Our researchers are helping more kids beat one of the deadliest pediatric cancers, giving new hope to patients nationwide.
Published in Connection magazine, Fall 2017
Katie Belle, now 11, participated in a clinical research study that helped her beat high-risk neuroblastoma. But the intense treatments also have long-term
side effects. Fortunately, she loves swimming and competes year-round, an activity that helps
keep her healthy.
Katie Belle was just 3 years old when
Seattle Children’s doctors removed
a baseball-sized tumor from her
abdomen – and discovered that she
had a potentially fatal cancer called
Neuroblastoma starts in nerve cells
and can spawn tumors throughout
the body. Because Katie’s cancer had
spread to many places, her doctor,
Dr. Julie Park, classified it as “high-risk.”
When Katie was diagnosed in 2009, the
best chance at a cure involved intense
chemotherapy, radiation and a stem cell
transplant. Even then, only about 35%
of kids with high-risk neuroblastoma
survived for more than five years.
Dr. Julie Park has set her sights on developing
new ways to make the treatments for high-risk
neuroblastoma more effective and less
Park invited the family to join two
research studies that she hoped would
improve these odds. One study involved
an experimental regimen that included
even more chemotherapy and a second
transplant; the other study tested a new
The research was part of Park’s
decades-long push to help more kids
beat neuroblastoma, and it highlighted
a core dilemma: The most effective
neuroblastoma treatments are brutal,
toxic and often leave children with side
effects like infertility, hearing loss and
getting another cancer.
Even as Park was hopeful that the
new approach would help, she wanted to move beyond throwing more and
more toxic treatments at kids. This
commitment to raising the bar on care
has helped Park dramatically improve
survival for neuroblastoma – and it
fuels her current drive to develop
reprogrammed T cells that find and
destroy neuroblastoma cells, with far
less chemotherapy and radiation.
“We’re excited that our research is
improving survival,” Park says. “But we have a long way to go – these kids
deserve treatments that are less toxic
and more effective.”
A grueling treatment
Dalia Hanna and Ji-Hyun Paschall are nurse practitioners who guide families through cancer treatment.
“People think our jobs must be depressing but the kids are a ray of sunshine,” Hanna says. “They
ride tricycles through the hospital and they constantly laugh and play jokes – they’re focused on
life, not on the bad things that could happen.”
Park started caring for children with
high-risk neuroblastoma 25 years ago,
when only about 25% of them lived for
more than three years after treatment
(a key milestone because most relapses
occur within three years). So she started
leading studies of new treatments via
the Children’s Oncology Group, a
nationwide research group that brings
together cancer experts to find cures.
In the late 1990s, pilot studies
showed that it was possible to give
children chemotherapy and two stem
cell transplants. Park and the Children’s
Oncology Group launched clinical trials
to study whether a regimen including
two transplants and immunotherapy
could make it less likely that kids with
neuroblastoma would see their cancer
During 18 months of treatment, Katie
spent more than 200 nights in the
hospital and endured multiple surgeries,
six rounds of chemotherapy, 14 days of
radiation, two stem cell transplants and
infusions of an immunotherapy drug.
There were bad days along the way – she vomited constantly during the initial chemotherapy, and the immunotherapy
caused extreme pain and hallucinations.
But mostly Katie remained cheerful, fun
and sassy while her mom and dad took
turns living at the hospital.
“It was like running a marathon at a
sprinter’s pace,” Jennifer Belle says. “By
the time it was done, I was a puddle on
New standard of care
The family’s endurance paid off. Though
scans showed bright spots in Katie’s
skull and in one of her lymph nodes
after she finished treatment (a sign that
some neuroblastoma cells might have
survived), the spots slowly disappeared
over the next few months.
And Katie wasn’t alone! The study’s
results, released in 2016, showed that 73% of kids who received two transplants
and immunotherapy survived for
more than three years after treatment,
compared to just 56% of children who
received the standard treatment.
