Bernie,

Thanks for all the info, I'm saving that to reflect on from time to time. Yes,
we were in the Air Force at Keesler AFB in Biloxi, MS. or at least until
Hurricane Katrina wipe out our house which caused the move to Delaware. I know
the hospital has to report us to some cancer institute but I know they reported
it as Delaware when I know from his leg cramps it was Mississippi.

Expecting Miracles,
Shauna
-------------- Original message ----------------------
From: bjyoung716 <no_reply@yahoogroups.com>
>
> Shauna, and other friends out there in the blogosphere:
>
> This has been a busy 24 hours. I'd like to offer some observations of
> what's on people's minds.
>
> 1) There are confirmed and suspected clusters of Ewing's out there, and
> there is little documention in the medical or epidemiologic literature
> about them.
>
> 2)There are associations between environmental factors and Ewing's, and
> between athletic activity and Ewing's, and between skeletal injuries and
> Ewing's. The latter two go hand in hand.
>
> 3)It is incomprehensible that these rare events are not met with enough
> concern to warrant a documention of medical history, lifestyle history,
> suspected environmental factors, etc. which may lead to identification
> of risk factors or even a cause. Even a solitary case in a remote or an
> unpopulated area should be documented for further investigation.
>
> Shauna, there are personal and epidemiologic issues surrounding your
> concerns. There is a cause for each of these cases. We will never know
> what that cause is in each case, but the enemy is not ourselves. As
> Holly's surgeon told her at the initial appointment, this did not
> happen because you didn't take the garbage out, and it did not happen
> because your parents asked you to take the garbage out. And you didn't
> miss the daignosis. Holly was given Bextra for tendonitis until the
> pain was so great she couldn't sleep. She named her Ewing's
> "tumoritis."
>
> There is another potential problem for athletes. They are used to
> playing through pain, and often ignore pain too long. This is important
> for athletic directors, coaches, trainors, and the athletes themselves.
> There is a considerable body of literature on discriminating between
> injury and illness. Everyone in sports needs to pay attention to it.
>
> Even if statisticians tell us these are random events, that does not
> mean that there is not a cause for every case, or that there are not
> common factors among some cases. Once you identify any common factor,
> the next step is one of measurement. If an increase in exposure to a
> factor leads to an increase in the effect, then that factor is a cause.
> This works well in the laboratory where you can control the factors and
> measure them as you do in an experiment. We cannot ethically experiment
> on human beings. Life is a natural experiment with many factors not
> under our control. It would help if each of the 250 or so cases
> diagnosed each year just in the States had a medical, lifestyle, and
> environmental history to analyze. With the information technology,
> communications, and computer power available in the 21st century, we
> should be doing better.
>
> A lot of people note skeletal injuries occurred before the onset of
> Ewing's. This is discounted by the medical community; it's a doctrine.
> However, experience shows that many medical doctrines are reversed, and
> even re-reversed and reversed again. There are ample examples of
> associations that have been missed in research studies, and ample
> examples of bias. Someday I'd like to see the research behind this
> doctrine, and see it re-evaluated with contemporary data.
>
> Shauna, you said you were stationed in Mississippi. Coast Guard, Air
> Force, Corps of Engineers?
>
> Bernie
>
>
> --- In ewingssarcoma@yahoogroups.com, stamplifter@... wrote:
> >
> > Marybeth,
> >
> > I think alot of the ER diagnosis depends on what kind of doctor they
> are, we just weren't lucky enough to get an orthopedic oncology doctor.
> JT ended up with almost a gallon of fluid on his lungs and found out it
> was Ewings from there. I wish I'd known to ask for a CAT scan (had no
> idea), but everyone I know has heard my story and if it gets someone to
> a doctor with a CAT scan or MRI sooner than later will help the guilt
> that I feel about it going on for so long. I know it wasn't my fault but
> I still find myself saying he might still have his leg if this was
> caught sooner.
> >
> > I'm so angry it was mistreated for so long. Where were you diagnosed?
> We actually had it while stationed in Mississippi but weren't diagnosed
> until we moved to Delaware.
