new to group

[Guest guest]

Hi Tim,

Welcome to this group!!! I'm sure that you will find that this

group is very supportive. It's a great group and I'm sure that you

will learn a lot from all the people on the list. You really do need

to see a Rheumatologist, especially if you are having a lot of pain.

Vicki

L.T.STOOPS@... wrote:

From: L.T.STOOPS@...

Hi I am new to this group and hope to be welcomed here. I have had

psoarisis for over 30 years and think I have arthritis too but

have

not been to a Dr. for it yet. (I know I should go).

I was posting in the alt.support-skin-deaseases.psoriasis group

and

have just got tired of the way the group acts. I will not go into

that any just wanted to say Hi and hope I can stay here and get

and

give some support.

I am 49, Male, live in South West Michigan.

Tim

Servings

of fruit a day: 0 1 2+

Please visit our new web page at:

http://www.wpunj.edu/icip/pa

[Guest guest]

hi cynthia

my name is rosemary. I have had psoriasis for many years. I was dianosed with

psoriatic arthritis a little less then a year ago. It hit me really hard.

i'm 39 and was in fairly good health. within a few months i could barely

walk. i was in so much pain all the time. well to make a long story short...

i started taking vioxx which helped a little at first. then i started on mtx

last sept. the only effect it had on me was cold sores ! in dec i started

on enbrel and after just two shots i was almost back to normal. it is

unbelievable. though i hate the needles, it is worth it to have my life

back. i am still on a low dose of mtx and vioxx but will be coming off the

mtx soon.

well i wish you well

rosemary

[Guest guest]

,

sorry i can't say i've had any remission on mtx......it did help me

alot and and still does.....i'm sure if i went off it for awhile i'd find

out how much it really helps ......i've been taking mtx for at least 15

years, lab tests are still good, liver is fine.....

and believe me I have been tested.....i was adopted as a child and had

no medical history until i was 49 years old and found biological families

and got history.....found out that my birthfather, his mother (my granny)

and his sister (my aunt) all died from hemochromatosis....if you aren't

familiar w/that disease it is basically too much iron in the blood system

and causes psorosis of the liver if not caught early and blood lettings

to reduce the iron levels....needless to say when my rheumy found out about

the hemochromatosis, i was quickly reduced of mtx but not taken off......as

soon as i reduced i had lots of trouble so now that i've proved that my

liver tests are still okay mtx has been increased two times.

nanc

cynthiaabolin@... wrote:

hi,

I finally got up the nerve to join your group (i've never joined

any

group before) because your postings have been so helpful to me.

I have had PA for several years but was diagnosed about 4 years

ago.

Because I'm concerned about Methotrexate, I've been on NSAIDs and

Plaquenil since then. I've recently relocated and my new

Rheum.

thinks I'd do better on MX. My questions are many, but has

anyone

gone into remission with the help of the drug and if so, for how

long?

The idea of a rest from the swelling sounds pretty good.

Thanks for being there.

[Guest guest]

Hello and welcome.

I have been using Methotrexate for 7 years or so now. It really helps me a lot,

with very few controllable side effects. I had some problems with mouth sores

early on, but folic acid fixes that. Get your rheumy to write a script for folic

acid when he does the MTX. MTX is not near as bad as it's reputation might lead

you to believe. Most of the bad press comes from cancer patients, who are

getting much larger dosages.

Other than that, daily moderate exercise, slowing down on the beer consumption,

and trying to get enough rest are the most important things I have found to work

for me.

happy trails - Rob Glover

_____________________________________________________

hi,

I finally got up the nerve to join your group (i've never joined any group

before) because your postings have been so helpful to me.

I have had PA for several years but was diagnosed about 4 years ago. Because I'm

concerned about Methotrexate, I've been on NSAIDs and Plaquenil since then.

I've recently relocated and my new Rheum. thinks I'd do better on MX. My

questions are many, but has anyone

gone into remission with the help of the drug and if so, for how long?

The idea of a rest from the swelling sounds pretty good.

Thanks for being there.

[Guest guest]

In a message dated 2/23/01 10:17:48 AM US Eastern Standard Time,

ama3655@... writes:

<< I had some problems with mouth sores early on, but folic acid fixes that.

