Re: another type of story

March 4, 2008

OMG....... this is SO sad. My heart is hurting for this family.

Thanks for sharing. I will say a prayer for them.

Tasha

McDowell wrote: I

hope you all don't mind that I post this here. As most of you know,

my son has scoliosis secondary to neuroblastoma (cancer), so I

get to see both worlds. I came across this story tonight and it's

so...well, I am giving you the caringbridge site to share 's story.

http://www.caringbridge.org/fl/emilyadamson/index.htm

Although has been through a lot, he is in remission and now in

this great cast. Some days I'm resentful that I've had to go through

any of this. But then when I read what other parents are going

through, I feel selfish. Because was diagnosed early (under 1

year old), his prognosis is very good. When older children are

diagnosed, the prognosis is not so good. Although we are looking at

years of casting, surgeries, etc....there is still hope. I should

enjoy as much as possible every day, because some parents don't

get that chance. Appreciate each day that we can. Give lots of extra

hugs & kisses to your little ones today.

Please please keep this little girl, her sister, her Mom and Dad, in

your prayers.

Thank you

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

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March 4, 2008

's story is very close to my heart. I spent 15 years as a

volunteer with the Make-A-Wish Foundation and have done countless

wishes over those years. I became involved after my niece, Hannah,

was granted a wish. She got Ewings sarcoma at 11-1/2, went into

remission once and we lost her just after she turned 14. It was a

very painful and difficult thing to go through and I don't wish this

on anyone!!! I've fallen in love with all my " wish kids!!!! " They are

so special and although many of these kids have beaten their diseases

and survived, many have not. It hurts so much every time we lose one.

After Devyn was diagnosed with scoliosis and Chiari and we learned

what he was up against, I just had to get involved with ISOP to help

spread the word. It was a very difficult decision to make but I

have " retired " from Make-A-Wish so I could devote more time to ISOP.

but the memories of all " my " kids will stay with me forever. You need

to spend every day with your children as if it might be the last ==

you just never know what's around the corner.

Shara, Grammy to Devyn, age 2, scoliosis and Chiari malformation.

>

> I hope you all don't mind that I post this here. As most of you

know,

> my son has scoliosis secondary to neuroblastoma (cancer), so

I

> get to see both worlds. I came across this story tonight and it's

> so...well, I am giving you the caringbridge site to share 's

story.

>

> http://www.caringbridge.org/fl/emilyadamson/index.htm

>

> Although has been through a lot, he is in remission and now

in

> this great cast. Some days I'm resentful that I've had to go

through

> any of this. But then when I read what other parents are going

> through, I feel selfish. Because was diagnosed early (under

1

> year old), his prognosis is very good. When older children are

> diagnosed, the prognosis is not so good. Although we are looking at

> years of casting, surgeries, etc....there is still hope. I should

> enjoy as much as possible every day, because some parents

don't

> get that chance. Appreciate each day that we can. Give lots of

extra

> hugs & kisses to your little ones today.

>

> Please please keep this little girl, her sister, her Mom and Dad, in

> your prayers.

>

> Thank you

>

March 4, 2008

,Thank you for sharing 's story with us. and you all are

always in our thoughts and prayers - especially this week when you go for

tests. I'm sure everyone will rally together with me this Thursday and

think of you guys. We'll have a candle lit all day so that we are

constantly thinking of you - and we'll add little to our prayers that

day as well.

And, not to make light of everything all of us are going through, but it

really puts a lot of things we are challenged with in perspective. NO

child, NO parent should have to suffer in any way. But, I cannot imagine

what you and 's parents have gone through.

Much love,

Sandi

>

March 4, 2008

Thank you Sandi - you are incredible! And thank you, Shara - how lucky are we

that you are now dedicated to ISOP, and continue to help our children! And

thank you Tasha for your kind words.

You all are so wonderful and I wish we could meet in person...or live in the

same neighborhood to take walks together and have a children play with each

other. I'm very alone here without many (if any) friends, so you all have

become my friends and support!

Thanks for thinking of us on Thursday - we go for bloodwork and HVA/VMA

tests...these are markers specific to neuroblastoma that can be found in the

urine. Then, next month we'll go for scans...MIBG & MRI. We'll have to

coordinate this with our casting schedule of course.

Thank you for reaching out...I don't know exactly how to type it...but it just

overwhelms me sometimes.

