Cailin update - a bit miraculous

[Guest guest]

Hi-

I've been hesitating to post... because despite my rational mind, I can't help

feeling a little superstitious. As soon as you spread good news with Arthur,

things seem to turn south. I'm also painfully aware of the kids like Josh,

Hunter, Elijah etc. that are struggling right now. But maybe this will send out

some hope.....

Caitlin just had her second COMPLETELY NORMAL blood test results! The first

were in December. We had a bit of a rough patch in early January and she had a

pred pulse. That pulse ended Jan. 16. No pred since then. No Humira since

then. Just MTX. And she had her second test 10 days ago - normal. We saw her

doc last week and he says she looks better than he has ever seen her. These are

the only two normal blood tests she has had since diagnosis in July 2001. No

hot joints, no fevers... she doesn't nap anymore. This is a different child!

For those of you that don't know us, Caitlin has had a very stubborn case of

systemic JRA. She has tried virtually all medicine suggested - Enbrel, Kineret,

Remicade, Humira, thalidomide, IVIG, cytoxan, cyclosporine, Naprosyn, MTX....

and we have never been able to get normal results or have more than a few weeks

without big joint problems. So.... there really is no explanation for why

things are going well now. But then, there is often so much that makes no sense

with this disease.

For now, I can't stop holding my breath! And I am so grateful for every one

of these good days. It's giving her a great opportunity to try to regain some

of the range lost in the past years... in the wrists, ankles and hips

especially. I thank God for this wonderful turn and hope and pray it

continues......

Best hopes and wishes for all our kids!

Colleen (mom to Caitlin, 7, systemic)

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

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

[Guest guest]

Dear Colleen - thank you for your update and good news. I am so happy for you

and Caitlin and we can only cross our fingers it continues. I was curious what

dose of pulse you did and for how long? I am so curious, especially after

hearing of another little boy with systemic jra whose disease went into

remission permanently (10 years ago) after some pulsing for a year or two.

Thanks for your info. Jan and Louis, systemic JRA age 6

Cailin update - a bit miraculous

Hi-

I've been hesitating to post... because despite my rational mind, I can't help

feeling a little superstitious. As soon as you spread good news with Arthur,

things seem to turn south. I'm also painfully aware of the kids like Josh,

Hunter, Elijah etc. that are struggling right now. But maybe this will send out

some hope.....

Caitlin just had her second COMPLETELY NORMAL blood test results! The first

were in December. We had a bit of a rough patch in early January and she had a

pred pulse. That pulse ended Jan. 16. No pred since then. No Humira since

then. Just MTX. And she had her second test 10 days ago - normal. We saw her

doc last week and he says she looks better than he has ever seen her. These are

the only two normal blood tests she has had since diagnosis in July 2001. No

hot joints, no fevers... she doesn't nap anymore. This is a different child!

For those of you that don't know us, Caitlin has had a very stubborn case of

systemic JRA. She has tried virtually all medicine suggested - Enbrel, Kineret,

Remicade, Humira, thalidomide, IVIG, cytoxan, cyclosporine, Naprosyn, MTX....

and we have never been able to get normal results or have more than a few weeks

without big joint problems. So.... there really is no explanation for why

things are going well now. But then, there is often so much that makes no sense

with this disease.

For now, I can't stop holding my breath! And I am so grateful for every one

of these good days. It's giving her a great opportunity to try to regain some

of the range lost in the past years... in the wrists, ankles and hips

especially. I thank God for this wonderful turn and hope and pray it

continues......

Best hopes and wishes for all our kids!

Colleen (mom to Caitlin, 7, systemic)

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

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

[Guest guest]

I'm soooo happy to hear that Caitlin is doing so well. I sure wish

could have some time like that too. Wonderful news.

