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AN Community => AN Community => Topic started by: ppearl214 on August 13, 2008, 06:06:01 pm

Title: My 2-1/2 yr CK treatment results are in!
Post by: ppearl214 on August 13, 2008, 06:06:01 pm: PROCEED WITH CAUTION: POSTER IS GOING TO SHOUT FROM ROOFTOPS IN GLEE!

Well, as many of you know, I had Cyberknife (CK) on my AN 2-1/2 yrs ago..... mine was growing really quick/fast, so I decided on CK once it hit the 1cm mark. I had my CK done over 5 days for a total of 30 Gy. In my case, my ultimate/personal goal was to save whatever hearing I could, thus, I decided on a fractionated approach at a location that offers the only CK in the New England area (as of today, although, I am aware of another one forthcoming locally).

My treatment was in April 2006. Now, 2-1/2 yrs later, I had my MRI this past Monday. I am meeting with my radio team on Aug 25, but, I have the films and today I got the written report (I know, shame on me that I got all this BEFORE the dr even discusses with me).

*drumroll please*

For the past 4 MRI's done in 6 month intervals..... according to the report, we have officially stunted the brain booger's growth! YAY!!!!! No size change whatsoever and in 2 yrs, no growth!!!!!!!! (the ultimate goal of the treatment is to stop it dead in its track/core death).

For looking at the films, me sees a WHOLE LOTTA DARKNESS going on all inside the brain booger! YAY!!!!!!!!!!! I emailed a terrific MRI view over to one of the docs on the CK Patient Support Board/Forum and his comments... "so, looks like we got nothing to worry about"..... works for me.

I am also counting my blessings that my last audiology report shows my hearing at 92%, same as it was before my CK treatment, thus, my personal goal was achieved.

So, on 8/25, I will meet with the radio team, have them review everything but I have a sneaky feeling that they will be celebrating with me.

So, here's a hearty thank you to those that have been here with me since day 1, from first diagnosis and helping me get through the treatment (Hey, Captn Deb, I found that snake last week while I was driving to work... cut right in the path of my car on the road!)..... and to all those that have been there for me after-the-fact and tolerate me.

So, onward and upward. Will see what the docs say on the 25th but based on what I am seeing and reading.... I am a very happy lady!

As many of you may know, I deal with multiple, physical ailments that truly do affect my daily being, but, for me... to conquer this one, which is a small blip on the radar compared to all else I endure.... to know this is working.... I'll take it!

I also understand our realities in our AN journies that continued MRI's will happen... and I pray for no regrowth, although I keep realistic about this, but for this one day, I would like to celebrate... care to join me?

Thank you all for being there for me!

(ok, Jan and Lori, you may commence the hijack... thus, why this is posted in AN Community)

Phyl
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: elliemae on August 13, 2008, 06:28:00 pm: YAAAAYYY!

Very glad to hear your news, Phyl!

Elaine
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Soundy on August 13, 2008, 08:30:48 pm: YAY !!!

I would drink a toast to you but don't drink so sending you a flower ...by the way it is a rose... was trying to color it and making a mess of things so black and white will have to do ...imagine it pink :)

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......... \ . . . ./ . ./ .........
........... `=(\ /.=` .........
............. `-;`.-' ............
............... `)| ... , ........
................ || _.-'| ........
............. , _|| \_, / ........
....... , ..... \|| .' .............
....... |\ |\ , . ||/ .............
.... , ..\` | /|., |Y\, ............
..... '-...'-._..\||/ .............
......... >_.-`Y| ..............
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................. ..........
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Kaybo on August 13, 2008, 08:34:06 pm: Phyl~
Well, I wasn't here from Day 1, but I am glad that I am here now - my life has been truly blessed by having you in it.

YOU RAWK!!!!!!

K ;D
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: MAlegant on August 13, 2008, 08:42:24 pm: Phyl, you're awesome! Congratulations....
M
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: jerseygirl on August 13, 2008, 08:58:08 pm: Phyl,

That is just great! I am joining you in all this shouting!

