thanks

[Guest guest]

Hang in there, Marie :-)

With time, it WILL get better!

And I wanted to let you know that facial paralysis is NOT the end of the

world. I've had paralysis on one side of my face since my first surgery in

1983. It takes a bit of getting used to, as things must be done differently.

But, you learn to adjust. :-) By the way, I am totally, 150% Deaf since my

second (1983) of 7 brain surgeries.

So, keep your chin up Marie. Things will work out for you :-)

June

[Guest guest]

June,

Encouragement for others when your plate is so full--you are really

something. 7 brain surgeries is hard to fathom. I do believe people with

NF2 were put here to teach about character, courage, strength in the face of

adversity! Yes, as parents it hurts to watch our loved ones, but a whole lot

easier than dealing directly and hourly with the outcome of this disorder.

June, I hope that the sun shines and flowers bloom for you always because you

deserve it. Vicki

[Guest guest]

Jimmy, Happy Afterbirth.

At 03:39 PM 5/16/2000 -0400, you wrote:

> bonjour kemosabies thank you for all the birthday wishes. Jimmy

>

[Guest guest]

Jimmy, Happy Afterbirth.

At 03:39 PM 5/16/2000 -0400, you wrote:

> bonjour kemosabies thank you for all the birthday wishes. Jimmy

>

[Guest guest]

Ron,

I'm glad you had a very, wonderful birthday! I have to say, I really had a

good laugh at the joke you attached! " HELLOOOOOOO......Does if look like I

have Betty Crocker written on my forehead?! " HAAAAAAAAAAAH!!!!!

Mark

----Original Message Follows----

> > > >> > > > >

> > > >> > > > > A HUSBAND IS AT HOME WATCHING A

> FOOTBALL GAME WHEN HIS WIFE

> > > >> > > > > INTERRUPTS...

> > > >> > > > >

> > > >> > > > > " HONEY, COULD YOU FIX THE LIGHT IN

> THE HALLWAY? IT'S BEEN

> > > >> > > > > FLICKERING FOR WEEKS NOW "

> > > >> > > > >

> > > >> > > > > HE LOOKS AT HER AND SAYS ANGRILY.

> " FIX THE LIGHT? NOW? DOES

> > > >IT

> > > >>LOOK

> > > >> > > LIKE

> > > >> > > > I

> > > >> > > > > HAVE A G.E. LOGO PRINTED ON MY

> FOREHEAD? I DON'T THINK SO. "

> > > >> > > > >

> > > >> > > > > WELL THEN, COULD YOU FIX THE FRIDGE

> DOOR? IT WON'T CLOSE

> > > >RIGHT. "

> > > >> > > > >

> > > >> > > > > TO WHICH HE REPLIED, " FIX THE FRIDGE

> DOOR? DOES IT LOOK

> >LIKE

> > > >I

> > > >> > > > > HAVE WESTINGHOUSE WRITTEN ON MY

> FOREHEAD? I DON'T THINK SO. "

> > > >> > > > >

> > > >> > > > > " FINE, " SHE SAYS " THEN YOU COULD AT

> LEAST FIX THE STEPS TO

> >THE

> > > >

> > > >>FRONT

> > > >> > > DOOR?

> > > >> > > > > THEY'RE ABOUT TO BREAK. "

> > > >> > > > >

> > > >> > > > > " I'M NOT A DAMN CARPENTER AND I DON'T

> WANT TO FIX STEPS, " HE

> > > >SAYS.

> > > >> > > " DOES

> > > >> > > > IT

> > > >> > > > > LOOK LIKE I HAVE ACE HARDWARE WRITTEN

> ON MY FOREHEAD? I

> >DON'T

> > > >

> > > >>THINK

> > > >> > SO.

> > > >> > > > > I'VE HAD ENOUGH OF YOU. I'M GOING TO

> THE BAR!!! "

> > > >> > > > >

> > > >> > > > > SO HE GOES TO THE BAR AND DRINKS FOR

> A COUPLE HOURS. HE

> > > >STARTS TO

> > > >> > FEEL

> > > >> > > > > GUILTY ABOUT HOW HE TREATED HIS WIFE,

> AND DECIDES TO GO HOME

> > > >AND

> > > >>HELP

> > > >> > > > OUT.

> > > >> > > > >

> > > >> > > > > AS HE WALKS INTO THE HOUSE HE NOTICES

> THE STEPS ARE ALREADY

> > > >FIXED.

> > > >> > AS

> > > >> > > > HE

> > > >> > > > > ENTERS THE HOUSE, HE SEES THE HALL

> LIGHT IS WORKING. AS HE

> > > >GOES

> > > >>TO

> > > >> > GET

> > > >> > > A

> > > >> > > > > BEER, HE NOTICES THE FRIDGE DOOR IS

> FIXED.

> > > >> > > > >

> > > >> > > > > 'HONEY, HOW'D ALL THIS GET FIXED? "

> > > >> > > > >

> > > >> > > > > SHE SAID, " WELL, WHEN YOU LEFT I SAT

> OUTSIDE AND CRIED.

> >JUST

> > > >

> > > >>THEN

> > > >>A

> > > >> > > > NICE

> > > >> > > > > YOUNG MAN ASKED ME WHAT WAS WRONG,

> AND I TOLD HIM. HE

> > > >OFFERED TO

> > > >>DO

> > > >> > > ALL

> > > >> > > > > THE REPAIRS, AND ALL I HAD TO DO WAS

> EITHER GO TO BED WITH

> >HIM

> > > >OR

> > > >>BAKE

> > > >> > A

> > > >> > > > > CAKE. "

> > > >> > > > >

> > > >> > > > > HE SAID, " SO WHAT KIND OF CAKE DID

> YOU BAKE HIM? "

> > > >> > > > >

> > > >> > > > > SHE REPLIED, " HELLOOOOO........DO YOU

> SEE BETTY CROCKER

> > > >WRITTEN ON

> > > >>MY

> > > >> > > > > FOREHEAD? "

>

_______________________________

Ron

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Ron,

I'm glad you had a very, wonderful birthday! I have to say, I really had a

good laugh at the joke you attached! " HELLOOOOOOO......Does if look like I

have Betty Crocker written on my forehead?! " HAAAAAAAAAAAH!!!!!

Mark

----Original Message Follows----

> > > >> > > > >

> > > >> > > > > A HUSBAND IS AT HOME WATCHING A

> FOOTBALL GAME WHEN HIS WIFE

> > > >> > > > > INTERRUPTS...

> > > >> > > > >

> > > >> > > > > " HONEY, COULD YOU FIX THE LIGHT IN

> THE HALLWAY? IT'S BEEN

> > > >> > > > > FLICKERING FOR WEEKS NOW "

> > > >> > > > >

> > > >> > > > > HE LOOKS AT HER AND SAYS ANGRILY.

> " FIX THE LIGHT? NOW? DOES

> > > >IT

> > > >>LOOK

> > > >> > > LIKE

> > > >> > > > I

> > > >> > > > > HAVE A G.E. LOGO PRINTED ON MY

> FOREHEAD? I DON'T THINK SO. "

> > > >> > > > >

> > > >> > > > > WELL THEN, COULD YOU FIX THE FRIDGE

> DOOR? IT WON'T CLOSE

> > > >RIGHT. "

> > > >> > > > >

> > > >> > > > > TO WHICH HE REPLIED, " FIX THE FRIDGE

> DOOR? DOES IT LOOK

> >LIKE

> > > >I

> > > >> > > > > HAVE WESTINGHOUSE WRITTEN ON MY

> FOREHEAD? I DON'T THINK SO. "

> > > >> > > > >

> > > >> > > > > " FINE, " SHE SAYS " THEN YOU COULD AT

> LEAST FIX THE STEPS TO

> >THE

> > > >

> > > >>FRONT

> > > >> > > DOOR?

