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DJ and the Shin family at Stanford (Read 25859 times)
DJ
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DJ and the Shin family at Stanford
Oct 22nd, 2005 at 10:26am
 
I know this is short notice and kind of a 'work in progress', but I wanted to post it anyway and give you updates on Claire Shin's progress...

Myself and the Shin family, Claire (10 year old with MM), Stanley (Dad), Alexis (Mom), and Elliott (7 year old little brother) from Georgia are here at Stanford this week.

Claire was just diagnosed a few weeks ago with MM by her doctors in GA and got out here to see Dr. Steinberg immediately.  Turns out, they are friends of my family.  I have a sweetheart of a cousin in GA who has known the Shin family for quite a while and teaches Claire and Elliott at some activities at school (long story...)

Anyway, Claire's initial MRI/MRA showed definite signs of MM and they came to Stanford to consult with Dr. Steinberg and his staff for further testing.

As it turns out, Claire's tests show MM on her right side and the beginning of MM on her left which will require unilateral surgery on her right for now, scheduled for Tuesday, Oct 25th.  I would imagine she will have just the one surgery for now and will be kept in close check for additional progression on the left, just like what happened with my MM.

Claire had her SPECT scans and angiogram over the last few days and from what I understand, they were able to find a good scalpal artery with the angiogram to be able to perform the STA-MCA procedure.  Her family is very optimistic and excited about how surgery will go.

I will be here with the Shin's through the morning of Claire's surgery but have to catch a plane back home before her surgery is finished.  I will be passing the reigns as the 'support group' over to the very capable hands of Jill and Tara who have been more than wonderful supporting many families who have come to Stanford for treatment.

Alexis and Stanley Shin have asked me to express their deepest gratitude for the support you all have given them in this time of need.  You haven't met them on the message board yet because everything happened so fast, but I'm sure you will meet them soon when they have some time to introduce themselves.

Sincerely,

DJ, Alexis and Stanley Shin

P.S.  We are all meeting with the Fong family for dinner Sunday evening.  I will post pictures of all of us as soon as possible...  Wink
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Shan
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Re: DJ and the Shin family at Stanford
Reply #1 - Oct 22nd, 2005 at 11:34am
 
Hi DJ,

Thank you for sharing and updating us on Claire.  Please let the Shin family know they are in our  Smileys and prayers.  We can't wait until things settle down, and they are able to join us online.  Wink I know it must've been (and maybe still is) a whirlwind of events for them, but things can and WILL only get better... Wink 

I believe things happen for a reason, and Claire is truly blessed to be there right now and able to receive the necessary care she needs. Wow, 10 years old?  It hits home for me as my son is 11. 

Reading about others being able to be there to support others just touches my Smiley as well, as it wasn't easy for my husband and I to be 1,000 of miles away from home experiencing this feat on our own.  I'm sure you physically being there also brings the Shin family much comfort and support. Jill, Tara and family are also angels...I'm always reading how they are ready and willing to welcome and be there for families going to Stanford.  How wonderful! Cheesy  Absolutely wonderful!
I sure hope I get a chance to meet everyone face-to-face one day... Smiley

Well, please do extend our
"Aloha"
to the Shin family and let them know that their extended MM family is thinking of them.  Smiley

Take care,
Shan
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« Last Edit: Oct 22nd, 2005 at 11:42am by Shan »  

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Lore
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Re: DJ and the Shin family at Stanford
Reply #2 - Oct 22nd, 2005 at 3:35pm
 
DJ,

Thanks for introducing us to the Shin family.

Please let them know that they and Claire are in our thoughts and prayers.

It goes without saying, how much I appreciate you, Dr. Steinberg, Teresa and Stanford Medical Center for "saving" Kevin's (Cubbie) life. I can't say enough about Dr. Steinberg and Teresa and their willingness to help Kevin when all other doctors sent him home to live out whatever life he had left.  To this day, it seems so sureal. The Shin's are in the hands of an experienced and brilliant and caring moyamoya surgeon. What else could one ask for?  Life is Grand!

I'm glad you are there to be with the Shin's and Jill and Tara taking over in your absence is super for the Shin's.

Isn't it a small world? To think the Shin's came all the way from Georgia and come to find out your family knows them. Wow!!

