5 years

May 17, 2007

Awesome! Happy to see you doing so well.

Markham

5 years

Hi,

Five years ago on 5-17-02, I began life anew. Dr. R. did my surgery in NC

and one week later, removed my stitches and I headed back to TN. Life has

not

been the same. I was a slow loser. After 3 months and having lost only a

painful 25

pounds. I was a failure. I even called and begged for another surgery. I

was encouraged

and told to give it at least 9 months. Well, at 9 months out I had lost 80

pounds and

was not so panicky.

I hit plateaus and finally lost to under 200 pounds after 2 years.. I

could live with this.

I plateaued here for 4 months and then boom, I dropped down to 148 in no

time.

I remained here for a long time, then I slowly dropped down to 140 pounds.

I stayed there

until this past fall when I had to have repeat rounds of steroids. I now

weigh 150.

I am still happy, but am watching what and how much I eat.

My high blood pressure has gone, I now run about 110/67, heart rate 55 most

of the time.

I had to have my gall bladder removed, a total knee replacement and have had

numerous

rounds of steroid injections for cervial herniations. I still have

fibromyalgia, osteoarthritis,

and now RA, too. If I had not lost the 171 pounds I would not be able to

function as well as I do.

YES< I would do it again tomorrow. I just wished I had known about it

sooner.

The team has been wonderful even after 5 years. I can still pick up the

phone and ask anyone

of them a question. Life is good.

Jane Brenton

Dover TN

5/17/2002

311/140/150

Dr. R

May 20, 2007

Jane-

Congrats to you! Just curious if you have any problems with your blood work,

i.e. anemia, low B12, low vit D, etc.?

Ria

8/17/04

In a message dated 5/20/2007 12:38:02 P.M. Central Daylight Time,

markham1951@... writes:

Awesome! Happy to see you doing so well.

Markham

----- Original Message ----

From: Jane Brenton <_janebrenton@janebrentjan_

(mailto:janebrenton@...) >

_MiniGastricBypass@MiniGastricBMin_

(mailto:MiniGastricBypass ) ; _@groMGB_Pos_

(mailto: )

Sent: Wednesday, May 16, 2007 7:39:29 PM

Subject: 5 years

Hi,

Five years ago on 5-17-02, I began life anew. Dr. R. did my surgery in NC

and one week later, removed my stitches and I headed back to TN. Life has

not

been the same. I was a slow loser. After 3 months and having lost only a

painful 25

pounds. I was a failure. I even called and begged for another surgery. I

was encouraged

and told to give it at least 9 months. Well, at 9 months out I had lost 80

pounds and

was not so panicky.

I hit plateaus and finally lost to under 200 pounds after 2 years.. I

could live with this.

I plateaued here for 4 months and then boom, I dropped down to 148 in no

time.

I remained here for a long time, then I slowly dropped down to 140 pounds.

I stayed there

until this past fall when I had to have repeat rounds of steroids. I now

weigh 150.

I am still happy, but am watching what and how much I eat.

My high blood pressure has gone, I now run about 110/67, heart rate 55 most

of the time.

I had to have my gall bladder removed, a total knee replacement and have had

numerous

rounds of steroid injections for cervial herniations. I still have

fibromyalgia, osteoarthritis,

and now RA, too. If I had not lost the 171 pounds I would not be able to

function as well as I do.

YES< I would do it again tomorrow. I just wished I had known about it

sooner.

The team has been wonderful even after 5 years. I can still pick up the

phone and ask anyone

of them a question. Life is good.

Jane Brenton

Dover TN

5/17/2002

311/140/150

Dr. R

[Non-text portions of this message have been removed]

************************************** See what's free at http://www.aol.com.

November 1, 2008

Major typos Sorry anyway sept past was our group 5 year birthday.. 5

years went by fast. Older I get faster time goes. mike group owner---

In Stimulator , " Mike " <mike2boys@...> wrote:

>

> I cant beleive this past september was this group 5th yeasr sice I

open

> this group up. WOW. I look forward to another 5 years and more.

Mike

> group owner

>

November 7, 2008

Hey Kathy!

Thanks, hon. How are you feeling? Please know that you are in my continued

prayers...I hope that you feel better each and every day.