> > > >> > > > > THEY'RE ABOUT TO BREAK. "

> > > >> > > > >

> > > >> > > > > " I'M NOT A DAMN CARPENTER AND I DON'T

> WANT TO FIX STEPS, " HE

> > > >SAYS.

> > > >> > > " DOES

> > > >> > > > IT

> > > >> > > > > LOOK LIKE I HAVE ACE HARDWARE WRITTEN

> ON MY FOREHEAD? I

> >DON'T

> > > >

> > > >>THINK

> > > >> > SO.

> > > >> > > > > I'VE HAD ENOUGH OF YOU. I'M GOING TO

> THE BAR!!! "

> > > >> > > > >

> > > >> > > > > SO HE GOES TO THE BAR AND DRINKS FOR

> A COUPLE HOURS. HE

> > > >STARTS TO

> > > >> > FEEL

> > > >> > > > > GUILTY ABOUT HOW HE TREATED HIS WIFE,

> AND DECIDES TO GO HOME

> > > >AND

> > > >>HELP

> > > >> > > > OUT.

> > > >> > > > >

> > > >> > > > > AS HE WALKS INTO THE HOUSE HE NOTICES

> THE STEPS ARE ALREADY

> > > >FIXED.

> > > >> > AS

> > > >> > > > HE

> > > >> > > > > ENTERS THE HOUSE, HE SEES THE HALL

> LIGHT IS WORKING. AS HE

> > > >GOES

> > > >>TO

> > > >> > GET

> > > >> > > A

> > > >> > > > > BEER, HE NOTICES THE FRIDGE DOOR IS

> FIXED.

> > > >> > > > >

> > > >> > > > > 'HONEY, HOW'D ALL THIS GET FIXED? "

> > > >> > > > >

> > > >> > > > > SHE SAID, " WELL, WHEN YOU LEFT I SAT

> OUTSIDE AND CRIED.

> >JUST

> > > >

> > > >>THEN

> > > >>A

> > > >> > > > NICE

> > > >> > > > > YOUNG MAN ASKED ME WHAT WAS WRONG,

> AND I TOLD HIM. HE

> > > >OFFERED TO

> > > >>DO

> > > >> > > ALL

> > > >> > > > > THE REPAIRS, AND ALL I HAD TO DO WAS

> EITHER GO TO BED WITH

> >HIM

> > > >OR

> > > >>BAKE

> > > >> > A

> > > >> > > > > CAKE. "

> > > >> > > > >

> > > >> > > > > HE SAID, " SO WHAT KIND OF CAKE DID

> YOU BAKE HIM? "

> > > >> > > > >

> > > >> > > > > SHE REPLIED, " HELLOOOOO........DO YOU

> SEE BETTY CROCKER

> > > >WRITTEN ON

> > > >>MY

> > > >> > > > > FOREHEAD? "

>

_______________________________

Ron

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Dear :

I reread your post so many times. I just can't believe it. Of course you

have my prayers. I wish there was more that I could do. I have a daughter

with a rare form of NF, not sure if it is NF2 or what because she has not

shown acoustic neuromas yet. She has had 11 surgeries and many more in the

offing. They just found one in her airway two weeks ago while on the

operating table. Thankfully, my son seems OK and we do not have NF. But you

have so many children and yourself to deal with. I am overwhelmed by the

situation as you must be. I will hope and pray for the girls that their

tumors will be as successful as Carolyn's. I am sure that you, like me, wish

for a treatment and much research for this disorder. My very best to you.

Vicki

[Guest guest]

I'm so sorry this has occurred !

I have some idea of what you are going through I have two boys with NF..

I cant print on the crew the way this damn NF affects my life. Like you

its not so much the ' ME ' but the 'They ' our children that

really hurt !

Haven't we all had enough ?

Your friend from OZ MARCUS

( I'll post the way I really feel inside on the SOCIAL list ! ask someone to

send it you ! )

THANKS

> DEAR CREW FRIENDS,

> THANK YOU FOR ALL OF THE LOVELY BIRTHDAY CARD. YOU ARE THE MOST

> THOUGHTFUL PEOPLE. I APPRECIATED ALL OF THEM.

> NOW TO LET ALL OF YOU KNOW A LITTLE OF WHAT IS HAPPENING IN MY LIFE....

> MOST OF YOU WILL REMEMBER IN MAY MY YOUNGEST DAUGHTER CAROLYN WAS

> DIAGNOSED WITH NF2 HAVING BILATERAL ACOUSTIC TUMORS. WE WENT TO HEI AND

HAD

> VERY SUCCESSFUL SURGERY THE TUMOR WAS 2CM AND THEY SAVED HER HEARING AND

> FACIAL NERVE.

> THIS WITH CAROLYN FINALLY MOTIVATED HER SISTERS TO HAVE MRI'S. DR

> BRACKMANN HAD BEEN TELLING ME THIS FOR SEVERAL YEARS. FIRST THE NEXT TO

THE

> YOUNGEST SARAH HAD A MRI BAD NEWS NF2 THREE TUMORS THE BILATERAL AND A

> MENGINOMA.

> MAYBE I SHOULD TELL YOU I HAVE FIVE DAUGHTERS CATHY AGE 40, BECKY AGE

> 38, PATTY AGE 36,SARAH AGE 30 AND CAROLYN AGE 29.

> WELL NEXT CAROLYN HAD TO HAVE A MRI OF THE SPINE AND PRAISE GOD IT IS

> FINE. ON THE SAME DAY THEY DID A MRI OF HER 6 YEAR OLD SON ANTHONY HE HAS

> MULTIPLE TUMORS ON THE LOBES OF THE BRAIN WILL HEAR FROM HIS DOCTOR

TOMORROW

> AS WHAT TO DO.

> DAUGHTER PATTY HAD A MRI AND JUST GOT HER RESULTS MONDAY NO TUMORS A

> CYST ON A LOBE THEY SAY NOT NF 2 RELATED BUT WE ARE SENDING ALL OF THE

FILMS

> TO HEI FOR THEIR OPINOUN.

> TODAY BECKY GOT THE RESULTS FROM HER MRI BILATERAL ACOUSTICS NF2 SHE

> WILL PICK UP HER FILMS TOMORROW AND THE REPORT WHEN SHE TALKED TO THE

DOCTOR

> TODAY SHE ONLY GOT THE VERBAL REPORT AND DID NOT LEARN WHAT SIZE THE

TUMORS

> ARE BUT SHE PLANS TO GO TO HEI IN AUGUST WITH HER TWO YOUNGEST SISTERS FOR

> THE SURGERY.

> I NEVER THOUGHT I WOULD BE IN THESE SHOES DEAR FRIENDS ALL OF MY

> DAUGHTERS HAVING BRAIN TUMORS THE OLDEST CATHY WE KNOW HAS A TUMOR BUT HER

> MRI WAS 4 YEARS AGO WE DO NOT KNOW WHAT TYPE IT IS SHE WILL BE SEEING THE

> DOCTOR ON THE 19th OF THIS MONTH AND GET A NEW MRI.