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Healthy Thank God}

18 {Asthma}

~~~~~~~~~~~~~~~~

-------------- Original message --------------

From: Colleen <bookissmom@...>

Hi-

I've been hesitating to post... because despite my rational mind, I can't help

feeling a little superstitious. As soon as you spread good news with Arthur,

things seem to turn south. I'm also painfully aware of the kids like Josh,

Hunter, Elijah etc. that are struggling right now. But maybe this will send out

some hope.....

Caitlin just had her second COMPLETELY NORMAL blood test results! The first

were in December. We had a bit of a rough patch in early January and she had a

pred pulse. That pulse ended Jan. 16. No pred since then. No Humira since

then. Just MTX. And she had her second test 10 days ago - normal. We saw her

doc last week and he says she looks better than he has ever seen her. These are

the only two normal blood tests she has had since diagnosis in July 2001. No

hot joints, no fevers... she doesn't nap anymore. This is a different child!

For those of you that don't know us, Caitlin has had a very stubborn case of

systemic JRA. She has tried virtually all medicine suggested - Enbrel, Kineret,

Remicade, Humira, thalidomide, IVIG, cytoxan, cyclosporine, Naprosyn, MTX....

and we have never been able to get normal results or have more than a few weeks

without big joint problems. So.... there really is no explanation for why

things are going well now. But then, there is often so much that makes no sense

with this disease.

For now, I can't stop holding my breath! And I am so grateful for every one

of these good days. It's giving her a great opportunity to try to regain some

of the range lost in the past years... in the wrists, ankles and hips

especially. I thank God for this wonderful turn and hope and pray it

continues......

Best hopes and wishes for all our kids!

Colleen (mom to Caitlin, 7, systemic)

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

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

[Guest guest]

---Colleen.

I am soo glad you shared this....we have to enjoy the small

miricles. Im like you, always worried if I share good news, it will

all come crashing down.

Caitlin has had such a long and rocky road. I am SOOO happy for her

( and you!) that shes feleing good and enjoying the small things in

life.

You put a smile on my face this afternoon!!!!

hugs Helen and (8,systemic)

p.s what drugs is Caitlin currently taking???

In , Colleen <bookissmom@...> wrote:

>

> Hi-

>

> I've been hesitating to post... because despite my rational

mind, I can't help feeling a little superstitious. As soon as you

spread good news with Arthur, things seem to turn south. I'm also

painfully aware of the kids like Josh, Hunter, Elijah etc. that are

struggling right now. But maybe this will send out some hope.....

>

> Caitlin just had her second COMPLETELY NORMAL blood test

results! The first were in December. We had a bit of a rough patch

in early January and she had a pred pulse. That pulse ended Jan.

16. No pred since then. No Humira since then. Just MTX. And she

had her second test 10 days ago - normal. We saw her doc last week

and he says she looks better than he has ever seen her. These are

the only two normal blood tests she has had since diagnosis in July

2001. No hot joints, no fevers... she doesn't nap anymore. This is

a different child!

>

> For those of you that don't know us, Caitlin has had a very

stubborn case of systemic JRA. She has tried virtually all medicine

suggested - Enbrel, Kineret, Remicade, Humira, thalidomide, IVIG,

cytoxan, cyclosporine, Naprosyn, MTX.... and we have never been able

to get normal results or have more than a few weeks without big

joint problems. So.... there really is no explanation for why

things are going well now. But then, there is often so much that

makes no sense with this disease.

>

> For now, I can't stop holding my breath! And I am so grateful

for every one of these good days. It's giving her a great

opportunity to try to regain some of the range lost in the past

years... in the wrists, ankles and hips especially. I thank God for

this wonderful turn and hope and pray it continues......

>

> Best hopes and wishes for all our kids!

>

> Colleen (mom to Caitlin, 7, systemic)

>

>

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

>

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

>

>

[Guest guest]

HI Helen-

Thank you so much. It's bittersweet...as it seems to have come when so many,

like Nick, are struggling.

As for meds.... only MTX. And a smaller dose than she should have for her

weight. She is now almost 50 lbs, and she is only on 10mg/week - about half

what it should be. LIke I said - unexplainable....

Take care-

Colleen

hburger64 <hburger64@...> wrote: ---Colleen.

I am soo glad you shared this....we have to enjoy the small

