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... 

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

Lore

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

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.  ; Matthew also looks a lot bigger than in the video I saw of him from Stanford ;

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

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

Have a safe trip home, DJ...

Take care,
Shan

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?  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! We must know you are okay. 

A suggestion: You can get the angio plug like Kevin (Cubbie) had. You don't have to stay flat for so long. 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,

Lore and Kevin (Cubbie)

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.

Cass

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

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.

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

Thanks again for the update...

Take care,
Shan

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!



DJ

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

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

great news!!! I truly appreciate the updates . . Hollie in Statesboro

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