How kids are beating cancer

No parent wants to think about their child having cancer. But it’s a scary truth that comes with its own set of issues. Find out how doctors are helping kids beat cancer, and what you can do to help a sick child cope.

Danielle Villari Swets was a 15-year-old high school freshman when she got the worst news of her life. After a routine checkup, her doctor told her she had a rare form of leukemia. Without treatment, she would die within weeks. Even with treatment, she had a 30% chance of survival.

In the two years that followed, Swets underwent a grueling chemotherapy regimen. The treatment’s side effects caused her to drop out of school, lose all her hair, and waste away to a skeletal 90 pounds.

“Cancer wreaks havoc on your body,” Swets says. “You end up taking a physical beating.”

The disease pushed her to the brink of death more than once, including the time she came down with a near-fatal 107 degree fever, her family called a priest to her bedside to deliver the Anointing of the Sick.

Mentally, it wasn’t any easier. Swets missed out on learning in a classroom, getting dolled up for school dances, and the comfort of seeing her friends all week.

“It was isolating, especially for someone in high school,” she says. “I had a good group of friends, and they made sure they kept me in the loop as to what was going on. I felt they were my lifeline to seeing what I was missing. I worked hard to get better, so I could get back to that kind of normal.”

Despite a reoccurrence that required a bone marrow transplant, Swets beat the cancer. And, she recovered in time to walk the stage at her high school graduation ceremony.

Now 37, Swets works as an event coordinator for the American Cancer Society in Chicago. And what’s even more encouraging? Survival stories like Swets’ are becoming more common. Thanks to growing institutional research, therapeutic strategies for parents and teachers, cutting-edge advancements in medical science—not to mention kids’ own naturally resilient bodies—more children with cancer are recovering to become healthy, fully functional adults.

Different than adults

Cancer diagnosed in children is relatively rare, and most kids who are diagnosed survive. Dr. Andrew Kung is director of the Division of Pediatric Hematology Oncology and Stem Cell Transplantation at Morgan Stanley Children’s Hospital in New York City. He says although different cancers have different survival rates, about 80% of all children diagnosed with cancer survive, while only 20% of adults survive. And there are some clear reasons why.

“Children are very resilient,” Kung says. “They usually do not have a lot of other medical problems that limit their ability to heal.”

A child’s naive disposition may help them overcome cancer, he says. Not knowing much about the disease or what it does to the body may save them from the damaging mental and physical effects of fear and stress that usually accompany an adult diagnosis. Kung says this childhood innocence may help in their resilience, and it’s also one reason why it’s rewarding to be a pediatric oncologist.

“You see the kids in the clinic, their heads are bald because of chemotherapy, but they are riding around on Big Wheels, and running around having fun,” he says. “They’re oblivious to the fact that they have these life-threatening diseases.”

Children don’t face as big a threat from cancer as adults. About 80 different kinds afflict children, compared to about 200 that strike adults, Kung says. A child also has a much lower likelihood of developing cancer, because, unlike adults, they aren’t exposed to as many cancer-causing dangers, such as cigarette smoke.

“The types of cancer children get are different than the cancers adults get,” Kung says. “The majority of cancers adults get are associated with exposures—whether its skin cancer due to exposure of radiation, lung cancer because of smoking, or colon cancer because of diet.”

Institutional advancements

Leukemia is the most common cancer among children, and doctors have made great strides in treating the bloodbased cancer. According to the American Cancer Society, today more than 90% of kids with leukemia survive it.

In the 1960s, the survival rate was less than 10%, a dismal prognosis that prompted scientists nationwide to pool their resources to study the disease.

Dr. Craig Silverman is a professor of radiation oncology at James Brown Cancer Center in Louisville, Ky.

He says in the 1970s, Pennsylvania-based doctor Giulio D’Angio created what is now known as the Pediatric Oncology Group, a medical think tank devoted to curing pediatric cancer. Researchers are using the data to develop new cancer-fighting techniques and medicines. Nearly all children who suffer from cancer nowadays have tissue collected and submitted to the group for further evaluation, Silverman says.

“Once people had his mechanism to formally study children, every pediatrician dealing with cancer patient recognized this was a way to do a better job,” Silverman says. “One of the challenges has always been data collection, unifying the data and getting all of the information inputted.”

By analyzing the data over decades, Silverman says doctors and other research centers have now isolated the long-term side effects of pediatric chemotherapy.

“We are heading in several directions to minimize the next generation of children that are treated,” Silverman says. “As many as 20% of young ladies we treated for Hodgkin’s Lymphoma end up with breast cancer 30 years later. When you are treating who are 6, 7 and 8 years old, you don’t know what kind of problems they have until they go through puberty.”

Fighting their own battle

Thanks to research advancements, children with cancer now have more paths to recovery.

Cancer research was still in its infancy as recently as 40 years ago, making treatment options limited. Doctors today have an array of medicines and cutting-edge treatments to address even the rarest cancers, and at the same time reduce the damaging effects of chemotherapy.

Dr. Anne Reilly, medical director of the Children’s Hospital of Philadelphia, says doctors are now using an approach called proton therapy to treat the source of brain tumors in children.

