September is Childhood Cancer Awareness Month, when the stories and the struggles of children like 4-year-old Kennedy are shared. Her parents, Krystal and Dustin Ellis of Crawfordsville, go through Kennedy's fight with her, and want to raise awareness to help children who are doing the same.
Kennedy Ellis is four years old. She loves Strawberry Shortcake. Her favorite color is pink. And the first thing she does every morning is dance.
Kennedy has long, blonde hair that flies everywhere when she dances and glasses that, somehow, stay put.
But her bouncy hair is thinning out and her cute glasses are correcting her vision loss.
Kennedy Ellis is four years old. And she has cancer.
When she was just 19 months old, Kennedy was diagnosed with Pilomyxoid Astrocytoma, a rare disease characterized by a large, inoperable brain tumor. The cancer has affected her fine motor skills; even opening a door can be difficult for her. She goes to several appointments to help her development, including speech therapy, occupational therapy and physical therapy.
Kennedy is currently undergoing more chemotherapy. Right now, it’s doing a lot of good. This round of chemotherapy has shrunk her tumor 30 to 40 percent, which is more than ever before. However, chemotherapy is all doctors can do because Kennedy is too young for radiation.
The month of September is Childhood Cancer Awareness Month. For 30 days, attention is devoted to children — just like Kennedy — who fight every day.
Pediatric cancers only make up 1 percent of all new cancers diagnosed in the United States, according to the American Cancer Society. However, that means 1 in 285 children will be diagnosed with cancer by the time they are 20 years old.
In Indiana, the latest data comes from 2012. According to the Indiana State Cancer Registry, 378 children were diagnosed with cancer and 46 children died of cancer that year.
Death rates continue to decline, with the Indiana State Cancer Registry reporting that the five-year survival rate is now approximately 83 percent. However, childhood cancer is still the second leading cause of death for children ages 5 to 14.
The most common forms of childhood cancers are leukemia, cancers of the brain and central nervous system and lymphoma. According to the American Cancer Society, most childhood cancers do not have known or preventable causes.
Sometimes it can be hard to differentiate symptoms of childhood cancer and regular childhood illnesses. However, according to the Indiana State Department of Health, parents should notify their doctor if they see any of these signs and symptoms: unusual mass or swelling; prolonged, unexplained fever or illness, unexplained paleness or loss of energy; frequent headaches, often with vomiting; sudden tendency to bruise; sudden eye or vision changes; persistent, localized pain; excessive, rapid weight loss.
Kennedy’s mother, Krystal, and her grandmother, Dana, said they want to raise awareness because there is a major funding gap between adult and childhood cancers.
The Coalition Against Childhood Cancer reports hundreds of drugs have been developed for adult cancers but fewer than 10 have been developed specifically for childhood cancers. The organization also reported that the National Cancer Institute has a budget of $4.1 billion. However, childhood cancer will only receive $195 million of that funding, or 4 percent.
The small budget percentage might coincide with the small percentage of childhood cancer diagnoses compared to adult cancer diagnoses. However, Dana Ellis said that because children are the future, and we need to focus on giving them one.
Dana said talking about childhood cancer can be much harder than other cancers. Krystal pointed out that breast cancer awareness has the “Save the Ta-Tas,” which makes raising awareness more appealing and more fun. However, it’s much harder to talk about a sick child. It’s sad, she said, so people would rather not listen.
Though it’s almost the end of September, so the end of Childhood Cancer Awareness Month, Kennedy and other children with cancer will continue to fight. Changing how cancer research funds are allocated is a big task, but there are smaller steps that community members can do to help.
If someone is interested in giving to research, there are several organizations that allow people to give online.
To impact families directly, children like Kennedy have benefits and fundraisers throughout the year to help with their medical costs. Taking time to attend or giving donations to these families can be a tremendous help, which the Ellis family has experienced firsthand. They have felt the community come alongside their child, and they hope that other children will have that same support.
