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Hi Helen,

Sorry to hear that Nick isn't feeling well this morning. I guess

that cold he had earlier in the week, just continued to hang on. Let

us know what the ped has to say.

Aundrea is doing much better. No joint pain today and sore throat

pain is gone.

She had the rash this morning. I am glad that was able to get

the pictures posted. At least it seems that Aundrea seems to be

following the same course as many others except for the strange body

wide rash that she had twice with the high fevers.

Hope things get better for Nick today. Keep us posted.

-

-- In , " hburger64 " <hburger64@h...> wrote:

>

> How is Aundrea doing this morning. I saw her photos in the rash

> section and i must say this is exactly how tummy looked.

> This looks like a classic systemic rash to me.

>

> I hope shes feeling better.

>

> hugs Helen and (7,systemic)

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,

During Robbie's flare last April, his rash spread to cover nearly all of his

body, along with his fever and other systemic symptoms.

Val

Rob's Mom (7,systemic)

In a message dated 1/21/2005 9:13:08 AM Eastern Standard Time, " sonia1md "

<sonia1md@...> writes:

>

>

>Hi Helen,

>

>Sorry to hear that Nick isn't feeling well this morning.  I guess

>that cold he had earlier in the week, just continued to hang on. Let

>us know what the ped has to say.

>

>Aundrea is doing much better.  No joint pain today and sore throat

>pain is gone.  

>

>She had the rash this morning.  I am glad that was able to get

>the pictures posted.  At least it seems that Aundrea seems to be

>following the same course as many others except for the strange body

>wide rash that she had twice with the high fevers.

>

>Hope things get better for Nick today.  Keep us posted.

>

>-

>

>

>-- In , " hburger64 " <hburger64@h...> wrote:

>>

>> How is Aundrea doing this morning. I saw her photos in the rash

>> section and i must say this is exactly how tummy looked.

>> This looks like a classic systemic rash to me.

>>

>> I hope shes feeling better.

>>

>> hugs Helen and (7,systemic)

>

>

>

>

>

>

>

>

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;

I am so glad to hear that drea is feeling better today. Georgina actually

posted the pictures for you.

I'm really glad that she has a scheduled visit with the rheumy soon...

Take care.

and Rob 15 Spondy

On Fri, 21 Jan 2005 14:13:08 -0000 " sonia1md " <sonia1md@...>

writes:

Hi Helen,

Sorry to hear that Nick isn't feeling well this morning. I guess

that cold he had earlier in the week, just continued to hang on. Let

us know what the ped has to say.

Aundrea is doing much better. No joint pain today and sore throat

pain is gone.

She had the rash this morning. I am glad that was able to get

the pictures posted. At least it seems that Aundrea seems to be

following the same course as many others except for the strange body

wide rash that she had twice with the high fevers.

Hope things get better for Nick today. Keep us posted.

-

-- In , " hburger64 " <hburger64@h...> wrote:

>

> How is Aundrea doing this morning. I saw her photos in the rash

> section and i must say this is exactly how tummy looked.

> This looks like a classic systemic rash to me.

>

> I hope shes feeling better.

>

> hugs Helen and (7,systemic)

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  • 4 months later...
Guest guest

---

Hi Helen,

Its sweet of you to ask about Aundrea. With everyones busy lives I am

always amazed when people on this list check up on others!

Aundrea is doing much better. The fevers are gone and all she is left

with is the continued coughing. We should get the pertussis results on

Tuesday.

The infection hasn't caused her to flare, so I am very thankful for

that. The mtx injection this weekend went great. No abdominal pain or

nausea! :-)

I was thinking about you and wondered how your sleep study ever turned

out? I am praying for you regarding your meeting with Nicks principle

and teachers. Its probably a good thing you have had a few days to

cool off and compose yourself!

God Bless,

(Aundrea 9 systemic)

In , " hburger64 " <hburger64@h...> wrote:

> How is Drea doing today??? have things calmed down for her and is she

> feeling better???? I hope the fevers have gone an shes feeling better.

>

> let us know, ive been thinking of her this weekend...

>

>

> hugs Helen and (7,systemic)

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Guest guest

--,

Im glad that Aundrea is feeling better. I hope the pertussis test

comes back negative and the cough soon leaves.

Im dreading dealing with the school tomorrow... i wont sleep tonight

worrying about it. Its just not in my nature to speak up, but i know

i must.