> WE WOULD ALL APPRECIATE YOUR PRAYERS.

> WITH LOVE AND HUGS

> CATHERINE

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I'm so sorry this has occurred !

I have some idea of what you are going through I have two boys with NF..

I cant print on the crew the way this damn NF affects my life. Like you

its not so much the ' ME ' but the 'They ' our children that

really hurt !

Haven't we all had enough ?

Your friend from OZ MARCUS

( I'll post the way I really feel inside on the SOCIAL list ! ask someone to

send it you ! )

THANKS

> DEAR CREW FRIENDS,

> THANK YOU FOR ALL OF THE LOVELY BIRTHDAY CARD. YOU ARE THE MOST

> THOUGHTFUL PEOPLE. I APPRECIATED ALL OF THEM.

> NOW TO LET ALL OF YOU KNOW A LITTLE OF WHAT IS HAPPENING IN MY LIFE....

> MOST OF YOU WILL REMEMBER IN MAY MY YOUNGEST DAUGHTER CAROLYN WAS

> DIAGNOSED WITH NF2 HAVING BILATERAL ACOUSTIC TUMORS. WE WENT TO HEI AND

HAD

> VERY SUCCESSFUL SURGERY THE TUMOR WAS 2CM AND THEY SAVED HER HEARING AND

> FACIAL NERVE.

> THIS WITH CAROLYN FINALLY MOTIVATED HER SISTERS TO HAVE MRI'S. DR

> BRACKMANN HAD BEEN TELLING ME THIS FOR SEVERAL YEARS. FIRST THE NEXT TO

THE

> YOUNGEST SARAH HAD A MRI BAD NEWS NF2 THREE TUMORS THE BILATERAL AND A

> MENGINOMA.

> MAYBE I SHOULD TELL YOU I HAVE FIVE DAUGHTERS CATHY AGE 40, BECKY AGE

> 38, PATTY AGE 36,SARAH AGE 30 AND CAROLYN AGE 29.

> WELL NEXT CAROLYN HAD TO HAVE A MRI OF THE SPINE AND PRAISE GOD IT IS

> FINE. ON THE SAME DAY THEY DID A MRI OF HER 6 YEAR OLD SON ANTHONY HE HAS

> MULTIPLE TUMORS ON THE LOBES OF THE BRAIN WILL HEAR FROM HIS DOCTOR

TOMORROW

> AS WHAT TO DO.

> DAUGHTER PATTY HAD A MRI AND JUST GOT HER RESULTS MONDAY NO TUMORS A

> CYST ON A LOBE THEY SAY NOT NF 2 RELATED BUT WE ARE SENDING ALL OF THE

FILMS

> TO HEI FOR THEIR OPINOUN.

> TODAY BECKY GOT THE RESULTS FROM HER MRI BILATERAL ACOUSTICS NF2 SHE

> WILL PICK UP HER FILMS TOMORROW AND THE REPORT WHEN SHE TALKED TO THE

DOCTOR

> TODAY SHE ONLY GOT THE VERBAL REPORT AND DID NOT LEARN WHAT SIZE THE

TUMORS

> ARE BUT SHE PLANS TO GO TO HEI IN AUGUST WITH HER TWO YOUNGEST SISTERS FOR

> THE SURGERY.

> I NEVER THOUGHT I WOULD BE IN THESE SHOES DEAR FRIENDS ALL OF MY

> DAUGHTERS HAVING BRAIN TUMORS THE OLDEST CATHY WE KNOW HAS A TUMOR BUT HER

> MRI WAS 4 YEARS AGO WE DO NOT KNOW WHAT TYPE IT IS SHE WILL BE SEEING THE

> DOCTOR ON THE 19th OF THIS MONTH AND GET A NEW MRI.

> WE WOULD ALL APPRECIATE YOUR PRAYERS.

> WITH LOVE AND HUGS

> CATHERINE

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

!

Don't get my mail to the social list forwarded to you ! Its just the same

thing I sent to the crew, only with every four letter word I could think

off.

I was just MAD as hell that this has happened to YOU, your daughters and

grandchild, my children, my friends here and every other damn thing !

I know how you feel, all us parents that have passed it on feel the same !

And I can assure you there's really not much point hitting your head against

a brick wall over it ! There is NO answer.

All the best My friend !Marcus

THANKS

> >

> >

> > > DEAR CREW FRIENDS,

> > > THANK YOU FOR ALL OF THE LOVELY BIRTHDAY CARD. YOU ARE THE MOST

> > > THOUGHTFUL PEOPLE. I APPRECIATED ALL OF THEM.

> > > NOW TO LET ALL OF YOU KNOW A LITTLE OF WHAT IS HAPPENING IN

> > MY LIFE....

> > > MOST OF YOU WILL REMEMBER IN MAY MY YOUNGEST DAUGHTER CAROLYN WAS

> > > DIAGNOSED WITH NF2 HAVING BILATERAL ACOUSTIC TUMORS. WE WENT TO HEI

AND

> > HAD

> > > VERY SUCCESSFUL SURGERY THE TUMOR WAS 2CM AND THEY SAVED HER

> > HEARING AND

> > > FACIAL NERVE.

> > > THIS WITH CAROLYN FINALLY MOTIVATED HER SISTERS TO HAVE MRI'S. DR

> > > BRACKMANN HAD BEEN TELLING ME THIS FOR SEVERAL YEARS. FIRST THE NEXT

TO

> > THE

> > > YOUNGEST SARAH HAD A MRI BAD NEWS NF2 THREE TUMORS THE BILATERAL AND

A

> > > MENGINOMA.

> > > MAYBE I SHOULD TELL YOU I HAVE FIVE DAUGHTERS CATHY AGE

> > 40, BECKY AGE

> > > 38, PATTY AGE 36,SARAH AGE 30 AND CAROLYN AGE 29.

> > > WELL NEXT CAROLYN HAD TO HAVE A MRI OF THE SPINE AND PRAISE

> > GOD IT IS

> > > FINE. ON THE SAME DAY THEY DID A MRI OF HER 6 YEAR OLD SON

> > ANTHONY HE HAS

> > > MULTIPLE TUMORS ON THE LOBES OF THE BRAIN WILL HEAR FROM HIS DOCTOR

> > TOMORROW

> > > AS WHAT TO DO.

> > > DAUGHTER PATTY HAD A MRI AND JUST GOT HER RESULTS MONDAY NO TUMORS

A

> > > CYST ON A LOBE THEY SAY NOT NF 2 RELATED BUT WE ARE SENDING ALL OF THE

> > FILMS

> > > TO HEI FOR THEIR OPINOUN.

> > > TODAY BECKY GOT THE RESULTS FROM HER MRI BILATERAL

> > ACOUSTICS NF2 SHE

> > > WILL PICK UP HER FILMS TOMORROW AND THE REPORT WHEN SHE TALKED TO THE

> > DOCTOR

> > > TODAY SHE ONLY GOT THE VERBAL REPORT AND DID NOT LEARN WHAT SIZE THE

> > TUMORS

> > > ARE BUT SHE PLANS TO GO TO HEI IN AUGUST WITH HER TWO YOUNGEST

> > SISTERS FOR

> > > THE SURGERY.

