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Meetings and Gatherings >> Local Meetings and Gatherings >> My Stanford Visit
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Message started by tiomasai on May 9th, 2006 at 1:51am

Title: My Stanford Visit
Post by tiomasai on May 9th, 2006 at 1:51am
Hello All!

I just got back from my first real vacation in 2 plus years.  9 days in sunny California…what more could anyone ask for.  Of course, part of my week was spent with MoyaMoya patients and their families, and I wanted to share some of my experiences with you all:

Monday:  Met up with Michelle and Shane at the hospital.  Shane was in for a follow-up.  While he was getting a SPECT scan, Michelle was waiting in the MRI reception when I arrived.  We decided that the MRI reception area needed a makeover…she dared me to re-arrange the chairs (the patterns were all wrong).  I set about to do so, when Shane walked in with his technician.  The technician asks if I lost something.  Caught red-handed, I said “uh, sure” though I don’t tell her it’s my head!  ;)  

Jill met us down there, and we headed off for a mini gathering at… of course, Chili’s.  We picked up Jan and her mom on the way (they’re from Hawaii).  Jan looks great after her two surgeries.  At Chili’s, we met up with the Rowlands from NY (Mark was in for follow-up), Lore and Kevin from Ohio (Kevin was in for follow-up too) and Tammi and her family from Montana (Tammi had her surgery last Wednesday).  Campbell and Tara came as well.  Chili’s was a blast.  We planned to call DJ from his favorite restaurant, but we forgot.  I claim … uh, Moya Moya.  The hot topic of discussion is how many people saw Dr. McDreamy (oops, I mean Dr. Dodd) that day.  

Wednesday:  Angiograms all around.  Kevin and Shane had theirs in the AM.  APPARENTLY, I missed all the morning fun.  McDreamy was their neuroradiologist, and he took pics with the patients (SOMEONE DROPS THE PHOTO OPPORTUNITY YET AGAIN - uhhem).  While I saw McDreamy from afar in the waiting room, I got no photo op.  Later, while having lunch in the cafeteria, Michelle thought she saw McDreamy.  We ran into Jan and her mom there as well; Jan said she saw McDreamy too.  I think everyone is just day’mcdreaming’ now.  

Thursday:  We stopped by to see Tammi, who was sleeping but looked great.  Hang in there, Tammi, one more to go!!  We ran into Dr. Ryu – chief neurosurgery resident this year.  He managed to remember Michelle, Shane and I!!  He’s staying at Stanford after he's done with residency.  We’re thrilled for him - he's awesome!  

Friday:  I stopped by the hospital in the morning.  Another patient, who happens to be Bengali-Indian (like me), was having an angiogram.  I hung out for a while with JoAnn too (for those Steinberg patients who don’t remember, she’s the Doppler lady).  She’s awesome as usual – miss you Joann, and Goddessa T. Frog!! ;)  

Saturday:  One of the highlights of course was the Stanford Moya Moya patient gathering.  Quite a few patients attended, either local ones or ones from afar who came in for follow-ups or surgeries.  I won’t list them all here, as I didn’t get a chance to meet everyone so I’m sure to miss some names (but I hope to see everyone again in Orlando!!).  

Actually, I was quite sadly preoccupied with my new $4.99 whiffle ball set…of course, no whiffle ball was actually played but Tara managed to throw quite a few right at me!  Next time dear don’t aim at the head!  And thanks to Matt and Taylor for getting out all the balls that got stuck in the tree!!

The event overall was great.  Nurses Teresa and Joli and staff Jill and Joann came to the event as well!  JoAnn behaved… for the most part.  ;)  Dr. Steinberg also made a brief appearance.  Unfortunately, he had surgery on Sunday so he couldn’t stay long.  That being said, the star of the afternoon was a no-show.  Due to the surgery on Sunday, we heard McDreamy actually got called in on Saturday.  Quite a few fans were disappointed.  (And for the record, I claim innocence on anything stupid I said on the video – Shane made me do it  [smiley=laugh.gif] ).  

And that being said, as promised, I did get a picture of Dr. Dodd.  Just not the way you would expect.  I think the photo was never meant to happen, considering every other person I know was running into him left and right.  The picnic was my last chance, and there was no photo op there either.  I suppose there’s always next year.  BUT, Ron Rowland to the rescue.  Ron managed to get a photo of his son Mark with McDreamy last Monday.  SO…here’s my picture:

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Yup…it’s a photo of a photo of McDreamy.  But it’s a photo.  That’s my story and I’m stickin’ to it!

In any case, I just want to reemphasize how much I value my Moya Moya family.  Some of us were running around the halls this past week like alumni returning to our high school.  Not all the ‘students’ were in the same class, and some of us are not even in the same school, but our lives are forever bonded by our common experiences.  

Wishing you all well.  Until next time…

Hugs,
Trina

Title: Re: My Stanford Visit
Post by tiomasai on May 9th, 2006 at 1:53am
Ok all -- forgive the technical delay...I'm still trying to figure out how to upload the picture.  Any suggestions?

Title: Re: My Stanford Visit
Post by tiomasai on May 11th, 2006 at 9:42pm
Technical delay over -- picture attached!  Enjoy!

Title: Re: My Stanford Visit
Post by gotchlorine on May 14th, 2006 at 2:18am
Finally - time to sit down and write here on the site!  I really must add to the tale of Trina's visit to Stanford . . . .

It was wonderful to see so many friends over the last couple of weeks.  Having a group here all at once, albeit for testing or surgeries, is always terrific.  What Trina doesn't completely confess is the fact that she was here purely for social reasons.  Tests?  No.  Dr. appointments?  No.  Business?  No.  She flew all the way across the country just for fun!  And what fun we had.  Actually, there's a statement she made the last time she was here (November) that reverberates through my mind.  "You know, for a group of people affected by this awful disease, we sure do have alot of fun!"  The culmination of the week was the Stanford gathering last Saturday - 17 MM patients and their families attended.  Many had never met another MM patient, can you imagine?  I'm hoping it becomes an annual event, one that grows with each passing year.

I'll echo Trina's sentiments about being bonded by common experiences.  Campbell, Tara and I can't imagine our lives without the people we've met in the last two years, and it's getting difficult to remember what life was like before MM became part of our vocabularies.  As I've said before, I wouldn't trade where we are now for anything!

On that note, I'm heading off to bed.  Happy Mothers Day to all you moms, and lots of love to my entire MM family!

[smiley=hug.gif]Jill  

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