The sleep study was inconclusive, im having times of apnea, but not

enough to be true sleep apnea. But im also not getting to rem sleep

because my snoring keeps waking me up before i get to that phase of

the sleep cycle. Im waiting to hear back and was told ill have to go

and do the whole thing again, but this time with the cpap on and see

what the results are from that. Sleeping pills will not help because

i was given a sleeping pill for the study ( i couldnt get to sleep )

Nick is doing well, hes spent the whole day in the pool, i hope hes

not wiped out tomorrow. I restarted the pred taper and we are at 1mg

one day 2mg the next, alternating. I know this is a big drop, but I

felt like he would be ok. So far so good and its been a week.

Fingers crossed. We see the rheumy on Thursday.

hugs Helen and (7,systemic)

- In , " sonia1md " <sonia1md@y...> wrote:

> ---

> Hi Helen,

>

> Its sweet of you to ask about Aundrea. With everyones busy lives

I am

> always amazed when people on this list check up on others!

>

> Aundrea is doing much better. The fevers are gone and all she is

left

> with is the continued coughing. We should get the pertussis

results on

> Tuesday.

>

> The infection hasn't caused her to flare, so I am very thankful

for

> that. The mtx injection this weekend went great. No abdominal

pain or

> nausea! :-)

>

> I was thinking about you and wondered how your sleep study ever

turned

> out? I am praying for you regarding your meeting with Nicks

principle

> and teachers. Its probably a good thing you have had a few days

to

> cool off and compose yourself!

>

> God Bless,

> (Aundrea 9 systemic)

>

> In , " hburger64 " <hburger64@h...> wrote:

> > How is Drea doing today??? have things calmed down for her and

is she

> > feeling better???? I hope the fevers have gone an shes feeling

better.

> >

> > let us know, ive been thinking of her this weekend...

> >

> >

> > hugs Helen and (7,systemic)

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Guest guest

I was hoping to be able to go but unfortunately we're not going to

be able to swing it this year. :(

Congratulations on sticking up for Nickolas with the school - I

can't believe what happened with the whole ADHD study! I completely

understand being uncomfortable with confrontations - I get shaky

just thinking about such things. Some of these public school stories

I hear on this list make me very glad I chose to homeschool!

Blessings,

, mom to (poly, 10)

> wants me to ask if you guys are going to AJAO???? hes

> convinced that he will be able to play and hang out with his new

> buddy, Josh. I told him i was not sure you would be there, but i

would

> check with you.

>

> Hugs Helen and (7,systemic)

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Guest guest

--AWW im so sorry to hear that.... Nick will be disappointed :o((

But it is a lot of money for a 3 day trip whichever way you do it.

See you at the next support group meeting.

Hugs Helen and (7,systemic)

p.s too funny about 'Nickolas'... Nick told me just this morning

that that was the way his name should be spelt and how did i get

a 'h' in there!!!! too funny thats how you septl it today!!LOL

- In , " " <earthmama2k@y...> wrote:

> I was hoping to be able to go but unfortunately we're not going to

> be able to swing it this year. :(

>

> Congratulations on sticking up for Nickolas with the school - I

> can't believe what happened with the whole ADHD study! I

completely

> understand being uncomfortable with confrontations - I get shaky

> just thinking about such things. Some of these public school

stories

> I hear on this list make me very glad I chose to homeschool!

>

> Blessings,

>

> , mom to (poly, 10)

>

>

>

> > wants me to ask if you guys are going to AJAO???? hes

> > convinced that he will be able to play and hang out with his new

> > buddy, Josh. I told him i was not sure you would be there, but i

> would

> > check with you.

> >

> > Hugs Helen and (7,systemic)

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Guest guest

Kim,

It would be nice to meet you face to face. Hopefully I will be at the

next support meeting. We are going to Providence. This will be an

interesting trip! I will have more than tales about our trip to talk

about I am sure!

and Allie (9 poly)

________________________________

From: [mailto: ] On

Behalf Of hburger64

Sent: Wednesday, June 01, 2005 4:47 PM

Subject: Re: ..

--AWW im so sorry to hear that.... Nick will be disappointed :o((

But it is a lot of money for a 3 day trip whichever way you do it.

See you at the next support group meeting.

Hugs Helen and (7,systemic)

p.s too funny about 'Nickolas'... Nick told me just this morning

that that was the way his name should be spelt and how did i get

a 'h' in there!!!! too funny thats how you septl it today!!LOL

- In , " " <earthmama2k@y...> wrote:

> I was hoping to be able to go but unfortunately we're not going to

> be able to swing it this year. :(

>

> Congratulations on sticking up for Nickolas with the school - I

> can't believe what happened with the whole ADHD study! I

completely

> understand being uncomfortable with confrontations - I get shaky

> just thinking about such things. Some of these public school

stories

> I hear on this list make me very glad I chose to homeschool!