Eve
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Sue on August 13, 2008, 11:27:23 pm: Couldn't be happier for you, Phyl. Having one less thing to worry about helps with everything else, I do believe. Having said that in a calm, rational voice, you will now hear unrestrained shouting, laughing and see Sue trying to do the Happy Dance. Wahoo! Hooray! ;D ;D ;D

Sue in Vancouver USA
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: ppearl214 on August 14, 2008, 05:39:48 am: well, a humbled thank you to you all... for my "pink" rose..... for the kind words.... and the virtual drinks! Me feels a martini is just what the doctor ordered (hopefully, he's buying as well!) and as for you all.... you know I'm sending the healing huggles and wellness wishes to you!

*does happy dance around desk..... trips over feet... lands on face*

ow! Great... the nose job I didn't want to pay for!!!! :)

(Thanks again all!)

Phyl
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: cindyj on August 14, 2008, 07:39:29 am: Wonderful news, Phyl! So glad your AN death continues. I'll jump up and down for you as soon as I've had my morning Coke!

Thanks for sharing the good news - you know so many here can benefit from it. Hope all other things are going ok with you,

Cindy
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Mickey on August 14, 2008, 07:48:16 am: Great News! Thans for sharing your experiences. It help so much to see all whats going on especially when there is something nice happening. Wishing you the best, Mickey
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: HeadCase2 on August 14, 2008, 08:14:34 am: AWESOME!

(http://i93.photobucket.com/albums/l46/HeadCase2/oly_g_phelps2_331.jpg)
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: sgerrard on August 14, 2008, 08:59:40 am: Phyl, I agree with Michael Phelps in the picture above!

Steve
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: wendysig on August 14, 2008, 09:25:59 am: Hi Phyl,

Great news! Having "nothing to worry about" are beautiful words! Congratulations!

Wendy
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Captain Deb on August 14, 2008, 10:59:30 am: (http://i235.photobucket.com/albums/ee60/Captdeb_photos/pug_back_scratching_lg_wht2.gif)(http://i235.photobucket.com/albums/ee60/Captdeb_photos/dog_rover_dancing_saturday_night_fe.gif)

Beanie and Sadie are ecstatic and so am I!!!

We did it!!!

We killed it dead!!!!

Death to the nasty Brain Booger!!!!!

Congrats, Phyll. Now let's get to work on the rest of you!

Big hugs and smooches to you and the Cheeky Bloke from Me, Sadie, Dr Love and the Grandscallywags

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Omaschwannoma on August 14, 2008, 12:06:21 pm: Phyl,

I would like to extend my heartfelt congratulations to you regarding your awsome report! I'm very happy for you! Prost to more good years ahead!
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Debbi on August 14, 2008, 03:27:05 pm: Phyl-

I am SO thrilled to hear your news!!!!! I declare this weekend an offical "Celebrate Phyl's MRI" holiday!!! And, I have a very nice bottle of wine to honor the occasion.

hugs to you, Phyl!

Debbi
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Jim Scott on August 14, 2008, 04:02:23 pm: Phyl:

As another AN patient who recently celebrated my 2-year MRI showing definite necrosis, I share your elation and congratulate you on this not-so-small victory in your AN journey. Way to go, Phyl! :)

No one can predict the future but I certainly hope and pray that you have many more such encouraging MRI scans.

Jim
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: MAlegant on August 14, 2008, 05:30:47 pm: And in honor of Phyl's good news, I am going to celebrate by eating ice cream. Not that I needed an excuse.
M ;D
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: windy on August 14, 2008, 05:33:37 pm: Phyl,

I am so happy for your good news!!

Windy
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Pooter on August 14, 2008, 09:10:14 pm: WOW! Congrats, Phyl! I, too, wasn't hear for the first day, but I've been continuallly encouraged by you and your posts. I'm very happy for you! That is GREAT news!

Brian

PS All this good news is what I need so I don't think about my truck that was almost broken into, lock broken, and how much it's gonna cost me to fix.. ugh! At least they can't tell me I have a brain booger too! ;)
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: krbonner on August 15, 2008, 07:57:02 pm: **doing a very bad white girl dance around the family room while trying to avoid stepping on the cat's tail and causing a ruckus that would wake all the sleeping children in the house**

Woo-hoo and a big congratulations!

;D

Katie
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Brendalu on August 16, 2008, 04:41:12 am: Phyl!