The results were so promising that
the approach was quickly embraced
as the standard of care throughout
Katie is now six years out from
treatment and it’s so unlikely her cancer
will come back that she no longer needs
follow-up scans to make sure she’s
“We would have taken Katie anywhere
in the world to get the right treatment,
but Dr. Park and Seattle Children’s are
the best of the best,” Belle says. “We’re
so lucky to have them in our backyard.”
Ordinary tubes like this transport something
extraordinary: T cells that have been modified
to defeat cancer cells – a promising new
approach that could revolutionize how cancer
Park is also working with Dr. Michael Jensen to develop therapies that use
reprogrammed T cells to find and kill
neuroblastoma cells with less chemotherapy
This approach is showing great
promise in research studies for
leukemia (a cancer of the blood), but
neuroblastoma poses a bigger challenge
because it can block T-cell attacks. Park
and Jensen are designing ways to break
through those defenses. Their latest
approach coaxes the modified T cells
to multiply in large numbers once
they’re in a child’s body. This could
create T-cell armies big enough to
overwhelm neuroblastoma tumors.
“We have a long way to go, but we’re
learning fast and we’re going to keep
improving these therapies until we can,
hopefully, cure more kids,” Park says.
Her commitment is echoed
throughout Seattle Children’s, where
we’re exploring new treatments for
hundreds of childhood diseases.
“Research is the only way to improve
care and find cures for kids and families.
That’s why we’re so committed to it,”
says Dr. F. Bruder Stapleton, Seattle
Children’s chief academic officer.
Families fuel research
The Belles are so inspired to support Park’s research that they’ve led
everything from lemonade stands to
fundraising dinners, bringing in more
than $500,000 since 2010.
“Research is the only way to improve care and find cures for
kids and families. That’s why we’re so committed to it.”
“Cancer is the number one cause of
death by disease among children, so
we were shocked when we learned that
there’s very little federal funding for
pediatric cancer research,” Belle says.
“It’s incredibly important that families
like ours step up and help researchers
develop the next wave of treatments – if we don’t do it, no one will.”
Your support is crucial
Our researchers are transforming the
way cancer is treated and helping more
children lead longer, healthier lives
with fewer side effects. Some of our
advances are incremental improvements.
Others are breakthrough discoveries.
All of them are made possible with
investments by people like you. Your
generous support helps fund clinical
trials like the one that saved Katie’s life
and gives our scientists the time they
need to develop new ideas that accelerate
better treatments and cures.
Find out how you can help us develop
new therapies for neuroblastoma and
many other types of cancer. Contact
Erika Kreger at 206-987-8042 or by email.
Research Delivers Hope
Shortly after Tiago Viernes, now 3, was diagnosed with neuroblastoma in April 2016, his
parents had his siblings, JJ and Carissa, switch schools so the family could stay together
in Seattle during his treatment – a big change from their home in Wapato, Washington.
After nearly 16 months of treatment, the family was able to move back home this summer
Neuroblastoma had spread through
Tiago Viernes’s body by the time
doctors diagnosed it in 2016. The
odds would have been stacked
against Tiago just a few years ago.
But he was among the first wave of
kids to benefit from research led by
Dr. Julie Park that showed a new
treatment approach – including
two stem cell transplants and an
immunotherapy drug – helps
more children survive.
As Tiago’s family moved from
their home near Yakima to Seattle
for treatment, they found hope in
the fact that 73% of kids who got
this new regimen lived for more
than three years after treatment,
compared to just 56% of children
who received the standard approach
of one stem cell transplant.
“It made a huge psychological
difference that the numbers were
on our side – we knew that Tiago
really could be cured,” says his
father, Conan Viernes.
Today Tiago is in remission, a
3-year-old who loves trips to the
candy store and watching music
videos on YouTube.
“We’re so grateful to the families
who came before us and signed
up to test these new treatments
without knowing they would help,”
Viernes says. “Thanks to them, so
many more kids are going to beat
neuroblastoma, and I hope it’s only
going to get better from here.”
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