We will anxiously await an update on Claire and the Shin family posting on line.

By the way, how are you doing?

Hugs to all Smiley

Lore
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Re: DJ and the Shin family at Stanford
Reply #3 - Oct 24th, 2005 at 12:53am
 
Just a quick update from Stanford...

Had a very nice dinner tonight with the Shin's, Fong's, Jill and myself (Tara had to work so she wasn't able to join us).  Wanted to put up a few pics real quick so you can meet the Shin's.

Stanley, Alexis, Elliott, and Claire Shin.  Greg, Shauna, and Matthew Fong.  DJ & Jill
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Alexis, Claire, and Stanley
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DJ, Claire, and Matthew
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DJ and Claire
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Claire's surgery is still scheduled for first thing Tuesday morning.  As I said before, I have to leave before her surgery will be finished, but Jill said she will post an update as soon as Claire is out of surgery.  More to come soon...

DJ
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Lore
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Re: DJ and the Shin family at Stanford
Reply #4 - Oct 24th, 2005 at 7:20am
 
Dj,

What a handsome and beautiful group, the Shin and Fong families and you too DJ and Jill.

Thanks for the great pictures! It's always nice to put a face with a name.

We will await a progress post from Jill on Claire's surgery.

Hugs to all,

Lore
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Re: DJ and the Shin family at Stanford
Reply #5 - Oct 24th, 2005 at 8:20am
 
Ditto Lore!  What a beautiful group of people! 

DJ, lemme guess - Chili's?  Wink  We went there with Jill's family and my dad asked what the craziness with Chili's was as we had heard they went there with others, and they said you started that tradition!  Chips and salsa baby!   Smiley

Will await to hear Claire's updates...I'm sure she'll come through great!

Trina
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Shan
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Re: DJ and the Shin family at Stanford
Reply #6 - Oct 24th, 2005 at 10:09am
 
Thanks so much for sharing the beautiful pictures, DJ!  We will continue to keep Claire in our thoughts and prayers.  She is so very lucky to have a wonderful support group there with her...  I was thinking, I'm sure Cara would love to meet Claire too...someone close to her age.  ;Grin Matthew also looks a lot bigger than in the video I saw of him from Stanford ;Grin

So glad to see that everyone is able to be there to support one another!  It just touches my  Smiley...  

Sending my "Aloha" and big Smiley from Hawaii to all of you...

Have a safe trip home, DJ...

Take care,
Shan
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« Last Edit: Oct 24th, 2005 at 10:13am by Shan »  

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Re: DJ and the Shin family at Stanford
Reply #7 - Oct 24th, 2005 at 8:04pm
 
Wanted you to know my plans have changed just a tad.  I was supposed to return home tomorrow (Tuesday) but after my doctor appointment today, they want me to stay an additional angiogram.  Nothing to be overly concerned about, just an area from my xenon scan that isn't filling with oxygen as well as they'd like to see so they want me to have a new cerebral angiogram since I haven't had one in 2 1/2 years.

I'm still going to the hospital with Claire for her surgery check-in at 5:30am and will go to my appt from there (7am).  Hopefully, they will be able to get a 'perclosure' in me so I'm up and around in time to finish out the waiting with Stanley and Alexis instead of me being in bed all day!  We'll see I guess...  Either way, I'll get all of you an update on Claire (and myself) as soon as I can...

Jill, bless her heart, will have so much fun running all over the hospital tomorrow!! LOL

-DJ
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« Last Edit: Oct 24th, 2005 at 8:06pm by DJ »  

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Lore
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Re: DJ and the Shin family at Stanford
Reply #8 - Oct 24th, 2005 at 8:51pm
 
DJ,

Looks like Jill won't be the only one running around the hospital tomorrow! LOL

Jill is good at running around the hospital. I believe there were 5 of us at the same time. 3 had surgery and 2 had follow-up visits and Jill managed to sit through multiple surgeries, visit everyone and go to dinner at Chili's. "What a Woman"! Like Dr. Suess said, "This moyamoya is bold and getting old!" LOL

Well now, a cerebral angiogram? Umm? Not enough oxygen?  Smiley Thanks for the s h o c k!! I mean update! We will be waiting to hear from you Mr. Moyamoya Man! This board will be flooded with updates like that. You're our HERO! Smiley We must know you are okay.  Smiley

A suggestion: You can get the angio plug like Kevin (Cubbie) had. You don't have to stay flat for so long. Smiley I understand it is a doctor preference. You might want to make it your preference with all the activity you have scheduled for tomorrow! You have to carry a card for 30 days after you have that plug. Small thing when the plug cuts the time almost inhalf.