> > > I NEVER THOUGHT I WOULD BE IN THESE SHOES DEAR FRIENDS ALL OF MY

> > > DAUGHTERS HAVING BRAIN TUMORS THE OLDEST CATHY WE KNOW HAS A

> > TUMOR BUT HER

> > > MRI WAS 4 YEARS AGO WE DO NOT KNOW WHAT TYPE IT IS SHE WILL BE

> > SEEING THE

> > > DOCTOR ON THE 19th OF THIS MONTH AND GET A NEW MRI.

> > > WE WOULD ALL APPRECIATE YOUR PRAYERS.

> > > WITH LOVE AND HUGS

> > > CATHERINE

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> >

> >

> >

> >

>

>

>

>

>

[Guest guest]

!

Don't get my mail to the social list forwarded to you ! Its just the same

thing I sent to the crew, only with every four letter word I could think

off.

I was just MAD as hell that this has happened to YOU, your daughters and

grandchild, my children, my friends here and every other damn thing !

I know how you feel, all us parents that have passed it on feel the same !

And I can assure you there's really not much point hitting your head against

a brick wall over it ! There is NO answer.

All the best My friend !Marcus

THANKS

> >

> >

> > > DEAR CREW FRIENDS,

> > > THANK YOU FOR ALL OF THE LOVELY BIRTHDAY CARD. YOU ARE THE MOST

> > > THOUGHTFUL PEOPLE. I APPRECIATED ALL OF THEM.

> > > NOW TO LET ALL OF YOU KNOW A LITTLE OF WHAT IS HAPPENING IN

> > MY LIFE....

> > > MOST OF YOU WILL REMEMBER IN MAY MY YOUNGEST DAUGHTER CAROLYN WAS

> > > DIAGNOSED WITH NF2 HAVING BILATERAL ACOUSTIC TUMORS. WE WENT TO HEI

AND

> > HAD

> > > VERY SUCCESSFUL SURGERY THE TUMOR WAS 2CM AND THEY SAVED HER

> > HEARING AND

> > > FACIAL NERVE.

> > > THIS WITH CAROLYN FINALLY MOTIVATED HER SISTERS TO HAVE MRI'S. DR

> > > BRACKMANN HAD BEEN TELLING ME THIS FOR SEVERAL YEARS. FIRST THE NEXT

TO

> > THE

> > > YOUNGEST SARAH HAD A MRI BAD NEWS NF2 THREE TUMORS THE BILATERAL AND

A

> > > MENGINOMA.

> > > MAYBE I SHOULD TELL YOU I HAVE FIVE DAUGHTERS CATHY AGE

> > 40, BECKY AGE

> > > 38, PATTY AGE 36,SARAH AGE 30 AND CAROLYN AGE 29.

> > > WELL NEXT CAROLYN HAD TO HAVE A MRI OF THE SPINE AND PRAISE

> > GOD IT IS

> > > FINE. ON THE SAME DAY THEY DID A MRI OF HER 6 YEAR OLD SON

> > ANTHONY HE HAS

> > > MULTIPLE TUMORS ON THE LOBES OF THE BRAIN WILL HEAR FROM HIS DOCTOR

> > TOMORROW

> > > AS WHAT TO DO.

> > > DAUGHTER PATTY HAD A MRI AND JUST GOT HER RESULTS MONDAY NO TUMORS

A

> > > CYST ON A LOBE THEY SAY NOT NF 2 RELATED BUT WE ARE SENDING ALL OF THE

> > FILMS

> > > TO HEI FOR THEIR OPINOUN.

> > > TODAY BECKY GOT THE RESULTS FROM HER MRI BILATERAL

> > ACOUSTICS NF2 SHE

> > > WILL PICK UP HER FILMS TOMORROW AND THE REPORT WHEN SHE TALKED TO THE

> > DOCTOR

> > > TODAY SHE ONLY GOT THE VERBAL REPORT AND DID NOT LEARN WHAT SIZE THE

> > TUMORS

> > > ARE BUT SHE PLANS TO GO TO HEI IN AUGUST WITH HER TWO YOUNGEST

> > SISTERS FOR

> > > THE SURGERY.

> > > I NEVER THOUGHT I WOULD BE IN THESE SHOES DEAR FRIENDS ALL OF MY

> > > DAUGHTERS HAVING BRAIN TUMORS THE OLDEST CATHY WE KNOW HAS A

> > TUMOR BUT HER

> > > MRI WAS 4 YEARS AGO WE DO NOT KNOW WHAT TYPE IT IS SHE WILL BE

> > SEEING THE

> > > DOCTOR ON THE 19th OF THIS MONTH AND GET A NEW MRI.

> > > WE WOULD ALL APPRECIATE YOUR PRAYERS.

> > > WITH LOVE AND HUGS

> > > CATHERINE

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> >

> >

> >

> >

>

>

>

>

>

[Guest guest]

!

Don't get my mail to the social list forwarded to you ! Its just the same

thing I sent to the crew, only with every four letter word I could think

off.

I was just MAD as hell that this has happened to YOU, your daughters and

grandchild, my children, my friends here and every other damn thing !

I know how you feel, all us parents that have passed it on feel the same !

And I can assure you there's really not much point hitting your head against

a brick wall over it ! There is NO answer.

All the best My friend !Marcus

THANKS

> >

> >

> > > DEAR CREW FRIENDS,

> > > THANK YOU FOR ALL OF THE LOVELY BIRTHDAY CARD. YOU ARE THE MOST

> > > THOUGHTFUL PEOPLE. I APPRECIATED ALL OF THEM.

> > > NOW TO LET ALL OF YOU KNOW A LITTLE OF WHAT IS HAPPENING IN

> > MY LIFE....

> > > MOST OF YOU WILL REMEMBER IN MAY MY YOUNGEST DAUGHTER CAROLYN WAS

> > > DIAGNOSED WITH NF2 HAVING BILATERAL ACOUSTIC TUMORS. WE WENT TO HEI

AND

> > HAD

> > > VERY SUCCESSFUL SURGERY THE TUMOR WAS 2CM AND THEY SAVED HER

> > HEARING AND

> > > FACIAL NERVE.

> > > THIS WITH CAROLYN FINALLY MOTIVATED HER SISTERS TO HAVE MRI'S. DR

> > > BRACKMANN HAD BEEN TELLING ME THIS FOR SEVERAL YEARS. FIRST THE NEXT

TO

> > THE

> > > YOUNGEST SARAH HAD A MRI BAD NEWS NF2 THREE TUMORS THE BILATERAL AND

A

> > > MENGINOMA.

> > > MAYBE I SHOULD TELL YOU I HAVE FIVE DAUGHTERS CATHY AGE

> > 40, BECKY AGE

> > > 38, PATTY AGE 36,SARAH AGE 30 AND CAROLYN AGE 29.

> > > WELL NEXT CAROLYN HAD TO HAVE A MRI OF THE SPINE AND PRAISE

> > GOD IT IS

> > > FINE. ON THE SAME DAY THEY DID A MRI OF HER 6 YEAR OLD SON

> > ANTHONY HE HAS

> > > MULTIPLE TUMORS ON THE LOBES OF THE BRAIN WILL HEAR FROM HIS DOCTOR

> > TOMORROW

> > > AS WHAT TO DO.

> > > DAUGHTER PATTY HAD A MRI AND JUST GOT HER RESULTS MONDAY NO TUMORS

A

> > > CYST ON A LOBE THEY SAY NOT NF 2 RELATED BUT WE ARE SENDING ALL OF THE

> > FILMS

> > > TO HEI FOR THEIR OPINOUN.

