Your permission please...

[Guest guest]

Dear Crew,

Does anyone here have any problems with me printing out e mails from this

site and mailing copies to my brother and his wife. You all have done a

fantastic job saying both, yes you would tell, or no you wouldn't. And

both sides have expressed it allot better then I could say it to my

brother. I could try and cross out or maybe white out all e mail names

and addresses.

Thanks again,

JD in AZ

On Thu, 21 Jun 2001 09:41:37 US/Eastern cinnyd@... writes:

> I like the way you guys think. I just wanted to add my 2 cents about

> how kids

> think. This was for me anyhow, I'm sure everyone is different. I was

> 14 when I

> was diagnosed a serious life threatening tumor on c2,3 in neck. no

> one knew it

> was nf2, but we knew it was 'something' my parents never said

> anything that

> made me think i'd die young or had a serious problem , but in my

> mind i

> believed this. i was very scared and depressed and use to say " i

> wont live to

> be 30 " thefear was prolly from not knowing what i had. i also used

> to go for

> longg walks on the shore where we lived 3 times a day becuz i wud

> think id be

> in a wheel chair one day. i'm 32 and still alive and walk fine,

> albeit slow ;-)

> took me years on my own to deal with the fear to keep it at a

> rational level.

> My mom once even hid a letterfrom my dr that abt me, him explaining

> how tumors

> cud recur in brain etc. of course i snooped and found it and the

> fact that she

> hid it tormented me a long time. i forgive her but that was wrong.

> kids need

> to be told the facts so they can learn to accept them and be an

> educated adult

> (about their condition), they are not kids for long.

>

>

>

>

>

> Bette,

> > I don't like to watch and wait either. It is not my style. I

> want to

> know> everything, but there are even crew members, I believe, that

> prefer to

> wat> ch and wait. I was very upset with my sons last retina

> specialist when I

> a> sked him at that time why he didn't tell us Nick could have a

> hamartoma

> and> that he had a tumor in his neck and probably NF. He said "

> well, there

> wo> uld have been symptoms so they could tell there was another

> tumor. "

> Sure,> by which time my son could have been paralyzed or who knows

> what else

> by

> t> he schwannoma that was growing in his neck. This was another

> doctor who

> di> dn't like being shown that he was wrong. My sons pediatric

> ophthalmologist> told us this doctor called him and said " what the

> hell did

> you tell these

> > people " . We aren't going to that retina specialist anymore.

> >

> > I'm sure it was hard for you to hear your son ask if you were glad

> you had

> > him as you said the other day. Your son is 16 I think you said

> and I'm

> sur> e by the time Nick is that old in nine years we will talk more

> in detail

> wi> th Nick about his NF2. Nick said something yesterday about his

> having a

> tu> mor removed. I don't know if he realizes most kids in general

> don't have

> t> umors removed. He also said the other day he wishes he would

> live a long

> t> ime. I'm hoping that was just a wish a seven year old kid would

> make and

> t> hat he is not worried that he won't live a long time. We

> certainly

> haven't> told him anything like that. You also said how hard it

> was to watch

> your

> > child be wheeled away to surgery. I will always have the picture

> in my

> min> d of my son as the doctors and nurses walked him down a hall to

> surgery

> and> we couldn't go with him. I had to work very hard to try to

> not let him

> se> e me cry.

> >

> >

> >

> > Re: Bette

> >

> >

> > I understand your point, , but these folks aren " t

> " watching, " They

> a> re

> > burying their heads in the sand hoping nothing turns up.

> Meanwhile

> scads> of

> > tumors could be growing. By the time the kid is symptomatic,

> ANs could

> b> e

> > too large to save hearing and facial nerve.

> >

> > If folks want to be in denial about THEMSELVES and pretend it

> isn;'t

> > happening, that is fine by me, but the kids? They deserve

> better

> parenti> ng.

> >

> > Bette

> >