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childhood cancer

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All,

I am a member of the Ped Onc listserve group, a group consisting mostly of
parents of children with cancer. (My own son has pre-B calla+ ALL, WBC 7200
at dx, high risk because he was 16 yo at dx.) Through six months of
"talking" with these parents, the stories of the numerous late and
miss-diagnoses of their children's impressed me with the need for better
awareness of children's cancers, both on the part of the parents and on the
part of the pediatricians.

So, I tried to remember why/how I knew that my own son's tiredness and
aches could be a sign of "some sort of serious blood problem", a knowledge
which prompted me to take him to the doctor. I couldn't remember, so I
searched my many childhood and health books. I could not find a concise
listing of "warning signs of childhood cancers". I asked the Ped Onc group,
spread out over most of the world: nothing. One member found an ACS booklet
on the signs of childhood cancer, but upon calling the ACS, found that it
was out of print.

Therefore, I took it upon myself to write such a summary, with the help of
all the members of our listserve. I have put it on the Web for others to
review. Eventually, I will condense the 'signs' into a short list which we
are thinking of printing and asking politely if we could put them in
pediatricians offices, or even making a poster with these signs.

Signs of Childhood Cancer:
http://orgchem.colorado.edu/patty/SOCC.html

What do all of you think about this? Would there be a place for the Web
page (url above) available as a printed pamphlet? Is a poster a good idea?
Is a small card with only the signs a good idea? Are my sign and symptoms
as on the Web page correct from a medical standpoint?

Our next goal may be to try to reach all pediatricians with our plea:
please, check our children for cancer so that it can be diagnosed early;
order the tests even though you think cancer is a remote possibility;
listen to us when we tell you something is not quite right with our child.
I know that most doctors are conscientious, but cancer is still relatively
rare, and they may not be looking for it. Also, I realize how hard it is
dealing with parents. Especially those that don't care, or don't pay
attention, or prefer to seek alternative medicines. How can we reach all
pediatricians with our pleas?

And then there is the Health Insurance issue, will the insurance pay for
the tests? My own health insurance has directed me to many different
"primary" physicians over the past years, this means that my doctors don't
know me or my children well, and this means that the doctor may or may not
respect my opinions or my level of knowledge about my children's health.

Thanks,

Patty Feist, Coordinator for Organic Chemistry, Univ. Colorado, Boulder,
and mom to James, dx ALL 4/97. If you're interested in my personal page, go
to

http://orgchem.colorado.edu/patty/jamesleuk.html

or even

http://orgchem.colorado.edu/

for a remembrance of your o-chem days :-)