miricles. Im like you, always worried if I share good news, it will

all come crashing down.

Caitlin has had such a long and rocky road. I am SOOO happy for her

( and you!) that shes feleing good and enjoying the small things in

life.

You put a smile on my face this afternoon!!!!

hugs Helen and (8,systemic)

p.s what drugs is Caitlin currently taking???

In , Colleen <bookissmom@...> wrote:

>

> Hi-

>

> I've been hesitating to post... because despite my rational

mind, I can't help feeling a little superstitious. As soon as you

spread good news with Arthur, things seem to turn south. I'm also

painfully aware of the kids like Josh, Hunter, Elijah etc. that are

struggling right now. But maybe this will send out some hope.....

>

> Caitlin just had her second COMPLETELY NORMAL blood test

results! The first were in December. We had a bit of a rough patch

in early January and she had a pred pulse. That pulse ended Jan.

16. No pred since then. No Humira since then. Just MTX. And she

had her second test 10 days ago - normal. We saw her doc last week

and he says she looks better than he has ever seen her. These are

the only two normal blood tests she has had since diagnosis in July

2001. No hot joints, no fevers... she doesn't nap anymore. This is

a different child!

>

> For those of you that don't know us, Caitlin has had a very

stubborn case of systemic JRA. She has tried virtually all medicine

suggested - Enbrel, Kineret, Remicade, Humira, thalidomide, IVIG,

cytoxan, cyclosporine, Naprosyn, MTX.... and we have never been able

to get normal results or have more than a few weeks without big

joint problems. So.... there really is no explanation for why

things are going well now. But then, there is often so much that

makes no sense with this disease.

>

> For now, I can't stop holding my breath! And I am so grateful

for every one of these good days. It's giving her a great

opportunity to try to regain some of the range lost in the past

years... in the wrists, ankles and hips especially. I thank God for

this wonderful turn and hope and pray it continues......

>

> Best hopes and wishes for all our kids!

>

> Colleen (mom to Caitlin, 7, systemic)

>

>

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

>

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

>

>

[Guest guest]

HI Jan-

Caitlin has followed an oral pulse fairly regularly since onset. She takes

20mg, 3 times a day for five days... then is off for 14-21 days. We try to get

all the way to 21 days... but if she starts to tank, we have to pulse earlier.

Her docs have always preferred this to a daily dose... but many times, she has

needed that as well.

Hope this helps-

Colleen (mom to Caitlin, 7, systemic)

jatwill@... wrote: Dear Colleen - thank you for your update and good

news. I am so happy for you and Caitlin and we can only cross our fingers it

continues. I was curious what dose of pulse you did and for how long? I am so

curious, especially after hearing of another little boy with systemic jra whose

disease went into remission permanently (10 years ago) after some pulsing for a

year or two. Thanks for your info. Jan and Louis, systemic JRA age 6

Cailin update - a bit miraculous

Hi-

I've been hesitating to post... because despite my rational mind, I can't

help

feeling a little superstitious. As soon as you spread good news with Arthur,

things seem to turn south. I'm also painfully aware of the kids like Josh,

Hunter, Elijah etc. that are struggling right now. But maybe this will send

out

some hope.....

Caitlin just had her second COMPLETELY NORMAL blood test results! The

first

were in December. We had a bit of a rough patch in early January and she had

a

pred pulse. That pulse ended Jan. 16. No pred since then. No Humira since

then. Just MTX. And she had her second test 10 days ago - normal. We saw

her

doc last week and he says she looks better than he has ever seen her. These

are

the only two normal blood tests she has had since diagnosis in July 2001. No

hot joints, no fevers... she doesn't nap anymore. This is a different child!

For those of you that don't know us, Caitlin has had a very stubborn case of

systemic JRA. She has tried virtually all medicine suggested - Enbrel,

Kineret,

Remicade, Humira, thalidomide, IVIG, cytoxan, cyclosporine, Naprosyn, MTX....

and we have never been able to get normal results or have more than a few

weeks

without big joint problems. So.... there really is no explanation for why

things are going well now. But then, there is often so much that makes no

sense

with this disease.

For now, I can't stop holding my breath! And I am so grateful for every one

of these good days. It's giving her a great opportunity to try to regain some

of the range lost in the past years... in the wrists, ankles and hips

especially. I thank God for this wonderful turn and hope and pray it

continues......

