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'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
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.
of childhood cancer survivors
have at least one chronic
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
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
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
“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.”
A second phase of the study began
in 2007 to monitor thousands of new
“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
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
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
“Sometimes I worry what the next
problem could be,” admits Natalie.
“But it helps me realize that every
moment is golden.”
Research = better lives
Dr. Scott Baker is working to unravel why
metabolic disorders are so common among
people who have received bone marrow
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.”
While new treatments are years
away, the research gives hope to
people that survivors will one day
be free to lead healthier, more
“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
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.
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.”