>>

I've had a couple of mouth sores - nothing major and I do take the folic acid

- but lately I've had very very sore gums that bleed like crazy when I brush

and/or floss. They even hurt when I eat. Anyone else having gum trouble? I

don't know if it's PA related or something else

[Guest guest]

In a message dated 04/17/2001 1:30:39 PM Eastern Daylight Time,

zmann721@... writes:

<< currently taking celebrex and will be starting

arava within a few weeks. i have done all the sulfer meds and the

mtx in the past, but my weak stomach doesn't let me go the distance.

at the ripe old age of 30, i still seek the miracle in JESUS' name

to be healed. until that healing takes place, i continue to believe,

in HIS name, science can ease the pain.

>>

Hi - welcome to the group. You said the MTX was too rough on the stomach.

For me as well - that's why I now do MTX by injection. I still often feel

crummy the next day - tired and irriatible (just ask my hubby!!!), but no

more stomach trouble as the injections by pass the intestinal tract. Might

be an option for you, but hopefully the Arava may do so as well.

By the way, keep on asking Him for a cure for ALL of us

[Guest guest]

Can I whine a little - my partner of 8 years just left me; I'm just hoping

that the stress doesn't get the better of my joints. We had just sold our

home and bought another; great timing...I'll take creaky joints any day.

Re: [ ] new to group

> In a message dated 4/20/01 10:52:11 PM US Eastern Standard Time,

> dgross@... writes:

>

> << I am newly separated and maybe the PA is my punishment for

> leaving 28 years of marriage >>

> - I hope that was meant as a joke. I'm sorry your marriage didn't

work

> out, but no one deserves PA. And no one deserves punishment for a failed

> marriage either - it always takes two to fail in that subject.

> Welcome to the group,

>

>

>

>

>

[Guest guest]

In a message dated 27/04/01 03:26:16 GMT Daylight Time, rarelyindallas@... writes:

Hi..my name is , and I am 32 years old.. I was diagnosed with PA in late November, after a series of misdiagnoses (including SLE). My skin condition is fairly well under control, but the pain is just something I cannot get past.. In the last 6 months, I have taken Diclofenac, Piroxicam, Methylprednisolone (oral and injections)... I currently take Methotrexate (22.5mg/week), Sulindac (400mg/day), as well as Zoloft for stress and folic acid to complement the MTX.. I periodically get injections of Depo-Medrol and Toradol in each hip.

Welcome ,

AND welcome to the club !!!! :-)

Nippy Nigel may be able to help with the alternate remedies....

He will probably answer your mail.

Mike (from the UK)

[Guest guest]

In a message dated 05/08/2001 6:10:36 PM Eastern Daylight Time,

cindyseverson@... writes:

<< I'm only 41 and feel like I'm 90

some days. Any pearls of wisdom out there? Any diet things that at

least help? Thanks in advance >>

Hi - I know some have found some relieve in a " glutonfree " diet (sp?) -

gluton being mostly wheat products (bread, flour, etc.). I have found very

little difference in pain levels by varying diet, but I do know that overall

I feel better when I eat a balanced diet (fairly low fat, lots of fresh

veggies and fruits and easy on the red meats). I'm 40, and I do understand

feeling 90! My biggest trigger is stress, but since it is necessary for me

financially to work, I can't avoid it altogether. Again, balance seems to be

the key here - I can deal with a certain level of stress, but when I'm

overwhelmed, the PA flares. Posting (venting sometimes too) on here with

people who understand is a great stress reliever for me. Hopefully, you have

some good offline support as well. My husband and mother are great with me.

Unfortunately my brother, who is an M.D., seems to think PA is no big deal.

I was talking about getting handicapped plate for my car the other day and he

actually said " For what? " - just goes to show how sometimes we get the most

support where we least expect it and the least where we do expect it.

Anyhow, welcome to the group!

[Guest guest]

-

If it makes you feel better, I'm right in the middle

of a really bad flare, and I'm 32, feeling like 90.

Just keep plugging away.. that's all I can do these

days, til things start to subside.

--- cindyseverson@... wrote:

> Well, I finally found some people who can relate to

> me and I to you.

