RE: Talking about the other R word this time..

[Guest guest]

WHOHOO, congrats . I hope and pray remission is yours! What a

remarkable word!

Take care.

Patty

[Guest guest]

September 14th will make it a year. So its a little under a year. Yeah I

heard they are using it for spondy, that's what I was thinking to kick the JRA

out first then the spondy.. Rob is in my prayers as he undergoes his biopsy.

The camp is less of an emotional ride then you think the week is just about

kids being kids you rarely remember they have cancer..its when camp ends and

everyone returns to life you remember that some of these kids dont make it

back..

but then knowing that every year that number becomes less and less makes

things better. A lot of the kids are in remission and have been for years. I

feel

priveledged to be apart of it. I hope the Enbrel does wonders for Rob.. I

think it will

Lots of Love

[Guest guest]

:

I hope hope hope that this is your answer!

How long have you been on Enbrel now?

You know, they are using it for spondy now...if your other symptoms are

responding maybe the spondy is next. I will be very curious about your

results in that direction because as you know Rob is getting ready to

start Enbrel...its in our fridge right now just waiting for the official

word after his biopsy.

You are so wonderful to volunteer at the cancer camp. You are very brave.

I don't know many people your age who would take on that kind of an

emotional ride...and I am sure that you are well-loved at the camp

because you have such a compassionate heart. You are so special.

I'll be keeping fingers, toes and everything crossed that you continue to

improve!

and Rob 15 Spondy

On Thu, 5 Aug 2004 17:13:22 EDT bncknwurnumber@... writes:

Remission.. Looks like that's where I might be headed. Since starting the

once a week Enbrel dosage my JRA has pretty much subsided. The rheumy

was

shocked at how well I was feeling especially so soon after camp (im

usually dead

when I get home from camp) well not this time around.. no joint pain..no

stiffness. In fact it seems to be no evidence of JRA. Its been amazing.

The spondy

is still there and there is really no change.. But who cares.. the JRA is

doing great. It was the best appointment I have ever had. Granted I

still got

blood work but they were so happy with my progress. And for once I heard

no bad

news at this appointment. So after leaving the appointment in record

time

might I add my mom took me to go get pampered. I'm just hoping this

keeps going

in this direction and that remission from at least the JRA will be mine.

If

I have to keep the spondy ok fine whatever at least the jra is going

away. My

doctors were a little skeptical and told me to not get my hopes up that

this

could be just a calm before the storm.. but you know what I'd rather

think

that this is just the beginning of good things to come. I haven't felt

this good

in thirteen years..and you know what I think its just going to keep

getting

better.

[Guest guest]

Glad to hear you had such great news ! I, too, hope you can use the

R word soon. Michele (17, pauci & spondy)

Talking about the other R word this time..

Remission.. Looks like that's where I might be headed. Since starting

the

once a week Enbrel dosage my JRA has pretty much subsided. The rheumy

was

shocked at how well I was feeling especially so soon after camp (im

usually dead

when I get home from camp) well not this time around.. no joint pain..no

stiffness. In fact it seems to be no evidence of JRA. Its been

amazing. The spondy

is still there and there is really no change.. But who cares.. the JRA

is

doing great. It was the best appointment I have ever had. Granted I

still got

blood work but they were so happy with my progress. And for once I

heard no bad

news at this appointment. So after leaving the appointment in record

time

might I add my mom took me to go get pampered. I'm just hoping this

keeps going

in this direction and that remission from at least the JRA will be mine.

If

I have to keep the spondy ok fine whatever at least the jra is going

away. My

doctors were a little skeptical and told me to not get my hopes up that

this

could be just a calm before the storm.. but you know what I'd rather

think

that this is just the beginning of good things to come. I haven't felt

this good

in thirteen years..and you know what I think its just going to keep

getting

better.