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Re: UPDATE ON ALEX

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,

I am overjoyed that so far all tests for Leukemia are negative.

There is absolutely no blood test that says SoJRA or not.It's mainly ruling

out other severe disease,mediacal history and examinations.

There are some suspicious blood results such as increased

WBC,platelets,SED,CRP and hemaglobin and hematocrit and I am sure some others.

The mood swings from the pred actualy has a name, it is called steroid

psychosis.

It can be hard and if you have psyche benefits you might want to schedule an

apointment.

I'm glad to hear the IV steroids are helping just be warned that because it

can mask symptoms of several diseases it mayb e harder and take longer for the

specialists to figure out exactly what your precious baby has.

Hugs

Becki and 7 systemic

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Christene,

I am glad you have some good news. I know that even though you do not have an

actual diagnosis yet, the process of elimination helps. I know you will keep us

posted and I pray that your will feel even better tomorrow. Unfortunatly

many doctors do not think before they speak and have no idea how what they say

will sound to us as mom's. I also pray that you will be able to get some much

needed rest and relax a bit. This is so stressful.

Veri & Jaye 12 poly

UPDATE ON ALEX

Well good news... does not have leukemia! We are still waiting for one more

test to come back and I believe that's the tissue they took from the bone marrow

to rule out any tumors/masses. I have to tell you that I would never wish the

test that they did on yesterday on anybody! The doctor will not give us a

definite diagnosis of JRA yet...can anybody tell me if there is any specific

test that I should request to show that he does indeed have Systemic JRA?! I am

glad that they are doing everything to rule out the worse but my gosh when are

they going to start treating my boy so that he can be himself again. Here's

something I really need an answer to...they gave him a dose of steroids through

his IV yesterday and we are to go tomorrow for another dose. I called the

doctor this afternoon and told her that is having these ungodly terrible

mood swings. He was having it when he was on Tylenol with codeine but not as

bad as the mood swings he is having now (hitting

himself, throwing himself on the floor, very clingy and crying most of the

time). The doctor said that yes steroids causes mood swings but he's also going

through terrible 2s and doing this for attention from us. I was offended by

that comment...no one knows my son more than I do and this is not anything like

a " normal " terrible 2s. I understand if I need to give this medicine time to

work but I really need any feedback before my appointment tomorrow on what I

should ask, say, etc...

By the way is walking a little better and not really in " pain " but these

mood swings are even harder on us than the pain he was going through. I can't

even do anything without him constantly saying " momma " . It's like he doesn't

even know what he wants.

Again I apologize for what the Pediatric Rheumy said and I guess because my

son's reaction at her office last week was too much for her. was screaming

his head off but he's been through a lot the past month to the point when a

doctor walks by...he freaks out. What do they expect?!

Thank you for all your prayers and I really hope that we're on our way to

recovery even though I just don't feel that way YET.

CHRISTENE (ALEX POSSIBLE SYSTEMIC JRA)

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

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Hang in there, The steriods in due time make the kids feel better. But how

is reacting to everything is normal. My little boy had mood swings, temper

tantrums and insomnia. it was a battle to anything at times, going to bed was a

disaster he was out of his mind and could not settle down. He would bang his

head against the pillow for the longest time and cry to wind down. But it gets

better. It was 3 weeks on the steriods by mouth before we had some sanity. He

did not eat for weeks then suddenly he wanted peanut butter sandwiches 2-3 at a

time. He finally got an appetite. My husband and I were exhausted. Joe was out

of commission and not going to preschool/daycare for about 7 weeks last year.

We stayed firm and tried not to reinforce bad behavior and tried to have

distractions food, stickers and toys available And security blanket and stuff

animals for rough moments. IF home we would put him in his room for a break or

quiet time. I remember many doctor's appointments or lab visits were he would

scream the entire time. I hated to go by myself and struggle but we had to do

it.