Thanks for the prayers for my husband. He is is so much pain

still....mulitple broken ribs on both sides..he is " hurtin for certain " ...and it

is even

worse for us now that with my pain in my legs and back I really relied on him

greatly....and now he is in great need and I want to be there for him, as he

is always there for me....but I am really having alot more pain and my legs

are more swollen than ever.

He will be out of work for at least 2 months...and now...with me out of work

for the past 7 years....I don't have to tell you the hardships that we are

facing. I have my disablity, but he has nothing...and is out of sick and

vacation time due to him taking off so much for me while in the hospital...sorry

for the venting....but I had to get it all out...and I don't want to upset him

more talking about money..you know?

Thanks my friend.

I appreciate your friendship and your kindness...and also...thank you so

much for all your work...I know you are pitching in more now that I am out on

" leave " as you might put it...I will be back next week and have been in touch

with Mike. Thanks for all your work, Kathy.

Love,

Kathy G.

Co-owner

**************AOL Search: Your one stop for directions, recipes and all other

Holiday needs. Search Now.

(http://pr.atwola.com/promoclk/100000075x1212792382x1200798498/aol?redir=http://\

searchblog.aol.com/2008/11/04/happy-holidays-from

-aol-search/?ncid=emlcntussear00000001)

May 6, 2009

Ellen,

A hearty congratulations to you! Keep on going, if not forever, for

a long time.

Schaffer

On May 6, 2009, at 3:07 PM, Ellen Diamond wrote:

> Hi.

> Please celebrate with me the 5th anny this month of my CR (complete

> remission) from chemo. The trial I was in, begun in late '03,

> consisted of chemo + thalidomide. I began the chemo part

> (fludarabine)

> in 12/03 and stopped in 5/04, after 6 rds. I'm still 9 mos away from

> being 5 yrs off thalidomide, which I cont'd on until 2/05. To me, the

> most impressive thing about all this is that I'd had 3 cycles of

> previous treatment—fludara alone, fludara rituxan, rituxan alone—and

> never had a real remission since the minute I stopped tx the CLL began

> to return. So I'm proof that given luck, a great doctor and a good

> protocol, one can have a fine remission late in one's CLL " career. "

> I've treasured every single moment of it, as you all can well

> appreciate. I expect to keep going as I am for... forever. Places to

> go, things to do, people to see. After you shout " hurrah " please find

> a great big piece of wood and knock the stuffing out of it!

> -Ellen D.

> Age 69, dx'd 4/98

>

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

>

May 6, 2009

Wonderful! Congrats! How about a trip around the world? Jeanne > > From: e.diamond@...> Date: Wed, 6 May 2009 15:07:27 -0400> Subject: 5 years> > Hi.> Please celebrate with me the 5th anny this month of my CR (complete > remission) from chemo. The trial I was in, begun in late '03, > consisted of chemo + thalidomide. I began the chemo part (fludarabine) > in 12/03 and stopped in 5/04, after 6 rds. I'm still 9 mos away from > being 5 yrs off thalidomide, which I cont'd on until 2/05. To me, the > most impressive thing about all this is that I'd had 3 cycles of > previous treatment—fludara alone, fludara rituxan, rituxan alone—and > never had a real remission since the minute I stopped tx the CLL began > to return. So I'm proof that given luck, a great doctor and a good > protocol, one can have a fine remission late in one's CLL "career." > I've treasured every single moment of it, as you all can well > appreciate. I expect to keep going as I am for... forever. Places to > go, things to do, people to see. After you shout "hurrah" please find > a great big piece of wood and knock the stuffing out of it!> -Ellen D.> Age 69, dx'd 4/98> > > ------------------------------------> >

May 6, 2009

CONGRATULATIONS ELLEN!!!!

You go girl ;-)

I'm 9 years complete remission, it's not a death sentence any more.Sue BunteThe greatness of a nation and it's moral progress may be judged by the way it's animals are treated.Mahatma Ghandi

From: Ellen Diamond <e.diamond@...>Subject: 5 years Date: Wednesday, May 6, 2009, 12:07 PMHi.

