Marybeth,

I had to laugh at your posting... in the beginning I didn't know his bowel
activity but I sure do now!

Have a great Day and thanks for making me smile,

Shauna
-------------- Original message ----------------------
From: marybeth adkins <jazzmbm@...>
> 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
> > > > > >
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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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