Ped rheumy advice- attempt to build a rapport and ask plenty of questions. I had

a bad first impression but she was comprehensive in examing joe once we got in

and was pro active in medication management and has an awesome nurse that give

great advice. The bedside manner mediocre and advice terrible. I am trying to

take it with a grain of salt.

If I have questions on how to deal with JRA this list serve is it

Take care

Joe 4 systemic JRA

Things do get better and there is so much hope.

UPDATE ON ALEX

Well good news... does not have leukemia! We are still waiting for one

more test to come back and I believe that's the tissue they took from the bone

marrow to rule out any tumors/masses. I have to tell you that I would never

wish the test that they did on yesterday on anybody! The doctor will not

give us a definite diagnosis of JRA yet...can anybody tell me if there is any

specific test that I should request to show that he does indeed have Systemic

JRA?! I am glad that they are doing everything to rule out the worse but my

gosh when are they going to start treating my boy so that he can be himself

again. Here's something I really need an answer to...they gave him a dose of

steroids through his IV yesterday and we are to go tomorrow for another dose. I

called the doctor this afternoon and told her that is having these ungodly

terrible mood swings. He was having it when he was on Tylenol with codeine but

not as bad as the mood swings he is having now (hitting

himself, throwing himself on the floor, very clingy and crying most of the

time). The doctor said that yes steroids causes mood swings but he's also going

through terrible 2s and doing this for attention from us. I was offended by

that comment...no one knows my son more than I do and this is not anything like

a " normal " terrible 2s. I understand if I need to give this medicine time to

work but I really need any feedback before my appointment tomorrow on what I

should ask, say, etc...

By the way is walking a little better and not really in " pain " but

these mood swings are even harder on us than the pain he was going through. I

can't even do anything without him constantly saying " momma " . It's like he

doesn't even know what he wants.

Again I apologize for what the Pediatric Rheumy said and I guess because my

son's reaction at her office last week was too much for her. was screaming

his head off but he's been through a lot the past month to the point when a

doctor walks by...he freaks out. What do they expect?!

Thank you for all your prayers and I really hope that we're on our way to

recovery even though I just don't feel that way YET.

CHRISTENE (ALEX POSSIBLE SYSTEMIC JRA)

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

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I have a friend at work whose daughter, age 13, had a bone marrow biopsy

this morning. Its very likely she has leukemia, her white count is in

excess of 300,000. Please keep her in your prayers.

I am so happy to hear that 's turned out ok. I hope that he continues

to get better.

and Rob 16 Spondy

On Tue, 7 Mar 2006 22:06:00 EST Arthurnator@... writes:

,

I am overjoyed that so far all tests for Leukemia are negative.

There is absolutely no blood test that says SoJRA or not.It's mainly

ruling

out other severe disease,mediacal history and examinations.

There are some suspicious blood results such as increased

WBC,platelets,SED,CRP and hemaglobin and hematocrit and I am sure some

others.

The mood swings from the pred actualy has a name, it is called steroid

psychosis.

It can be hard and if you have psyche benefits you might want to schedule

an

apointment.

I'm glad to hear the IV steroids are helping just be warned that because

it

can mask symptoms of several diseases it mayb e harder and take longer

for the

specialists to figure out exactly what your precious baby has.

Hugs

Becki and 7 systemic

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Christene,

I am so glad that the leukemia is negative. This is a very scary

time for you all and I bet you are very near having the doctorss

figure something out. You've heard before that some cases of

systemic jra mimic leukemia, and vice versa, so it's very important

and takes good medical advice to go through the bone marrow

analysis. That being said, it almost seems that there is no place

to go but up from here, I hope.