> > > TODAY BECKY GOT THE RESULTS FROM HER MRI BILATERAL

> > ACOUSTICS NF2 SHE

> > > WILL PICK UP HER FILMS TOMORROW AND THE REPORT WHEN SHE TALKED TO THE

> > DOCTOR

> > > TODAY SHE ONLY GOT THE VERBAL REPORT AND DID NOT LEARN WHAT SIZE THE

> > TUMORS

> > > ARE BUT SHE PLANS TO GO TO HEI IN AUGUST WITH HER TWO YOUNGEST

> > SISTERS FOR

> > > THE SURGERY.

> > > I NEVER THOUGHT I WOULD BE IN THESE SHOES DEAR FRIENDS ALL OF MY

> > > DAUGHTERS HAVING BRAIN TUMORS THE OLDEST CATHY WE KNOW HAS A

> > TUMOR BUT HER

> > > MRI WAS 4 YEARS AGO WE DO NOT KNOW WHAT TYPE IT IS SHE WILL BE

> > SEEING THE

> > > DOCTOR ON THE 19th OF THIS MONTH AND GET A NEW MRI.

> > > WE WOULD ALL APPRECIATE YOUR PRAYERS.

> > > WITH LOVE AND HUGS

> > > CATHERINE

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> >

> >

> >

> >

>

>

>

>

>

[Guest guest]

HELLO MARCUS,

THANK YOU SO MUCH FOR THE NOTE, AS YOU KNOW IT HELPS A LOT KNOWING WE

HAVE THE FRIENDSHIP OF THE CREW, THEY UNDERSTAND HOW WE FEEL.

YES I WOULD LIKE TO HEAR HOW YOU FEEL ABOUT THIS " CURSE " I WILL ASK IF

SOMEONE CAN FORWARD IT TO ME. I HAVE SO MANY MIXED EMOTIONS AT THIS POINT IN

TIME.

I AM A CHRISTIAN AND BELIEVE SO STRONG IN GOD AND FAITH BUT RIGHT NOW I

FEEL LIKE GOD IS SO FAR AWAY AND NOT LISTENING TO ME.

YOU PUT IT RIGHT WHEN YOU SAID IN REGARD TO THE NF ITS NOT " ME " THAT I

AM UPSET ABOUT ITS " THEY " WHY GOES OVER AND OVER IN MY MIND IT HURTS BEYOND

WORDS THAT IT HAS STRUCK MY 6 YEAR OLD GRANDSON.

YOUR FRIEND,

CATHERINE

> Re: THANKS

>

>

> I'm so sorry this has occurred !

> I have some idea of what you are going through I have two boys with NF..

> I cant print on the crew the way this damn NF affects my life. Like you

> its not so much the ' ME ' but the 'They ' our children that

> really hurt !

> Haven't we all had enough ?

> Your friend from OZ MARCUS

> ( I'll post the way I really feel inside on the SOCIAL list ! ask

> someone to

> send it you ! )

> THANKS

>

>

> > DEAR CREW FRIENDS,

> > THANK YOU FOR ALL OF THE LOVELY BIRTHDAY CARD. YOU ARE THE MOST

> > THOUGHTFUL PEOPLE. I APPRECIATED ALL OF THEM.

> > NOW TO LET ALL OF YOU KNOW A LITTLE OF WHAT IS HAPPENING IN

> MY LIFE....

> > MOST OF YOU WILL REMEMBER IN MAY MY YOUNGEST DAUGHTER CAROLYN WAS

> > DIAGNOSED WITH NF2 HAVING BILATERAL ACOUSTIC TUMORS. WE WENT TO HEI AND

> HAD

> > VERY SUCCESSFUL SURGERY THE TUMOR WAS 2CM AND THEY SAVED HER

> HEARING AND

> > FACIAL NERVE.

> > THIS WITH CAROLYN FINALLY MOTIVATED HER SISTERS TO HAVE MRI'S. DR

> > BRACKMANN HAD BEEN TELLING ME THIS FOR SEVERAL YEARS. FIRST THE NEXT TO

> THE

> > YOUNGEST SARAH HAD A MRI BAD NEWS NF2 THREE TUMORS THE BILATERAL AND A

> > MENGINOMA.

> > MAYBE I SHOULD TELL YOU I HAVE FIVE DAUGHTERS CATHY AGE

> 40, BECKY AGE

> > 38, PATTY AGE 36,SARAH AGE 30 AND CAROLYN AGE 29.

> > WELL NEXT CAROLYN HAD TO HAVE A MRI OF THE SPINE AND PRAISE

> GOD IT IS

> > FINE. ON THE SAME DAY THEY DID A MRI OF HER 6 YEAR OLD SON

> ANTHONY HE HAS

> > MULTIPLE TUMORS ON THE LOBES OF THE BRAIN WILL HEAR FROM HIS DOCTOR

> TOMORROW

> > AS WHAT TO DO.

> > DAUGHTER PATTY HAD A MRI AND JUST GOT HER RESULTS MONDAY NO TUMORS A

> > CYST ON A LOBE THEY SAY NOT NF 2 RELATED BUT WE ARE SENDING ALL OF THE

> FILMS

> > TO HEI FOR THEIR OPINOUN.

> > TODAY BECKY GOT THE RESULTS FROM HER MRI BILATERAL

> ACOUSTICS NF2 SHE

> > WILL PICK UP HER FILMS TOMORROW AND THE REPORT WHEN SHE TALKED TO THE

> DOCTOR

> > TODAY SHE ONLY GOT THE VERBAL REPORT AND DID NOT LEARN WHAT SIZE THE

> TUMORS

> > ARE BUT SHE PLANS TO GO TO HEI IN AUGUST WITH HER TWO YOUNGEST

> SISTERS FOR

> > THE SURGERY.

> > I NEVER THOUGHT I WOULD BE IN THESE SHOES DEAR FRIENDS ALL OF MY

> > DAUGHTERS HAVING BRAIN TUMORS THE OLDEST CATHY WE KNOW HAS A

> TUMOR BUT HER

> > MRI WAS 4 YEARS AGO WE DO NOT KNOW WHAT TYPE IT IS SHE WILL BE

> SEEING THE

> > DOCTOR ON THE 19th OF THIS MONTH AND GET A NEW MRI.

> > WE WOULD ALL APPRECIATE YOUR PRAYERS.

> > WITH LOVE AND HUGS

> > CATHERINE

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

>

>

>

>

>

[Guest guest]

HELLO MARCUS,

THANK YOU SO MUCH FOR THE NOTE, AS YOU KNOW IT HELPS A LOT KNOWING WE

HAVE THE FRIENDSHIP OF THE CREW, THEY UNDERSTAND HOW WE FEEL.

YES I WOULD LIKE TO HEAR HOW YOU FEEL ABOUT THIS " CURSE " I WILL ASK IF

SOMEONE CAN FORWARD IT TO ME. I HAVE SO MANY MIXED EMOTIONS AT THIS POINT IN

TIME.

I AM A CHRISTIAN AND BELIEVE SO STRONG IN GOD AND FAITH BUT RIGHT NOW I

FEEL LIKE GOD IS SO FAR AWAY AND NOT LISTENING TO ME.