> I have been fighting this PA since 1989 but not dxs

> until 2 years

> ago. I had hoped that it was no big deal and it

> would be a minor

> nuasnece ?sp. Boy was I wrong. I'm now on 20mg of

> Methotrexate and

> ramping up on the sulfasalidine and 10mg of

> Prednisone. I still can't

> wear my wedding rings. You all know the rest of the

> story, tired,

> achy, swollen etc. As far as the psoriasis goes I

> only had 2 spots on

> my elbows and they are gone now. I'm ponly 41 and

> feel like I'm 90

> some days. Any pearls of wisdom pout there? Any

> diet things that at

> least help? Thanks in advance

>

>

>

__________________________________________________

[Guest guest]

Welcome . I think most of us here are probably members of the

NPF, at least I am. I notice that your subscription preference is set

to " individual emails " , and just want to point out that since there

are 927 members of this group (and still growing!) individual emails

can sometimes get a little overwhelming, and I would like you and

everyone else to know that there are two other options for reading

posts on this PA forum: 1. Daily Digest (one email message per day

containing all the messages for that day), and 2. Read messages on

the web only. You can change your preferences by going to the main PA

web page at / and

clicking on " Edit My Membership " up on the top right hand corner of

that page.

As for posting, you're doing just fine. If you have any particular

questions or need help dealing with or with this forum, please

feel free to email me (rkba@...) or -

owner and one of the moderators will be happy to help

you out.

One thing a lot of us try to do here is to find correlations between

PA and other factors. Yours is the first post I've seen that

correlates PA with marriage!!! (ie, PA for 7 years, married for 7

years - Just joking of course ;-)

-- Ron

> HI. My name is and I just joined this group. I

> have had PA for almost 7 years. I have been married

> almost 7 years and have two children (Todd 4 and Josh

> almost 2). I run a support group for Psoriasis through

> the NPF in Illinois. I am currently coming into a

> particularly rough go of things after having tried

> ENBREL and it caused my immune system to slip to low.

> Right now it's mainly my right knee involved and my

> lower spine. I am on sure what I am doing because I

> don't know anything about . So any help you can

> give would be much appreciated.

>

>

[Guest guest]

Hello ,

I live in Tasmania Australia, my situation is much the same as yours.

I'm on Arivia, Prednisone and Gold all seems to be of some help but with

some yuck side effects.

It does take it's toll on the kids, its hard not being able to do things

with them. My wife does most of the outdoor duties because I can not. We do

not have Enbrel in Aust as yet.

[ ] New to group

HI. My name is and I just joined this group. I

have had PA for almost 7 years. I have been married

almost 7 years and have two children (Todd 4 and Josh

almost 2). I run a support group for Psoriasis through

the NPF in Illinois. I am currently coming into a

particularly rough go of things after having tried

ENBREL and it caused my immune system to slip to low.

Right now it's mainly my right knee involved and my

lower spine. I am on sure what I am doing because I

don't know anything about . So any help you can

give would be much appreciated.

__________________________________________________

[Guest guest]

,

Welcome to the group. I live in Queensland on the Sunshine Coast. You may

not be aware that the Arthritis Foundation of Australia is lobbying for, at

least, a trial of Enbrel for PA and other auto-immune diseases, and

ultimately to have it and other biolics PBS listed. To this end we have

been running a public awareness campaign - I recently had a letter on the

subject published in our regional newspaper and the Foundation had a full

page article published in a national newspaper. On March 13 a public

meeting will be held by the Arthritis Foundation of Australia at Parramatta,

which is to be webcast, to draw up a petition paper on the subject to be

presented to the Federal Minister for Health. If you would like to know

anything else, let me know as I am in personal contact with the CEO of the

Arthritis Foundation. For information, I have been asked to write an

article for the Foundation's quarterly magazine on my experiences with PA,

which should help to further raise awareness of our little known disease.

Regards, Gordon

[ ] New to group

>

> HI. My name is and I just joined this group. I

> have had PA for almost 7 years. I have been married

> almost 7 years and have two children (Todd 4 and Josh

> almost 2). I run a support group for Psoriasis through

> the NPF in Illinois. I am currently coming into a

> particularly rough go of things after having tried

> ENBREL and it caused my immune system to slip to low.

> Right now it's mainly my right knee involved and my

> lower spine. I am on sure what I am doing because I

> don't know anything about . So any help you can

> give would be much appreciated.

