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Re: childhood cancer

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Patty-  I visited your web site.  You are doing a beautiful job.  I have to
think about it a bit more to make any intelligent commonest though.  I hope
your son is doing well.  Regards Kim Burlingham, MD

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> From: Patty <>
> To: 
> Subject: childhood cancer
> Date: Friday, October 24, 1997 2:51 PM
>
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
> This message is from PedTalk!  To reply to the group, use
""
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
> 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 :-)
>
>
>
>
group.