Re: Well, won't some of you be happy

[Guest guest]

Dear Debbie,

I feel with you the disappointment and anger you have about the group

discussions seeing your own child suffering.

In fact, even though we are as parents all in a similar situation

concerning the type of desease, every child with its parents are

individuals and the load they have to carry is really quite different.

What is important to see is the fact that we can not really

comfort each other. We are even able to hurt each other while

trying to give comfort.

It is only the Creator-God who can really give us peace and rest in

whatever circumstances. And even saying this may hurt. However, HE is

the only person I could point out to you so that you will not be

disappointed by the empty words of other people.

Search this great God in your prayers and forget about the mailing

group to be able to concentrate on your who really needs all

your care and strength at this time. He is most important now. I am

sorry that we disappointed you and will start to pray for you and

your . Whenever you think the time has come tell us about .

Warm greetings, thilo.

>

> I'm leaving the group. For those of you who actually care, 's not doing

> well; he's not responding to the increased prednisone as well as we had

> hoped he would. He will probably have to start a drug called 6MP, which is

> used for steroid-resistant

> Crohn's Disease. This is a very serious drug. Also, there is something

> neurologically going on with , and it seems to be progressive. He's

> having another brain MRI done in two weeks. It's really just too much for me

> anymore. I'm so tired of listening to people whine about infusion reactions

> and IV sticks and sinus infections and " life-threatened " children. You have

> no idea how lucky you are.

>

> Debbie

>

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[Guest guest]

bedankt thilo, and Debbie I apologize for not being more supportive we all

have ill children and at anytime God can take them from us they are not ours

they are God and we are only their earthly parents.. we are praying for you

and THilo thank you for reminding us of the truth.

tot ziens,

annette and alissa

>From: thilo@...

>Reply-To: PedPIDegroups

>To: wpsdjs@...

>CC: PedPIDegroups

>Subject: Re: Well, won't some of you be happy

>Date: Fri, 14 Apr 2000 03:24:22 -0400 (EDT)

>

>

> Dear Debbie,

>

>

> I feel with you the disappointment and anger you have about the group

> discussions seeing your own child suffering.

>

> In fact, even though we are as parents all in a similar situation

> concerning the type of desease, every child with its parents are

> individuals and the load they have to carry is really quite different.

> What is important to see is the fact that we can not really

> comfort each other. We are even able to hurt each other while

> trying to give comfort.

> It is only the Creator-God who can really give us peace and rest in

> whatever circumstances. And even saying this may hurt. However, HE is

> the only person I could point out to you so that you will not be

> disappointed by the empty words of other people.

> Search this great God in your prayers and forget about the mailing

> group to be able to concentrate on your who really needs all

> your care and strength at this time. He is most important now. I am

> sorry that we disappointed you and will start to pray for you and

> your . Whenever you think the time has come tell us about .

>

> Warm greetings, thilo.

>

>

> >

> > I'm leaving the group. For those of you who actually care, 's not

>doing

> > well; he's not responding to the increased prednisone as well as we had

> > hoped he would. He will probably have to start a drug called 6MP, which

>is

> > used for steroid-resistant

> > Crohn's Disease. This is a very serious drug. Also, there is something

> > neurologically going on with , and it seems to be progressive. He's

> > having another brain MRI done in two weeks. It's really just too much

>for me

> > anymore. I'm so tired of listening to people whine about infusion

>reactions

> > and IV sticks and sinus infections and " life-threatened " children. You

>have

> > no idea how lucky you are.

> >

> > Debbie

> >

>

>

>----------------------------------------------------------------

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[Guest guest]

Hi Debbie,

I have no idea about some of what has been going on lately because I don't

have much time to read every post, but I do care!! I hope gets to

doing better and that this new drug does the job and he can come off of it

and not need anything afterwards (I have no idea what he is diagnosed with

so that may have been a stupid statement). If you want to email me

privately, please do. I usually always read the ones that come directly to

me instead of through a newsgroup or something.