>

>

>

>

> __________________________________________________

>

[Guest guest]

> One thing a lot of us try to do here is to find

> correlations between

> PA and other factors. Yours is the first post I've

> seen that

> correlates PA with marriage!!! (ie, PA for 7 years,

> married for 7

> years - Just joking of course ;-)

>

> -- Ron

I know I tease my husband about it all the time. We

were married three months when I started getting it

this bad! I had a small patch of scale on the back of

my neck while planning my wedding. All in a month I

had gotten into a car accident, had a lot of

frustration planning my wedding, and then the clincher

was being sexually assaulted in my own home by a

member of our wedding. So as you can see there were

tons of factors there for me. I also can remember as a

child getting chicken pox twice, and upper respiratory

infections all the time. So I can see the immune thing

far back.

Thanks for you help. I changed that so t hat I would

read it on the web.

__________________________________________________

[Guest guest]

, All that is a lot of stress to have all at once. Many people on

this group will testify that stress triggers flare-ups in their conditions.

I’m not saying the stress caused your PA, but it certainly gave it the right

conditions to suddenly flourish. Welcome to the group, I hope you find it

as beneficial as I have.

Wishing you and everyone else pain free days,

Ari

[Guest guest]

Welcome and a belated happy birthday to your Jaymes. What a crazy time that must have been for you, trying to get your arms around the DS and then the leukemia diagnosis...

- Rossvalerielerma <valerielerma@...> wrote:

Hello. My name is and I have a 13 month old son named Jaymes. He has DS. At birth he was diagnosed with transient leukemia, amongst other things. At three weeks of age the leukemia flared up and he was re-admitted to the hospital (he had been home for 73 hours) to deal with the leukemia. Our hematologist, I'd kiss this man's feet if he wanted me to, had done his fellowship in transient leukemia and DS kids. He wanted to try giving Jaymes chemotherapy to treat his leukemia - we consented. Jaymes' leukemia disappeared in 4 days - it hasn't returned since. I pray everyday that it doesn't return, but realize that we have a long way to go. Anyway, I just wanted to introduce myself. Thanks for listening.Proud mommy to Jaymes Xavier

6/4/03

[Guest guest]

Welcome ,

Wow, that was a lot to emotionally deal with at once. Glad you could join us.

My daughter (DS) is 4 1/2 and was diagnosed with AML at 2. She received approx. 6 months of intensive treatment and is now in remission.

spvalerielerma <valerielerma@...> wrote:

Hello. My name is and I have a 13 month old son named Jaymes. He has DS. At birth he was diagnosed with transient leukemia, amongst other things. At three weeks of age the leukemia flared up and he was re-admitted to the hospital (he had been home for 73 hours) to deal with the leukemia. Our hematologist, I'd kiss this man's feet if he wanted me to, had done his fellowship in transient leukemia and DS kids. He wanted to try giving Jaymes chemotherapy to treat his leukemia - we consented. Jaymes' leukemia disappeared in 4 days - it hasn't returned since. I pray everyday that it doesn't return, but realize that we have a long way to go. Anyway, I just wanted to introduce myself. Thanks for listening.Proud mommy to Jaymes Xavier 6/4/03

[Guest guest]

Thank you for the welcome. Yes, it was a lot to deal with in those

first few days/months. We had no idea that Jaymes had DS until he

was born. Things happened very rapidly after that. Now they are

just a blur, but looking back I find it hard to understand how we got

through it. He's quite the treasure now though.

