New Year's Blessings

January 1, 2006

Hi all-

The year is coming to a close (less than six hours left on this coast) and I

am pondering all of my blessings. This group of people is pretty high on the

list! I just wanted to thank everyone - for all the times you have reached

across the miles to send your knowledge, your support, your kindness. You

really make the world much less scary and make the struggle with this disease

much more tolerable. I come here quietly, when the world is too much - and I

find solace and direction. I come here loudly, to scream when the injustice of

this disease is overhwelming, and this is my padded room - my sounding board.

And sometimes, for no reason other than it is comfortable - I come here. But

this place has been a big part of this last year and will be into the next......

On that note, I am praying hard that 2006 will bring good news on all fronts -

new research, new medications, new hope for the future. Less pain, less aching,

less struggling. Let's hope this damn roller coaster slows down so that not so

many kids are flaring... and then hopefully, people can get off!

Personally, we have had a turn-around nothing short of miraculous. With no

other medications to try, Caitlin was back on daily prednisone through the fall,

in addition to Humira, MTX and high dose pred pulses. We were hanging by a

thread waiting for the next clinical trial. After her pulse at Thanksgiving,

she improved.... so much so that we were able to wean the pred to 7, then 5,

then 3. Her labs before Christmas were normal - I swear - the first time since

diagnosis four years ago. And the day after Christmas was her last dose of

pred. I'm holding my breath.... but this girl we saw on Christmas morning has

not been seen since before Arthur - she opened all her presents in the morning,

without needing a break - didn't have a nap. There wasn't a warm joint or a dry

eye in the house.

It's a flicker of hope in my heart and soul - and ember that has been buried

for awhile. I'm blowing on it so much with my prayers and thanks... I can only

hope it will catch fire and burn for awhile. I suspect the coaster will reach

the crest and head down again - but each day she takes the stairs instead of the

elevetor, and actually is able to run.... is like a miraculous holiday. I wish

the same holiday for everyone, everyday, throughout this coming year.

Blessings to you all and Happy New Year!!!!

From my cozy in-laws quarters in very rainy Oregon-

Colleen (mom to Caitlin, 7, systemic)

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