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Improving the Quality of Life for Survivors of Childhood Cancer

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Survival Is the First Step

Seattle Children’s is improving how we detect, prevent and treat the health problems that come in cancer’s aftermath.

Karen Wilkinson and Natalie Smith

Karen Wilkinson's work to teach cancer survivors what symptoms to watch for prompted Natalie Smith, 12, to take action last year when she was feeling unusually tired. Tests showed she wasn't producing enough thyroid hormones – a fairly common side effect of one of her cancer treatments.

When Natalie Smith was diagnosed with leukemia at age 6, it took eight rounds of chemotherapy to wipe out her cancer. Then, two years later, it struck again.

This time, doctors gave Natalie just a 40% chance of survival. So she buckled down and endured whole-body radiation, multiple rounds of chemotherapy and a bone marrow transplant. 

Ask her how she’s doing today and she declares “I’m healthy, I’m 12 and I love Justin Bieber.”

It’s tempting to think the story ends there, with Natalie cured and happy. But the reality for her – and for the growing number of survivors of childhood cancer – is far more complicated.

While it’s true that cancer treatment is one of pediatric medicine’s biggest success stories, chemotherapy, radiation and other therapies can do lasting damage to a child’s developing body. Survivors often suffer health problems, such as learning disabilities, heart disease or kidney disorders.

66% of childhood cancer survivors have at least one chronic health condition.

Seattle Children’s is at the forefront of an emerging effort to unravel why this happens and figure out how to prevent, detect and treat these potentially significant health issues.

“When you cure a child of cancer, they could have 70 or 80 years of life ahead of them,” says Dr. Eric Chow, a physician-researcher who is the medical director of Children’s Cancer Survivor Program. “We have to do a better job of making those years happy and healthy.”

Emerging field, landmark study

Eric Chow

Dr. Eric Chow is developing a tool that will help calculate the risk survivors of cancer have of developing cardiovascular issues.

For decades, oncologists and researchers focused almost entirely on improving cancer treatments so more children could survive. And it worked – today, roughly 80% of all children diagnosed with cancer will beat it.

 “So I started wondering: what are these treatments actually doing to children, and how can we improve their quality of life?” Chow says.

Along with Dr. Scott Baker, Chow contributed to the Childhood Cancer Survivor Study – a landmark research project that started in 1993 and tracked the health of more than 10,000 people throughout the country. It found that the vast majority of cancer survivors suffer chronic health problems. It also detailed which health issues are likely to develop as a result of specific treatments.

For instance, many cancer patients are treated with anthracyclines, a type of chemotherapy drug that can weaken the heart and trigger cardiovascular problems. Children with leukemia may also receive steroids that can cause osteoporosis. Patients who receive radiation to the head can develop learning disabilities and hearing and vision problems.

“When you cure a child of cancer, they could have 70 or 80 years of life ahead of them. We have to do a better job of making those years happy and healthy.”

Dr. Eric Chow

A second phase of the study began in 2007 to monitor thousands of new patients.

“We’re looking to see if newer treatments affect patients differently than the therapies the first group received,” says Baker, who leads the Children’s Cancer Survivor Program and co-directs the Fred Hutchinson Cancer Research Center’s Survivorship Program.

Expert care for survivors

Children’s Cancer Survivor Program is designed to meet survivors’ special healthcare needs. It’s the only clinic of its kind in the region – and one of the few in the country.

“When you give toxic treatment to kids whose bodies and brains are still developing, you can’t expect them to continue developing in typical ways,” says Karen Wilkinson, a nurse practitioner who coordinates the clinic and the care of many of its patients. “My job is to teach kids what they need to know to stay healthy.”

Chow and Wilkinson developed a simple but powerful tool to do just that: a personalized care plan that gives survivors – and their primary care providers – a road map of the health problems they might face.

“My job is to teach kids what they need to know to stay healthy.”

— Karen Wilkinson, nurse practitioner

Wilkinson combs through a patient’s records to see which treatments they received and what the common side effects are. Then she writes up the plan in simple language and walks patients through it, paying special attention to the screenings they will need.

Most survivors move from specialized cancer care back to family doctors who rarely treat survivors. The personalized care plans give those practitioners, along with school nurses and other healthcare providers, a quick, easy way to understand what a patient has been through and what they need to look out for.

Wilkinson also goes out of her way to field calls from those providers.

“I love taking those calls because they help us keep people up-to-date on the latest best practices,” she says, “and that means more survivors will get better care.”

Early detection, better health

When Natalie felt unusually tired last year, she remembered that Wilkinson had mentioned this symptom. She immediately made an appointment at the clinic where blood tests revealed that her body wasn’t producing enough thyroid hormones. Wilkinson helped Natalie’s family find an endocrinologist who prescribed hormone replacement therapy that restored her energy and boosted her growth – she shot up two inches in the past six months.

Thanks to her care plan, Natalie knows she could face other problems in the future. Her cholesterol levels are unusually high, signaling an elevated risk of heart trouble. She also has a heightened risk of contracting cancer again.

“Sometimes I worry what the next problem could be,” admits Natalie. “But it helps me realize that every moment is golden.”

Research = better lives

Scott Baker

Dr. Scott Baker is working to unravel why metabolic disorders are so common among people who have received bone marrow transplants.

In addition to seeing patients, Chow and Baker are tackling a crucial question: what is the link between cancer treatment and metabolic disorders, such as high blood pressure, diabetes, obesity and heart disease?

Chow is focusing on pinpointing the factors that increase survivors’ risk of these problems. He is developing a tool that will help physicians calculate a patient’s risk of developing cardiovascular issues based on a few key factors, such as their age and the treatments they received.

Baker is unraveling why metabolic disorders are so common among survivors who received bone marrow transplants. Cardiovascular disease, for instance, is a leading cause of death among this group.

“If we can understand the mechanisms beneath these problems, it could help us develop new therapies that address them,” says Baker.

“Side effects are good problems to have because it means you survived. But we also need to make sure that someday, kids will suffer less from cancer and what comes afterward.”

— Dene James, Natalie's mom

While new treatments are years away, the research gives hope to people that survivors will one day be free to lead healthier, more normal lives.

“Side effects are good problems to have because it means you survived,” says Natalie’s mom, Dene James. “But we also need to make sure that someday, kids will suffer less from cancer and what comes afterward.

Progress in Cord Blood Research Advances Hope

Colleen Delaney

Dr. Colleen Delaney's research may make it easier for more people to get the lifesaving transplants they need.

The number of patients who receive lifesaving cord blood transplants may dramatically increase, thanks to Dr. Colleen Delaney’s research.

Delaney is leading the development of a technique that increases the stem cells in a cord blood unit by 150 times or more. Her discoveries open the possibility that patients who receive donor cord blood transplants will have the same or better outcome as those who receive conventional donor (bone marrow or peripheral blood) transplants. Donated cord blood does not need to genetically match patients who receive it, making it particularly promising for the 16,000 newly diagnosed leukemia patients who can’t find suitable bone marrow donors each year. Many of these patients are minorities or of mixed-race backgrounds.

Cord blood in cold storage

Cold storage plays an important role in keeping the cord blood units viable, both before and after they are expanded.

Delaney’s work builds on an earlier breakthrough by Seattle Children’s Dr. Irwin Bernstein, who figured out how to instruct blood stem cells to multiply by activating a pathway within those cells.

“Other researchers expanded these stem cells but couldn’t stop them from maturing. Only immature cells can differentiate into any cell type once they’re transplanted. We applied Dr. Bernstein’s discoveries to cord blood stem cells in a way that got them to divide without maturing.”

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