> >
> > Expecting Miracles,
> >
> > Shauna
> >
> > -------------- Original message ----------------------
> > From: marybeth adkins jazzmbm@...
> > >
> > > Hi Shauna,
> > >
> > > I too am interested in the clusters. I can completely associate with
> you on the
> > > growing pains. That is all I heard for two years on my daughter. Her
> pains were
> > > in her but. I'm telling you, I felt like an idiot for so long taking
> her in with
> > > but pain. But we finally hit the er with a more aggressive doctor
> who did a cat
> > > scan. It wasn't growing pains. It was Ewings Pnet with a tumor the
> size of a
> > > football in an 8 year old little girl.
> > > Marybeth
> > > --- On Wed, 8/6/08, stamplifter@... stamplifter@... wrote:
> > >
> > > From: stamplifter@... stamplifter@...
> > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > To: ewingssarcoma@yahoogroups.com
> > > Date: Wednesday, August 6, 2008, 6:06 PM
> > >
> > >
> > >
> > >
> > >
> > >
> > > I have been reading all of this and I'd like to add my 2 cents. JT
> broke his leg
> > > Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at
> least two years
> > > we had him in and out of the ER and were told growing pains. He was
> not an
> > > athlete and not really active, being 6'1" he always complained that
> his legs
> > > hurt from the time he was five or six years old. I really think the
> environment
> > > has alot to do with him getting it. I was told most Ewings patients
> find out
> > > because of a broken bone. I am very interested in the clusters and
> more info.
> > >
> > > Thanks for sharing,
> > >
> > > Shauna Mom to JT
> > >
> > > ------------ -- Original message ------------ --------- -
> > > From: Sharon Kory <sharonlkory@ yahoo.com>
> > > > Bernie,
> > > >
> > > > My son was diagnosed during his first semester at Michigan, my
> daughter will
> > > be
> > > > a sophmore there this fall. Interesting to hear your're an alumni.
> Haven't
> > > yet,
> > > > but plan to look at the links you sent and do a little research
> myself. I,
> > > too,
> > > > am quite miffed by the fact that no one ever questioned his
> medical history to
> > > > try and trace back to something, if only for the sake of research.
> The other
> > > > boys who were diagnosed were athletes as well. I have also
> questioned the
> > > injury
> > > > aspect. My son broke his wrist while wrestling in high school,
> although his
> > > > tumour was on his spine; don't know if theres any correlation.
> > > >
> > > > Sharon
> > > >
> > > >
> > > > Sharon Kory
> > > >
> > > > Sharon Kory Interiors Inc
> > > > 29000 Inkster Rd. Suite 120
> > > > Southfield, MI 48034
> > > > phone: 248.357.3600 ext 203
> > > > fax: 248.357.3646
> > > >
> > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com> wrote:
> > > >
> > > > From: bjyoung716 no_reply@yahoogroup s.com>
> > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > To: ewingssarcoma@ yahoogroups. com
> > > > Date: Tuesday, August 5, 2008, 9:27 PM
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > Sharon & Fawad
> > > >
> > > > This site had been dormant for a month and all of sudden it's a
> > > > whirlwind.
> > > >
> > > > If you follow the same message I left with Patricia and read the
> files I
> > > > posted, you will get an idea as to how these clusters are studied
> and
> > > > denied through faulty research. I have been working on a list of
> > > > exposures which might be factors in Ewing's or any other suspected
> > > > cancer excess. I shouldn't have to do this. There are agencies
> which
> > > > ought to be at the task. What we see though is a systematic
> approach at
> > > > denying community cancer clusters.
> > > >
> > > > I also blog with the National Disease Clusters Alliance. It is a
> group
> > > > of activists, families, victims, doctors, nurses, scientists, and
> > > > epidemiologists who have become dissatisfied with the status quo
> and
> > > > feel we ought to be able to find causes for these cancer clusters.
> > > > Check out:
> > > >
> > > > http://tech. groups.yahoo. com/group/ NationalDiseaseC
> lustersAlliance/
> > > > <http://tech. groups.yahoo. com/group/ NationalDiseaseC
> lustersAlliance/ >
> > > >
> > > > If you go to the "search" window and enter keywords "Cape
> > > > Cod" or "Ewing's" you will retrieve all the relevant
> > > > messages. I'm going to alert them of the activity on this blog.
