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Epilepsy Foundation eCommunities Forums - Avery and Saint Jude
After agonizing weeks of waiting, I finally got word this afternoon that Avery is in at Saint Jude!
I am beside myself with joy, but still trying to be realistic.
This doesn't mean that her tumor is resectable, but I think it means that there is a good chance it is.
I don't think they would accept her case unless they thought they could help her.
Someone from Saint Jude is supposed to call me tomorrow with dates and logistics, and all around more information.
The nurse at WFMU I spoke with today really couldn't answer a lot of my questions.
She did say that the doctors at St.
Jude are in consensus that this is in fact a benign tumor, so that is good to hear.
She also said that she knows that they are going to want to repeat tests (VEEG, SPECT, MRI) but that is ok.
She thinks this will involve multiple visits, but that is OK too.
This is a major triumph in the right direction think.
(I have worked so hard to get here and I wont even go into that right now) Finally, we are moving forward again.
Wish us luck, and I will update tomorrow.
I am so overwhelmed right now, I can't even think of what to ask tomorrow....I need to sort this out!!
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That is excellent news Laura!
I am so happy that St.
Jude will take her -- I hope they can help!
Pls keep us posted on how things go as you move forward.
Rose - Mom to precious Lauren, 6, and my big man, Adam, 9.
Lauren-Dx Jan '05 with Temporal lobe E (complex partials) due to cortical dysplasia.
Underwent brain surgery (left anterior temporal lobectomy) on August 30/07 - still having seizures;
Undergoing further testing.
Tegretol CR, Lamictal.
Also tried, clobazam, Keppra, Gabapentin.
Also has mild pulmonary stenosis.
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Avery & Laura
I have waiting to see this post for weeks
YIP
I know this is the outcome you have been hoping for.
If nothing else it is a step in the right direction.
best of luck tomorrow when you talk to St Judes.
You guys are in my thoughts and prayers
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Goodluck with your appt!!!
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: )))
I am so happy to read this news.
Definitely fantastic news on the benign tumor consensus.
Thoughts and prayers for you and Avery.
I can't even imagine the stress you must be under.
hang in there *heart*
Janette
Mom to 19 yr old dd dx 4-'00 at age 11: CPs, TLE?Trileptal 1800.
2nd epi, NEW dx 7/05 = IGE, JME??
Trileptal GONE, Lamictal 600, Topamax 125.
NLD 3rd epi, dx=rt hemisphere focus?
Keppra + Topamax;
NOW VEEG 6-'08=Final dx of right posterior temporal lobe E, Keppra GONE, now starting Topamax monotherapy....been full circle in 8yrs.
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This is wonderful news!
I'm so happy to hear this.
Praying that you have a great discussion tomorrow and that they can help.
Please let us know how it is going.
Hugs, Jen
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This is wonderful news!!!!
I am so happy for you and Avery.
Good luck.
Prayers and hugs,
Angela
Angela mom to Elizabeth-5 year old who thinks she rules the universe.
Dx with E on 11-07 Absence, atonic, and febrile seizures.
Failed Topamax, Klonipin, Zarontin, and Keppra.
Currently on Zonegran and weaning Lamictal.
VNS inplant on 7-7-08.
Tristan-8 year old Soccer star who loves to pick on his sister.
Johnathan-10 year old who thinks is is 20.
Future Golf Pro. ADHD
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I'm so happy to hear that she is accepted!
I've been watching your posts and am so glad for your good news.
Susan - mom to our sweet eight year old son, who was diagnosed with epilepsy in 4/06, our wonderful seven year old son, and our lovely five year old girly-girl and wife to my sweetheart of twelve years :)
Currently taking Zonegran 100 AM & 200 PM, Tranxene, Tenex faied Tegretol, Depakote, Keppra, Trileptal, Lamictal, and Topamax
Isaiah 41:13 "I am the Lord your God who takes hold of your right hand and says, 'Do not fear.
I will help you."
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I am SOOOO thrilled that she was accepted.
Please wish her my best and I hope that they can do something for the tumor.
Karen
VERY proud mother to:
JACOB (academically gifted, who watches out for his brother and helps with Bo's E in any way he can)
BO (CP sz w/ GTC, SID, ADHD, DD, speech delayed, currently taking Methylin, Keppra, Lamitcal, Topomax failed.
VNS implant 7-9-08, turned on 7-17-08.
Modified Keppra wean on 7-28-08.