There is no specific test for diagnosing jra, as in it's either a

positive result or a negative result. Same thing for the

pauci/poly/systemic forms. They are differentiated by thorough and

repeated physical examination, family medical history, and thorough

bloodwork, usually repeated also. Each type of blood test might

vary slightly with the different types of jra. I can tell you what

we get our systemic son monitored for each month. Some of these are

to test toxicity levels of certain organs because of the mtx. he

takes. Here are some of them: CBC (complete blood count - a panel

of 10 tests), Auto Differential ( another panel of 10 tests), ESR

(sedimentation rate - measures inflammation that has been present

over a several week period of time), CRP (c-reactive protein which

measures inflammation that is occuring at the time of the blood

draw), iron panel, pediatric chemo (chemistry)monitor (a panel of

about 20 tests), ferritin, and quantitative d-dimer. Don't get too

wrapped up in trying to analyze all these now. The doctors will

have the information they need and hopefully diagnose and start

treating soon. You can let the bloodwork drive you crazy and you

need your energy spent elsewhere right now.

Any one of these tests or subtests may be in or out of the normal

range in any combination at any time. Not a single one of these

tests, IN AND OF ITSELF, means anything. The whole combination will

guide the ped. rheumy to a possible conclusion.

Also, it is important to consider that some children present with

more physical examination symptoms, and some with more " bloodwork "

symptoms. So, again, it is important to consider all the pieces of

the puzzle.

When getting the blood analyzed, make sure that the lab providing

the results is using the pediatric high/low ranges for telling you

whether the result is normal or not. The reason I bring this up is

that even though you may be getting blood taken by who you think is

a pediatric " whoever " , it's the lab that writes the report and puts

all the little asterisks next to each line item that is out of

whack. Normal ranges for adults and normal for pediatrics are very

different in some cases. This is a good question for you to ask.

As far as the pred. goes, I call it the " making a deal with the

devil " drug. It is a beautiful fast acting drug with many very

negative side-effects if used medium to long term. We personally

didn't experience the extreme mood swings that others have, but did

have the Cushings effect for about 9 months. I would make sure that

you have the doctors list all the pros and cons of pred., so that

you are prepared. It is one of the, if not the only fast acting

drug for inflammation that is very commonly used with jra in the

beginning to try to relieve the symptoms. It is only a band-aid.

Remember that. It may mask symptoms. (We brought our then, 7 year

old son, to the hospital in a wheel chair and after 24 hours on

about 20 mg of pred. he was running around as is the 4 years of

sickness had never happened - but the honeymoon didn't last long).

OK, I'm probably starting to go beyond the information you need

right now and rambling. Your case just seems to bring back some

really nasty haunting memories, as Becki mentioned in an earlier

post. (Thanks for reminding me of my sensitivity here Becks!!!!)

Hugs and prayers for you and and your family. Things will get

better and we're hear for you.

Stacia and Hunter 9 systemic, iritis

>

> Well good news... does not have leukemia! We are still

waiting for one more test to come back and I believe that's the

tissue they took from the bone marrow to rule out any

tumors/masses. I have to tell you that I would never wish the test

that they did on yesterday on anybody! The doctor will not

give us a definite diagnosis of JRA yet...can anybody tell me if

there is any specific test that I should request to show that he

does indeed have Systemic JRA?! I am glad that they are doing

everything to rule out the worse but my gosh when are they going to

start treating my boy so that he can be himself again. Here's

something I really need an answer to...they gave him a dose of

steroids through his IV yesterday and we are to go tomorrow for

another dose. I called the doctor this afternoon and told her that

is having these ungodly terrible mood swings. He was having it

when he was on Tylenol with codeine but not as bad as the mood

swings he is having now (hitting

> himself, throwing himself on the floor, very clingy and crying

most of the time). The doctor said that yes steroids causes mood

swings but he's also going through terrible 2s and doing this for

attention from us. I was offended by that comment...no one knows my

son more than I do and this is not anything like a " normal " terrible

2s. I understand if I need to give this medicine time to work but I

really need any feedback before my appointment tomorrow on what I

should ask, say, etc...

>

> By the way is walking a little better and not really

in " pain " but these mood swings are even harder on us than the pain

he was going through. I can't even do anything without him

constantly saying " momma " . It's like he doesn't even know what he

wants.

