Daughter's surgery

[Guest guest]

Hi all,

My daughter, , came thru her surgery today just fine. They put

a band around her cervix to keep it from opening. Her doctor thinks

she may go at least 30 weeks before the babies will be delivered.

She was tired, but feeling ok--she had been worried about being awake

for the surgery which was done with an epidural, but said she really

didn't feel much of anything, thanks to the Valium! TJ spent the

night with us, and watched " WIZOFOZ " (The Wizard of Oz) on his Papa

Ron's lap. This morning he had a long story for his daycare teacher

about " Therewasastormanditrainedand (breath)

Dorfy'shousewentupintheskyandthewitchrodebyonherbroom. "

Translation: There was a storm and it rained and Dorfy's house went

up in the sky and the witch rode by on her brom. " Not bad from a 2-

year old!

Thanks for all your prayers. I know it wasn't a serious surgery, but

those 3 precious babies are always a concern along with their

mother. All are fine right now.

Judi in IN

[Guest guest]

Hi,

My name is Caryn. I told my daughter that I was going to look for a support group,,,because she is having her 5th surgery on November 6th,,,and I need support from people that have "been there"..She is 11 and is so horrified of the idea of having another surgery,,(not that I blame her). I just bought her a Mac Notebook cuz I feel so bad; does she "need" a Mac Notebook? Hell no, but I have to give her something to look forward to; feel happy about...she keeps saying, "Don't you feel sorry for me?", "why did God give this to me?",,,ugh,,,how do I answer these questions? I child this age cannot put things in perspective..Cancer would be worse,,,isn't what she understands, or wants to hear. Ok,,,so we are 2 weeks away from surgery and I am starting to feel sorry for myself, putting negative scenarios in my head....what if she (God forbid) dies in surgery...this is a 4 hour procedure..you think after 4 surgeries

I would be comforted and have a little confidence that it will all be ok...but it doesn't work like that,,,each time is like the first time. Things happen, unfortunately. I just pray everytime that it will all be OK. Gotta get her up for school, will write her history later.

[Guest guest]

Hi Caryn,

My daughter is the one having the surgery also, she is almost 6 (next month) and

her surgery is Monday. I had the whole guilt thing going at first, " why did

this happen? Did I do something? Why did God let this happen to MY baby???? "

Okay, I AM a praying woman, and in my heart and head, I know God didn't let this

happen, sometimes things happen... and you are right, there is no fighting with

an 11 year old and no matter how much you explain it to them, they just don't

get it. As you said, does she NEED a Mac notebook? Probably not, but can she

benefit from it for school later? Probably, so the purchase wasn't in vain...

Sometimes we have to do things for our kids simply for their comfort and to keep

OUR hearts and minds at peace... and that is okay. The people on here have been

so supportive and kind to me when I first found this group and was beating

myself up about my daughter's condition. They told me not to, it's not my

fault, just take

care of my little girl, love her, give her the things she needs right now,

because well, she needs them.

So that is my suggestion to you, love her, take care of her and do what you need

to as a mom... and come here as often as you need to.

Pam

Pamela Waling " smile, it confuses people... "

> From: Caryn Fish <caryn.fish@...>

> Subject: RE: Daughter's surgery

> cholesteatoma

> Date: Thursday, October 23, 2008, 6:26 AM

> Hi,

>  

>    My name is Caryn.  I told my daughter that I was

> going to look for a support group,,,because she is having

> her 5th surgery on November 6th,,,and I need support from

> people that have " been there " ..She is 11 and is so

> horrified of the idea of having another surgery,,(not that I

> blame her).  I just bought her a Mac Notebook cuz I feel so

> bad; does she " need " a Mac Notebook?  Hell no,

> but I have to give her something to look forward to; feel

> happy about...she keeps saying, " Don't you feel

> sorry for me? " , " why did God give this to

> me? " ,,,ugh,,,how do I answer these questions?  I child

> this age cannot put things in perspective..Cancer would be

> worse,,,isn't what she understands, or wants to hear. 

