Author Topic: Thoughts and Prayers Please  (Read 15305 times)

Syl

  • Hero Member
  • *****
  • Posts: 765
  • Forgive me. I'm having an AN moment.
Re: Thoughts and Prayers Please
« Reply #15 on: April 01, 2009, 11:10:49 am »
Soundy:

My heart breaks when I think that this little boy was punished for his behavior. Gabe and his family are in my prayers.
Please keep us posted.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

yardtick

  • Hero Member
  • *****
  • Posts: 1321
  • I have to keep smiling, or else I WILL cry.
Re: Thoughts and Prayers Please
« Reply #16 on: April 01, 2009, 06:25:05 pm »
My youngest son's name is Gabriel........of course I will pray for Gabe.  I'm sure he's a cutie just like my son was when he was young (still is a cutie at 18).


Many thoughts and prays,
Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

saralynn143

  • Hero Member
  • *****
  • Posts: 1822
  • Sarey Sarey Quite Contrary
    • MVD diary
Re: Thoughts and Prayers Please
« Reply #17 on: April 01, 2009, 08:50:33 pm »
Soundy, once Gabe's parents have a handle on what is happening, they might wish to set up a site at www.caringbridge.org as a way to keep friends and family up-to-date. It's a great site where caretakers can post journal entries and visitors can leave messages of encouragement in a guest book.

I follow a couple of sites there, including a five-year-old girl from Jefferson City who was involved in a car accident right after the first of the year and is now a quadriplegic. She is about to be transfered to a spinal injury rehab facility in Maryland. Her site is http://www.caringbridge.org/visit/margaretromph if you would like to see an example of how Caring Bridge works.

All my best to Gabe and his family.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Thoughts and Prayers Please
« Reply #18 on: April 01, 2009, 10:14:14 pm »
Soundy -

this is just so sad  :'( 

And it brings back memories of my daughter's friend Kelly who passed away in October from a brain tumor (one week before her 13th birthday).

Gabe and his family are in my prayers.

Please let us know how things turn out.

Hoping for the best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Soundy

  • Hero Member
  • *****
  • Posts: 1329
  • prophetic picture done by my 5 year old, June'04
Re: Thoughts and Prayers Please
« Reply #19 on: April 02, 2009, 11:12:24 am »
preliminary results indicate malignancy ...


I credit Vanderbilt for my twins being here now and almost 29 ... and that is where my
9 year old goes for the surgery periodically on her mouth and lip to keep lymphatic malformation
under control and from distorting her mouth and face ... I know he is in good hands ... I will pass
www.caringbridge.org on to the parents when I think time is right ...or give it to the aunt and she can...

3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

saralynn143

  • Hero Member
  • *****
  • Posts: 1822
  • Sarey Sarey Quite Contrary
    • MVD diary
Re: Thoughts and Prayers Please
« Reply #20 on: April 02, 2009, 11:44:15 am »
I'm so sorry to hear that things are not looking good. If your friends do decide to construct a Caring Bridge site, be sure to let us know so that we can let them know they are in our thoughts and prayers.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Soundy

  • Hero Member
  • *****
  • Posts: 1329
  • prophetic picture done by my 5 year old, June'04
Re: Thoughts and Prayers Please
« Reply #21 on: April 05, 2009, 08:54:34 am »
Medulloblastoma or Medullablastoma ... haven't look it up to
see just what all it involves ...and not sure how she pronounced it

talked to aunt last night

On the 3rd a doctor from St Jude flew in and removed it or
what he could ...it is an aggressive cancer and they fear that
by the size that it has probably spread to his nervous system
via CF ... they are going to transfer him to St Judes... may
have already

they told parents that 6 months to a  year would be a maybe ...a
miracle might give him 3 years ... and told them that after further
studies of spine and nervous system  they may discuss just keeping
him comfortable as long as they can and skip chemo and radiation...
if they treat the doctor say he will be sick and weaker and unable to
really function...

I am so unbelievably sad for him and his family ...

have a friend who was on lyrica that had to quit taking it ... she had ordered
90 day supply by mail that got there after her doctor took her off... she was on
double the dose I am taking ...so for me it is a 180 day supply ...she has great
insurance that paid all but $60 but she won't even take that from me ... She saved me
almost $800 by giving it to me ... (and yes we did it by way of my doctor receiving
it and handing it to me ) ... I can't give the family that much but am going to give
them what I can to go for gas and other expenses they are going to run into going
back and forth from here to Memphis... not much but what I can do for them
right now

continue to keep them in your thoughts
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

EJTampa

  • Hero Member
  • *****
  • Posts: 604
  • Rays Vs Red Sox Game 2 ALCS (Isabel and Ernie)
Re: Thoughts and Prayers Please
« Reply #22 on: April 05, 2009, 09:20:47 am »
The worst possible news a parent can ever receive.   :(
 
I will keep the 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

  • Hero Member
  • *****
  • Posts: 857
  • One year and all is well, almost.
Re: Thoughts and Prayers Please
« Reply #23 on: April 05, 2009, 09:46:59 am »
So sad.  I'm sorry.
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

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Thoughts and Prayers Please
« Reply #24 on: April 05, 2009, 10:46:56 am »

I am so unbelievably sad for him and his family ...


I'm right there with you on that one, Soundy  :'(

Please let the family know that we are all thinking of - and praying for - them and Gabe.

I wish there were more we could all do.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Ellenmn

  • Full Member
  • ***
  • Posts: 132
Re: Thoughts and Prayers Please
« Reply #25 on: April 05, 2009, 11:31:50 am »
I'm so sorry to hear the news. I will keep the family in my prayers.

EJTampa

  • Hero Member
  • *****
  • Posts: 604
  • Rays Vs Red Sox Game 2 ALCS (Isabel and Ernie)
Re: Thoughts and Prayers Please
« Reply #26 on: April 05, 2009, 12:10:32 pm »
Here's a link with some very interesting information.  Seems they've come a long way with this in the last few years, going from a survival rate of 2 out of 10 to 8 out of 10.  I'm going to pray hard that they are able to treat and cure him.
 
http://www.childhoodbraintumor.org/index.php/brain-tumor-types-and-imaging/34-brain-tumor-types-and-imaging/97-medulloblastoma.html
 
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.

CHD63

  • Hero Member
  • *****
  • Posts: 3235
  • Life is good again!!
Re: Thoughts and Prayers Please
« Reply #27 on: April 05, 2009, 02:21:35 pm »
This is one of those situations in which we have many questions and not many good answers.  As a mother of 3 and a grandmother of 3, my heart aches for the angst of his parents.  I will certainly pray for answers for them and comfort for Gabe and his extended family ..... these things affect a very large group of concerned people.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

lori67

  • Hero Member
  • *****
  • Posts: 3113
Re: Thoughts and Prayers Please
« Reply #28 on: April 05, 2009, 02:33:53 pm »
Soundy,

That is not what I was hoping to hear.   :'(

They work miracles at St. Jude every day, and I know we're all praying that one will happen for Gabe and his family.

I don't know where they actually live, but if they're in the Nashville area, please let them know I will help them out any way I can.

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.

cindyj

  • Hero Member
  • *****
  • Posts: 1434
Re: Thoughts and Prayers Please
« Reply #29 on: April 05, 2009, 05:08:25 pm »
So incredibly sad, Soundy, and so sorry to hear it, but thank you for updating us...

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