>

> Again I apologize for what the Pediatric Rheumy said and I guess

because my son's reaction at her office last week was too much for

her. was screaming his head off but he's been through a lot

the past month to the point when a doctor walks by...he freaks out.

What do they expect?!

>

> Thank you for all your prayers and I really hope that we're on

our way to recovery even though I just don't feel that way YET.

>

> CHRISTENE (ALEX POSSIBLE SYSTEMIC JRA)

>

>

>

>

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

>

> Bring photos to life! New PhotoMail makes sharing a breeze.

>

>

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- Please let your friend know we have added her daughter to our

prayer list.

Alia and Caroline, age 4, poly and iritis

________________________________

From: [mailto: ] On

Behalf Of snooksmama@...

Sent: Tuesday, March 07, 2006 9:54 PM

Subject: Re: UPDATE ON ALEX

I have a friend at work whose daughter, age 13, had a bone marrow biopsy

this morning. Its very likely she has leukemia, her white count is in

excess of 300,000. Please keep her in your prayers.

I am so happy to hear that 's turned out ok. I hope that he

continues

to get better.

and Rob 16 Spondy

On Tue, 7 Mar 2006 22:06:00 EST Arthurnator@... writes:

,

I am overjoyed that so far all tests for Leukemia are negative.

There is absolutely no blood test that says SoJRA or not.It's mainly

ruling

out other severe disease,mediacal history and examinations.

There are some suspicious blood results such as increased

WBC,platelets,SED,CRP and hemaglobin and hematocrit and I am sure some

others.

The mood swings from the pred actualy has a name, it is called steroid

psychosis.

It can be hard and if you have psyche benefits you might want to

schedule

an

apointment.

I'm glad to hear the IV steroids are helping just be warned that because

it

can mask symptoms of several diseases it mayb e harder and take longer

for the

specialists to figure out exactly what your precious baby has.

Hugs

Becki and 7 systemic

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Christene - I am so sorry for your families loss. If there is anything you

need please let this group know. We will do whatever to help ease your pain.

Although as a mother, I don't think there is much one can do to ease the

pain for the loss of a child. Take care of yourself and your family and know

that we are praying for you all. Sandi Ken Hunter (7 Systemic)

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Good Morning! As you know I have not been online the past two days

and I will start off by saying yes that my son was diagnosed on

Wednesday as having JRA. Unfortunuately we are sad to say that our

little precious is no longer with us. He passed away on

Wednesday evening of natural causes as was told to us yesterday

afternoon. I really don't know what else to say but I want to thank

you for all your support. I will leave it at that.

CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY

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I'm sorry I don't even know what to say. I am sooooo sorry!!! My

thoughts and prayers are with you and your family!

Love and Prayers!

Ashlee

Re: UPDATE ON ALEX

Good Morning! As you know I have not been online the past two days

and I will start off by saying yes that my son was diagnosed on

Wednesday as having JRA. Unfortunuately we are sad to say that our

little precious is no longer with us. He passed away on

Wednesday evening of natural causes as was told to us yesterday

afternoon. I really don't know what else to say but I want to thank

you for all your support. I will leave it at that.

CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY

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I am just sitting here in shock...I have read thru our previous

exchange of posts and I knew that you were headed to the rheumy this

week...I am just in shock!

Please know that we are praying for you and so very sorry for your

trajic loss. Please come, vent, share, cry...We will be sending out

tons of cyber hugs. I just have a huge lump in my throat right now

thinking of your unexplainable loss of sweet .

(Aundrea 10 systemic jra)-

-- In , " cjb_0117 " <cjb_0117@...> wrote:

>

> Good Morning! As you know I have not been online the past two days

> and I will start off by saying yes that my son was diagnosed on

> Wednesday as having JRA. Unfortunuately we are sad to say that our

> little precious is no longer with us. He passed away on

> Wednesday evening of natural causes as was told to us yesterday

> afternoon. I really don't know what else to say but I want to thank

> you for all your support. I will leave it at that.

