|
May 19, 2005 - Jennifer Edwards /
Cincinnati Enquirer
 Tim
and Cindy Hayden raced from California to Canada seeking a cure when
their 12-year-old son, Jeffrey, was diagnosed with a terminal brain
tumor.
Experimental chemotherapy. Steroids. Faith healers.
Jeffrey died Sept. 8, a month shy of his 13th birthday. Now the
Haydens are trying to turn their tragedy into a lifesaver for others.
They have established a foundation to raise money to find cures for
brain tumors in children and a Web site they hope will help parents find
the best possible treatments.
Their first major fund-raiser, the Jeffrey Thomas Hayden Foundation
5k Walk/Run, takes place Saturday at Ronald Reagan Voice of Freedom Park
in West Chester Township. About 500 people, including students from 22
schools, are expected..
"When your child is diagnosed with a brain tumor, they pretty much
give you the grim statistics and then ask you what you want to do," Tim
Hayden said. "It's time to start focusing some research on this, because
a lot of kids are dying every year and there's not a whole lot of focus
on these kinds of tumors."
Childhood cancers
This year, an estimated 9,510 children under age 15 will be diagnosed
with cancer in the United States, according to the National Cancer
Institute. About 1,585 children will die this year from their disease.
About 21 percent of those cases involve brain and nervous system tumors,
according to the American Cancer Society.
Jeffrey died from a brain stem glioma, which tend to occur in
children between 5 and 10, according to the American Society of Clinical
Oncology. Such tumors often grow so deep that surgery cannot be
performed.
In fact, brain tumors kill more children per year than leukemia, says
Dr. Lars Wagner, a pediatric oncologist with Cincinnati Children's
Hospital Medical Center.
That's largely because more progress has been made in treating
leukemia, he said. "There has been some progress with some kinds of
brain tumors but gliomas have been especially frustrating. For that
disease, cure rates have remained low for the past couple of decades,"
Wagner said
Jeffrey rarely complained during his illness and treatments. A
straight-A student, he refused to fall behind in school and dreamed of
becoming an architect.
"When you get a diagnosis like this of a brain tumor, you can just
see it on the faces of the doctors telling you," Hayden said. "It's
almost like, 'Geez, any other disease but this one.'"
Many families with cancer-stricken children organize fund-raisers to
help defray medical bills. Many also get deeply involved in raising
awareness about the diseases.
But few families have developed projects as ambitious as the Jeffrey
Thomas Hayden Foundation.
Beyond fund raising, plans are for the Web site to eventually allow
families to post their children's MRIs in a secure way so they can get
second opinions from an advisory board of doctors.
Parents also can exchange detailed profiles of their children and
their treatments. By sharing experiences, parents may be better able to
make sure their children get the most-promising care.
A strong beginning
The foundation is getting a strong start in part because the Hayden
family has some resources. Hayden owns a manufacturing company that
builds machines that make integrated circuits for computer chips.
Mike Babcock, head coach of the Anaheim Mighty Ducks NHL hockey team,
is a former neighbor of the Hayden family. Babcock's kids played with
Jeffrey while Babcock was a coach of the minor-league Mighty Ducks
franchise here. Babcock delivered a eulogy at Jeffrey's funeral.
Babcock agreed to serve as the foundation's national spokesman to
help recruit athletes, doctors and others to the cause.
"We want to be a one-stop shop for kids with brain tumors," Babcock
said this week in a phone interview from California. "The best of the
best should be accessible to these families. It shouldn't be about how
much cash you have. It should be about making a difference."
Wanted: $1 million
The idea of the foundation emerged because the Haydens learned the
hard way how little progress has been made the last 30 years to cure
pediatric brain tumors, which almost always are fatal.
The foundation hopes to raise $1 million in two years, Hayden said.
So far, more than $50,000 has been raised.
By fall, the first parts of the Web site will go online to allow
parents to share their children's profiles. Next year, they hope to be
able to share medical images.
Money collected Saturday will be used to create the Jeffrey T. Hayden
Scholarship Fund for students who have either suffered from cancer or
are related to someone who has.
The first scholarship will go to Jeffrey's favorite school - Ohio
State.
For the Haydens, the experience is providing some healing.
"We see more good in people than bad these days," he said. "It's been
a life-changing thing. Nobody is unaffected by cancer or disease or bad
fortune. ...
"People have come to us and said, 'You guys are an example of how to
be a good parent,'" he said. "But I say, 'You know what, if it were your
kid, you would have done the exact same thing. Because you do anything
for your kid."
|