>

> Blessings,

>

> , mom to (poly, 10)

>

>

>

> > wants me to ask if you guys are going to AJAO???? hes

> > convinced that he will be able to play and hang out with his new

> > buddy, Josh. I told him i was not sure you would be there, but i

> would

> > check with you.

> >

> > Hugs Helen and (7,systemic)

________________________________

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  • 1 year later...

,

The most important thing to do is to let yourself grieve. Don't hold it in,

and don't try to be the " strong one " , if you are able.

Also, try and heal your hurt by knowing that your mom is in a great place

and free from any pain, hurts, and is her former healthy self.

Know that I am sending you huge hugs and that my thoughts and prayers are

with you and yours.

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

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Hi ,

I am so sorry to hear this--I had been thinking of you both for a long time.

All I can say (having gone through losing my mom to cancer a little over

18 months ago) is that you need to take comfort from whatever and whomever

you can, whether that's friends, family, whatever. And be alone when you

need to be alone.

Sara

>From: Salvucci <lisa_salvucci@...>

>Reply-

>

>Subject: ..

>Date: Wed, 28 Feb 2007 14:38:33 -0800 (PST)

>

>After almost a year long battle against cancer, my mom took her last breath

>today. I pretty much don't know what to do..

>

> (JAS, 22)

>

>

>

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- Im so sorry to hear this news. I agree with the others about allowing

yourself to process and grieve. Soak in whatever support you can have and

take care of you. This is a huge trauma... take care of you

You're in my prayers

Issadora

On 2/28/07, Sara Pace <sarappace@...> wrote:

>

> Hi ,

>

> I am so sorry to hear this--I had been thinking of you both for a long

> time.

> All I can say (having gone through losing my mom to cancer a little over

> 18 months ago) is that you need to take comfort from whatever and whomever

>

> you can, whether that's friends, family, whatever. And be alone when you

> need to be alone.

>

> Sara

>

> >From: Salvucci

<lisa_salvucci@...<lisa_salvucci%40sbcglobal.net>

> >

> >Reply- < %40>

> > < %40>

> >Subject: ..

> >Date: Wed, 28 Feb 2007 14:38:33 -0800 (PST)

> >

> >After almost a year long battle against cancer, my mom took her last

> breath

> >today. I pretty much don't know what to do..

> >

> > (JAS, 22)

> >

> >

> >

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Guest guest

OMG> , I am soooo sorry. I know exactly what you are going through, as my

mom died of cancer also. In fact, she took her last breath in my arms. All I can

tell you is it will get easier, but it takes time. Again, I am so very sorry for

your loss.

Hugs and Kisses, Deadra and Chase

Salvucci <lisa_salvucci@...> wrote:

After almost a year long battle against cancer, my mom took her last

breath today. I pretty much don't know what to do..

(JAS, 22)

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Guest guest

,

I am so sorry for you and for your loss. May you be surrounded by good

friends and excellent support to help you through these trying times.

With love and hugs

e, mom to joe 20 poly + Lupus

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Guest guest

. You are a brave, strong, generous, loving girl. All gifts that your

mom instilled in you. Hold on tight to those gifts as well as your sisters and

nieces and nephews. The power of family will help heal your broken heart.

Stay strong and we will continue to pray for you and your family...

Alia and Caroline, age 5, poly and uveitis

Evan Guy, 20 months, possible Celiac

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

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Guest guest

- ,

I am so sorry this is so late....

My heart aches for you and your family. Please know we will keep you

close in our hearts ans prayers as you face the difficult days ahead.

Remember your mom will ALWAYS be with you, just not physically.

hugs Helen and (9,systemic)

-- In , Salvucci <lisa_salvucci@...> wrote:

>

> After almost a year long battle against cancer, my mom took her last

breath today. I pretty much don't know what to do..

>

> (JAS, 22)

>

>

>

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  • 2 years later...
Guest guest

..

So glad you are doing better today. Nice to hear that.

DM

So today seemed to be a good day, two injections, the second one was a

little more ummmm uncomfortable, but no numbness of the leg, I worked longer in

the pool, working on core muscles and back muscles. I also had electro

therapy today. The Physical Therapy I missed yesterday, I did today.....but it

was not what I thought it was. It is relaxation therapy where you flex

various muscles and then release them, so that went well..

I went for a 30 min walk today and was pain free in my leg, whereas

yesterday I went for 20 mins and was in pain fairly quickly. Does not mean the

therapy is working as I have been able to walk various distances for months,

some days longer than others...

Okay, that is all for day 2

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