Please celebrate with me the 5th anny this month of my CR (complete remission) from chemo. The trial I was in, begun in late '03, consisted of chemo + thalidomide. I began the chemo part (fludarabine) in 12/03 and stopped in 5/04, after 6 rds. I'm still 9 mos away from being 5 yrs off thalidomide, which I cont'd on until 2/05. To me, the most impressive thing about all this is that I'd had 3 cycles of previous treatmentâ€”fludara alone, fludara rituxan, rituxan aloneâ€”and never had a real remission since the minute I stopped tx the CLL began to return. So I'm proof that given luck, a great doctor and a good protocol, one can have a fine remission late in one's CLL

"career." I've treasured every single moment of it, as you all can well appreciate. I expect to keep going as I am for... forever. Places to go, things to do, people to see. After you shout "hurrah" please

find a great big piece of wood and knock the stuffing out of it!

-Ellen D.

Age 69, dx'd 4/98

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

May 6, 2009

Thanks for the good wishes, Sue.

Heavens, 9 yrs! What was the treatment that put you into this

wonderful remission? I think I'll aim for your record.

10 years is considered " cured, " you know. We have one member who

achieved it. Far as I know, he's still going strong.

-Ellen D.

On May 6, 2009, at 11:26 PM, Sue Bunte wrote:

>

> CONGRATULATIONS ELLEN!!!!

>

> You go girl ;-)

>

> I'm 9 years complete remission, it's not a death sentence any more.

>

> Sue Bunte

>

> The greatness of a nation and it's moral progress may be judged by the

> way it's animals are treated.

I agree!

>

> Mahatma Ghandi

May 7, 2009

great news ellen

hearing this is what keeps us all positive

Best wishes

from Delhi

May 7, 2009

Ellen,

First off, congratulations!

Second- may I ask a couple questions? Where did you have this? What have you

been told about the benefits of the prior treatments before going on this?

Am I reading correctly that you stayed on Thalidomide for 9 months after the

Fludara ended?

I ask because I was on F and T for 6 rounds. It was my first treatment. I got

a great response but not CR. (But I pushed the envelope for how long you wait

before taking action.) Mine treatment ended- no additional T.

I thought I was feeling so well it would not surprise me for them to say I was a

CR and possibly cured. But, no dice. It was quite a blow. Your news of

possible future treatments and future success are a help. Provided I don;t have

have an abnormally long PR period.

-

May 7, 2009

Hi, .

Thanks for your good wishes. I'll do my best to anwer your questions.

This trial was done at NY Presbyterian Hospital, affiliated with

Weill-Cornell Medical Center here in NYC, where I live. I was a

patient in that hospital for 3 previous cycles of treatment. I wasn't

told anything about how the previous tx might or might not affect the

outcome of the trial. One thing, although I'd had fludarabine twice

b4, I'd cut the tx short both times and only had a total of 7 rounds

going in. That may be partly responsible for my good reaction, though

I'd always reacted well to fludarabine. I just never had a CR before,

mostly because I didn't combine the fludarabine with anything strong

enough.

Yes, I stayed on Thalidomide for 9 mos more. It was very arbitrary --

not required by the trial, just something Dr. Furman felt was a good

idea. I stopped when I needed to have heart surgery and could not be

on that drug and I decided not to go back on it after the surgery.

There are no statistics about how long one should continue on the

thalidomide. It remains to be tested, I guess.

I doubt if remaining that long on T is what gave me this nice

remission. I think I just responded very well to the combination. So

much of this all is just luck.

As for how long I waited, I waited until my nodes were very big and my

oncologist and I both felt I needed to do something. My CLL takes the

form of tumors (nodes) that grow larger rather than high wbc.

That's all I'm gonna say -- it's important not to second guess yourself

too much -- you did what was right for you at the time and we just had

different responses. There are other things you can try, other

combinations, etc

Good luck!

-ellen

On May 7, 2009, at 8:56 PM, Rutherford wrote:

>

> Ellen,

> First off, congratulations!

>

> Second- may I ask a couple questions? Where did you have this? What

> have you been told about the benefits of the prior treatments before

> going on this?

>

> Am I reading correctly that you stayed on Thalidomide for 9 months

> after the Fludara ended?

>

> I ask because I was on F and T for 6 rounds. It was my first

> treatment. I got a great response but not CR. (But I pushed the

> envelope for how long you wait before taking action.) Mine treatment

> ended- no additional T.