God Bless you guys,

Well, won't some of you be happy

I'm leaving the group. For those of you who actually care, 's not doing

well; he's not responding to the increased prednisone as well as we had

hoped he would. He will probably have to start a drug called 6MP, which is

used for steroid-resistant

Crohn's Disease. This is a very serious drug. Also, there is something

neurologically going on with , and it seems to be progressive. He's

having another brain MRI done in two weeks. It's really just too much for me

anymore. I'm so tired of listening to people whine about infusion reactions

and IV sticks and sinus infections and " life-threatened " children. You have

no idea how lucky you are.

Debbie

------------------------------------------------------------------------

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Get answers for the stuff you don't. And get $10 to spend on the site!

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------------------------------------------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

Debbie: I am sorry to hear that you are leaving. I know the heartbreak of

starting g on 6-MP must be for you. was on this drug as part of

his chemo protocal--He had to take it for 140 weeks. I know how this must

really be hard for you. I wish you could have gotten the support you

needed. We all need support, and sometimes it just doesn't happen. Please,

remember that there really are those of us who do care about and will

always be around to help support you and to listen when you just need a

shoulder to cry on.

Well, won't some of you be happy

I'm leaving the group. For those of you who actually care, 's not doing

well; he's not responding to the increased prednisone as well as we had

hoped he would. He will probably have to start a drug called 6MP, which is

used for steroid-resistant

Crohn's Disease. This is a very serious drug. Also, there is something

neurologically going on with , and it seems to be progressive. He's

having another brain MRI done in two weeks. It's really just too much for me

anymore. I'm so tired of listening to people whine about infusion reactions

and IV sticks and sinus infections and " life-threatened " children. You have

no idea how lucky you are.

Debbie

------------------------------------------------------------------------

Get paid for the stuff you know!

Get answers for the stuff you don't. And get $10 to spend on the site!

http://click./1/2200/7/_/480115/_/955690576/

------------------------------------------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

Debbie

I am so sorry to hear that is doing so bad. I know when josh was little

they told me he was not going to make it to be 1yr old but I did not let it

discourage me on giving him a chance. I know how frustrating it is to watch your

child get worse and worse and nobody giving you a solution to the problems. I

hope that this new drug helps and pray that nothing goes wrong with it. I also

had problems with steroids not working at times. Josh does not produce his own

steroid so we give him everything that he needs. We have had a lot of hidrenal

crisis that almost killed him. It is very scary to have these problems. Please

do not let the people on the group getting upset discourage you from seeking

advice from other people. I hope you and find the right medication to help

him and keep the faith because these children are fighters nomatter how bad it

may look you never let them see you giving up on them. I know I have been to

where I was there and I had discouraging days and tried not to let my son see me

fall apart. good luck

carol(josh 5yr. cvid,steroid dependent,asthma, and much more)

Well, won't some of you be happy

I'm leaving the group. For those of you who actually care, 's not doing

well; he's not responding to the increased prednisone as well as we had

hoped he would. He will probably have to start a drug called 6MP, which is

used for steroid-resistant

Crohn's Disease. This is a very serious drug. Also, there is something

neurologically going on with , and it seems to be progressive. He's

having another brain MRI done in two weeks. It's really just too much for me

anymore. I'm so tired of listening to people whine about infusion reactions

and IV sticks and sinus infections and " life-threatened " children. You have

no idea how lucky you are.

Debbie

------------------------------------------------------------------------------

------------------------------------------------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

Debbie: My thoughts and prayers are always with you, and your family.

