By VICKI BROWN
September is Childhood Cancer Awareness Month. It’s a time to remember children with cancer and donate to that worthy cause, and there is not better cause than Courageous Kidz.
The organization provides year-round experiences, trips, and events for children with cancer and the families who support them. There are barbeques, water sports, paint ball, tea parties, trips, special events and celebrations.
According to the founder of Courageous Kidz, Deborah Stephenson, when a child has cancer, the entire family is affected. “Everything that is normal in your family is turned upside down and wrong side out when a child has cancer,” said Stephenson, known as “Flash” by the Courageous Kidz family. “Financially, it is devastating…a parent is at the hospital most of the time, and this might mean a loss of income. Siblings are afraid of what is happening. Normal is no longer normal and everything is in disarray. There is constant worry; siblings worry that they or their parents will get cancer, too. Parents worry that they can’t pay bills and get groceries. Everyone worries the cancer will come back again; it is a lifetime concern. “Just imagine yourself in that position,” Stephenson added.
According to statistics from CureSearch, a pediatric cancer research foundation, approximately 17,000 children are diagnosed with cancer every year, and of those children, one in ten will not survive, despite treatment.
Sarah Cole Hardy of Walterboro is one of those children who was diagnosed with cancer who has survived, but the cancer left life-long effects.
Born on April 13th, 2011, to Cassy and Eric Hardy, red headed and feisty Sarah Cole was born with vision problems, and at 18 months old, she began having problems eating and walking. After extensive testing and an MRI at MUSC, a very large and rare brain tumor was found.
Surgeons removed 50-60 percent of the tumor growing near the ocular nerve and pituitary gland which left her completely blind and unable to grow.
After five years of chemotherapy and lengthy stays in Florida for Proton Beam laser therapy, the tumor has seen some shrinkage. “We were told she would not live past three; she is now ten years old,” said Cassy Hardy.
While this is good news, Hardy says that the entire family needed help along the way.
“Fundraisers helped keep us going. The community has been incredible and has rallied around us. People donated to help with the expenses of living six weeks in Florida. I worked nights while my husband worked days. For almost two years I was away with Sarah. My husband and parents kept everything going at home with my older daughter and kept a routine for her because at four years old, her little world was turned upside down, too,” said Hardy.
“We love Courageous Kidz, and we appreciate all they have done for us. We didn’t even call them. They saw it on Facebook. The organization provided meal cards for us, and at Christmas they provided toys for both of my children. That organization is wonderful,” Hardy said.
“It’s hard to explain, but it is a community…a cancer community. Parents of children with cancer don’t want to burden people and not make them sad with what they struggle with. So it is important for us to have a community to be around and with other kids and families in the same situation. ‘Flash’ and her staff and volunteers are such a blessing. She could never know how vital Courageous Kidz is. We are blessed to have met her and been a part of the organization. Pound Instructor Karon Boatwright is a bright spot, too. We are grateful for her.”
Cancer research has improved dramatically in the last 30 years, going from a 10 percent survival rate, to an 85 percent survival rate. But some cancers remain lethal, and it is concerning that the number of pediatric cancers has not declined in the last two decades, according to the American Cancer Society.
According to Dr. John Creel, a local adult and pediatric physician, children diagnosed with cancer are referred to pediatric oncologists at MUSC or Roper Hospital. “Most of those specialists use multidisciplinary teams to discuss the type of cancer and treatment options, and then discuss that with patient and family to make a decision for strategies and treatment plans,” said Dr. Creel. “Generally, there are paradigms or treatment strategy trees that are followed based on labs and patient preference in regards to the type of cancer. They also consider other medical problems or co- morbidities that the patient may have as well as support systems and percentage/chance of survival.”
For further support, the American Society of Clinical Oncology (ASCO) sponsors a website, Cancer.Net, which gives detailed information about pediatric cancer, information for parents, and support.
Oncologists at ASCO say there are three major cancers that affect children. Leukemia, or Acute Lymphocytic Leukemia (ALL), is the most common type. Next, are tumors of the brain and central nervous system. Another is Lymphoma, both Hodgkin and non-Hodgkin.
For those children who are able to beat cancer and are pronounced cancer free, that doesn’t end their problems.
Long-Term Effects of Cancer Treatment
For most children with cancer, treatments work well and can potentially save their lives. But some of those treatments can have short-term and long-term side effects, or late affects, after treatment ends.
According to Cancer.Net, late effects can happen at any time and anywhere in the body. Some of those side-affects are heart and lung problems, a new cancer, memory problems, short attention spans, depression, difficulties in learning, issues with growing and hormones, and future infertility.
In Sarah, it has caused blindness. But that isn’t stopping the little girl. She is taking classes, including Pound classes and enjoying life. And her parents are doing the best they can, grateful for assistance along the way.
There are many websites that accept donations for cancer research, such as St. Jude’s, and those can be found online. Locally, individuals can donate to Relay for Life for cancer research, and Low Country Dreams Youth Hunt to make donations for kids’ events.
Closer to home, you can support Courageous Kidz on September 18th at 11:00 a.m. at the Colleton County Recreation Center in Walterboro.