YOU PUT IT RIGHT WHEN YOU SAID IN REGARD TO THE NF ITS NOT " ME " THAT I

AM UPSET ABOUT ITS " THEY " WHY GOES OVER AND OVER IN MY MIND IT HURTS BEYOND

WORDS THAT IT HAS STRUCK MY 6 YEAR OLD GRANDSON.

YOUR FRIEND,

CATHERINE

> Re: THANKS

>

>

> I'm so sorry this has occurred !

> I have some idea of what you are going through I have two boys with NF..

> I cant print on the crew the way this damn NF affects my life. Like you

> its not so much the ' ME ' but the 'They ' our children that

> really hurt !

> Haven't we all had enough ?

> Your friend from OZ MARCUS

> ( I'll post the way I really feel inside on the SOCIAL list ! ask

> someone to

> send it you ! )

> THANKS

>

>

> > DEAR CREW FRIENDS,

> > THANK YOU FOR ALL OF THE LOVELY BIRTHDAY CARD. YOU ARE THE MOST

> > THOUGHTFUL PEOPLE. I APPRECIATED ALL OF THEM.

> > NOW TO LET ALL OF YOU KNOW A LITTLE OF WHAT IS HAPPENING IN

> MY LIFE....

> > MOST OF YOU WILL REMEMBER IN MAY MY YOUNGEST DAUGHTER CAROLYN WAS

> > DIAGNOSED WITH NF2 HAVING BILATERAL ACOUSTIC TUMORS. WE WENT TO HEI AND

> HAD

> > VERY SUCCESSFUL SURGERY THE TUMOR WAS 2CM AND THEY SAVED HER

> HEARING AND

> > FACIAL NERVE.

> > THIS WITH CAROLYN FINALLY MOTIVATED HER SISTERS TO HAVE MRI'S. DR

> > BRACKMANN HAD BEEN TELLING ME THIS FOR SEVERAL YEARS. FIRST THE NEXT TO

> THE

> > YOUNGEST SARAH HAD A MRI BAD NEWS NF2 THREE TUMORS THE BILATERAL AND A

> > MENGINOMA.

> > MAYBE I SHOULD TELL YOU I HAVE FIVE DAUGHTERS CATHY AGE

> 40, BECKY AGE

> > 38, PATTY AGE 36,SARAH AGE 30 AND CAROLYN AGE 29.

> > WELL NEXT CAROLYN HAD TO HAVE A MRI OF THE SPINE AND PRAISE

> GOD IT IS

> > FINE. ON THE SAME DAY THEY DID A MRI OF HER 6 YEAR OLD SON

> ANTHONY HE HAS

> > MULTIPLE TUMORS ON THE LOBES OF THE BRAIN WILL HEAR FROM HIS DOCTOR

> TOMORROW

> > AS WHAT TO DO.

> > DAUGHTER PATTY HAD A MRI AND JUST GOT HER RESULTS MONDAY NO TUMORS A

> > CYST ON A LOBE THEY SAY NOT NF 2 RELATED BUT WE ARE SENDING ALL OF THE

> FILMS

> > TO HEI FOR THEIR OPINOUN.

> > TODAY BECKY GOT THE RESULTS FROM HER MRI BILATERAL

> ACOUSTICS NF2 SHE

> > WILL PICK UP HER FILMS TOMORROW AND THE REPORT WHEN SHE TALKED TO THE

> DOCTOR

> > TODAY SHE ONLY GOT THE VERBAL REPORT AND DID NOT LEARN WHAT SIZE THE

> TUMORS

> > ARE BUT SHE PLANS TO GO TO HEI IN AUGUST WITH HER TWO YOUNGEST

> SISTERS FOR

> > THE SURGERY.

> > I NEVER THOUGHT I WOULD BE IN THESE SHOES DEAR FRIENDS ALL OF MY

> > DAUGHTERS HAVING BRAIN TUMORS THE OLDEST CATHY WE KNOW HAS A

> TUMOR BUT HER

> > MRI WAS 4 YEARS AGO WE DO NOT KNOW WHAT TYPE IT IS SHE WILL BE

> SEEING THE

> > DOCTOR ON THE 19th OF THIS MONTH AND GET A NEW MRI.

> > WE WOULD ALL APPRECIATE YOUR PRAYERS.

> > WITH LOVE AND HUGS

> > CATHERINE

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

>

>

>

>

>

[Guest guest]

,

I have not posted to the Crew in a while, but could not let this go

without commenting. I am SO SORRY to hear about your children. That

is what hurts the worse. I am sitting here trying to find the words

to say, and there are none. I have a 14 year old son that has

bilateral acoustics and vision problems. All that this crappy

disease is handing me would be tolerable if it would have just left

my child alone!!

I am sorry,

Donna

> DEAR CREW FRIENDS,

> THANK YOU FOR ALL OF THE LOVELY BIRTHDAY CARD. YOU ARE THE MOST

> THOUGHTFUL PEOPLE. I APPRECIATED ALL OF THEM.

> NOW TO LET ALL OF YOU KNOW A LITTLE OF WHAT IS HAPPENING IN MY

LIFE....

> MOST OF YOU WILL REMEMBER IN MAY MY YOUNGEST DAUGHTER CAROLYN WAS

> DIAGNOSED WITH NF2 HAVING BILATERAL ACOUSTIC TUMORS. WE WENT TO HEI

AND HAD

> VERY SUCCESSFUL SURGERY THE TUMOR WAS 2CM AND THEY SAVED HER

HEARING AND

> FACIAL NERVE.

> THIS WITH CAROLYN FINALLY MOTIVATED HER SISTERS TO HAVE MRI'S.

DR

> BRACKMANN HAD BEEN TELLING ME THIS FOR SEVERAL YEARS. FIRST THE

NEXT TO THE

> YOUNGEST SARAH HAD A MRI BAD NEWS NF2 THREE TUMORS THE BILATERAL

AND A

> MENGINOMA.

> MAYBE I SHOULD TELL YOU I HAVE FIVE DAUGHTERS CATHY AGE 40,

BECKY AGE

> 38, PATTY AGE 36,SARAH AGE 30 AND CAROLYN AGE 29.

> WELL NEXT CAROLYN HAD TO HAVE A MRI OF THE SPINE AND PRAISE GOD

IT IS

> FINE. ON THE SAME DAY THEY DID A MRI OF HER 6 YEAR OLD SON ANTHONY

HE HAS

> MULTIPLE TUMORS ON THE LOBES OF THE BRAIN WILL HEAR FROM HIS DOCTOR

TOMORROW

> AS WHAT TO DO.

> DAUGHTER PATTY HAD A MRI AND JUST GOT HER RESULTS MONDAY NO

TUMORS A

> CYST ON A LOBE THEY SAY NOT NF 2 RELATED BUT WE ARE SENDING ALL OF

THE FILMS

> TO HEI FOR THEIR OPINOUN.

> TODAY BECKY GOT THE RESULTS FROM HER MRI BILATERAL ACOUSTICS

NF2 SHE

> WILL PICK UP HER FILMS TOMORROW AND THE REPORT WHEN SHE TALKED TO

THE DOCTOR

> TODAY SHE ONLY GOT THE VERBAL REPORT AND DID NOT LEARN WHAT SIZE

THE TUMORS

> ARE BUT SHE PLANS TO GO TO HEI IN AUGUST WITH HER TWO YOUNGEST

SISTERS FOR

> THE SURGERY.