I have a question for all of you - how do you do it? How do you

handle the " remission " part? The not knowing? I guess what makes it

so hard for me to understand and handle sometimes is this: when we

went to our hematology appointment, 3 days after Jaymes was released

from the NICU, we walked into the office and the doctor took one look

at him and said " your son is very sick. Didn't you see that? " He

didn't mean to be " mean " about it. I know he didn't mean anything

other than what he said - we had a very sick boy on our hands. But

apparently we missed all the signs - the labored breathing (my son

has always had labored breathing - both of his parents do!),

the " spots " , the paleness of him (my son is pale, what can I tell

you?), etc. And he had just been seen by his pediatrician the day

before! I guess I still harbor a lot of guilt over that whole

episode (does it show much?). Now, there are days that I catch

myself wondering how will I know? How will I know if it " comes

back? " I was on pins and needles when we had his blood count done

this year. And so relieved when everything came back ok. I don't

want to become a paranoid mother (and neither does Dad), but I can't

keep that little voice in the back of my head from saying " it can

come back before he's 6... " And to have to repeat the whole story to

EVERY doctor that we see! It drives me nuts sometimes. So, I ask

you, those that have been there and done that - how do you keep from

going insane during these times? How do I get over the guilt from

not knowing? By the way, Jaymes is our first child. We waited many

years before having him (we celebrated our 10 year anniversary this

past New Year's Eve). Sometimes, we wonder why we waited so long to

have someone so precious - not realizing the absolute joy that he

could bring to our hearts and lives.

Thanks for letting me ramble. Sorry it's so long.

> Hello. My name is and I have a 13 month old son named

> Jaymes. He has DS. At birth he was diagnosed with transient

> leukemia, amongst other things. At three weeks of age the leukemia

> flared up and he was re-admitted to the hospital (he had been home

> for 73 hours) to deal with the leukemia. Our hematologist, I'd kiss

> this man's feet if he wanted me to, had done his fellowship in

> transient leukemia and DS kids. He wanted to try giving Jaymes

> chemotherapy to treat his leukemia - we consented. Jaymes' leukemia

> disappeared in 4 days - it hasn't returned since. I pray everyday

> that it doesn't return, but realize that we have a long way to go.

>

> Anyway, I just wanted to introduce myself. Thanks for listening.

>

>

> Proud mommy to Jaymes Xavier 6/4/03

>

>

>

>

>

>

[Guest guest]

will be 3 years post chemo on July 23rd and I still get

stressed out before he gets blood work done. It is getting better

over time but in the beginning I was a nut case.

Hugs

> > Hello. My name is and I have a 13 month old son named

> > Jaymes. He has DS. At birth he was diagnosed with transient

> > leukemia, amongst other things. At three weeks of age the

leukemia

> > flared up and he was re-admitted to the hospital (he had been

home

> > for 73 hours) to deal with the leukemia. Our hematologist, I'd

kiss

> > this man's feet if he wanted me to, had done his fellowship in

> > transient leukemia and DS kids. He wanted to try giving Jaymes

> > chemotherapy to treat his leukemia - we consented. Jaymes'

leukemia

> > disappeared in 4 days - it hasn't returned since. I pray

everyday

> > that it doesn't return, but realize that we have a long way to

go.

> >

> > Anyway, I just wanted to introduce myself. Thanks for listening.

> >

> >

> > Proud mommy to Jaymes Xavier 6/4/03

> >

> >

> >

> >

> >

> >

[Guest guest]

Welcome to the Group Connie. I am . Mom to Jimmy. Jimmy was diagnosed with AML M7 on Jan. 30, 2007. After finishing round three of Chemo Jimmy became very ill and I all most lost him. I now have him home after a eight week stay in the PICU. To read more on Jimmy please visit his Caring Bridge Webpage at http://www.caringbridge.org/visit/jimmycollick CollickConnie Gliott <conniegliott@...> wrote: Hi everyone, I have a son with ds who was just diagnosed with leukemia. His name is and he will be five in September. I was hoping to talk to some other parents who are going through the same thing. We live in Loveland, Co and we have spent the last 5 days at Children's Hospital in Denver. He has ALL Leukemia. They started him on chemotherapy immediately and will be going home tomorrow for out patient treatment. I would love to hear other stories of other children. Thanks. Connie Sick sense of humor? Visit TV's Comedy with an Edge to see what's on,

when.

Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when.

[Guest guest]

Hi Connie,

My name is Ann. My son is 4 years old (he'll be 5 in December).

was diagnosed with ALL in June of 2005 when he was 2 1/2 years old. We're a

little more than 2 years into treatment with one more year left to go. It's

not a fun road to travel, but 's doing very well. If has a Caring

Bridge website I'd love the link. 's website is

www.caringbridge.org/visit/johnbremer

Please feel free to e-mail me if you have any questions. I remember being

so disoriented in the beginning. The first part of treatment was hard

because we were dealing with a scary diagnosis and had a really hard

time with the steroids. Hang in there!