>

> I thought I was feeling so well it would not surprise me for them to

> say I was a CR and possibly cured. But, no dice. It was quite a blow.

> Your news of possible future treatments and future success are a help.

> Provided I don;t have have an abnormally long PR period.

>

> -

>

May 8, 2009

I would like to add to Ellen's post reagarding fludarabine plus thalidomide. There was a strong rationale for the combination in that refractoriness to fludarabine might be mediated in part by pathways inhibited by thalidomide. My hope is that those few cells that resist the fludarabine that give rise relapses will have been eliminated by the combination, enhancing remissions. Clinical trials come in all forms, some trying completely novel compounds and other means to enhance those agents that we already have available to us.I know we will be able to beat CLL in the not to distant future. Perhaps not cure it, but make it so people can live with it indefinitely. This is one reason I encourage everyone to participate in clinical trials if one that meets your needs is available. Rick FurmanFrom: Ellen Diamond Date: Fri, 08 May 2009 01:06:00 -0400< >Subject: Re: 5 years Hi, . Thanks for your good wishes. I'll do my best to anwer your questions. This trial was done at NY Presbyterian Hospital, affiliated with Weill-Cornell Medical Center here in NYC, where I live. I was a patient in that hospital for 3 previous cycles of treatment. I wasn't told anything about how the previous tx might or might not affect the outcome of the trial. One thing, although I'd had fludarabine twice b4, I'd cut the tx short both times and only had a total of 7 rounds going in. That may be partly responsible for my good reaction, though I'd always reacted well to fludarabine. I just never had a CR before, mostly because I didn't combine the fludarabine with anything strong enough. Yes, I stayed on Thalidomide for 9 mos more. It was very arbitrary -- not required by the trial, just something Dr. Furman felt was a good idea. I stopped when I needed to have heart surgery and could not be on that drug and I decided not to go back on it after the surgery. There are no statistics about how long one should continue on the thalidomide. It remains to be tested, I guess. I doubt if remaining that long on T is what gave me this nice remission. I think I just responded very well to the combination. So much of this all is just luck. As for how long I waited, I waited until my nodes were very big and my oncologist and I both felt I needed to do something. My CLL takes the form of tumors (nodes) that grow larger rather than high wbc. That's all I'm gonna say -- it's important not to second guess yourself too much -- you did what was right for you at the time and we just had different responses. There are other things you can try, other combinations, etc Good luck! -ellen On May 7, 2009, at 8:56 PM, Rutherford wrote: > > > > Ellen, > First off, congratulations! > > Second- may I ask a couple questions? Where did you have this? What > have you been told about the benefits of the prior treatments before > going on this? > > Am I reading correctly that you stayed on Thalidomide for 9 months > after the Fludara ended? > > I ask because I was on F and T for 6 rounds. It was my first > treatment. I got a great response but not CR. (But I pushed the > envelope for how long you wait before taking action.) Mine treatment > ended- no additional T. > > I thought I was feeling so well it would not surprise me for them to > say I was a CR and possibly cured. But, no dice. It was quite a blow. > Your news of possible future treatments and future success are a help. > Provided I don;t have have an abnormally long PR period. > > - > >

May 8, 2009

Cool Beans, gives us all hope......

> Hi.

> Please celebrate with me the 5th anny this month of my CR (complete

> remission) from chemo. The trial I was in, begun in late '03,

> consisted of chemo + thalidomide. I began the chemo part > (fludarabine)

> in 12/03 and stopped in 5/04, after 6 rds. I'm still 9 mos away from

> being 5 yrs off thalidomide, which I cont'd on until 2/05. To me, the

> most impressive thing about all this is that I'd had 3 cycles of

> previous treatmentâ€”fludara alone, fludara rituxan, rituxan aloneâ€”and

> never had a real remission since the minute I stopped tx the CLL began

> to return. So I'm proof that given luck, a great doctor and a good

> protocol, one can have a fine remission late in one's CLL

"career."

> I've treasured every single moment of it, as you all can well

> appreciate. I expect to keep going as I am for... forever. Places to

> go, things to do, people to see. After you shout "hurrah"

please find

> a great big piece of wood and knock the stuffing out of it!

> -Ellen D.