What more can I say, except WONDERFUL NEWS! Yeah! Yeah! That's great!!
Huggles and more,
Brenda :)
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: ppearl214 on August 16, 2008, 08:02:42 am: Bottles of wine... ice cream (yep, no reason needed for that!), dancing around, all the whoopla and all the wishes.... I just thank you all... truly! I couldn't get through this without you all.

Have a fab weekend! and thank you all again for the well wishes... right back atcha!
Phyl
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: leapyrtwins on August 16, 2008, 09:31:18 pm: Phyl -

while I'm not talented enough to send you awesome pictures of Michael Phelps & Co., or animated pictures of Beanie & Sadie, I hope you'll realize just how ecstatic I am by this incredible news!!!

As someone else said, I think it was my "sister" Kaybo - YOU RAWK!!! ;D

Celebrating - in absentia - right along with you!

Pop the champagne cork and raise your glass in a toast!

Jan
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Larry on August 17, 2008, 10:51:44 pm: WOO HOO
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: jb on August 18, 2008, 10:37:10 am: CONGRATS!! :D
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Esperanza on August 18, 2008, 01:29:03 pm: ;D Very, very, very, very, very HAPPY! for you, kind ladyl! ;D

x
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: ppearl214 on August 18, 2008, 02:06:12 pm: you all are gonna make me blush, dang it! :) Thank you!

the key will be next Monday's appt at BI with the radio/neuro team.... keep all appendages (ie: fingers, toes, legs, etc) crossed for good luck!.... if I get the news me thinks I'm gonna get, free rides for all on the Moderator Leer Jet! w00t! :)

thanks again... truly......

Phyl
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Pooter on August 18, 2008, 09:27:27 pm: WOO WOO! I'm first! I'm first! Congrats again! I, personally, feel no angst for your next appointment on Monday. ;) (Good luck anyhow!)

Brian
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Kaybo on August 19, 2008, 09:08:13 am: I am in the same state as Pooter - can you pick me up next??? Can we go to the island where the luau is?? Can we???

K
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: leapyrtwins on August 21, 2008, 09:34:24 am: WOW! The moderator leer jet! - so it's NOT just a figment of our imaginations!

Thanks for "coming clean", Phyl :D ;)

Best of luck on Monday, I'll be crossing everything for you plus I'll say a prayer or two.

Jan
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: ppearl214 on August 21, 2008, 09:39:07 am: *runs to get ANA office phone number to confirm the leer jet availability* :o

thanks Jan... appreciate all the wishes and prayers (from you all....) Starting to get nervous.. and bloke gave me the blessing to indulge in chocolate......

Phyl
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: leapyrtwins on August 21, 2008, 04:29:57 pm: Sounds like the bloke is a man after my own heart. Anytime you want to share the chocolate, just let me know ;D

I'm confident things will go well.

Jan
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: ppearl214 on August 22, 2008, 02:36:42 pm: *takes bite of British Cadbury*

Yep, its working.

Ok, starting to get nervous. Today has been total crap... I got ANOTHER diagnosis today (rare/incurable/benign situation...... again... more rare than my brain booger and other ailments combined :'( ) that I have to learn to deal with, so Monday better be a darn good appt... that is all I have to say..... who's with me? Yep, better be a good one.....

Phyl
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Jim Scott on August 22, 2008, 03:52:14 pm: Quote from: ppearl214 on August 22, 2008, 02:36:42 pm
*takes bite of British Cadbury*

Yep, its working.

Ok, starting to get nervous. Today has been total crap... I got ANOTHER diagnosis today (rare/incurable/benign situation...... again... more rare than my brain booger and other ailments combined :'( ) that I have to learn to deal with, so Monday better be a darn good appt... that is all I have to say..... who's with me? Yep, better be a good one...

Phyl

It wouldn't dare be otherwise. ;)

Seriously Phyl, as a fellow with a wife who suffers from and deals with a host of non-life-threatening but frustrating medical issues that are permanent, I can understand your sense of aggravation. I trust that your Monday appointment will certainly be a good one.

Jim
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: yardtick on August 22, 2008, 04:07:45 pm: I'm with you Phyl, but you have to tell us what you are dealing with.