Ann

>From: Connie Gliott <conniegliott@...>

>Reply-

>

>Subject: [ ] new to group

>Date: Tue, 14 Aug 2007 16:35:04 -0700 (PDT)

>

>Hi everyone,

>I have a son with ds who was just diagnosed with leukemia. His name is

> and he will be five in September. I was hoping to talk to some other

>parents who are going through the same thing. We live in Loveland, Co and

>we have spent the last 5 days at Children's Hospital in Denver. He has ALL

>Leukemia. They started him on chemotherapy immediately and will be going

>home tomorrow for out patient treatment. I would love to hear other

>stories of other children. Thanks.

>

>Connie

>

>

>

>_______________________________________________________________________________\

_____

>Moody friends. Drama queens. Your life? Nope! - their life, your story.

>Play Sims Stories at Games.

>http://sims./

_________________________________________________________________

A new home for Mom, no cleanup required. All starts here.

http://www.reallivemoms.com?ocid=TXT_TAGHM & loc=us

[Guest guest]

-Hey Connie!

My daughter Jenna, 4 ,was diagnosed with ALL in January of this

year. Fortunately, our kids with DS generally respond well, she has

done really well, and the prognosis is quite good. The roughest part

for us was the initial 6wks. We spent quite a bit of time in the

hospital in the beginning. Minor things really but be prepared for

fevers and know how to contact the Docs when this arises. Hand

washing, Hand washing and more hand washing!!

The " lingo " associated can be daunting. The book: Childhood Leukemia-

A guide for families, friends & caregivers by Keene was very

helpful to us in the beginning. All of the meds and getting a

routine down for administering them will become second nature to you

in no time. Know when to ask for help too! We have all been there

and understand how important it is to " just breathe " ! As they

say " Knowledge is power " so arm yourself with updated info on his

protocol. Jenna's Docs are great about giving us info on all of her

meds prior to each phase so that we can be prepared for side effects

and everything. Are you involved in a research study? The

information received from that was very helpful to us as well

In many ways I think our kids w/ Ds prepare us for a different life

from the beginning. I really believe this prepared us and helped us

to be strong for her these past 6months.

Jenna just began the " delayed intensification " phase of treatment.

Approx 8wks until we begin Maintenance.

She is on a higher dose of Steroids this week. Very moody and not

sleeping well, typical for this drug. Out of all of the meds/chemo

our kids take, the steroids seem to be the most life/mood altering.

We will say a prayer for you and your family tonight! Take care and

please don't hesitate to post questions anytime or email me

personally.

Illinois

-- In , Connie Gliott <conniegliott@...>

wrote:

>

> Hi everyone,

> I have a son with ds who was just diagnosed with leukemia. His

name is and he will be five in September. I was hoping to talk

to some other parents who are going through the same thing. We live

in Loveland, Co and we have spent the last 5 days at Children's

Hospital in Denver. He has ALL Leukemia. They started him on

chemotherapy immediately and will be going home tomorrow for out

patient treatment. I would love to hear other stories of other

children. Thanks.

>

> Connie

>

>

>

>

______________________________________________________________________

______________

> Moody friends. Drama queens. Your life? Nope! - their life, your

story. Play Sims Stories at Games.

> http://sims./

>

[Guest guest]

Hi ,

Thank you so much for all the information. It sounds like Jenna is doing well. That is wonderful. may be able to go home tomorrow. It is really scary to think they are sending him home and I have to give all the medication to him on a schedule. He is not real good about taking it to begin with. Do you have any secrets to getting your daughter to take medicine. How long was your child in the hospital in the beginning? What kind of hospital is treating your daughter? was unable to walk when he was diagnosed. We thought he had hurt himself because it started with a limp about 6 weeks ago. His white blood count CBC tests were within the normal range up until the day before he was diagnosed. I had asked the doctor on two occassions

if it was possibly leukemia. He said not really with normal blood. Therefore, it ended up being quite a shock when they came back with that diagnosis. Can you tell me what % they gave you for curing your daughter? It seems like I keep getting different answers and of course you want to go with the highest number. Keep me posted on your daughters progress. It is so encouraging. Thank you.