Thank you!

" *\\o/* San *\\o/* " wrote:

,Thank you for sharing 's story with us. and you all are

always in our thoughts and prayers - especially this week when you go for

tests. I'm sure everyone will rally together with me this Thursday and

think of you guys. We'll have a candle lit all day so that we are

constantly thinking of you - and we'll add little to our prayers that

day as well.

And, not to make light of everything all of us are going through, but it

really puts a lot of things we are challenged with in perspective. NO

child, NO parent should have to suffer in any way. But, I cannot imagine

what you and 's parents have gone through.

Much love,

Sandi

>

March 4, 2008

DH is licensed in CA, so someday...maybe.

Wouldn't it be great?

Sandi

On Tue, Mar 4, 2008 at 12:14 PM, McDowell

wrote:

>

> You all are so wonderful and I wish we could meet in person...or live in

> the same neighborhood to take walks together and have a children play with

> each other. I'm very alone here without many (if any) friends, so you all

> have become my friends and support!

>

March 4, 2008

Where are you in CA?

I " m in VA...and so is , but TOO far away to see eachother! We did get

to meet last year at HOPEfest, which was awesome.

I " d love to meet up w/everyone!

" *\\o/* San *\\o/* " wrote:

DH is licensed in CA, so someday...maybe.

Wouldn't it be great?

Sandi

On Tue, Mar 4, 2008 at 12:14 PM, McDowell

wrote:

>

> You all are so wonderful and I wish we could meet in person...or live in

> the same neighborhood to take walks together and have a children play with

> each other. I'm very alone here without many (if any) friends, so you all

> have become my friends and support!

>

March 4, 2008

HI - I'm actually FROM Virginia originally...born in Richmond. My Dad

lives on the 'rivah' in Topping (near Tappahannock) and my sis/bro are both in

Reston. But, now I'm in Cali, Lake Elsinore...Riverside county, between LA and

San Diego.

Maybe one day someone will create a website for 'vitual walks'

-

wrote:

Where are you in CA?

I " m in VA...and so is , but TOO far away to see eachother! We did get

to meet last year at HOPEfest, which was awesome.

I " d love to meet up w/everyone!

" *\\o/* San *\\o/* " wrote:

DH is licensed in CA, so someday...maybe.

Wouldn't it be great?

Sandi

On Tue, Mar 4, 2008 at 12:14 PM, McDowell

wrote:

>

> You all are so wonderful and I wish we could meet in person...or live in

> the same neighborhood to take walks together and have a children play with

> each other. I'm very alone here without many (if any) friends, so you all

> have become my friends and support!

>

March 4, 2008

Oh ok..nice. I guess you'd told me that before, It's so hard to keep up

w/Everyone =)

I was born in Manassas..near Reston.

I'll bet CA is a nice change of pace...

McDowell wrote:

HI - I'm actually FROM Virginia originally...born in Richmond.

My Dad lives on the 'rivah' in Topping (near Tappahannock) and my sis/bro are

both in Reston. But, now I'm in Cali, Lake Elsinore...Riverside county, between

LA and San Diego.

Maybe one day someone will create a website for 'vitual walks'

-

wrote: Where are you in CA?

I " m in VA...and so is , but TOO far away to see eachother! We did get to

meet last year at HOPEfest, which was awesome.

I " d love to meet up w/everyone!

" *\\o/* San *\\o/* " wrote:

DH is licensed in CA, so someday...maybe.

Wouldn't it be great?

Sandi

On Tue, Mar 4, 2008 at 12:14 PM, McDowell

wrote:

>

> You all are so wonderful and I wish we could meet in person...or live in

> the same neighborhood to take walks together and have a children play with

> each other. I'm very alone here without many (if any) friends, so you all

> have become my friends and support!

>

March 4, 2008

Hi ,

Thanks for sharing that. It is so disheartening when you hear of children, or

anyone for that matter, having to go through trials and sickness like that. My

heart cries out for that family. We will say a prayer for a miracle, hope, and

some sort of understanding for that family. Know that we will say a prayer for

you and also!

I have a friend on that site as well. Her name is Hutton and she was

diagnosed with stage 4 liver cancer. She is 27 years old. That site is

wonderful. It's a great way for families to feel love and support. Thanks so

much for sharing.

Misty