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What Should You Know About Dealing with Childhood Cancers?
Dr. Parker is a leading expert on childhood cancers. Here, he gives some insight to parents on what they should know.
What do parents most often want to know about childhood cancers?
Their number one concern is what they could have done differently
to prevent their child's cancer. The truth is, there is nothing
they could have done. It is not their fault. We don't know what
causes childhood cancer. As far as we know, for most childhood cancers
there are no identified environmental factors. The issue of
"early detection" is relative. The signs of cancer usually noticeable
in children, such as fatigue, fever, loss of appetite, swollen lymph
nodes, belly pain, etc. are the same as for most common childhood
illnesses. Consequently, a diagnosis of cancer is generally
not made until these complaints have persisted beyond what is
usual for a typical illness. So just because the symptoms were
there for a while does not mean that the parent or pediatrician
"missed" something. In addition, the most common form of cancer
in children, acute leukemia, is everywhere in the blood by the
time it can be diagnosed, and this fact has no impact on the
curability of the leukemia.
What can parents do?
Once the diagnosis has been made, parents can become
their child's advocate and key members of the treatment team.
At Stony Brook, for example, parents and other family are
invited to be active members of the multidisciplinary treatment
team. We believe that by having knowledgeable, involved parents,
the quality of care is improved. At Stony Brook, your family
becomes our family.
What kinds of decisions do parents face?
The first major one is where to pursue treatment. Often a
parent's first instinct is, "We'll go anywhere for the best treatment,
even out of state." While the sentiment is absolutely right, the
reality is a little different. First, know that because of shared
protocols and best practices, almost every pediatric oncology
program delivers the same standard of care with similar
outcomes. Instead, think about the level of support the hospital
can deliver to you and your family. Consider the toll extended
travel times can take on your sick child, as well as the rest of
the family, especially if there are other small children at home.
That's why many times the best choice is a facility close to home.
There are times, however, when it makes sense to travel
for treatment, for instance if the child has a rare cancer for which
only highly experimental therapy is recommended; or, if the child
needs a complex surgical procedure that only a few pediatric
surgeons can perform.
How should a parent evaluate a treatment facility?
In addition to the ease of access
to the hospital and the expertise
of your child's medical team,
there are two key things you need
to look at in case your child has
an emergency situation: the quality
of the Pediatric Intensive Care
Unit (pICll) and how sophisticated
the Blood Bank is. Stony
Brook's Blood Bank is top notch,
and I believe our PICU is better
than any in the New York area.
What else does Stony Brook offer?
Our innovative School Re-Entry Program is a national model.
Run by a nurse practitioner and a child life expert with a background
in elementary education, the program works with schools
in Suffolk and Nassau Counties to return children to school in
the most productive setting possible. The goal is to provide
open communication between hospital, school, and family, and
remove any obstacles that may impede a smooth transition. For
example, kids with cancer may be self-conscious about their
changed appearance. Other children may be afraid of "catching
cancer." A teacher may not know how to accommodate a
disability. School nurses may not understand the child's medical
regimen. Our team makes classroom visits and presentations,
answers questions, advocates for the child, coordinates
services, works with faculty and administration, and generally
helps the child get the education he or she needs, in a supportive
environment.
What are the cure rates for childhood cancers?
Thanks to medical innovations and new protocols, 75 percent to
80 percent of kids will survive, and those with the most common
childhood cancer, acute lymphatic leukemia, have 80 percent to 85
percent cure rates. Our goal at Stony Brook is for kids to be
cured and to grow up to be healthy, well-adjusted adults.
For more information about childhood cancers, call the Stony Brook University Cancer Center at (631) 638-1000.