> Age 69, dx'd 4/98

>

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

>

May 8, 2009

Thank you, Dr. Furman. The preceding

emails were getting me confused and very depressed. I like your attitude best.

And, thanks again for being so responsive

and informative to this group.

Bonnie

(Watch and Wait and try not to Worry, too

much)

From: [mailto: ] On Behalf Of rrfurman@...

Sent: Friday, May 08, 2009 6:17 AM

Subject: Re: 5 years

I would like

to add to Ellen's post reagarding fludarabine plus thalidomide. There was a

strong rationale for the combination in that refractoriness to fludarabine

might be mediated in part by pathways inhibited by thalidomide. My hope is that

those few cells that resist the fludarabine that give rise relapses will have

been eliminated by the combination, enhancing remissions.

Clinical trials come in all forms, some trying completely novel compounds and

other means to enhance those agents that we already have available to us.

I know we will be able to beat CLL in the not to distant future. Perhaps not

cure it, but make it so people can live with it indefinitely. This is one

reason I encourage everyone to participate in clinical trials if one that meets

your needs is available.

Rick Furman

Fr om: Ellen

Diamond

Date: Fri, 08 May 2009 01:06:00

-0400

< >

Subject: Re: 5 years

Hi, .

Thanks for your good wishes. I'll do my best to anwer your questions.

This trial was done at NY Presbyterian Hospital, affiliated with

Weill-Cornell Medical Center

here in NYC, where I live. I was a

patient in that hospital for 3 previous cycles of treatment. I wasn't

told anything about how the previous tx might or might not affect the

outcome of the trial. One thing, although I'd had fludarabine twice

b4, I'd cut the tx short both times and only had a total of 7 rounds

going in. That may be partly responsible for my good reaction, though

I'd always reacted well to fludarabine. I just never had a CR before,

mostly because I didn't combine the fludarabine with anything strong

enough.

< br> Yes, I stayed on Thalidomide for 9 mos more. It was very arbitrary

--

not required by the trial, just something Dr. Furman felt was a good

idea. I stopped when I needed to have heart surgery and could not be

on that drug and I decided not to go back on it after the surgery.

There are no statistics about how long one should continue on the

thalidomide. It remains to be tested, I guess.

I doubt if remaining that long on T is what gave me this nice

remission. I think I just responded very well to the combination. So

much of this all is just luck.

As for how long I waited, I waited until my nodes were very big and my

oncologist and I both felt I needed to do something. My CLL takes the

form of tumors (nodes) that grow larger rather than high wbc.

That's all I'm gonna say -- it's important not to second guess yourself

too much -- you did what was right for you at the time and we just had

diff erent responses. There are other things you can try, other

combinations, etc

Good luck!

-ellen

On May 7, 2009, at 8:56 PM, Rutherford wrote:

>

> Ellen,

> First off, congratulations!

>

> Second- may I ask a couple questions? Where did you have this? What

> have you been told about the benefits of the prior treatments before

> going on this?

>

> Am I reading correctly that you stayed on Thalidomide for 9 months

> after the Fludara ended?

>

> I ask because I was on F and T for 6 rounds. It was my first

> treatment. I got a great response but not CR. (But I pushed the

> envelope for how long you wait before taking action.) Mine treatment

> ended- no additional T.

>

> I thought I was feeling so well it would not surprise me for them to

> say I was a CR and possibly cured. But, no dice. It was qui te a blow.

> Your news of possible future treatments and future success are a help.

> Provided I don;t have have an abnormally long PR period.

>

> -

>

October 28, 2010

,

I am so happy for Noah and your whole family! You have been a great resource

and cheerleader and friend to me and I appreciate it so much. Your story gives

me and many others hope for our childrens future. Thank you for sharing your

story and happy anniversary! Much love to you and Noah.

and Isaiah

Hannah <susanrhannah@...> wrote:

>Hey Everyone,

>Â

>Just wanted to say that tomorrow is our 5 yr Anniversary (of sorts) with PIS.Â

To all the new parents out there 'Stick with it!'Â

>Â

>October 28, 2005,Â our perfect little baby boyÂ was 'officially' diagnosed with

PIS, at his 4 month check up, Â at 24 degreesÂ (although my husband knewÂ from

about 2 weeks).Â There was not a Dr in our state that would see him, so we

applied at a Shriners Hospital and traveled 4 hrs, each way, back and forth for

months.Â We slowly watched our little man progress and progress.Â To our Drs

defense, he did tell us casting was available, but was clearly uninformed about

the success rate.Â From 10 months to 13 months, on the 'Wait and See' approach,

we watched our babes go from 32 degrees to 80 degrees!!!! Our Dr wanted to wait

3 more months until he was walking to even brace him!! Thank God that he had at

least given us the info, as little as it was about casting, we did a little

research and my wonderful husband let them know their was no way we were

waiting.Â We asked to be transferred to Shriners in SLC and had a casting

apptÂ 3 weeks later!Â

>Â

>Our 1st cast was an AMAZING success, 80 degrees to 28 degrees!!!Â 4 years, 1

month and 8 days since the 1st cast, our son has had a series of 9 casts and is

currently in his 5th brace at 9 degrees (upper) and 12 degrees (lower).Â As our

son also has a Syrinx Cyst, the Dr told us this was just to hold off the

inevitable, he would someday have surgery.Â 2 appts ago, he has now changed his

story stating that he isn't sure if Noah will ever have to have surgery (of

course, we are cautiously optimistic).Â This is possible!!! Don't get me wrong,

there have definitely been ups andÂ downs, tons of frustrating moments, endless

questions and a whole lot of people who just don't get it.Â Â

>Â

>I just wanted to say, I'm soÂ grateful for all of the parents on here who have

helped us with our long journey, answered hospital questions, hotel questions.

sight seeing questions (lol).....everything!!!! IÂ know I don't post alot, but

do read almost all of the post, and can relate to everyone of you in some way.Â

>Â

>I would hateÂ to even think where we would be without the love and constant

fight has enduredÂ the last 12 years, we owe you EVERYTHING!!Â Our

little manÂ is happy, healthy and STRAIGHT because of you, ISOP and

ShrinersÂ Hospital!!Â I know that we will never be able to repay youÂ for what

you have done for us, but know that I will doÂ everything I canÂ for you for the

rest of myÂ life! Â

>Â

>Miracle do happen! Quoting Heidi (love ya Heidi) 'Just keep swimming'

>Â

>

>Noah 5 yrs 3 1/2 mo, 9 casts 5 braces , 80 to 9 in brace from SLCÂ

>

October 28, 2010

9 degrees (upper) and 12 degrees (lower)!!! Noah has such a success

story!!! Its absolutely AMAZING!!!!

Ive teared up reading this and I just want to say THANK YOU. Its

because of you that lil Noah (well, not that little anymore) is doing as

well as he is. You were determined, persistent and fierce when it came to

your lil man and followed your maternal instinct. You knew you would find

something/someone to help your boy, and YOU did!

Im honored to be a part of it all and am so happy to know you. Well, one

day we will meet!

Much Love,

HRH

> Hey Everyone,

>

> Just wanted to say that tomorrow is our 5 yr Anniversary (of sorts) with

> PIS. To all the new parents out there 'Stick with it!'

>

> October 28, 2005, our perfect little baby boy was 'officially' diagnosed

> with PIS, at his 4 month check up, at 24 degrees (although my husband

> knew from about 2 weeks). There was not a Dr in our state that would see

> him, so we applied at a Shriners Hospital and traveled 4 hrs, each way,

> back and forth for months. We slowly watched our little man progress and

> progress. To our Drs defense, he did tell us casting was available, but

> was clearly uninformed about the success rate. From 10 months to 13

> months, on the 'Wait and See' approach, we watched our babes go from 32

> degrees to 80 degrees!!!! Our Dr wanted to wait 3 more months until he was

> walking to even brace him!! Thank God that he had at least given us the

> info, as little as it was about casting, we did a little research and my

> wonderful husband let them know their was no way we were waiting. We

> asked to be transferred to Shriners in SLC and had a casting appt 3 weeks

> later!