We will wait to hear about you and Claire tomorrow.

If you aren't able to post, have Jill  update us. We'll be waiting.

Hugs, Smiley

Lore and Kevin (Cubbie)




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gotchlorine
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Re: DJ and the Shin family at Stanford
Reply #9 - Oct 24th, 2005 at 11:09pm
 
Oh, how you guys crack me up!  You know I live for this . . . it's what keeps ME going!

I'm saying my prayers tonight for both little Claire (and her family) and DJ.  Although it will be a long day, I know everything will go well tomorrow, and one of us (DJ or me) will post an update as soon as possible.

Keep the good thoughts and prayers coming - they are so appreciated!

Big hugs,
Jill
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Re: DJ and the Shin family at Stanford
Reply #10 - Oct 25th, 2005 at 12:05am
 
Love the pics, DJ.  Jill, wish I could be there to help "run around" with you.  Kate went back to Oklahoma today for a week and it is SO quiet here.  Jon is at the tip of the Louisiana boot for two weeks. 

All my positive thoughts and prayers to Claire and her family.  Let us know how it goes.

Smiley Cass
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Shan
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Re: DJ and the Shin family at Stanford
Reply #11 - Oct 25th, 2005 at 12:06am
 
DJ,

Wow, thank you for letting us know about your angiogram.  I'm just glad that you were able to have your scan done, and get the results while you were still there.  As I mentioned to you in a PM, I'm considering having my angio on the west coast next April/May due to financial reasons...

We have all the confidence in the world that you'll do just fine. Wink 

We'll wait to hear from you, or Jill (thanks in advance Jill!  ;Grin) on how you and Claire are doing.  I just can't get over the wonderful support system!  Truly amazing...

You'll all be in my prayers...  Smiley from Hawaii...

Take care,
Shan
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Re: DJ and the Shin family at Stanford
Reply #12 - Oct 25th, 2005 at 12:21am
 
Glad I read Shan's post before I signed off.  I completely missed your angio message, DJ.  Will be sending you positive vibes all day tomorrow that all will go smoothly and you will be able to eat soon after. (That is what Kate always wanted to do after her angio!)

Anyway, "talk" with you all tomorrow.

Cass
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Re: DJ and the Shin family at Stanford
Reply #13 - Oct 25th, 2005 at 6:36pm
 
Hey everyone,

Just wanted to put up a quick post about DJ and Claire.  First of all, no news on Claire yet.  She didn't get taken in to surgery until about 12:15 pm, our time.  There won't be news until tonight, but I promise to put something up, if DJ hasn't beaten me to it!

DJ's angio went fine.  He convinced them to give him the perclosure (or whatever it's called!), so he was dressed and up and about by 2:30 pm. 

It was hard for me to see him as a patient, as he's always the one giving strength and support!  But the angio is past (yahoo!), and he'll spend the rest of the day/evening with the Shin family as they wait word on Claire's surgery.  I know it will all be good!

O.K., I have kids waiting at the pool for me, so must run.  More news as soon as it's available!

Smiley, Jill
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Shan
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Re: DJ and the Shin family at Stanford
Reply #14 - Oct 25th, 2005 at 7:05pm
 
Hi Jill,

Thanks so much for the update.  Glad to hear that DJ's angio went well.  Myprayers continue to be with Claire and her family, as well as everyone else who stands in need of the Lord's blessings. Cheesy

You need to take it easy, yourself...sounds like you could use some well deserved rest...(after the pool)  Wink

Thanks again for the update...

Take care,
Shan
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« Last Edit: Oct 26th, 2005 at 10:43am by Shan »  

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Lore
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Re: DJ and the Shin family at Stanford
Reply #15 - Oct 25th, 2005 at 10:03pm
 
Hi Jill,

Thanks for letting us know DJ's angio went well and that he got that plug so he didn't have to stay flat for hours. In my last post I mentioned carrying a card after the plug for 30 days, it is actually 90 days, not that it matters, just wanted to clarify.  How is DJ doing? Does he know anything yet about the "lack of oxygen"?