> Ok,,,so we are 2 weeks away from surgery and I am starting

> to feel sorry for myself, putting negative scenarios in my

> head....what if she (God forbid) dies in surgery...this is a

> 4 hour procedure..you think after 4 surgeries I would be

> comforted and have a

> little confidence that it will all be ok...but it

> doesn't work like that,,,each time is like the first

> time.  Things happen, unfortunately.  I just pray

> everytime that it will all be OK.  Gotta get her up for

> school, will write her history later. 

>  

>        

[Guest guest]

Hi Caryn

My heart went out to you and your daughter when I read your

message and I’ve been sat here wondering how best to reply – if I

could. Some of my answer is just thoughts/ramblings, but some is factual

too, so forgive me please, if it’s not what you want to hear. I

didn’t suffer from ear problems as a child, and wasn’t diagnosed with

cholesteatoma until I was 37 after years of infections and perforations as an

adult so I am not really able to see things from a child’s perspective.

I don’t think anyone here can state definitively why your

daughter has this problem and not the person across the way, or down the road,

or in the next town. We’re just folks who have been through it, or

whose children have been through it... and besides, though there are some things

that are thought to be contributory factors (Eustachian Tube Dysfunction, allergies,

etc.), I don’t think even the specialists have a definitive answer as to

why some people get cholesteatoma whilst others don’t. If they knew

for sure the cause(s) of it, I’m sure we would all do everything possible

to avoid it.

Some people might explain loosely to a child of her age that she

got it because she is a stronger person and more able to cope with it than

others might be able to. Your daughter clearly has a mother who loves her

deeply; likely your daughter has a good support network in her friends and family,

and these people may be able to help her through the time she will need to

recover from the surgery.

There are also some who might explain to their child just that it’s

a case of pure chance – that it’s nothing she or her parents have

done, that it’s just down to chance.

Your daughter might want to know that she can actively take a

role in helping to reduce the chances or severity of any recurrence by not using

cotton buds deep in her ears, by not getting water in her ear (by perhaps wearing

ear plugs when swimming/showering, etc.). Attending check-ups regularly

might ensure that if there were a recurrence, it could be nipped in the bud, so

to speak. If she feels she is helping herself this way, she may feel a

little better about things.

You might wish to explain to her (and to bear in mind for your

own sanity, too) that it’s okay to feel angry, afraid, low – even depressed

– and alone in our suffering; I think we all go through those emotions –

I know I did! However, there is good that can come from this, too, though

it may not be obvious at first: by her talking openly about how she feels, you may

feel you are growing closer through this experience, spending time together

chatting, cuddling, laughing and joking, sharing special moments as she recovers

that you perhaps might not otherwise have.

What I do know is that I wish you and your daughter well as you

approach this surgery. Remember, please, that neither your daughter nor you

are alone with this – you’ve found a great place to vent and seek

advice and support.

My best wishes to you and your family.

Kazzy J

From: cholesteatoma

[mailto:cholesteatoma ] On Behalf Of Caryn Fish

Sent: 23 October 2008 12:26

cholesteatoma

Subject: RE: Daughter's surgery

Hi,

My name is Caryn. I told my daughter

that I was going to look for a support group,,,because she is having her 5th

surgery on November 6th,,,and I need support from people that have " been

there " ..She is 11 and is so horrified of the idea of having another

surgery,,(not that I blame her). I just bought her a Mac Notebook cuz I

feel so bad; does she " need " a Mac Notebook? Hell no, but I

have to give her something to look forward to; feel happy about...she keeps

saying, " Don't you feel sorry for me? " , " why did God give this

to me? " ,,,ugh,,,how do I answer these questions? I child this age

cannot put things in perspective..Cancer would be worse,,,isn't what she

understands, or wants to hear. Ok,,,so we are 2 weeks away from surgery

and I am starting to feel sorry for myself, putting negative scenarios in my

head....what if she (God forbid) dies in surgery...this is a 4 hour

procedure..you think after 4 surgeries I would be comforted and have a little

confidence that it will all be ok...but it doesn't work like that,,,each time

is like the first time. Things happen, unfortunately. I just pray

everytime that it will all be OK. Gotta get her up for school, will

write her history later.

