So many of the applications we review each year for scholarship consideration contain a phrase which goes something like this: “I went in for what we thought was a routine check-up and ended up in the hospital later that night…” As we know, cancer can often lurk in the body, undetected in a seemingly healthy person. Physical warning signs or not, receiving a cancer diagnosis for a child is at the top of the list of every parent’s worst fear.
With September being Childhood Cancer Awareness Month, we spoke to a couple of parents of past scholarship winners, and share their perspective here.
Childhood Cancer: Some Facts and Figures
The term childhood cancer encompasses kids ages 14 and under, while adolescent cancer refers to the ages of 15-19, and young adult cancer covers the age group from 20-39.
The good news…
- Childhood cancer comprises less than one percent of all cancers diagnosed annually.
- Survival rates are high, and have increased substantially in the past few decades: more than 80 percent of these childhood cancer patients will survive five years and beyond.
- Cancer is the leading cause of death by disease in children, and the second largest cause of death, behind accidents.
- All forms of childhood cancers combined receive just 4% of U.S. federal research funding.
A Parent’s Perspective
A cancer diagnosis devastating at any age. But families face unique stresses, from accepting this terrifying reality, to finding the best possible care for their child, to wrestling with insurance companies, and even just trying to maintain a sense of normalcy for other siblings in the home.
“As parents, after you give birth to a healthy infant, you never think that they could get a life-threatening illness as a young child,” say Joy and Karl Anderson, parents of past scholarship recipient Gary Anderson. Gary was diagnosed with acute lymphoblastic leukemia just a couple of months shy of his third birthday. The Andersons also had a newborn baby and a six-year-old at home.
“You want them to have a normal life of participating in school and sports but worry constantly about jeopardizing their health,” they continue. “It is especially difficult to divide your time between the sick child and their siblings who don’t understand the severity of their brother’s illness.”
Laurie Purcell is the mom of Kelly, who was diagnosed with Rhabdomyosarcoma as a 14-year-old high school freshman. (You may also recognize Kelly’s name as the same young lady who shared her talents on staff with Cancer for College for three years.)
Laurie shares, “family dynamics and roles can shift drastically, causing stress. It’s important to acknowledge your strengths and use them. I kicked into methodical, organizer mode. Kevin (Kelly’s dad) was our spiritual, emotional support. Kelly’s younger sister (age 11 at the time) had to grow up quickly. She became very wise, very patient and very compassionate.”
Like many mothers in her situation, Joy did not want cancer to define Gary’s childhood. “Even with his illness, we tried to let him lead a normal life between treatments. We knew that if he did survive we didn’t want to have him deprived of any of the experiences his sisters had. So even while under treatment he went to nursery school as planned, and played soccer and baseball. Gary always had and still has a love of life and a way of making the most of his circumstances. I know there were times when he was sick to his stomach or weak but he didn’t complain. He would just drag himself out of bed to go play with a remote control car, fly a kite or play with his sisters or friends.”
The added financial stress of the diagnosis is another huge reality families must face. “Despite what you are dealing with at the hospital, you still need to pay the bills which, even with insurance, put a burden on you financially,” says Joy.
“Money stress can be so overwhelming!” Laurie shares with an honest heart. “We are so fortunate to have health insurance. But, even so, money was immediately flying out the window. Gas, hospital food, medical supplies, co-pays, parking, wigs, tutors, new bed, clothing due to weight loss, therapy and nutritional supplements, all continuing for the full year of treatment.”
Cancer for College was founded for this exact reason. Many families exhaust their financial resources, even future college and retirement savings, desperate to save their child’s life. College dreams are derailed by the diagnosis. With a scholarship, Cancer for College helps these survivors get back to the dreams they once had, and hopefully, makes funding the dream of attending college a little easier.
Recovery through Resiliency
Kids tend to be naturally resilient, and research seems to show that this plays a positive role in their recovery.
“We see them as a flourishing population that has adapted to the stress of having cancer and undergoing treatment,” said Sean Phipps, PhD, Behavior Medicine, in an article featured on StJude.org. “They become quite resilient to the long- and short-term emotional and physical effects of their disease and the treatments.”
“As a family, we put on a warrior mentality,” remembers Laurie Purcell. “We ALL fought the illness. We ALL changed our diet, routines, lifestyles. We prayed a lot. We forcefully visualized the chemo killing cancer cells and we truly believed that she would survive.” How appropriate that Kelly means “warrior woman” in Gaelic, as she was in the fight of her life.
The St. Jude article continues, “the unexpected finding that children with cancer are emotionally resilient is important because of the dramatic improvement in survival rates of pediatric cancers.” Dr. Phipps continues, “there has been a shift in research toward the concerns of long-term survivors of pediatric cancers. The ability of these children to cope with the after-effects of cancer is the major issue now. What we are learning from this population might help us learn how to improve the quality of life of children who are not doing so well.”
Ultimately, the goal is to place these kids back into the life they were forced to put on hold, allowing these young cancer survivors and their families to celebrate all the milestones in life that everyone should be able to look forward to.
Special thanks to the Anderson and Purcell Families for sharing their perspectives for this post.