Wow! I remember Kevin went into his second surgery about the time Claire did. That makes for a very long day. I'm saying prayers for DJ and Claire.

By the way, I received a call from Maria at Stanford today about Kevin's return. Will let you know when this is al settled with him returning. God knows we have to go to Chili's! lol

I am anxiously awaiting results on Claire's surgery and knowing DJ's results.

Hugs,

Lore


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Re: DJ and the Shin family at Stanford
Reply #16 - Oct 26th, 2005 at 1:40am
 
Hello everyone!

It's been a loooooooong day for everyone involved, but wanted to get an update to you on Claire (my angio went well and everything looked good).

As Jill said earlier, Claire didn't go back to the O.R. until noonish this afternoon.  Dr. Steinberg came out around 7pm to let Stanley and Alexis know the surgery went better than expected.  He was able to not only perform the direct STA-MCA on the right side, but also an indirect procedure on the same side with basically no aditional "work"!

Seems she had two very good arteries that ran very close together on her scalp.  Instead of just using one of them, he was able to use one of them to do the STA-MCA and the other to tack to the surface of her brain for the indirect procedure.

The result of the surgery increased her bloodflow numbers on the right side from 1.8 (before surgery) to more than 17 (after surgery)!!!  Her right hemisphere is now getting 8X the bloodflow and oxygen!  Excellent news!

I did get the chance to visit with her in the ICU for a few minutes tonight, once they got her settled.  She was a little out of it still but recognized me as "Mr. DJ" (which she's called me the entire time we've been out here).  She looked absolutely wonderful for just coming out of surgery!  They shaved only a very small strip of her hair about 4-5 inches long from just above her ear, straight up.  There was a very small bandage (approx 1/2" wide) covering her incision.  There wasn't any signs of swelling or bruising, but I'm sure that will develop somewhat over the next few days.

Stanley did try and take a picture for me to post for you, but without using a flash in the ICU, it didn't come out.  I'm sure they will get more to put up as her stay progresses.  I will put them up when/if they become available.

Bottom line is her surgery went WONDERFUL, she looks GREAT, and is doing very, very well just hours after surgery.

I won't be able to step on Jill's toes by posting updates anymore as I head back home Wednesday morning.  I'm sure she'll keep us all very well informed!

Smiley

DJ
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Re: DJ and the Shin family at Stanford
Reply #17 - Oct 26th, 2005 at 2:28am
 
AMEN!

DJ,

I just couldn't go to bed tonight without checking the website for any last minute upates from either you or Jill...and to hear the absolutely wonderful news about the both of you just warms my  Smiley!  I was a little anxious about my MRI/MRA today, but that was a drop in the bucket compared to what you and Claire had to endure!  

Hey, sounds like both Claire and I have something in common...a direct AND and indirect on one side. Wink I actually had a double direct, but nonetheless, we have something in common.   Smiley

I'm so grateful to hear your angio went well!...and that Claire's prognosis and surgery was a success!  AMEN! Cheesy

Have a safe trip home...

Take care,
Shan
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« Last Edit: Oct 26th, 2005 at 11:17am by Shan »  

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Re: DJ and the Shin family at Stanford
Reply #18 - Oct 26th, 2005 at 7:22am
 
DJ,

Thanks for updating us on you and Claire given it was a very loooooong day for both of you.

Dr. Steinberg's ability never cease to amaze me. The fact he was able to do an indirect and direct on Claire at one time. Claire is in good hands and sounds like she is doing very well.

I am glad to hear your angio went well. Have a safe trip home and we will hear from you when you get back home?

I will watch for any updates from Jill and any pictures you are able to post.

Hugs,

Lore
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Re: DJ and the Shin family at Stanford
Reply #19 - Oct 26th, 2005 at 8:36am
 
Hi Shins!  I was so sorry to hear about the diagnosis for Claire, but I'm thankful you are at the right place to get her help.  I got word yesterday about her.  I'm out of the hospital myself for a couple of weeks.  Please know you are all in my thoughts and prayers.  Stanley, if I need to do anything for you guys let me know.