> > > >
> > > > What blows my mind is that three and a half years after my
> daughter's
> > > > diagnosis, no one has even asked for her medical history, let
> alone
> > > > investigate lifestyle factors or potential environmental
> exposures! If
> > > > you don't ask the questions, you don't get the answers.
> > > >
> > > > Tonight I did a yahoo search on "Hockey" & "Ewing's
> > > > sarcoma." You ought to try it. Try it with any sport. My
> > > > daughter's sports were volleyball and track, but a football
> > > > player/wannabee shot putter uncorked a wild shot and smashed her
> ankle.
> > > > The conventional wisdom, probably 75years old, is that injuries
> > > > don't lead to Ewing's. But I've seen so much bad research
> > > > recently, and see so many associations between sports injuries and
> > > > Ewing's that I think the source of that doctrine should be flushed
> > > > out of the literature and re-examined.
> > > >
> > > > I know Bloomfield Hills as a haven for Michigan grads like me ('68
> &
> > > > '71). I also used to sail out of Bayview Yacht Club. My first ski
> > > > adventure was at Mt. Holly. That was my daughter's name.
> > > >
> > > > Bernie
> > > >
> > > > --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@
> ...>
> > > > wrote:
> > > > >
> > > > > My son, now 26 years old, was diagnosed at age 18 with Ewings
> Sarcoma.
> > > > We live in a suburb of Detroit, called Bloomfield Hills. There
> were at
> > > > least three other boys in our general area diagnosed around the
> same
> > > > time with either Ewings Sarcoma or Osteosarcoma, one of them
> attended
> > > > the same high school. I have always found this to be quite
> peculiar, due
> > > > to the rarity. The possibility of some environmental factor
> > > > contributing to this disease seems to make sense. My son received
> 10
> > > > months of chemo, radiation and surgery in a wonderful hospital in
> our
> > > > area. We are very fortuneate that he is a healthy survivor. He too
> was
> > > > an athlete, hockey player, wrestler, golfer and was a very active
> teen.
> > > > > I would be interested in anything that would shed some light on
> why an
> > > > otherwise healthy young man, with no family history of cancer
> could
> > > > contract this horrible disease.
> > > > > Best to all of you still struggling and or mourning the loss of
> a
> > > > loved one. Our hearts will always be with you.
> > > > >
> > > > > Sharon Kory
> > > > >
> > > > > I am very curious
> > > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
> > > > >
> > > > > From: bjyoung716 no_reply@yahoogroup s.com
> > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > > To: ewingssarcoma@ yahoogroups. com
> > > > > Date: Tuesday, August 5, 2008, 7:56 PM
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > Patricia
> > > > >
> > > > > Maine West High School in DesPlaines, Illinois, had cases of
> Ewing's
> > > > > sarcoma in 2003 and 2004 (the latter being a recent graduate).
> It's a
> > > > > big school (5000 or so) just north of O'hare International
> Airport.
> > > > > That community has perceived an excess of cancer, and I have
> seen
> > > > > contours of incidence that diminish the further you get from the
> > > > > airport. To have two cases of such a rare disease so close
> together
> > > > > gets your attention, no matter what the epidemiologists say.
> Your
> > > > > information is interesting.
> > > > >
> > > > > I belong to several yahoo groups, and all are organized
> differently.
> > > > It
> > > > > seems members of this group receive new messages automatically,
> so you
> > > > > don't have to visit the home page (unless you want to download
> files
> > > > or
> > > > > search for old messages. If you follow this link:
> > > > >
> > > > > http://health. groups.yahoo. com/group/ ewingssarcoma/
> > > > > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
> > > > >
> > > > > and click on the word "Files" you can download the files I have
> > > > posted.
> > > > >
> > > > > My sympathies to you on the loss of your daughter. I too lost a
> > > > > daughter in January just after her 22 birthday. She battled 3
> years,
> > > > > and enjoyed much support as she was an active athlete and played
> on
> > > > many
> > > > > teams.