> I NEVER THOUGHT I WOULD BE IN THESE SHOES DEAR FRIENDS ALL OF

MY

> DAUGHTERS HAVING BRAIN TUMORS THE OLDEST CATHY WE KNOW HAS A TUMOR

BUT HER

> MRI WAS 4 YEARS AGO WE DO NOT KNOW WHAT TYPE IT IS SHE WILL BE

SEEING THE

> DOCTOR ON THE 19th OF THIS MONTH AND GET A NEW MRI.

> WE WOULD ALL APPRECIATE YOUR PRAYERS.

> WITH LOVE AND HUGS

> CATHERINE

[Guest guest]

,

I have not posted to the Crew in a while, but could not let this go

without commenting. I am SO SORRY to hear about your children. That

is what hurts the worse. I am sitting here trying to find the words

to say, and there are none. I have a 14 year old son that has

bilateral acoustics and vision problems. All that this crappy

disease is handing me would be tolerable if it would have just left

my child alone!!

I am sorry,

Donna

> DEAR CREW FRIENDS,

> THANK YOU FOR ALL OF THE LOVELY BIRTHDAY CARD. YOU ARE THE MOST

> THOUGHTFUL PEOPLE. I APPRECIATED ALL OF THEM.

> NOW TO LET ALL OF YOU KNOW A LITTLE OF WHAT IS HAPPENING IN MY

LIFE....

> MOST OF YOU WILL REMEMBER IN MAY MY YOUNGEST DAUGHTER CAROLYN WAS

> DIAGNOSED WITH NF2 HAVING BILATERAL ACOUSTIC TUMORS. WE WENT TO HEI

AND HAD

> VERY SUCCESSFUL SURGERY THE TUMOR WAS 2CM AND THEY SAVED HER

HEARING AND

> FACIAL NERVE.

> THIS WITH CAROLYN FINALLY MOTIVATED HER SISTERS TO HAVE MRI'S.

DR

> BRACKMANN HAD BEEN TELLING ME THIS FOR SEVERAL YEARS. FIRST THE

NEXT TO THE

> YOUNGEST SARAH HAD A MRI BAD NEWS NF2 THREE TUMORS THE BILATERAL

AND A

> MENGINOMA.

> MAYBE I SHOULD TELL YOU I HAVE FIVE DAUGHTERS CATHY AGE 40,

BECKY AGE

> 38, PATTY AGE 36,SARAH AGE 30 AND CAROLYN AGE 29.

> WELL NEXT CAROLYN HAD TO HAVE A MRI OF THE SPINE AND PRAISE GOD

IT IS

> FINE. ON THE SAME DAY THEY DID A MRI OF HER 6 YEAR OLD SON ANTHONY

HE HAS

> MULTIPLE TUMORS ON THE LOBES OF THE BRAIN WILL HEAR FROM HIS DOCTOR

TOMORROW

> AS WHAT TO DO.

> DAUGHTER PATTY HAD A MRI AND JUST GOT HER RESULTS MONDAY NO

TUMORS A

> CYST ON A LOBE THEY SAY NOT NF 2 RELATED BUT WE ARE SENDING ALL OF

THE FILMS

> TO HEI FOR THEIR OPINOUN.

> TODAY BECKY GOT THE RESULTS FROM HER MRI BILATERAL ACOUSTICS

NF2 SHE

> WILL PICK UP HER FILMS TOMORROW AND THE REPORT WHEN SHE TALKED TO

THE DOCTOR

> TODAY SHE ONLY GOT THE VERBAL REPORT AND DID NOT LEARN WHAT SIZE

THE TUMORS

> ARE BUT SHE PLANS TO GO TO HEI IN AUGUST WITH HER TWO YOUNGEST

SISTERS FOR

> THE SURGERY.

> I NEVER THOUGHT I WOULD BE IN THESE SHOES DEAR FRIENDS ALL OF

MY

> DAUGHTERS HAVING BRAIN TUMORS THE OLDEST CATHY WE KNOW HAS A TUMOR

BUT HER

> MRI WAS 4 YEARS AGO WE DO NOT KNOW WHAT TYPE IT IS SHE WILL BE

SEEING THE

> DOCTOR ON THE 19th OF THIS MONTH AND GET A NEW MRI.

> WE WOULD ALL APPRECIATE YOUR PRAYERS.

> WITH LOVE AND HUGS

> CATHERINE

[Guest guest]

,

I have not posted to the Crew in a while, but could not let this go

without commenting. I am SO SORRY to hear about your children. That

is what hurts the worse. I am sitting here trying to find the words

to say, and there are none. I have a 14 year old son that has

bilateral acoustics and vision problems. All that this crappy

disease is handing me would be tolerable if it would have just left

my child alone!!

I am sorry,

Donna

> DEAR CREW FRIENDS,

> THANK YOU FOR ALL OF THE LOVELY BIRTHDAY CARD. YOU ARE THE MOST

> THOUGHTFUL PEOPLE. I APPRECIATED ALL OF THEM.

> NOW TO LET ALL OF YOU KNOW A LITTLE OF WHAT IS HAPPENING IN MY

LIFE....

> MOST OF YOU WILL REMEMBER IN MAY MY YOUNGEST DAUGHTER CAROLYN WAS

> DIAGNOSED WITH NF2 HAVING BILATERAL ACOUSTIC TUMORS. WE WENT TO HEI

AND HAD

> VERY SUCCESSFUL SURGERY THE TUMOR WAS 2CM AND THEY SAVED HER

HEARING AND

> FACIAL NERVE.

> THIS WITH CAROLYN FINALLY MOTIVATED HER SISTERS TO HAVE MRI'S.

DR

> BRACKMANN HAD BEEN TELLING ME THIS FOR SEVERAL YEARS. FIRST THE

NEXT TO THE

> YOUNGEST SARAH HAD A MRI BAD NEWS NF2 THREE TUMORS THE BILATERAL

AND A

> MENGINOMA.

> MAYBE I SHOULD TELL YOU I HAVE FIVE DAUGHTERS CATHY AGE 40,

BECKY AGE

> 38, PATTY AGE 36,SARAH AGE 30 AND CAROLYN AGE 29.

> WELL NEXT CAROLYN HAD TO HAVE A MRI OF THE SPINE AND PRAISE GOD

IT IS

> FINE. ON THE SAME DAY THEY DID A MRI OF HER 6 YEAR OLD SON ANTHONY

HE HAS

> MULTIPLE TUMORS ON THE LOBES OF THE BRAIN WILL HEAR FROM HIS DOCTOR

TOMORROW

> AS WHAT TO DO.

> DAUGHTER PATTY HAD A MRI AND JUST GOT HER RESULTS MONDAY NO

TUMORS A

> CYST ON A LOBE THEY SAY NOT NF 2 RELATED BUT WE ARE SENDING ALL OF

THE FILMS

> TO HEI FOR THEIR OPINOUN.

> TODAY BECKY GOT THE RESULTS FROM HER MRI BILATERAL ACOUSTICS

NF2 SHE

> WILL PICK UP HER FILMS TOMORROW AND THE REPORT WHEN SHE TALKED TO

THE DOCTOR

> TODAY SHE ONLY GOT THE VERBAL REPORT AND DID NOT LEARN WHAT SIZE

THE TUMORS

> ARE BUT SHE PLANS TO GO TO HEI IN AUGUST WITH HER TWO YOUNGEST

SISTERS FOR

> THE SURGERY.