>

> CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY

>

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Christene, Tom and family--

I am so deeply sorry to hear of little 's passing. I cannot begin to

imagine the shock and pain that you must be experiencing. Please accept our

deepest sympathies and know that your family is in our prayers.

In Deepest Sympathy,

Beth and family

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I am sitting here stunned and shocked. My heart goes out to your family.

Please know we all care and are with you in your time of grief.

hugs Helen and (8,systemic)

Hugs..Helen

DH Dan

(22)(16)(13)Zachary(11)(8)

(6)

----Original Message Follows----

From: " cjb_0117 " <cjb_0117@...>

Reply-

Subject: Re: UPDATE ON ALEX

Date: Fri, 10 Mar 2006 11:56:33 -0000

Good Morning! As you know I have not been online the past two days

and I will start off by saying yes that my son was diagnosed on

Wednesday as having JRA. Unfortunuately we are sad to say that our

little precious is no longer with us. He passed away on

Wednesday evening of natural causes as was told to us yesterday

afternoon. I really don't know what else to say but I want to thank

you for all your support. I will leave it at that.

CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY

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Christene,

I am shocked and saddened by this news. My tears, my sorrow and my prayers go

out to you and your family. Such heartache should not have to be born.

Val

Rob's Mom (8,systemic)

Re: UPDATE ON ALEX

Good Morning! As you know I have not been online the past two days

and I will start off by saying yes that my son was diagnosed on

Wednesday as having JRA. Unfortunuately we are sad to say that our

little precious is no longer with us. He passed away on

Wednesday evening of natural causes as was told to us yesterday

afternoon. I really don't know what else to say but I want to thank

you for all your support. I will leave it at that.

CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY

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I am so sorry to hear about the loss of your son!! Your family is in my

prayers!!

(JAS, 21)

carneyval@... wrote:

Christene,

I am shocked and saddened by this news. My tears, my sorrow and my prayers go

out to you and your family. Such heartache should not have to be born.

Val

Rob's Mom (8,systemic)

Re: UPDATE ON ALEX

Good Morning! As you know I have not been online the past two days

and I will start off by saying yes that my son was diagnosed on

Wednesday as having JRA. Unfortunuately we are sad to say that our

little precious is no longer with us. He passed away on

Wednesday evening of natural causes as was told to us yesterday

afternoon. I really don't know what else to say but I want to thank

you for all your support. I will leave it at that.

CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY

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Words cannot express how sorry I am. You will all be in my prayers.

Michele

Re: UPDATE ON ALEX

Good Morning! As you know I have not been online the past two days

and I will start off by saying yes that my son was diagnosed on

Wednesday as having JRA. Unfortunuately we are sad to say that our

little precious is no longer with us. He passed away on

Wednesday evening of natural causes as was told to us yesterday

afternoon. I really don't know what else to say but I want to thank

you for all your support. I will leave it at that.

CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY

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My heart is breaking for you all. I'll keep you in my prayers.

In deepest sympathy,

and Rob 16 Spondy

On Fri, 10 Mar 2006 11:56:33 -0000 " cjb_0117 " <cjb_0117@...>

writes:

Good Morning! As you know I have not been online the past two days

and I will start off by saying yes that my son was diagnosed on

Wednesday as having JRA. Unfortunuately we are sad to say that our

little precious is no longer with us. He passed away on

Wednesday evening of natural causes as was told to us yesterday

afternoon. I really don't know what else to say but I want to thank

you for all your support. I will leave it at that.

CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY

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Oh my God. I'm so sorry to hear this news. Please know that I am praying

for you and your family. Such tragic news.

Large large hugs one the way also Hun.