Please try and have a good weekend....summer is coming to an end.
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: sgerrard on August 22, 2008, 07:11:12 pm: You are just a rare bird, Phyl. ::)

I have adjusted the dials and knobs for Monday's appointments, so now they should all go well. ;)

Seriously, I hope for the best - on every front.

Steve
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: leapyrtwins on August 22, 2008, 10:13:46 pm: Phyl -

sorry to hear about your other diagnosis :(

You know we're all here for you. Hang in there and keep the faith.

Since OMG hasn't been around lately, let me say it for her "Kisses to your forehead" :-*

Jan
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: ppearl214 on August 23, 2008, 06:37:59 am: thanks all for the forehead smoochies and the wellness wishes.... trying to muster back up my mental strength, yesterday was a difficult blow to it..... Jim, I know that lovely bride of your's and I have compared notes and I honestly don't know how you hang tough as well.... Bloke is hanging tough with me... I think our biggest fear has to be.... how not to overload our loved ones/spouses with the on-going issues... but, we also know true love is the key. Trying to hang tough and just taking things day by day... all I can do.

But, for this Monday...... taking all the good vibes you all are sending and going to bring them with me.....

good vibes... good vibes... good vibes.... I need some great news for a change... good vibes... good vibes....

thank you all again! Truly!
Phyl
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Omaschwannoma on August 25, 2008, 12:06:21 pm: Monday's here and I hope these good vibes have found you well, and healthy.
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: ppearl214 on August 25, 2008, 01:14:56 pm: *tip-toes in..... looks around, sees microphone in center stage... signals to lighting director to dim the lights but to keep the spotlight on the mic..... walks slowly up to the mic and taps on it to test its sound...*

TAP, TAP, TAP

*takes a deep breath.... thinks about the past 2-1/2 yrs... and the realities of this journey, for the past, the present and for the future, whatever it may hold.... then, with tears rolling down the face that hits the floor and begins to flood the forums.... with one breath.... *

IT'S AS DEAD AS A DOORNAIL!

*grins from ear to ear, begins to do Rockettes-style high-kicks as works way to side exit of stage*

Thank you ALL SO very much for your love and support! Truly! I'll be seeing them this time next year... :)

xo
Phyl
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Omaschwannoma on August 25, 2008, 01:21:36 pm: ;D ;D ;D ;D ;D ;D ;D ;D Awsome news Phyl! Jumping, leaping and cartwheeling with joy!
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: lori67 on August 25, 2008, 03:03:59 pm: Phyl -

I can't believe it has taken me this long to chime in (and you notice, I haven't even attempted hijacking...yet).

I will just add my "WWWWOOOOOOO HOOOOOOO!!!!!!!!!!" to the throngs of cheering fans!!!!!!!!

Lori - being well-behaved, as usual....(we need a little smiley with a halo..)
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: sgerrard on August 25, 2008, 09:30:07 pm: http://stevegerrard.home.comcast.net/applause2_x.wav

Steve ;D
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: leapyrtwins on August 25, 2008, 09:49:18 pm: Yea, Phyl ;D

Outstanding news!!!

Jan - fighting Lori for the smiley with the halo ;)
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Kate B on August 25, 2008, 10:10:25 pm: Doing a Happy Dance for you!!!

Kate
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: ppearl214 on August 26, 2008, 05:45:18 am: ok, are we talking THIS angel......

(http://emoticons4u.com/angels/teu35.gif)

or this angel?

(http://emoticons4u.com/angels/teu37.gif)

thank you all again... for the applause... the wishes... for ALL the support. Onward and upward to wellness for all!

Phyl
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Kaybo on August 26, 2008, 07:33:14 am: Phyl~
So happy for your good news - you deserve some positive news!! ;D

About the smileys: I think the 2nd one would be perfect for Jan AND Lori...

K
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: ppearl214 on August 26, 2008, 08:10:24 am: thanks K! :-* I knew angel option#2 was very appropriate for 1 or 2 folks in particular! ;)

Phyl
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: wendysig on August 26, 2008, 08:46:39 am: Phyl -
Congratulations on your great news! You are much braver and more patient than I could ever be. When I found out my options for treatment, I knew I could never wait two to three years to find out if my AN was dead and gone!