Best hopes and wishes for all our kids!

Colleen (mom to Caitlin, 7, systemic)

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

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

[Guest guest]

Colleen,

This is such excellant news.I so pray it continues for Caitlin and the weeks

turn into months and then years.

Everything will be crossed.

God works in mysterious ways and Caitlen is proof of that.

Love and hugs

Becki and 7 systemic

[Guest guest]

Thanks for that info. I read somewhere of a pulse of 500mg and was amazed, but

yours was obviously smaller. We need to consult our doctors about the pulse

idea. Thanks again. Jan

Cailin update - a bit miraculous

Hi-

I've been hesitating to post... because despite my rational mind, I can't

help

feeling a little superstitious. As soon as you spread good news with Arthur,

things seem to turn south. I'm also painfully aware of the kids like Josh,

Hunter, Elijah etc. that are struggling right now. But maybe this will send

out

some hope.....

Caitlin just had her second COMPLETELY NORMAL blood test results! The

first

were in December. We had a bit of a rough patch in early January and she had

a

pred pulse. That pulse ended Jan. 16. No pred since then. No Humira since

then. Just MTX. And she had her second test 10 days ago - normal. We saw

her

doc last week and he says she looks better than he has ever seen her. These

are

the only two normal blood tests she has had since diagnosis in July 2001. No

hot joints, no fevers... she doesn't nap anymore. This is a different child!

For those of you that don't know us, Caitlin has had a very stubborn case of

systemic JRA. She has tried virtually all medicine suggested - Enbrel,

Kineret,

Remicade, Humira, thalidomide, IVIG, cytoxan, cyclosporine, Naprosyn, MTX....

and we have never been able to get normal results or have more than a few

weeks

without big joint problems. So.... there really is no explanation for why

things are going well now. But then, there is often so much that makes no

sense

with this disease.

For now, I can't stop holding my breath! And I am so grateful for every one

of these good days. It's giving her a great opportunity to try to regain some

of the range lost in the past years... in the wrists, ankles and hips

especially. I thank God for this wonderful turn and hope and pray it

continues......

Best hopes and wishes for all our kids!

Colleen (mom to Caitlin, 7, systemic)

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

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

[Guest guest]

Colleen:

I'm a bit late here, but just wanted to send along my joy in hearing that

Caitlin is doing so very well. May it continue forever!

and Rob 16 Spondy

On Mon, 27 Feb 2006 09:11:05 -0800 (PST) Colleen

<bookissmom@...> writes:

Hi-

I've been hesitating to post... because despite my rational mind, I

can't help feeling a little superstitious. As soon as you spread good

news with Arthur, things seem to turn south. I'm also painfully aware of

the kids like Josh, Hunter, Elijah etc. that are struggling right now.

But maybe this will send out some hope.....

Caitlin just had her second COMPLETELY NORMAL blood test results! The

first were in December. We had a bit of a rough patch in early January

and she had a pred pulse. That pulse ended Jan. 16. No pred since then.

No Humira since then. Just MTX. And she had her second test 10 days

ago - normal. We saw her doc last week and he says she looks better than

he has ever seen her. These are the only two normal blood tests she has

had since diagnosis in July 2001. No hot joints, no fevers... she

doesn't nap anymore. This is a different child!

For those of you that don't know us, Caitlin has had a very stubborn

case of systemic JRA. She has tried virtually all medicine suggested -

Enbrel, Kineret, Remicade, Humira, thalidomide, IVIG, cytoxan,

cyclosporine, Naprosyn, MTX.... and we have never been able to get normal

results or have more than a few weeks without big joint problems. So....

there really is no explanation for why things are going well now. But

then, there is often so much that makes no sense with this disease.

For now, I can't stop holding my breath! And I am so grateful for

every one of these good days. It's giving her a great opportunity to try

to regain some of the range lost in the past years... in the wrists,

ankles and hips especially. I thank God for this wonderful turn and hope

and pray it continues......

Best hopes and wishes for all our kids!

Colleen (mom to Caitlin, 7, systemic)

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

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

[Guest guest]

WOW Coleen!!!!!

That is such spectacular news about Caitlin being so close to, shall

we dare say, medicated control. We can all appreciate the

superstitious feeling, but please breath. I pray the worst is over

for you guys.

Hugs,

Stacia