[Guest guest]

well said Kazzy, well said...

Pamela Waling " smile, it confuses people... "

> From: Kazzy <kazzy@...>

> Subject: RE: RE: Daughter's surgery

> cholesteatoma

> Date: Thursday, October 23, 2008, 12:36 PM

> Hi Caryn

>

>

>

> My heart went out to you and your daughter when I read your

> message and I've

> been sat here wondering how best to reply - if I could.

> Some of my answer is

> just thoughts/ramblings, but some is factual too, so

> forgive me please, if it's

> not what you want to hear. I didn't suffer from ear

> problems as a child, and

> wasn't diagnosed with cholesteatoma until I was 37

> after years of infections and

> perforations as an adult so I am not really able to see

> things from a child's

> perspective.

>

>

>

> I don't think anyone here can state definitively why

> your daughter has this

> problem and not the person across the way, or down the

> road, or in the next

> town. We're just folks who have been through it, or

> whose children have been

> through it... and besides, though there are some things

> that are thought to be

> contributory factors (Eustachian Tube Dysfunction,

> allergies, etc.), I don't

> think even the specialists have a definitive answer as to

> why some people get

> cholesteatoma whilst others don't. If they knew for

> sure the cause(s) of it,

> I'm sure we would all do everything possible to avoid

> it.

>

>

>

> Some people might explain loosely to a child of her age

> that she got it because

> she is a stronger person and more able to cope with it than

> others might be able

> to. Your daughter clearly has a mother who loves her

> deeply; likely your

> daughter has a good support network in her friends and

> family, and these people

> may be able to help her through the time she will need to

> recover from the

> surgery.

>

>

>

> There are also some who might explain to their child just

> that it's a case of

> pure chance - that it's nothing she or her parents have

> done, that it's just

> down to chance.

>

>

>

> Your daughter might want to know that she can actively take

> a role in helping to

> reduce the chances or severity of any recurrence by not

> using cotton buds deep

> in her ears, by not getting water in her ear (by perhaps

> wearing ear plugs when

> swimming/showering, etc.). Attending check-ups regularly

> might ensure that if

> there were a recurrence, it could be nipped in the bud, so

> to speak. If she

> feels she is helping herself this way, she may feel a

> little better about

> things.

>

>

>

> You might wish to explain to her (and to bear in mind for

> your own sanity, too)

> that it's okay to feel angry, afraid, low - even

> depressed - and alone in our

> suffering; I think we all go through those emotions - I

> know I did! However,

> there is good that can come from this, too, though it may

> not be obvious at

> first: by her talking openly about how she feels, you may

> feel you are growing

> closer through this experience, spending time together

> chatting, cuddling,

> laughing and joking, sharing special moments as she

> recovers that you perhaps

> might not otherwise have.

>

>

>

> What I do know is that I wish you and your daughter well as

> you approach this

> surgery. Remember, please, that neither your daughter nor

> you are alone with

> this - you've found a great place to vent and seek

> advice and support.

>

>

>

> My best wishes to you and your family.

>

>

>

> Kazzy J

>

>

>

>

>

>

>

>

>

>

>

>

>

> From: cholesteatoma

> [mailto:cholesteatoma ] On

> Behalf Of Caryn Fish

> Sent: 23 October 2008 12:26

> cholesteatoma

> Subject: RE: Daughter's surgery

>

>

>

>

> Hi,

>

>

>

> My name is Caryn. I told my daughter that I was going

> to look for a support

> group,,,because she is having her 5th surgery on November

> 6th,,,and I need

> support from people that have " been there " ..She

> is 11 and is so horrified of the

> idea of having another surgery,,(not that I blame her). I

> just bought her a Mac

> Notebook cuz I feel so bad; does she " need " a Mac

> Notebook? Hell no, but I have

> to give her something to look forward to; feel happy

> about...she keeps saying,

> " Don't you feel sorry for me? " , " why did

> God give this to me? " ,,,ugh,,,how do I

> answer these questions? I child this age cannot put things

> in

> perspective..Cancer would be worse,,,isn't what she

> understands, or wants to

> hear. Ok,,,so we are 2 weeks away from surgery and I am

> starting to feel sorry

> for myself, putting negative scenarios in my head....what

> if she (God forbid)