I wished that you felt comforted and enough support to stay, but I can

understand you needing a break from things to deal with this latest

set-back. Please, let me know what the MRI report is and I will be here to

answer any questions regarding the 6-mp--if you have any. ( For those who

don't know, 6-MP is a chemotherapy agent and was on it for 140 weeks

during his fight against cancer.) Please remember the support you have

received.

linda

Well, won't some of you be happy

I'm leaving the group. For those of you who actually care, 's not

doing

well; he's not responding to the increased prednisone as well as we had

hoped he would. He will probably have to start a drug called 6MP, which is

used for steroid-resistant

Crohn's Disease. This is a very serious drug. Also, there is something

neurologically going on with , and it seems to be progressive. He's

having another brain MRI done in two weeks. It's really just too much for

me

anymore. I'm so tired of listening to people whine about infusion

reactions

and IV sticks and sinus infections and " life-threatened " children. You

have

no idea how lucky you are.

Debbie

----------------------------------------------------------------------------

--

----------------------------------------------------------------------------

--

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

To all concerned I lost my daughter tonight I am withdrawing from this

group,

thank you Ursula,

annette lennon

>

>Reply-To: PedPIDegroups

>To: <PedPIDegroups>

>Subject: Re: Well, won't some of you be happy

>Date: Fri, 14 Apr 2000 13:57:53 -0400

>

>Debbie: My thoughts and prayers are always with you, and your

>family.

>I wished that you felt comforted and enough support to stay, but I can

>understand you needing a break from things to deal with this latest

>set-back. Please, let me know what the MRI report is and I will be here to

>answer any questions regarding the 6-mp--if you have any. ( For those who

>don't know, 6-MP is a chemotherapy agent and was on it for 140 weeks

>during his fight against cancer.) Please remember the support you have

>received.

>

>linda

> Well, won't some of you be happy

>

>

> I'm leaving the group. For those of you who actually care, 's not

>doing

> well; he's not responding to the increased prednisone as well as we had

> hoped he would. He will probably have to start a drug called 6MP, which

>is

> used for steroid-resistant

> Crohn's Disease. This is a very serious drug. Also, there is something

> neurologically going on with , and it seems to be progressive. He's

> having another brain MRI done in two weeks. It's really just too much

>for

>me

> anymore. I'm so tired of listening to people whine about infusion

>reactions

> and IV sticks and sinus infections and " life-threatened " children. You

>have

> no idea how lucky you are.

>

> Debbie

>

>

>

>

>

>

>

>

>----------------------------------------------------------------------------

>--

>

>

>

>----------------------------------------------------------------------------

>--

> This forum is open to parents and caregivers of children diagnosed with

>a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

>

>

>

>

[Guest guest]

'Thank you I would like to ask anyone to write to

jeffrey.corvey@... and tell him what he did the private email I sent

to him he handed over to the hospital commander and they all called cps...

alissa is with my nurse supervisor at work.. she just happened to be a

foster mom for the state.

thank you for your caring,

annette

>

>Reply-To: PedPIDegroups

>To: <PedPIDegroups>

>Subject: Re: Well, won't some of you be happy

>Date: Sat, 15 Apr 2000 01:08:53 -0700

>

>Annette if you need me you have my number..I can't believe this...I am so

>sorry you are going through this.......if you need ANYTHING....please call

>or write..I am here for you.. mom to Tony

> Re: Well, won't some of you be happy

> >>Date: Fri, 14 Apr 2000 13:57:53 -0400

> >>

> >>Debbie: My thoughts and prayers are always with you, and your

> >>family.

> >>I wished that you felt comforted and enough support to stay, but I can

> >>understand you needing a break from things to deal with this latest

> >>set-back. Please, let me know what the MRI report is and I will be here

>to

> >>answer any questions regarding the 6-mp--if you have any. ( For those

>who

> >>don't know, 6-MP is a chemotherapy agent and was on it for 140

>weeks

> >>during his fight against cancer.) Please remember the support you have

> >>received.

> >>

> >>linda

> >> Well, won't some of you be happy

> >>

> >>

> >> I'm leaving the group. For those of you who actually care, 's

>not

> >>doing

> >> well; he's not responding to the increased prednisone as well as we

>had

> >> hoped he would. He will probably have to start a drug called 6MP,

>which

> >>is

> >> used for steroid-resistant

> >> Crohn's Disease. This is a very serious drug. Also, there is

>something

> >> neurologically going on with , and it seems to be progressive.