Connie

[ ] Re: new to group

-Hey Connie!My daughter Jenna, 4 ,was diagnosed with ALL in January of this year. Fortunately, our kids with DS generally respond well, she has done really well, and the prognosis is quite good. The roughest part for us was the initial 6wks. We spent quite a bit of time in the hospital in the beginning. Minor things really but be prepared for fevers and know how to contact the Docs when this arises. Hand washing, Hand washing and more hand washing!! The "lingo" associated can be daunting. The book: Childhood Leukemia-A guide for families, friends & caregivers by Keene was very helpful to us in the beginning. All of the meds and getting a routine down for administering them will become second nature to you in no time. Know when to ask for help too! We have all been there and understand how important it is to "just breathe"! As they say "Knowledge is power" so arm yourself with updated

info on his protocol. Jenna's Docs are great about giving us info on all of her meds prior to each phase so that we can be prepared for side effects and everything. Are you involved in a research study? The information received from that was very helpful to us as wellIn many ways I think our kids w/ Ds prepare us for a different life from the beginning. I really believe this prepared us and helped us to be strong for her these past 6months.Jenna just began the "delayed intensification" phase of treatment. Approx 8wks until we begin Maintenance.She is on a higher dose of Steroids this week. Very moody and not sleeping well, typical for this drug. Out of all of the meds/chemo our kids take, the steroids seem to be the most life/mood altering.We will say a prayer for you and your family tonight! Take care and please don't hesitate to post questions anytime or email me personally.

Illinois -- In , Connie Gliott <conniegliott@ ...> wrote:>> Hi everyone,> I have a son with ds who was just diagnosed with leukemia. His name is and he will be five in September. I was hoping to talk to some other parents who are going through the same thing. We live in Loveland, Co and we have spent the last 5 days at Children's Hospital in Denver. He has ALL Leukemia. They started him on chemotherapy immediately and will be going home tomorrow for out patient treatment. I would love to hear other stories of other children. Thanks.> > Connie> > > > ____________ _________ _________ _________ _________ _________ _____________ __> Moody friends. Drama queens. Your life? Nope! - their life, your story.

Play Sims Stories at Games.> http://sims. />

Ready for the edge of your seat? Check out tonight's top picks on TV.

[Guest guest]

Hi Connie,

I very seldom write but I did want to tell you about my daughter

Missy who was diagnosed with ALL just two months before her 5th

birthday. She needed to be on chemo for 2.5 years. She is now 20

years old and is doing wonderful. I enjoy sharing the fact that she

has done so well. I hope this will give you some encouragement as

you go along.

Kay Mom to Missy age 20

>

> Hi everyone,

> I have a son with ds who was just diagnosed with leukemia. His

name is and he will be five in September. I was hoping to talk

to some other parents who are going through the same thing. We live

in Loveland, Co and we have spent the last 5 days at Children's

Hospital in Denver. He has ALL Leukemia. They started him on

chemotherapy immediately and will be going home tomorrow for out

patient treatment. I would love to hear other stories of other

children. Thanks.

>

> Connie

>

>

>

>

______________________________________________________________________

______________

> Moody friends. Drama queens. Your life? Nope! - their life, your

story. Play Sims Stories at Games.

> http://sims./

>

[Guest guest]

My son was diagnosed with AML when he was 31 months. That

will by 7 years ago at the end of January. How time flies. He is doing awesome

and I guess would be considered cured.

From:

[mailto: ] On Behalf

Of downsyn2

Sent: September 3, 2007 11:07 AM

Subject: [ ] Re: new to group

Hi Connie,

I very seldom write but I did want to tell you about my daughter

Missy who was diagnosed with ALL just two months before her 5th

birthday. She needed to be on chemo for 2.5 years. She is now 20

years old and is doing wonderful. I enjoy sharing the fact that she

has done so well. I hope this will give you some encouragement as

you go along.

Kay Mom to Missy age 20

>

> Hi everyone,

> I have a son with ds who was just diagnosed with leukemia. His

name is and he will be five in September. I was hoping to talk

to some other parents who are going through the same thing. We live

in Loveland, Co and we have spent the last 5 days at Children's

Hospital in Denver. He has ALL Leukemia. They started him on

chemotherapy immediately and will be going home tomorrow for out

patient treatment. I would love to hear other stories of other

children. Thanks.

>

> Connie

>

>

>

>

__________________________________________________________

______________

> Moody friends. Drama queens. Your life? Nope! - their life, your

story. Play Sims Stories at Games.

> http://sims./

>