MAKENNA (Princess of everything, who har
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Avery & Mom
Laura, this is such great news!!!!
:)
Please keep us posted on the dates and such!
Hugs,
Donna
*heart/rose*
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Yea!!! I am so glad to see this.
Please keep us informed.
I hope for complete resection and complete elimination of the seizures.
Lisa
Mom to 7yo Daniel, 5yo "superman" Sidney, dx 2/14/05 on Lamictal, Keppra, klonopin and LGIT- Trileptal, Zonegran, Topamax failed- dx brain tumor 3/8/05 - benign 2/27/06 craniotomy(failed) and 1yo Samuel - "Sam I am" to his brothers
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YAY! Praying they will know exactly how to help her at St.
Jude!
Rayna
"But now, this is what the LORD says..."Fear not, for I have redeemed you;
I have summoned you by name;
You are mine." Isaiah 43:1
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Im s very happy for you ,
we can do this....
Mom to tommy21, Trevor 12( has E,but it don't have us!!!) tanner 8.
Failed lamital rash taken off depokte sp , flunked out on triliptal now off zonegran, topamax stoped working , zorotin didnt help made him sick , back on zartion250mg off the keppra on dilantin 2xs aday
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How wonderful!! I think you will find it a fabulous place!!
mom to 18y daughter-TLE partial seizures since '98.
Keppra, folic acid, elavil.
Off to college!!
God....
The one who so wonderfully comforts and strengthens us in our hardships and trials.
And why does he do this?
So that when others are troubled, needing our sympathy and encouragement, we can p
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How wonderful!! you will find it a fabulous place!
mom to 18y daughter-TLE partial seizures since '98.
Keppra, folic acid, elavil.
Off to college!!
God....
The one who so wonderfully comforts and strengthens us in our hardships and trials.
And why does he do this?
So that when others are troubled, needing our sympathy and encouragement, we can p
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Fantastic! I love St.
Jude!
Michelle Mom to Lauren (11) Emily (10) and Jackson (4).
Waiting for August 11 to see if Emily is a surgery candidate.
Only Emily and Jackson have seizures in some form or another.
Lamictal (300mg), Keppra (1500mg), B6 and Melatonin (1mg) for Emily.
Emily's big trigger is sleep.
After an fMRI we've discovered she has Dylsexia.
Jack's big trigger is sickness or injury.
Jackson is on Lamictal (150mg).
We homeschool.
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So, now we have a definite plan.
Avery is actually going to Le Bonheur Children's Hospital in Memphis.
They work in conjunction with Saint Jude, and all brain surgery is performed at Le Bonheur's.
If she ends up needing chemo, Saint Jude will take over.
Avery and I fly out August 24th (the day after we get back from our beach vacation).
She will be admitted August 25th for an MRI, VEEG, and MEG.
If all goes well, she may be able to have the surgery while we are there, but there are a multitude of possibilities.
The woman I spoke with from Le Bonheur today was so helpful and informative.
She spent 45 min on the phone with me answering questions and giving me information.
I have already emailed her with more questions, which she answered very quickly.
I have spent the afternoon shaking and on the verge of tears!
The neurosurgeon there looks phenomenal.
I am going to book our flight this evening.
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So great to hear there is finally a plan.
Have fun on vacation.
mom to 7 year old ds with history of febrile & myoclonics currently absence.
Current meds zarontin...
& a almost 2 year old dd so far with no issues other than a brother whom she likes to call "nasty buzzard" which he thinks is funny
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I am so happy to here you have a definte plan.
It seems that things are moving quickly.
IMO that is the best thing for the nerves as you don't have as much time to sit and worry.
I am so glad the person you talked to was so helpful and informative.
I am sure that makes everything so much easier.
It is ok to be on the verge of tears.
You guys have been through so much.
I will keep you guys in my thoughts and prayers.
have fun on vacation!!!!
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WOW! Things are going to move quickly for Avery.
I am SOOO thrilled for her.
If you get a chance (yeah, cause you don't have 3 million other things on your mind LOL) give the school a call to let them know what is going on.
Good Luck!!!
Karen
VERY proud mother to:
JACOB (academically gifted, who watches out for his brother and helps with Bo's E in any way he can)
BO (CP sz w/ GTC, SID, ADHD, DD, speech delayed, currently taking Methylin, Keppra, Lamitcal, Topomax failed.
VNS implant 7-9-08, turned on 7-17-08.
Modified Keppra wean on 7-28-08.
MAKENNA (Princess of everything, who har
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