> dies in surgery...this is a 4 hour procedure..you think

> after 4 surgeries I

> would be comforted and have a little confidence that it

> will all be ok...but it

> doesn't work like that,,,each time is like the first

> time. Things happen,

> unfortunately. I just pray everytime that it will all be

> OK. Gotta get her up

> for school, will write her history later.

[Guest guest]

Hi all and Caryn, Gabby had her 4th surgery this morning and is doing so well I can't believe it. She was just singing to Highcshool Musical. They went in through the back again,did a tympanoplasty, weny through the mastoid and cleaned it all out. Doc says it looks great and no cholesteatoma!!!! Pray this is it! So glad you all are here. And Caryn,I spoil her,too, because this sucks for her, but I don't let her get away with everything. Just make sure she is healthy before going in and she will do fine. Gotta pray!!! good luck

From: Caryn Fish <caryn.fish@...>Subject: RE: Daughter's surgerycholesteatoma Date: Thursday, October 23, 2008, 6:26 AM

Hi,

My name is Caryn. I told my daughter that I was going to look for a support group,,,because she is having her 5th surgery on November 6th,,,and I need support from people that have "been there"..She is 11 and is so horrified of the idea of having another surgery,,(not that I blame her). I just bought her a Mac Notebook cuz I feel so bad; does she "need" a Mac Notebook? Hell no, but I have to give her something to look forward to; feel happy about...she keeps saying, "Don't you feel sorry for me?", "why did God give this to me?",,,ugh,, ,how do I answer these questions? I child this age cannot put things in perspective. .Cancer would be worse,,,isn' t what she understands, or wants to hear. Ok,,,so we are 2 weeks away from surgery and I am starting to feel sorry for myself, putting negative scenarios in my head....what if she (God forbid) dies in surgery...this is a 4 hour procedure..you think after 4

surgeries I would be comforted and have a little confidence that it will all be ok...but it doesn't work like that,,,each time is like the first time. Things happen, unfortunately. I just pray everytime that it will all be OK. Gotta get her up for school, will write her history later.

[Guest guest]

I second that! Well said Kazzy. > From: Kazzy <kazzykazbat (DOT) plus.com>> Subject: RE: RE: Daughter's surgery> cholesteatoma> Date: Thursday, October 23, 2008, 12:36 PM> Hi Caryn> > > > My heart went out to you and your daughter when I read your> message and I've> been sat here wondering how best to reply - if I could. > Some of my answer is> just thoughts/ramblings, but some is factual too, so> forgive me please, if it's> not what you want to hear. I didn't

suffer from ear> problems as a child, and> wasn't diagnosed with cholesteatoma until I was 37> after years of infections and> perforations as an adult so I am not really able to see> things from a child's> perspective.> > > > I don't think anyone here can state definitively why> your daughter has this> problem and not the person across the way, or down the> road, or in the next> town. We're just folks who have been through it, or> whose children have been> through it... and besides, though there are some things> that are thought to be> contributory factors (Eustachian Tube Dysfunction,> allergies, etc.), I don't> think even the specialists have a definitive answer as to> why some people get> cholesteatoma whilst others don't. If they knew for> sure the cause(s) of it,> I'm sure we would

all do everything possible to avoid> it.> > > > Some people might explain loosely to a child of her age> that she got it because> she is a stronger person and more able to cope with it than> others might be able> to. Your daughter clearly has a mother who loves her> deeply; likely your> daughter has a good support network in her friends and> family, and these people> may be able to help her through the time she will need to> recover from the> surgery.> > > > There are also some who might explain to their child just> that it's a case of> pure chance - that it's nothing she or her parents have> done, that it's just> down to chance.> > > > Your daughter might want to know that she can actively take> a role in helping to> reduce the chances or severity of