~Lorilee~

Ken (Poly)

,Kayla

(Systemic)

-- In , " cjb_0117 " <cjb_0117@...> wrote:

>

> Good Morning! As you know I have not been online the past two days

> and I will start off by saying yes that my son was diagnosed on

> Wednesday as having JRA. Unfortunuately we are sad to say that our

> little precious is no longer with us. He passed away on

> Wednesday evening of natural causes as was told to us yesterday

> afternoon. I really don't know what else to say but I want to thank

> you for all your support. I will leave it at that.

>

> CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY

>

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This is tragic news.... I'm so sorry that your family is having to

expereince this.

" Natural causes' sounds ironic especialy to small precious children... sigh.

I don't know if it will help you or not but many years ago a child I knew

died as a result of severe Lupus and when I read the following poem, it

stayed in my mind and brought small points of comfort in processing the

things happening at the time.

i don't know what else to say but try and take care of yourself as much as

possible...

*Do Not Weep:

*

Do not stand at my grave and weep

I am not there, I do not sleep

I am a thousand winds that blow

I am the diamond glints on snow

I am the sunlight on ripened grain

I am the gentle autumn's rain.

When you awaken in the morning's hush

I am the swift, uplifting rush

Of quiet birds in circled flight.

I am the soft stars that shine at night.

Do not stand at my grave and cry;

I am not there, I did not die.

E.Frye 1932

On 3/10/06, ajaoky@... <ajaoky@...> wrote:

>

> I am so sorry for your loss. Please know we will be praying for you and

> your

> family during these difficult times.

> Donna

>

>

>

>

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Christene,

You, and your family are in my thoughts and prayers. As so many other have

said, I am lost for words. Sincerely,

son Joe 4 systemic JRA

Re: UPDATE ON ALEX

Good Morning! As you know I have not been online the past two days

and I will start off by saying yes that my son was diagnosed on

Wednesday as having JRA. Unfortunuately we are sad to say that our

little precious is no longer with us. He passed away on

Wednesday evening of natural causes as was told to us yesterday

afternoon. I really don't know what else to say but I want to thank

you for all your support. I will leave it at that.

CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY

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Christene,

Your family is in my thoughts and prayers, I too am at a loss for words.

I'm so sorry for your loss,

Emilie ( 6 Poly)

Re: UPDATE ON ALEX

>

>

> Good Morning! As you know I have not been online the past two days

> and I will start off by saying yes that my son was diagnosed on

> Wednesday as having JRA. Unfortunuately we are sad to say that our

> little precious is no longer with us. He passed away on

> Wednesday evening of natural causes as was told to us yesterday

> afternoon. I really don't know what else to say but I want to thank

> you for all your support. I will leave it at that.

>

> CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY

>

>

>

>

>

>

>

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Oh dear God Christene! What can I say?

I am grieving with you (my daughter is 26 months old) and my heart

goes out to you and Tom, Hannah and Zachary. Sincerest sympathies.

" Eternal rest grant to him Oh Lord,

May perpetual light shine upon him,

May he Rest In peace. "

And may God Bless your little

and may the Angels take him home.

Jo & Grant

Bayly, 3, extended oligo

Violet, 2

, 13

>

> Good Morning! As you know I have not been online the past two days

> and I will start off by saying yes that my son was diagnosed

on

> Wednesday as having JRA. Unfortunuately we are sad to say that our

> little precious is no longer with us. He passed away on

> Wednesday evening of natural causes as was told to us yesterday

> afternoon. I really don't know what else to say but I want to

thank

> you for all your support. I will leave it at that.

>

> CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY

>

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Christene - I have no words for you loss. Please know that your family

is in our thoughts and prayers.

Alia and Caroline, age 4, poly and iritis

>

> Good Morning! As you know I have not been online the past two days

> and I will start off by saying yes that my son was diagnosed on

> Wednesday as having JRA. Unfortunuately we are sad to say that our

> little precious is no longer with us. He passed away on

> Wednesday evening of natural causes as was told to us yesterday

> afternoon. I really don't know what else to say but I want to thank

> you for all your support. I will leave it at that.

>

> CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY

>

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