> > > > >
> > > > > If you read my posts, there is an association on Cape Cod
> between a
> > > > > unique electromagnetic radiation exposure and Ewing's. But I
> think
> > > > > there are statistical confounders, and one (on a worldwide
> basis) is
> > > > > contact sports (hockey, football, soccer). I am also suspicious
> of
> > > > > osteochondroma; there seems to be a excess of that disease which
> > > > > parallels the Cape Cod Ewing's cluster. After revealing my
> concerns to
> > > > > the state health department, a mother with a son who had Ewing's
> said
> > > > > she had another son with osteochondroma!
> > > > >
> > > > > Most of our professional epidemiologists are inclined to
> discredit
> > > > talk
> > > > > of clusters. But this is the 21st century, and with a better
> educated
> > > > > population, the ability to instantaneously communicate with one
> > > > another,
> > > > > massive information storage and retrieval technology, and the
> help of
> > > > > some friendly epidemiologists, I beleive we may be able to
> identify
> > > > risk
> > > > > factors for Ewing's where none now exist.
> > > > >
> > > > > Do you have any idea if the is a common exposure to some
> environmental
> > > > > factor in your community or school? Even though I live on this
> side of
> > > > > "the pond," I have seen several stories of Ewing's cases in the
> same
> > > > > geographic area you describe. I'd like to know more about your
> > > > > concerns. I don't want to bias your thinking before revealing
> some of
> > > > > the confounding factors that have caught my attention.
> > > > >
> > > > > Hope to we hear more from you.
> > > > >
> > > > > Bernie
> > > > >
> > > > > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> > > > > <patriciasmith@ ...> wrote:
> > > > > >
> > > > > > Hi
> > > > > >
> > > > > > I wonder could you post the information, I live in the
> republic of
> > > > > ireland and we have a population of 3500,000million
> > > > > > yet where I live and near by three teenagers at the same time
> were
> > > > > diagnosed with ewings sarcoma.
> > > > > > two sat beside one another in the same school.
> > > > > > my daughter Krystle died of ewings sarcoma at aged 18 years we
> live
> > > > 10
> > > > > miles away.
> > > > > > I am interested in clusters and I am a member of The bone
> cancer
> > > > > research trust www.bonecancerresea rch.org.uk
> > > > > > I got a lot of data from ireland england scotland and wales
> and we
> > > > > seem to have a lot for a small population.
> > > > > > there is very little research in this area.
> > > > > >
> > > > > > regards
> > > > > > patricia
> > > > > > ireland
> > > > > >
> > > > > >
> > > > > > ----- Original Message -----
> > > > > > From: bjyoung716
> > > > > > To: ewingssarcoma@ yahoogroups. com
> > > > > > Sent: Tuesday, August 05, 2008 9:13 AM
> > > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > > >
> > > > > >
> > > > > >
> > > > > > Scott
> > > > > >
> > > > > > Thank you for your comments. I have just posted three files on
> this
> > > > > > blog (which I think are visible only to members) which answer
> most
> > > > of
> > > > > > the points you raise. They are dated and are best read in
> > > > > chronological
> > > > > > order; they seem to be listed with most recent on top.
> > > > > >
> > > > > > I would only add that diagnosis is often delayed, which is of
> > > > > particular
> > > > > > concern for athletes who are used to playing through pain. Our
> > > > medical
> > > > > > institutions are world class when it comes to confirming a
> diagnosis
> > > > > and
> > > > > > treating the disease. At the local level things are more
> ordinary.
> > > > > >
> > > > > > This cluster is unique to Cape Cod. There does not seem to be
> a
> > > > > > dramatic elevation in Ewing's anywhere else in New England. It
> is
> > > > 67%
> > > > > > more severe than the Woburn Leukemia cluster documented the
> movie "A
> > > > > > Civil Action."
> > > > > >
> > > > > > I don't know if EMR from our high powered radar station is the
> > > > cause,
> > > > > > but there are enough reasons to be concerned, and the research
> > > > > > surrounding it has been pathetically poor. If anyone is still
> > > > > > interested after reading these files, I have a 23 page letter
> of
> > > > > > comments on a recent Environmental Impact Statement I can
> post.