any recurrence by not> using cotton buds deep> in her ears, by not getting water in her ear (by perhaps> wearing ear plugs when> swimming/showering, etc.). Attending check-ups regularly> might ensure that if> there were a recurrence, it could be nipped in the bud, so> to speak. If she> feels she is helping herself this way, she may feel a> little better about> things.> > > > You might wish to explain to her (and to bear in mind for> your own sanity, too)> that it's okay to feel angry, afraid, low - even> depressed - and alone in our> suffering; I think we all go through those emotions - I> know I did! However,> there is good that can come from this, too, though it may> not be obvious at> first: by her talking openly about how she feels, you may> feel you are growing> closer through this

experience, spending time together> chatting, cuddling,> laughing and joking, sharing special moments as she> recovers that you perhaps> might not otherwise have.> > > > What I do know is that I wish you and your daughter well as> you approach this> surgery. Remember, please, that neither your daughter nor> you are alone with> this - you've found a great place to vent and seek> advice and support.> > > > My best wishes to you and your family.> > > > Kazzy J> > > > > > > > > > > > > > From: cholesteatoma> [mailto:cholesteatoma@

groups. com] On> Behalf Of Caryn Fish> Sent: 23 October 2008 12:26> cholesteatoma> Subject: RE: Daughter's surgery> > > > > Hi,> > > > My name is Caryn. I told my daughter that I was going> to look for a support> group,,,because she is having her 5th surgery on November> 6th,,,and I need> support from people that have "been there"..She> is 11 and is so horrified of the> idea of having another surgery,,(not that I blame her). I> just bought her a Mac> Notebook cuz I feel so bad; does she "need" a Mac> Notebook? Hell no, but I have> to give her something to look forward to; feel happy> about...she keeps saying,> "Don't you feel sorry for me?", "why

did> God give this to me?",,,ugh,, ,how do I> answer these questions? I child this age cannot put things> in> perspective. .Cancer would be worse,,,isn' t what she> understands, or wants to> hear. Ok,,,so we are 2 weeks away from surgery and I am> starting to feel sorry> for myself, putting negative scenarios in my head....what> if she (God forbid)> dies in surgery...this is a 4 hour procedure..you think> after 4 surgeries I> would be comforted and have a little confidence that it> will all be ok...but it> doesn't work like that,,,each time is like the first> time. Things happen,> unfortunately. I just pray everytime that it will all be> OK. Gotta get her up> for school, will write her history later.

[Guest guest]

Thank you so much for all of your insiteful replys. I should have joined this group a long time ago. was born with her Cholesteatoma. It was wasn't discovered until she had a hearing test in Nursery school and failed miserably. Originally it was recommended that she see an ENT for tubes. The ENT looked in one ear and then the other, then back to the other, and replied, "there is something wrong with her eardrum it looks like it never fully formed." Well, it wasn't that; it was that the Cholesteatoma was growing in her head since birth and by age 4 had done so much damage that it ruined her eardrum and everything in it's path,. the ENT said he thought it was a Cholesteatoma, it was just and I, (I was divorced by then), and I remember thinking, "oh my God, she has cancer"..Then the Ent quickly

stated that this was not cancer. My ex and I researched an ENT to do the surgery,; he asked his group of people, I asked mine, and we both came up with the same guy.

That began our journey....Caryn

[Guest guest]

Since this idea that cancer would be worse has come up so many times, I would like to say that if one more well meaning friend says that to me, I will scream...At least with cancer there are the options of chemotherapy and radiation. With ctoma, I have had to sit through ten, soon eleven surgeries with my daughter who is only five years old. There is still the risk of death via complications (and we have had some of them). I am not trying to minimize the agony of a mother of a child with cancer (one of my dear friends is going through this now), but I refuse to minimze the seriousness of ctoma, either.

