Hi Shauna,
 
We were diagnosed at St. Jude Childrens Research Hospital after our local ER
found the tumor, we were sent there immediately. I remind myself that it wasn't
my fault either but it is so frustrating. I knew something wasn't right. One
doctor actually scolded me two weeks before her diagnosis. I took her to ER for
constipation. The x-ray showed constipation and he wanted to know why I didn't
know when she had had her last bowel movement. She is eight years old she
doesn't exactly need me holding her hand. I just look back at the whole
nightmare. But I kept my faith in God! And miracles do happen. We are fifteen
now!
 
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, 9:25 PM






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@yahoo. com>
>
> 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@ comcast.net <stamplifter@ comcast.net> wrote:
>
> From: stamplifter@ comcast.net <stamplifter@ comcast.net>
> 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@yahoogrou p s.com> wrote:
> >
> > From: bjyoung716 <no_reply@yahoogrou p 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
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > [Non-text portions of this message have been removed]
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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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