>He's

> >> having another brain MRI done in two weeks. It's really just too much

> >>for

> >>me

> >> anymore. I'm so tired of listening to people whine about infusion

> >>reactions

> >> and IV sticks and sinus infections and " life-threatened " children.

>You

> >>have

> >> no idea how lucky you are.

> >>

> >> Debbie

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>--------------------------------------------------------------------------

>--

> >>--

> >>

> >>

> >>

> >>--------------------------------------------------------------------------

>--

> >>--

> >> This forum is open to parents and caregivers of children diagnosed

>with

> >>a

> >>Primary Immune Deficiency. Opinions or medical advice stated here are

>the

> >>sole responsibility of the poster and should not be taken as

>professional

> >>advice.

> >>

> >>

> >>

> >>

[Guest guest]

Annette,

I am very sorry for your loss. please if you need anything at all write to me.

carol

Well, won't some of you be happy

>

>

> I'm leaving the group. For those of you who actually care, 's not

>doing

> well; he's not responding to the increased prednisone as well as we had

> hoped he would. He will probably have to start a drug called 6MP, which

>is

> used for steroid-resistant

> Crohn's Disease. This is a very serious drug. Also, there is something

> neurologically going on with , and it seems to be progressive. He's

> having another brain MRI done in two weeks. It's really just too much

>for

>me

> anymore. I'm so tired of listening to people whine about infusion

>reactions

> and IV sticks and sinus infections and " life-threatened " children. You

>have

> no idea how lucky you are.

>

> Debbie

>

>

>

>

>

>

>

>

>----------------------------------------------------------------------------

>--

>

>

>

>----------------------------------------------------------------------------

>--

> This forum is open to parents and caregivers of children diagnosed with

>a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

>

>

>

>

[Guest guest]

Annette if you need me you have my number..I can't believe this...I am so

sorry you are going through this.......if you need ANYTHING....please call

or write..I am here for you.. mom to Tony

Re: Well, won't some of you be happy

>>Date: Fri, 14 Apr 2000 13:57:53 -0400

>>

>>Debbie: My thoughts and prayers are always with you, and your

>>family.

>>I wished that you felt comforted and enough support to stay, but I can

>>understand you needing a break from things to deal with this latest

>>set-back. Please, let me know what the MRI report is and I will be here

to

>>answer any questions regarding the 6-mp--if you have any. ( For those who

>>don't know, 6-MP is a chemotherapy agent and was on it for 140 weeks

>>during his fight against cancer.) Please remember the support you have

>>received.

>>

>>linda

>> Well, won't some of you be happy

>>

>>

>> I'm leaving the group. For those of you who actually care, 's not

>>doing

>> well; he's not responding to the increased prednisone as well as we had

>> hoped he would. He will probably have to start a drug called 6MP, which

>>is

>> used for steroid-resistant

>> Crohn's Disease. This is a very serious drug. Also, there is something

>> neurologically going on with , and it seems to be progressive.

He's

>> having another brain MRI done in two weeks. It's really just too much

>>for

>>me

>> anymore. I'm so tired of listening to people whine about infusion

>>reactions

>> and IV sticks and sinus infections and " life-threatened " children. You

>>have

>> no idea how lucky you are.

>>

>> Debbie

>>

>>

>>

>>

>>

>>

>>

>>

>>--------------------------------------------------------------------------

--

>>--

>>

>>

>>

>>--------------------------------------------------------------------------

--

>>--

>> This forum is open to parents and caregivers of children diagnosed with

>>a

>>Primary Immune Deficiency. Opinions or medical advice stated here are the

>>sole responsibility of the poster and should not be taken as professional

>>advice.

>>

>>

>>

>>