We know this deep down, but we want to make it easier on ourselves and our children by saying it's " all good. " It is important to stay positive and not to wallow in pity for them or ourselves. And I am also guilty of a few " just wish I could make this easier for you " purchases! But it's also ok to say this is really hard, and while someone out there may have it harder, that doesn't change what we are going through.

Those of you who know me, know I am the most positive mom around, but that doesn't mean I won't acknowledge that staying positive in the face of numerous obstacles regarding ctoma sometimes means a reality check that this is a long haul.

That was one of my rare no charge soapbox speeches, and worth what you paid for it...LOL

On Thu, Oct 23, 2008 at 9:57 PM, Caryn Fish <caryn.fish@...> wrote:

Thank you so much for all of your insiteful replys. I should have joined this group a long time ago. was born with her Cholesteatoma. It was wasn't discovered until she had a hearing test in Nursery school and failed miserably. Originally it was recommended that she see an ENT for tubes. The ENT looked in one ear and then the other, then back to the other, and replied, " there is something wrong with her eardrum it looks like it never fully formed. " Well, it wasn't that; it was that the Cholesteatoma was growing in her head since birth and by age 4 had done so much damage that it ruined her eardrum and everything in it's path,. the ENT said he thought it was a Cholesteatoma, it was just and I, (I was divorced by then), and I remember thinking, " oh my God, she has cancer " ..Then the Ent quickly stated that this was not cancer. My ex and I researched an ENT to do the surgery,; he asked his group of people, I asked mine, and we both came up with the same guy.

That began our journey....Caryn

[Guest guest]

,

I must say that you are a very positive strong mom and I love to read your posts. And I agree I know things could be worse, but in reality this C-toma thing is horrible to deal with especially for a child. And the guilt we deal with as parents is very painful also.

As I am sitting here, my 8 yo c-toma stricken son is running around like a maniac with his friend laughing and having a great time and I know everything will be OK, as long as he is laughing.

We will all get through this but I know this mom is not done shedding tears for her little boy.

Re: Re: Daughter's surgery

Since this idea that cancer would be worse has come up so many times, I would like to say that if one more well meaning friend says that to me, I will scream...At least with cancer there are the options of chemotherapy and radiation. With ctoma, I have had to sit through ten, soon eleven surgeries with my daughter who is only five years old. There is still the risk of death via complications (and we have had some of them). I am not trying to minimize the agony of a mother of a child with cancer (one of my dear friends is going through this now), but I refuse to minimze the seriousness of ctoma, either.

We know this deep down, but we want to make it easier on ourselves and our children by saying it's "all good." It is important to stay positive and not to wallow in pity for them or ourselves. And I am also guilty of a few "just wish I could make this easier for you" purchases! But it's also ok to say this is really hard, and while someone out there may have it harder, that doesn't change what we are going through.

Those of you who know me, know I am the most positive mom around, but that doesn't mean I won't acknowledge that staying positive in the face of numerous obstacles regarding ctoma sometimes means a reality check that this is a long haul.

That was one of my rare no charge soapbox speeches, and worth what you paid for it...LOL

On Thu, Oct 23, 2008 at 9:57 PM, Caryn Fish <caryn.fish > wrote:

Thank you so much for all of your insiteful replys. I should have joined this group a long time ago. was born with her Cholesteatoma. It was wasn't discovered until she had a hearing test in Nursery school and failed miserably. Originally it was recommended that she see an ENT for tubes. The ENT looked in one ear and then the other, then back to the other, and replied, "there is something wrong with her eardrum it looks like it never fully formed." Well, it wasn't that; it was that the Cholesteatoma was growing in her head since birth and by age 4 had done so much damage that it ruined her eardrum and everything in it's path,. the ENT said he thought it was a Cholesteatoma, it was just and I, (I was divorced by then), and I remember thinking, "oh my God, she has cancer"..Then the Ent quickly stated that this was not cancer. My ex and I researched an ENT to do the surgery,; he asked his group of people, I asked mine, and we both came up with the same guy.

That began our journey....Caryn