> I NEVER THOUGHT I WOULD BE IN THESE SHOES DEAR FRIENDS ALL OF

MY

> DAUGHTERS HAVING BRAIN TUMORS THE OLDEST CATHY WE KNOW HAS A TUMOR

BUT HER

> MRI WAS 4 YEARS AGO WE DO NOT KNOW WHAT TYPE IT IS SHE WILL BE

SEEING THE

> DOCTOR ON THE 19th OF THIS MONTH AND GET A NEW MRI.

> WE WOULD ALL APPRECIATE YOUR PRAYERS.

> WITH LOVE AND HUGS

> CATHERINE

[Guest guest]

,

I am a strong Christian myself --- having NF is really hard -- but I know God

will hold up to his promise and protect you and your family. I know it seems

ironic about having the NF, but He will send angels to you. This summer I am

up for a decision as to what to do with my right sided tumor (I have

Bilateral Acoustic Neuroma), the right side keeps growing and growing.

Myself, I have an 8-year-old and I am scared to death to get him tested. Oh

my gosh, 6-years-old is so young, my heart goes out to you all.

Love and blessings, Sally

[Guest guest]

,

I am a strong Christian myself --- having NF is really hard -- but I know God

will hold up to his promise and protect you and your family. I know it seems

ironic about having the NF, but He will send angels to you. This summer I am

up for a decision as to what to do with my right sided tumor (I have

Bilateral Acoustic Neuroma), the right side keeps growing and growing.

Myself, I have an 8-year-old and I am scared to death to get him tested. Oh

my gosh, 6-years-old is so young, my heart goes out to you all.

Love and blessings, Sally

[Guest guest]

Hi Marcus,

I'm not sure if I believe in a 'curse' because God is a loving God, I know it

does talk about a curse in the Ten Commandments, God could've sent another

type of curse other than NF (ignorance, jealousy). When I was a child I was

known not to be the sweetest to my second to oldest sister (guess she still

harbors that) but she was 5 years older than me and could deliver sever

nougies.

Jesus Christ does hear my prayers, tears and cries to him. He does he give me

wisdom out of situation, and it's my decision to get my butt in gear and act

on that knowledge. I believe that this illness created to draw his creatures

closer to eachother. I'd have never known you all, had a more softer heart

towards you, without these things that we are all encountered with.

Strongly loving another, that care, that's what God wants.

On another note, how did you get the courage to take your kids in to get

checked? Do your kids go to counseling? I've had my son coming with me on and

off (for himself too) since he was 3-years-old. He and I communicate really

well and that's how I want it to be. I was asking her in fact today if

something happens to me (my face being paralyzed), how much I want to

continue to interact with Garrett and his friends/parents. She said to me

that it was a matter of staying in touch with them, seeing them at the kids

things, so that helped me to feel better.

Love, Sally

[Guest guest]

Sally !

Look we found out my eldest boy had NF at age 4, in fact we already knew

this he has a small bump on his back, One of those skin things !

Sadly age 6 is not young to know he has NF or not !

All I can say is that really sometimes its best not to know from your point

of view !An MRi can be a long look into the future. And I tell you what you

may discover can really hurt your heart, soul and Christian beliefs or what

ever. I still believe in God but have certainly modified the finer points !

I sure don't go to any meetings that tell me I'll walk out cured ( any

more ). None of us need to be told we are at fault. And that's about all

they can do to pass us by.

We all need something, I still need God, I just leave the HUMAN touch out of

it ! So much nicer.

Marcus

To: <NF2_Crewegroups>

Sent: Friday, July 07, 2000 5:19 AM

Subject: Re: THANKS

> ,

>

> I am a strong Christian myself --- having NF is really hard -- but I know

God

> will hold up to his promise and protect you and your family. I know it

seems

> ironic about having the NF, but He will send angels to you. This summer I

am

> up for a decision as to what to do with my right sided tumor (I have

> Bilateral Acoustic Neuroma), the right side keeps growing and growing.

>

> Myself, I have an 8-year-old and I am scared to death to get him tested.

Oh

> my gosh, 6-years-old is so young, my heart goes out to you all.

>

> Love and blessings, Sally

>

>

>

>

[Guest guest]

Sally !

Look we found out my eldest boy had NF at age 4, in fact we already knew

this he has a small bump on his back, One of those skin things !

Sadly age 6 is not young to know he has NF or not !

All I can say is that really sometimes its best not to know from your point

of view !An MRi can be a long look into the future. And I tell you what you

may discover can really hurt your heart, soul and Christian beliefs or what

ever. I still believe in God but have certainly modified the finer points !

I sure don't go to any meetings that tell me I'll walk out cured ( any

more ). None of us need to be told we are at fault. And that's about all

they can do to pass us by.

We all need something, I still need God, I just leave the HUMAN touch out of

it ! So much nicer.

Marcus

To: <NF2_Crewegroups>

Sent: Friday, July 07, 2000 5:19 AM

Subject: Re: THANKS

> ,

>

> I am a strong Christian myself --- having NF is really hard -- but I know

God

> will hold up to his promise and protect you and your family. I know it

seems

> ironic about having the NF, but He will send angels to you. This summer I

am

> up for a decision as to what to do with my right sided tumor (I have

> Bilateral Acoustic Neuroma), the right side keeps growing and growing.

>

> Myself, I have an 8-year-old and I am scared to death to get him tested.

Oh

> my gosh, 6-years-old is so young, my heart goes out to you all.

>

> Love and blessings, Sally

>

>

>

>

[Guest guest]

Sally !

Look we found out my eldest boy had NF at age 4, in fact we already knew

this he has a small bump on his back, One of those skin things !

Sadly age 6 is not young to know he has NF or not !

All I can say is that really sometimes its best not to know from your point

of view !An MRi can be a long look into the future. And I tell you what you

may discover can really hurt your heart, soul and Christian beliefs or what

ever. I still believe in God but have certainly modified the finer points !

I sure don't go to any meetings that tell me I'll walk out cured ( any

more ). None of us need to be told we are at fault. And that's about all

they can do to pass us by.

We all need something, I still need God, I just leave the HUMAN touch out of

it ! So much nicer.

Marcus

To: <NF2_Crewegroups>

Sent: Friday, July 07, 2000 5:19 AM

Subject: Re: THANKS

> ,

>

> I am a strong Christian myself --- having NF is really hard -- but I know

God

> will hold up to his promise and protect you and your family. I know it

seems

> ironic about having the NF, but He will send angels to you. This summer I

am

> up for a decision as to what to do with my right sided tumor (I have

> Bilateral Acoustic Neuroma), the right side keeps growing and growing.

>

> Myself, I have an 8-year-old and I am scared to death to get him tested.

Oh

> my gosh, 6-years-old is so young, my heart goes out to you all.

>

> Love and blessings, Sally

>

>

>

>

[Guest guest]

Dear Marcus and :

I share your frustration, anger, and grief over this disorder affecting our

children. But don't beat your heads against the wall because our daughter's

is a spontaneous mutation. S--- happens inherited or not. Vicki

[Guest guest]

Sally,

I have to agree with Marcus on this. My son had a large tumor on his right

optic nerve that would have surely killed him if he had not been diagnosed

early. His first tumor removal surgery was at age 5. His vision problems

and the fact that I had been diagnosed the year before is why we caught it.

Myself, I am glad I didn't know until I was 25, but I thank God every day

that we knew for Lee.

Donna