Hollie Tapley
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Re: DJ and the Shin family at Stanford
Reply #20 - Oct 26th, 2005 at 11:20am
 
Hi,

Our family and the Shin's are good friends and I just joined this group to share with you the good news about Claire.

I just spoke with Alexis few minutes ago who was on her way to see Claire..  Even if yesterday was a difficult day of waiting, today is filled with joy and hope!!!  Alexis said that they expect Claire to be out of the hospital as early as this Saturday.  But, she will stay in Standford for a little bit longer with Claire, just to make sure everything is fine..   If everything goes well, Claire will be back to school in no time!!!

Alexis was so thankful to Dr. Steinberg and his wonderful team, as well as the amazing supporting group from moyamoya.com.  She believes that your group and Dr. Steinberg saved Claire's life!!   

I am so grateful that Claire's surgery went well and she is doing great!! 

Most of all, I want to thank you all for your wonderful supports for the families and friends of MM patients.. 

Won Kim

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Re: DJ and the Shin family at Stanford
Reply #21 - Oct 26th, 2005 at 12:16pm
 
Hi Won,

Welcome to the MM.com family ;Grin and thank you for giving us an update on Claire.  It was so  Smileywarming to read DJ's post last night before I went to bed. (I have an 11 yr old son, so it really hit home for me.)

I am not a patient of Dr. Steinberg, but I've read much about him and how he has given others a new lease on life.  In fact, many on this site are a testimony of his knowlege and skills.. ;Grin  Claire is indeed blessed to be under his care!  Amen!

When you get a chance to speak with the Shin's, please let them know that our thoughts and prayers are still with them as Claire recovers.  She sounds like an amazing girl...and I know she'll do just fine.  Wink

Again, thank you for the update and a warm welcome to you to the mm.com family Smiley!

Take care,
Shan
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Re: DJ and the Shin family at Stanford
Reply #22 - Oct 26th, 2005 at 1:47pm
 
great news!!! I truly appreciate the updates . . Hollie in Statesboro
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Re: DJ and the Shin family at Stanford
Reply #23 - Oct 26th, 2005 at 5:08pm
 
Hi again everyone,

Just a quick note about Claire.  You've all read DJ's post from last night, but I wanted to add that she was quite coherent a remarkably short time out of surgery.  She was extremely thirsty, and announced that she was going to drink 10 bottles of water as soon as she could!  I saw her this morning/afternoon, and (though sleeping) she looked fantastic!  No visible bruising or swelling, and if you didn't know she'd had major surgery, you almost wouldn't know it.  The "gunky" stuff in her hair shows a little bit, but overall she looks just great.

Claire's family is understandably far more relaxed than they were this time yesterday.  They're waiting for an available bed on the regular ward, which will hopefully come today.  It will be nice to be away from all of the PICU sounds (beeps of the machines, etc.)!

Claire has really been a trooper through this.  Not once did she complain, and she was composed far beyond her 10 years as she  headed into surgery.  Testament to the wonderful family she's part of!

One of these days I'll join the current century and get myself a digital camera to help with pictures.  (I'm presently still relying on the old box disposables!)  Please don't give me too hard a time on that, o.k.?  Anyway, will post more when there's more to tell!

Hugs to y'all,
Jill

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Re: DJ and the Shin family at Stanford
Reply #24 - Oct 26th, 2005 at 6:40pm
 
Hi, all!  I finally had sometime to log in myself and respond to the amazing support that we received from MoyaMoya.com.  Undoubtedly, Moyamoya.com and Dr. Steinberg saved my daughter's life.  She has always been a trooper, but this time, she truly amazes me.  She still does not have any visible bruising or swelling.  She is currently watching Shark's Tale on the portable DVD player and laughing out loud.  We will put her pictures on line as soon as possible, however, my family is technically a little challenged. 

I would like to go on our journey to Stanford when I have some more time later, but I really wanted to mention the wonderful support that I got from DJ and Jill.  They are angels that lighted up our way for the whole week. 

Hopefully, I'll have more time to post tomorrow.  However, this website has enabled all my families in Korea to check Claire's status on time any time.  Thanks, Moyamoya.com.  Thank you Dr. Steinberg and his team.  You are a true genius, and a genuine doctor.

Alexis
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