Wendy
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: lori67 on August 26, 2008, 09:14:37 am: Phyl and Kay -

What was that? I couldn't hear you - my halo seems to have slipped over my good ear.... :D

Lori
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Pooter on August 26, 2008, 10:04:54 am: That's great news, phyl! I'm so happy for you! The waiting, anticipation and all that seems to be the worst sometimes! But, you made it through! I'm doing the wobbly dance for you (not cuz of the AN, but cuz I'm white and can't dance). ;)

Brian
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: elliemae on August 26, 2008, 11:27:40 am: Phyl !!
DEAD is GREAT!!!!

Celebration is in order! A extra apple dumpling or two!!! ;D
(or maybe more of that dark chocolate, hmmmm?! )

Elaine
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: cindyj on August 26, 2008, 11:42:43 am: Well, alright!!! Dead - as it indeed should be! So glad your waiting is over and you got some well-deserved good news!

Never done the Happy Dance, but will sure give it a try today for you!

Cindy
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: ppearl214 on August 26, 2008, 12:12:57 pm: oh, geesh! Folks attempting to dance that don't know how.... apple dumplin's (hey elaine, go check new brunch thread! It's now being planned!)... and dipping halos..... I just adore you all.. you KNOW that, RIGHT!?!?!?!? :D

thanks all! Onward and upward....
Phyl
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: leapyrtwins on August 26, 2008, 10:18:38 pm: Quote from: Pooter on August 26, 2008, 10:04:54 am
I'm doing the wobbly dance for you (not cuz of the AN, but cuz I'm white and can't dance). ;)

I'm right there with you, Pooter!

Jan aka 2 left feet ;D
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: LADavid on August 30, 2008, 03:55:24 pm: Fantastic news, Phyl!!!!!!! (David says late in the thread). I am very happy for you.

Apologies for the delay in the wishes. I had a wicked week dealing with some vicious neighbors who don't comprehend American laws.
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: leapyrtwins on August 30, 2008, 07:56:06 pm: Sorry for the hijack, Phyl :P

David -

did the neighbor issue have to do with all their noise again? :(

Hope things turned out okay. If you don't want to talk about it "publically", feel free to vent to me via email or a PM.

I've had a rotten week myself - parts of it involved getting the locks on my house rekeyed because my daughter lost her wallet, having my car towed because it wouldn't start, and dealing with a realtor who's failed to delivery on her promises.

Here's hoping you and I both have better days in the very near future,

Jan
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Kaybo on August 31, 2008, 12:18:47 pm: Jan & David~
Sorry for the crummy weeks! Hope this one is better. David, I was wondering too about the neighbor problems...

K
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: leapyrtwins on August 31, 2008, 09:19:06 pm: Quote from: Kaybo on August 26, 2008, 07:33:14 am
Phyl~
So happy for your good news - you deserve some positive news!! ;D

About the smileys: I think the 2nd one would be perfect for Jan AND Lori...

K

Somehow I missed this response. I think angel #2 definitely looks like Lori. But me ???

Why, K, whatever do you mean?? :D

Jan
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Kaybo on August 31, 2008, 09:44:30 pm: ** doughdy, dough, dough, dough....********** humming as I walk along.... ;)

K ;D
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: tenai98 on September 01, 2008, 09:32:03 am: Phyl
That is such great news.... ;D

I am so happy for you. Hear Hear, drinks for everyone in this forum
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: Lainie181818 on September 01, 2008, 10:09:17 am: Congratulations Phyl, that is fantastic. I will enjoy a Cadbury's chocolate bar with my cup of tea to celebrate.
Lainie.
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: leapyrtwins on September 01, 2008, 10:15:38 am: Drinks AND chocolate!! ;D

Phyl, we must keep these two on the forum - my kind of members :D

Jan
Title: Re: My 2-1/2 yr CK treatment results are in!
Post by: ppearl214 on September 01, 2008, 06:33:33 pm: Quote from: leapyrtwins on September 01, 2008, 10:15:38 am
Drinks AND chocolate!! ;D

Phyl, we must keep these two on the forum - my kind of members :D

Jan

but their halos are on straight! ;D

*does mad dash out of thread*

(thanks again all... we've pretty much been celebrating non-stop! My family is overwhelmed that my "gut" was the right choice.... :) )