scans showed all the way up to her pelvic bones have issues. Basically one side of her body from the waist down is growing at a different rate [than] the other side.”
Her hips and pelvis are seeing the most division, but her knees and ankles are measuring about an inch different from each other too. The growth issues are even causing pressure on her organs, but, thankfully, her mother reports they haven’t stunted her growth. Originally, the plan was to implement leg braces, but seeing as the issues go all the way up to her pelvic bones, braces wouldn’t be a viable solution. Now, the plan is to wait and potentially have surgery to implant stents into her knees that can help her bones grow better later down the road.
“Chemotherapy in infants has so many side effects for long-term survivorship, this is just one of them,” Bauer wrote. “Lilly hasn’t been complaining of pain, but as we know Lilly doesn’t complain of pain like a normal human. It takes an extreme amount of pain for her to speak up about it.
“Having this surgery on both knees would be really hard for her so I decided to wait 12 months to monitor the change and to go from there. If her pain increases or the pressure starts to make an issue that we can’t play with, then that’s one thing but for now I think giving her body time is what she needs.”
Lilly is relieved that she won’t have surgery yet, but she’s acutely aware of the lasting impact cancer treatment has had on her life. Still, her resilience has always shone through the toughest of times.
“Seeing her push past EVERY odd is what speaks what no words can say to my soul,” Bauer wrote. “Odds are simply meant to be tested and broken. My warriors tell me so.”
What Is 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.
Understanding 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. Raetz previously 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 previously wrote of her daughter. “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.
“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.”