> > > > > >
> > > > > > Bernie
> > > > > >
> > > > > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice
> Alcott
> > > > > > scottbernice@ wrote:
> > > > > > >
> > > > > > >
> > > > > > > Hi Bernie,
> > > > > > >
> > > > > > > I'm a Ewing's patient and an American living in Belgium
> (just 10
> > > > > > million people) and have been anecdotally surprised at the
> number of
> > > > > > cases just known to me arising in this small country. Turns
> out the
> > > > > > nephew of a close work colleague also has ewing's, odd. So I
> started
> > > > > > wondering about "clusters" too. After looking into it all, now
> I'm
> > > > not
> > > > > > so sure about the anecdotal math I was doing.
> > > > > > >
> > > > > > > In your case, Ewing's should appear much more often in the
> cape
> > > > > anyway
> > > > > > versus the general poulation. Are you controlling for that?
> Ewing's
> > > > is
> > > > > a
> > > > > > white person's disease (it shows up 9x more often in white
> people)
> > > > and
> > > > > > the cape has 80% fewer "non-whites" then the general
> population.
> > > > > Ewing's
> > > > > > overwhelmingly clusters in teens 15-19. I don't know if the
> > > > incidents
> > > > > > you count on the cape include the summer/second home
> population
> > > > which
> > > > > > may statistically over-index heavily on families with kids
> versus
> > > > the
> > > > > > general population? Last, I've read that Ewing's is often
> discovered
> > > > > > "more" in places with access to top teaching hospitals and
> places
> > > > that
> > > > > > do great pathology while other locations fail to accurately
> > > > > subclassify
> > > > > > tumors as Ewings (they think they are just general sarcomas or
> > > > > > osteo-sarcoma, etc.). The cape has access to some of the
> finest
> > > > > doctors,
> > > > > > institutions and teaching hospitals in the world. Maybe kids
> who get
> > > > > > painful lumps on the cape get to Boston and correctly
> diagnosed in
> > > > > that
> > > > > > area more than kids in other places? I don't know. I just
> think it's
> > > > > > hard to control for all of this and accurately assess things.
> > > > Ewing's
> > > > > is
> > > > > > so small and has so many correlations (age, race, diagnostic
> > > > variance)
> > > > > > that there is huge statistical "standard error" in the data.
> Given
> > > > all
> > > > > > that, I lost confidence in my ability to extrapolate the
> meaning of
> > > > > > variance from 10 cases when there should have 4. Numbers are
> just
> > > > too
> > > > > > small. In my case, Belgium is VERY white and it's a world
> leader in
> > > > > > analysis and pathology. I'm not so sure about anything any
> more!
> > > > > > >
> > > > > > > Scott
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > > > > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma
> Cluster
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > > Friends:Here on Cape Cod we have a cluster of Ewing's
> sarcoma with
> > > > a
> > > > > > standardized incidence ratio of 3.84 (Massachusetts Department
> of
> > > > > Public
> > > > > > Health figure)or 6.67 (my figure). We should see one case
> every 6.7
> > > > > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004,
> and
> > > > one
> > > > > in
> > > > > > 2005. There are cses in 1996 and 1996. There are also adult
> cases. A
> > > > > > pair were diagnosed the same day; the 2 in 2004 the same
> month. A
> > > > pair
> > > > > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> > > > > ensemble
> > > > > > of 3 cases in the Mid-Cape, but most cases are from the Upper
> Cape.
> > > > > > THere is a 13 mile gap between these two ensembles.I am
> suspicious
> > > > of
> > > > > a
> > > > > > particularly high incidence in athletes or athletically active
> > > > > > individuals, although I recognize we are becoming a more
> active
> > > > > > society.Anyone have any observations or concerns to offer to
> this
> > > > > > discussion?Bernie
> > > > > > >
> > > > > > >
> > > > > > >
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> > > > > > >
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> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > > __________ Information from ESET NOD32 Antivirus, version of
> virus
> > > > > signature database 3329 (20080805) __________
> > > > > >
> > > > > > The message was checked by ESET NOD32 Antivirus.
> > > > > >
> > > > > > http://www.eset. com
> > > > > >
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