My daughter,Paige,is scheduled for direct bypass next week,Sept.7.The anxiety and stress is already setting in for her father and myself.And I know that it will only get worse for us as the date gets closer.I am really dreading the day of surgery and the wait for her to come out of surgery.I have a good feeling about it but as most of you know,a good feeling doesn't always keep you from being scared.Please keep Paige in your prayers as she gets ready for this and us that we will stay strong for her.Thank you all.I will post an update as soon as possible after her surgery.

Jennifer

Jennifer -

Who is doing Paige's surgery?

-Shari

Dr.Rick Boop at LeBonheur Children's Hospital in Memphis,TN will be doing the surgery.Paige was already a patient at St.Jude Children's Hospital,where Dr.Boop also works.After,her insurance denied her having surgery by Dr.Steinberg,and me refusing to let a doctor at Vanderbilt in Nashville do the surgery because of how he treated us(he told me that it was my fault she had MM),her doctor at St.Jude set up an app.with Dr.Boop there.It was such a hassle to find someone willing to do the surgery that her insurance would cover but I kept fighting because I refused to let a dr who I wasn't comfortable with do brain surgery on my daughter.Now I am completely comfortable with Dr.Boop and my decision.

Hi Jennifer,

Without a doubt we’ll be right there with Paige in spirit and in prayer every step of the way!! I can’t even imagine the anxiety and stress a parent must go through when their child is having brain surgery, God bless ya's! Please know you two are in our thoughts and prayers as well.

Hang in there and know we’re here for you. Please keep us posted.

[smiley=hug.gif]Please give Paige a big hug for us and I hope you find comfort in knowing you’ll have good thoughts and prayers coming your way from your MM family all over the country, so ya can’t beat that.  [smiley=thumb.gif]

Mar

Jennifer,
                Our thoughts and prayers are with Paige and your family. You tried your best and thats all you can do, I'm sure she'll do fine and yes I feel your pain, anxiety, worry everything. My daughter had surgery in 2003 at Stanford she is 20. How old is Paige? You'll be surprised at how strong the kids are and how they bounce back. Hang in there we're here for ya!
                           Nancy ;;D

Hi Jennifer,

We will keep your Paige in our prayers for a quick recovery from her surgery.  I feel your anxiety and stress, as we are waiting for November to have Taylor's follow-up appointment with Dr. Steinberg.  That will hopefully determine when she'll need her second surgery for her other side.  The first time wasn't so stressful because it happend so fast, and the second time will be stressful, but at least I know what to expect.  Your daughter will do fine and she'll recover quickly too.  Kids are amazing at how quickly they rebound from everything.

We'll keep her and your family in our prayers.

MaryAnn

Hi Jennifer :)Paige will be in my Prayers also as well as your family......I can not even imagine what parents go thru since I am an adult w/mm :D Keep us posted as to how she is doing.....I had my 1st Major Stroke in Nov. 1997 but wasn't DXed till my first surgery on New Years Eve.1998-99 and at that time there was only 350 people in the United States DXed with it,,,,,And no information about it, BUT Thanks to DJ that has ALL Changed....... ;;DHang in there,,,,,,I'm sure she will do fine,,,,,

Jennifer:

I understand the stress but don't worry - it's just a great thing that Paige can now get her surgery!  I'm sure come through it with flying colors!  I'll be thinking of her, and you and the rest of the family as well as I know it's hardest for you all.  

Keep us posted,
Trina

Hi Jennifer,

I have been thinking about you and Paige. I'm glad to hear Paige is finally having surgery. It is only natural for you and your husband to feel the anxiety. This is your precious baby. It's like Nancy said, these children are real troopers and it is amazing to me how they bounce back. Stay strong and know that you are all in our thoughts and prayers.

Keep us posted.

