Parents hope to raise awareness of childhood cancer

SALT LAKE CITY -- September is Childhood Cancer Awareness Month.

Parents of cancer patients want to remind the public that of the 1.5 million new diagnoses per year, more than 10,000 are children.

"All of the brave little warriors fighting childhood cancers need our help--they need us to be their voices and to help raise awareness for them, which will ultimately lead to a cure," said Karen Ewing, whose daughter, Rylee, is battling neuroblastoma, a cancer that develops from nerve cells found in various parts of the body.

Cancer is the leading cause of death among children 1-14 years old in the United States, according to the National Cancer Institute. A 2011 report found that although new instances of the disease among children have increased over the past two decades, the death rate has steadily declined. Due to significant advances in treatment methods, the five-year survival rate increased from 58.1% to 79.6% between 1975 and 2003.

Leukemia and cancers of the brain and central nervous system account for half of all new cases of cancer in children. Leukemia alone accounts for one-third of new cases.

The causes of childhood cancer are largely unknown. Environmental factors are suspected, but substantial evidence is lacking. The NCI is currently involved in studies to identify causes and biology of childhood cancer, hoping that an understanding of biological and environmental factors will lead to new treatment approaches.

Researchers at Primary Children's Medical Center are hopeful that identifying the causes of childhood cancer will lead to a cure.

"One of our first areas of emphasis is the causes, risks, and new treatment for both Ewing's sarcoma and high-risk sarcoma," said Bonnie Midget, a hospital representative. "We also have ongoing studies on all types of childhood leukemia, as well as on genetic risk factors to develop childhood cancer."

While they wait for a cure, parents must rely on a vast network of support ranging from family and friends to hospital clinics and non-profit organizations. Some Utah parents believe that hospital support systems could use some improvement.

"There are not enough support communities," said Ewing. "Online forums never seem personal enough. We do have a great support group that 'meets' on Facebook: Utah Moms with Cancer Fighting Cuties. It is nice to meet with other moms that have been or are going through what you are going through."

Utah Moms spearheaded the effort to bring CureSearch, an organization that raises funds for childhood cancer research, to Utah. A July 9 walk raised more than $73,000, easily surpassing the group's $50,000 goal.

The Facebook group also allows parents to provide children with opportunities for social interaction.

"The organizations that do things for our kids are a better support to us than ones that focus on us," said Chelsie Young, the mother of a cancer patient. "Why? We don't usually take time for ourselves. We don't think we can afford to. We want our kids to have as many good and normal experiences as possible, so we take our kids to these special events and meet other parents."

Organizations such as HopeKids and Camp Hobe help to provide a sense of hope and excitement to children who may feel tired or discouraged. Primary Children's works closely with these and other organizations to provide emotional support for families and children who need support during an emotionally taxing time.

Utah moms spoke of the challenges faced by both patients and their families.

"Childhood cancer patients cannot speak for themselves and cannot explain the hurts and aches and pains," said Kristi Nawrocki, a parent of a cancer patient. "They cannot be an active participant in their care because they do not understand what is happening to them. They depend on their parents to be their voice and make the right choices."

The biggest challenges for patients seem to be emotional, not physical.

"The challenge is being a normal person," added Young. "These treatments last a long time. Because treatment is so long, having a sense of what life is supposed to be like, of what is "normal," is hard."

"If they do have that sense of what is normal," she continued, "they are often acutely aware that they are not. And not fitting in is very hard. Especially when your child and their peers don't understand why."

Parents face challenges of their own, ranging from balancing treatment, work, and family time to dealing with the financial burden of multiple hospital visits. In a recent survey of the National Children's Cancer Society, 89% of families reported income loss due to their child's diagnosis. The average out-of-pocket cost to battle a childhood cancer is over $9,700, not including treatment for side effects--ranging from brain damage to heart disease--that may result after a patient is cured.

Despite the physical and financial demands, the most difficult challenge parents face is one that, according to many, a parent could not understand without experiencing it.

"The most obvious challenge that parents face is watching their child be sick--watching them be so sick you wish they could be sedated and just sleep through it," said Ewing. "Holding them through such a high fever that you hope it doesn't turn into being moved to the ICU. Multiple surgeries. Administering shots. I wasn't too upset with the idea of Rylee going bald, but the first day the clumps started coming out...I cried."

The devastating side effects of childhood cancer have led some Utah parents to call for the establishment of a wider serving latent effects clinic for recovering patients.

Visitors to Primary Children's can later visit the Pediatric Cancer Late Effects Clinic at the University of Utah's Huntsman Cancer Institute as an adult, but some parents feel that clinics are needed to address problems hat may develop shortly after treatment for cancer.

"You go to your last treatment and they congratulate you and send you on your way," said Dani Prince. "If you have any problems from there on out, oh well--'You don't have cancer anymore, so we can't help you.' There should be a latent effects clinic for them."

Children suffering from late effects are referred to a pediatric oncologist at Primary Children's, according to Aagard.

Despite the rising survival rate, mothers are concerned with how little research is being done with childhood cancers compared to other cancers. According to members of the Utah Moms Facebook group, it is imperative to spread the word about the devastating disease in order to find a cure and give children like Rylee a future.

"I expected her to grow up having a normal life," said Ewing. "She will never have that. She will have severe side effects from her medicines that she will deal with her whole life."

"I sign off on every single poison that they put into her body, knowing full well the risks and side effects," she added. "Hoping that it will do its job and kill the cancer instead of my daughter."

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