Proton therapy—similar to radiation—uses a beam of protons to eliminate cancer.

Reilly says the treatment can reduce radiation’s side effects, which may permanently damage children’s growing bodies, and cause infertility in adulthood.

“Radiation can stunt growth, especially if you radiate the spine or brain, because those areas control growth and hormones,” she says.

And sometimes doctors can encourage children’s bodies to directly fight the illness.

Oncologists are using a treatment that teaches a child’s natural immune system to kill cancer cells. Doctors at the Children’s Hospital of Philadelphia have used this technique to treat six kids with refractory leukemia. They took white blood cells out of their bodies, taught the cells to recognize the protein-causing leukemia, and inserted them back into the body.

“It takes the children’s own immune system, and teaches it to get the leukemia itself,” Reilly says. “It’s an interesting example of (a new approach to) medicine.”

Answering tough questions

Just like adults, kids diagnosed with cancer have plenty of questions, and parents walk a fine line between saying nothing and saying too much.

Lynn Ring is coordinator of Child and Family Services at the Cancer Support Center in south suburban Chicago. She says parents should tell kids only what they need to know—treatment, surgery and recovery—in a clear, understandable way.

If children ask whether they are going to die, Ring says it’s best to be honest while remaining upbeat.

“The typical response is to say, ‘The doctors are going to do everything they can, and we will do everything we can to make sure that doesn’t happen,’” she says. 

“It’s not giving them hope or making them a promise no one can keep, because no one knows that.”

A child’s mind can’t process the full implications of cancer and its treatment, so there’s no point in scaring them if they don’t understand what’s going on. Better to let them deal with the process as it unfolds, to avoid upsetting them over an uncertain future. In some ways, ignorance is bliss.

“They are taking each step for what it is,” Ring says. “The younger the child, the less they know what cancer really means. They take what’s happening in the moment, and they are able to have joy in their life.”

Surviving cancer: Now what?

Though Swets survived cancer as a teenager, she’s still dealing with the aftermath 20 years later.

“As a survivor, you go through different phases,” Swets says. “I definitely think for all cancer survivors, it’s in the back of their mind that something will happen, and you will be right back there.”

She tries to stay focused on the present—caring for her husband and their young son.

“I try to keep perspective about being around family, and trying to stay positive and help out others,” Swets says.

Unfortunately, things are much more difficult for a parent moving on from a cancer death. There is no road map for grief, says Ring, of the Cancer Support Center. She recommends parents join a support group to meet other parents who have experienced the pain of losing a child.

“Sometimes a group is helpful for parents to meet with other parents who lost a child,” she says. “It’s about trying to reform their family after a death like that. There isn’t any right way to grieve or time frame to grieve, and it’s important to be non-judgmental about grief.”

Healing at home and school

We tend to think of children’s lives as simple. But like adults, they have schedules, communities and social circles. And—just like adults with cancer—these routines and relationships are disrupted during treatment. This is upsetting, but Ring says parents and teachers can do some simple things to ease the interruption and help the healing continue.

“For children in treatment with chemotherapy and radiation, that will affect them in terms of missing their friends,” Ring says. “Most children want to get back to school and be in that environment and be with their friends again, and have a place where they can feel that this is a part of their life they can enjoy.”

When sick children must miss school for a significant amount of time, Ring says teachers can organize their classmates to make get-well cards, and send emails to let the sick child know they are missed.

Despite being ill, children can stay in touch with their friends and keep up with their schoolwork through email and online video conferencing, Ring says.

“I know kids who have compromised immune systems, and their friends may not visit them,” Ring says. “So they’ll talk through the window of the child’s house. Getting notes and letters and cards is one of the most common ways to stay connected.”

If all goes well, the child will return to the classroom. To prepare classmates, Ring says it’s helpful to discuss chemotherapy, and the physical changes their classmate has gone through. These conversations let kids air their questions and worries, which many times can be easily resolved.

“One of the most common comments children have is, ‘Are they are the same person?’” Ring says.

Simply answering yes makes a world of difference. Kids might be scared to ask questions at first, but they’ll be more comfortable with the returning classmate, and they’ll have a better understanding in the long run.

The same conversations help with brothers and sisters. Young siblings often have a tough time understanding what’s happening, and might even get jealous that their sick brother or sister is getting a lot of attention.

“The siblings of the family have some of the most typical kinds of reactions, like worrying about their siblings and having lots of difficulty focusing on school,” Ring says. “Maybe they feel a little bit guilty because they want to have fun. They may have some anger and say, ‘How come our lives can’t be like before?’”

To ease fears and maintain a sense of normalcy, Ring recommends parents enlist the brothers, sisters, friends and other family members of cancer patients to help around the house, do chores, provide transportation to and from the hospital, and help out their overburdened parents. She also encourages parents to talk with their other children, to help walk through them through the stages of their siblings’ cancer.

“Not every kid will have every emotion, but parents have to understand the siblings are likely to have a range of emotions,” Ring says. “If they communicate and invite the other children share how they feel, and be willing to talk about that, that’s very helpful. They’re not holding it inside. They feel they can share what’s happening with the family in the family."