Author Topic: Thoughts and Prayers Please  (Read 15391 times)

Soundy

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Thoughts and Prayers Please
« on: March 31, 2009, 08:19:51 pm »
got a call from a friend today... our PTO treasurer ...she has a 5
year old nephew who for past 6 months as been a PIA... he has
been hitting and biting ...can't do simple kindergarten work which
is mostly coloring and writing a few letters or numbers ... just
basically out of control , where before he started school he was
just a ordinary 5 year old

he has been punished at school and home and put on Ritalin by
his old doctor in Nashville in an effort to control him ...they moved
down here during Spring break ... they thought maybe he would
do better in a smaller school system...

Saturday he started screaming and saying his ears hurt ...they
went to ER and he was given drops and anti biotic pills ER doctor
said he didn't think it was an infection but allergies but gave him
the stuff in case it was an infection...

yesterday he was still screaming most of the time and they took
him to a local doctor and his pupils didn't act right so he
ordered a MRI... the boy has a golf ball sized tumor growing in
his brain ... at this point they don't know if it is cancerous or benign
or have any idea where to start ...

doctor said the area it is in was probably the reason for his changes
in personality where the Nashville doctor just stuck him on
medication and said his behavior was due to starting school
and he needed time to adjust ...

it has been bad on me dealing with Bennie ... the thought of a 5
year old going through this is unimaginable to me ... she called me
hoping I had some words of wisdom since I have been through the
whole Bennie thing

I didn't ...just pray and hope for best which at times doesn't sound
like alot when dealing with a sick child ...I feel so useless here ...I
laughed and carried on as if all was OK... he can't and his parents
are scared out of their minds and don't need what worked for me ..

he is at Vanderbilt now and  tomorrow morning they are going to
do more scans and decide whether to do a biopsy or watch it ...

Keep Gabe and his family in your thoughts
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Kaybo

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Re: Thoughts and Prayers Please
« Reply #1 on: March 31, 2009, 08:23:38 pm »
Soundy~
Thanks for sharing this with us - I will be keeping Gabe and his family in my prayers.  As I have said before, as a parent, I can't even begin to imagine what these parents go thru...

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Rich56

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Re: Thoughts and Prayers Please
« Reply #2 on: March 31, 2009, 08:36:54 pm »
Hi Soundy,

That is such horrible news.  The poor kid, I can't even imagine........

We will certainly keep Gabe, and his family in our prayers.

Rich & Scarlett
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

anissa

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Re: Thoughts and Prayers Please
« Reply #3 on: March 31, 2009, 10:21:53 pm »
:(  A parent's nightmare, to have to see your child in pain or go through something like that.  I will pray for Gabe and his family tonight. 
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

Jim Scott

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Re: Thoughts and Prayers Please
« Reply #4 on: March 31, 2009, 10:30:27 pm »
Soundy ~

Thanks for the information, as sad as it may be.  You have helped - by spreading this tragic news many people will be praying for this little boy and his distraught parents.  That is more help than anything else you might do. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Brendalu

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Re: Thoughts and Prayers Please
« Reply #5 on: April 01, 2009, 03:56:45 am »
Thoughts and many prayers coming Gabe and his familys' way.

Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

stoneaxe

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Re: Thoughts and Prayers Please
« Reply #6 on: April 01, 2009, 04:18:38 am »
Thoughts and prayers for sure. My biggest fear in life has always been something happening to my girls.
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

msmaggie

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Re: Thoughts and Prayers Please
« Reply #7 on: April 01, 2009, 05:39:04 am »
Prayers just went up for Gabe and his family and drs.  Nothing scarier than something happening to your child!

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

cindyj

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Re: Thoughts and Prayers Please
« Reply #8 on: April 01, 2009, 05:51:29 am »
I can not imagine the fear his parents must be going through - thanks for coming to us with this - please do keep us updated,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

ppearl214

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Re: Thoughts and Prayers Please
« Reply #9 on: April 01, 2009, 06:12:12 am »
Prayers and wishes for such a young soul (and his family). Please keep us updated on the situation.

Many prayers and wishes.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

EJTampa

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Re: Thoughts and Prayers Please
« Reply #10 on: April 01, 2009, 06:36:52 am »
Wow.  It just doesn't seem right that a 5 year old should have to endure this.  I will surely keep Gabe and his family in my prayers.
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

NancyMc

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Re: Thoughts and Prayers Please
« Reply #11 on: April 01, 2009, 07:51:50 am »
That breaks my heart.
I'm so glad they sought better advice.
Get the best doctors in the best facility.
Poor little guy.
Sending him my love and hugs.  I wish I could hold him and tell him it will be all right.
Please keep us posted.
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

GRACE1

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Re: Thoughts and Prayers Please
« Reply #12 on: April 01, 2009, 07:52:24 am »
Yes, Gabe will be in my prayers and thoughts.  How horrible for everyone involved.

Grace
Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

lori67

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Re: Thoughts and Prayers Please
« Reply #13 on: April 01, 2009, 09:08:21 am »
I'm so sorry to hear about little Gabe.  Kids should not have to go through things like this.  Vanderbilt Children's is an excellent hospital - where I would take my own kids if necessary, no matter what part of the country I lived in, so I know he's in good hands.

I will definitely keep Gabe and his parents in my prayers.  I can't imagine what it must be like to watch your child go through something like this and feel so helpless.

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Cheryl R

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Re: Thoughts and Prayers Please
« Reply #14 on: April 01, 2009, 10:06:59 am »
Soundy,  Very hard to hear of a child with such a health problem.       I feel for the family and also all that know him.                If only there was a way that children did not have to go thru what many do.                  I know you will let us know how it goes.                 Prayers from here do help!
                                              Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care