>

> Our 1st cast was an AMAZING success, 80 degrees to 28 degrees!!! 4 years,

> 1 month and 8 days since the 1st cast, our son has had a series of 9 casts

> and is currently in his 5th brace at 9 degrees (upper) and 12 degrees

> (lower). As our son also has a Syrinx Cyst, the Dr told us this was just

> to hold off the inevitable, he would someday have surgery. 2 appts ago,

> he has now changed his story stating that he isn't sure if Noah will ever

> have to have surgery (of course, we are cautiously optimistic). This is

> possible!!! Don't get me wrong, there have definitely been ups and downs,

> tons of frustrating moments, endless questions and a whole lot of people

> who just don't get it.

>

> I just wanted to say, I'm so grateful for all of the parents on here who

> have helped us with our long journey, answered hospital questions, hotel

> questions. sight seeing questions (lol).....everything!!!! I know I don't

> post alot, but do read almost all of the post, and can relate to everyone

> of you in some way.

>

> I would hate to even think where we would be without the love and constant

> fight has endured the last 12 years, we owe you EVERYTHING!! Our

> little man is happy, healthy and STRAIGHT because of you, ISOP and

> Shriners Hospital!! I know that we will never be able to repay you for

> what you have done for us, but know that I will do everything I can for

> you for the rest of my life!

>

> Miracle do happen! Quoting Heidi (love ya Heidi) 'Just keep swimming'

>

> Noah 5 yrs 3 1/2 mo, 9 casts 5 braces , 80 to 9 in brace from SLC

>

October 28, 2010

Amazing! Go Noah!~Noah 5 years old9 months of casting in SLC; 2 1/2 years of bracing; Currently treatment-free at 8*And Mariella 1 yr old - resolved Infantile Scoliosisinfantile scoliosis treatment From: susanrhannah@...Date: Wed, 27 Oct 2010 20:50:58 -0700Subject: 5 Years

Hey Everyone,

Just wanted to say that tomorrow is our 5 yr Anniversary (of sorts) with PIS. To all the new parents out there 'Stick with it!'

October 28, 2005, our perfect little baby boy was 'officially' diagnosed with PIS, at his 4 month check up, at 24 degrees (although my husband knew from about 2 weeks). There was not a Dr in our state that would see him, so we applied at a Shriners Hospital and traveled 4 hrs, each way, back and forth for months. We slowly watched our little man progress and progress. To our Drs defense, he did tell us casting was available, but was clearly uninformed about the success rate. From 10 months to 13 months, on the 'Wait and See' approach, we watched our babes go from 32 degrees to 80 degrees!!!! Our Dr wanted to wait 3 more months until he was walking to even brace him!! Thank God that he had at least given us the info, as little as it was about casting, we did a little research and my wonderful husband let them know their was no way we were waiting. We asked to be

transferred to Shriners in SLC and had a casting appt 3 weeks later!

Our 1st cast was an AMAZING success, 80 degrees to 28 degrees!!! 4 years, 1 month and 8 days since the 1st cast, our son has had a series of 9 casts and is currently in his 5th brace at 9 degrees (upper) and 12 degrees (lower). As our son also has a Syrinx Cyst, the Dr told us this was just to hold off the inevitable, he would someday have surgery. 2 appts ago, he has now changed his story stating that he isn't sure if Noah will ever have to have surgery (of course, we are cautiously optimistic). This is possible!!! Don't get me wrong, there have definitely been ups and downs, tons of frustrating moments, endless questions and a whole lot of people who just don't get it.

I just wanted to say, I'm so grateful for all of the parents on here who have helped us with our long journey, answered hospital questions, hotel questions. sight seeing questions (lol).....everything!!!! I know I don't post alot, but do read almost all of the post, and can relate to everyone of you in some way.

I would hate to even think where we would be without the love and constant fight has endured the last 12 years, we owe you EVERYTHING!! Our little man is happy, healthy and STRAIGHT because of you, ISOP and Shriners Hospital!! I know that we will never be able to repay you for what you have done for us, but know that I will do everything I can for you for the rest of my life!

Miracle do happen! Quoting Heidi (love ya Heidi) 'Just keep swimming'

Noah 5 yrs 3 1/2 mo, 9 casts 5 braces , 80 to 9 in brace from SLC

October 28, 2010

Congrats on your great story and your anniversary! Hope is always alive!!!!- Noelle's mommy, 3 1/2 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and currently in cast 9reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: Hannah <susanrhannah@...>Subject: 5 Yearsinfantile scoliosis treatment Date: Thursday, October 28, 2010, 3:50 AM