Hugs,

Lore

Hi, Jennifer.  I am glad you found a surgeon you feel comfortable with.. that is SO important, and I am glad you fought for it.  I know this is nervewracking.  Just try to think that every day that goes by is one day closer to the day that the surgery will all be over!   It is hard to believe that Daphne's surgeries were over a year and a half ago.  She was very medically fragile, and had already suffered significant strokes, but she made it through and is doing so much better now.  

It seems we've done things in opposite order.  You are nervously awaiting surgery for Moyamoya, and we have just started chemotherapy (Daphne just got her second dose yesterday) for Daphne's gliomas.  I am, of course, very nervous about the treatment and what it means for Daphne.   In a way, the surgery, which was over in two weeks, seems easier to me than chemo for a whole year, or longer!  Daphne can't do radiation because of her pre-existing brain injuries.

Incidentally, Daphne also has optic chiasm gliomas, and they extend to the hypothalmus.  She had an MRI in late July which showed that in just 6 weeks they had grown a little bit.

We've also put Daphne on Ruta 6, a homeopathic medicine that has had success in treating brain tumors.  Have you heard of it?

Paige will be in my prayers.  This is a big week for you -- it WILL get better :)

Jenny

We want to thank everyone for their words of encouragement and your prayers.Finding this site has been a huge blessing for us.At first,I was terrified when I read about MM(this was a few months before Paige was diagnosed,the doctors had only mentioned MM as a possibility),but once I began reading comments from everyone,I had hope that she would be OK.I was in contact with some of you while we were trying to get Paige to Stanford and I am sorry I lost contact.I am confident that Paige will be just fine after the surgery.She is 4 years old(will be 5 in March) and it is true that kids are strong and bounce back so much better than we do as adults.She is my own little hero.
 Jenny,I want you to know that we will be thinking of little Daphne.What a fighter she is!!I definitely know how hard the chemo is.It was so hard for us to watch Paige go through her chemo.She was supposed to have it for a year but it had to be stopped after 8 weeks.That's when we sent her to St.Jude Children's Hospital for radiation.Her tumor is still there but is finally stabile and thankfully,it never affected her vision.It was a miracle because the optic glioma was the size of a large marble.Like Daphne's,Paige's glioma also grew fast.We will keep her in our thoughts and prayers as she goes through chemo and your family also.Please keep me updated on her condition.
Thank you all again so much for your thoughts and prayers.I will post an update as soon as I can after surgery.
Jennifer &family

Jennifer,

We just returned from our daughter, jennifer's, surgery Monday 8/28.  She was supposed to have two surgeries, but to our surprise, Dr. steinburg said her left side is 100% okay.  It doesn't mean it is disease free though, so he'll watch it.  I'm nervous about her 6 month check up.  I pray her left side doesn't change.
Making it through Jennifer's surgery wasn't as bad as I thought.  my husband and I decided to concentrate on the positive things that brought us to the surgery.  THe anticipation was the worst part, so I refused to let my mind make me a nervous wreck.  I kept focusing on the fact that without this surgery, she will most likely suffer a stroke!  The surgery was saving her life. This website was my saving grace too.  The support helped me so much. I printed letters from some of the replies I received and read them during the surgery. I went through so many doubts, but was always reassured.
Paige will be in my prayers and I look forward to her update.

Michelle and Jennifer (2 years old)    

Jennifer,

I know it's been a long few months leading up to this week, so I'm glad Paige's surgery date is close.  You'll definitely have your MM family with you in spirit, and many thoughts and prayers as she goes through surgery and the recovery period.  Please keep us posted as you can, o.k.?

[smiley=hug.gif], Jill    

Thank you all again so much for your support and prayers.We are leaving for Memphis tomorrow evening.Paige is to be admitted to the hospital on the 6th at 10am.So we will get into town the night before .Again,her surgery is on the 7th.So far,I am not as nervous as I thought I would be,but I have been extremely busy today trying to get everything ready.I'm sure once we get to Memphis,it will all hit me.But I have a good feeling about the surgery.Paige has alot of people praying for her.Thank you all again and I will post an update as soon as I can get to a computer.

Jennifer