ANA Discussion Forum
AN Community => AN Community => Topic started by: Soundy on March 31, 2009, 08:19:51 pm
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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
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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
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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
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:( 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.
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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
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Thoughts and many prayers coming Gabe and his familys' way.
Brenda
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Thoughts and prayers for sure. My biggest fear in life has always been something happening to my girls.
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Prayers just went up for Gabe and his family and drs. Nothing scarier than something happening to your child!
Priscilla
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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
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Prayers and wishes for such a young soul (and his family). Please keep us updated on the situation.
Many prayers and wishes.
Phyl
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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
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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
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Yes, Gabe will be in my prayers and thoughts. How horrible for everyone involved.
Grace
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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
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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
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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
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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
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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
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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
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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...
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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
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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
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The worst possible news a parent can ever receive. :(
I will keep the family in my prayers.
Ernie
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So sad. I'm sorry.
Nancy
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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
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I'm so sorry to hear the news. I will keep the family in my prayers.
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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 (http://www.childhoodbraintumor.org/index.php/brain-tumor-types-and-imaging/34-brain-tumor-types-and-imaging/97-medulloblastoma.html)
Ernie
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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
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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
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So incredibly sad, Soundy, and so sorry to hear it, but thank you for updating us...
Cindy
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Oh my God Soundy.......a parents worst nightmare. Be assured prayers have been sent up for this family. This is sooooo sad.....children are my passion and this is truly heartbreaking news. I can't even fathom the devastation they must be going through. Keep your AN family informed and I will continue to pray .
Judy
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Soundy -
I was thinking of Gabe yesterday.
Any news?
Jan
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Just wanted to add my conern here as well. I'd like to hear if there has been more news??
Ernie
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Just read the sad news :(I can't imagine what the family is going through.
My prayers are with all of them. Let's pray for a miracle...
Maureen
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wow. My problems seem so small now. This really makes me sick to my stomach thinking about a little boy going through this and the poor family. My heart aches for them.
Angie
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thoughts, prayers and wishes continue......
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So hard to hear the latest news. My heart goes out to the family and prayers go up for strength and peace in the coming days.
Priscilla
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More prayers for Gabe and his family.
Please send update when you can.
Sue
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Soundy -
it's been a while. Any more news on Gabe? I think of him and his family a lot.
Jan
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Gabe at last report was holding his own ... he is at St Jude's ...they have him on several
treatments ...some tried some more experimental ... as his aunt told me they are hitting him from
all sides and hoping the combination they are using is the right one
his parents have relocated to Memphis and as soon as school is out the other kids who are with the aunt
will move to Memphis so the family is all together...
From what the aunt said the cancer had gotten into his nervous system and the doctors are fighting an
uphill battle ... I still have a hard time thinking of him being treated as a bad child and not really listened to ...
to have such a horrible thing going on in his little body and no one taking him seriously
keep him in your prayers still ...
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Thanks, Soundy. Praying for a miracle for Gabe. I'm sure his parents are devastated about so many things, so keeping them in prayer as well. Please keep us updated.
Sara
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Thanks for the update, Soundy.
I wish the news were better, but I'm glad to hear that Gabe is holding his own.
St Jude's is one of the best places for treatment, so if anyone can pull him through, they can.
I can't even imagine the toll his condition is taking on his family, and I will definitely keep them, as well as Gabe in my prayers.
Jan
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Thanks, Soundy for the update...prayers still going up!
K
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Soundy ~
Thanks for the update. You've done one of the best things you could do in this situation. Gabe and his parents are in the prayers of many - including mine - thanks to you.
Jim
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Soundy,
I'm so terribly sorry to hear about what is going on with Gabe and his parents. I really wish for a miracle! If anyone can, God can. Such terrible things shouldn't be allowed to happen to children! As a parent you are always afraid of what could happen to your children. I can't think about what I would have done if it was my child.
I'm sending prayers to Gabe and his family from Sweden
Helene
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Gabe is still fighting but no longer able to walk ...bits of cancer popping up in his spinal canal is messing
with nerve impulses and I was told he shakes like he has Parkinson's Disease ...he is getting good pain
control and isn't sitting around hurting all the time so that is a blessing ... the aunt has moved
to Sumner County because her husband found work there so don't hear alot ... please just keep praying
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God bless Gabe.
And his family.
And his good friends, like Soundy.
I was just wondering about Gabe the other day when I was reading some Caring Bridge sites about other kids I know. Thank you for keeping us informed. I will keep praying.
Sara
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Soundy
I don't know how I missed this thread until now. How truly terrible for a five year old to be going through this. He and his family are in my prayers. What a shame he had to go through as much as he did before getting an accurate diagnosis. I will pray for a miracle for him and his family. As we all know by now, the power of prayer can be a very powerful thing indeed. Please keep u s posted.
Sending prayers and hugs to Gabe and his family and you too,,
Wendy
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Soundy, has there been any news recently about Gabe? I check on several children every day on Caring Bridge and wondered how he is doing.
Sara
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Praying here.
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More prayers on the way for Gabe and his family.
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Nothing new... school starts tomorrow ... there are some other cousins that go to same school so
may learn something from them...hope he is doing OK and at least pain free... having watched
more than one adult die in pain from cancer makes me sick thinking about this little boy , any child or
person really , going through all he has ...
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Talked to Gabe's 7th grade cousin ...she said he is about the same but at home now ... he took some
chemo and is on a break and will have to go in for more ... right now he seems a bit better ... she said she
didn't think he was better but just hadn't gotten any worse ... in this case not any worse is good
thoughts and prayers
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Gabe continues to be in thoughts and prayers!!!!!!! Hang in there Gabe! And thanks Soundy for the update...
Phyl
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I'll keep hoping for the best.
Syl
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When I read of Wylie it brought Gabe to mind ...haven't updated him in a long time ...
Gabe is still with us ... he can't walk and has speech problems but is learning his letters and numbers and colors pages and pages of coloring books ... he is being home school due to treatments leaving immune system all but gone ... as of last month when I saw his aunt he was in remission ...family moved over border into Mississippi for a job ... they wanted to move back to this area but decided to stay closer to St Jude's ...
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Thank you, Soundy. I was thinking of Gabe as well and am happy to hear he is in remission. He and his family have been and remain in my prayers.
Sara
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Wow what an amazing story! Happy to hear Gabe is healthy again.
Liz
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Thanks Soundy for the nice update.
Gabe is still with us and learning, so his brain is still working!
Will he be able to walk again, or is this permanent from everything?
Praying for a couple of years of life worth living for this young guy and his family. (Maybe even more-miracles DO happen :))
Maureen
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Not sure if he will ever walk again and he is learneing delayed ... time will tell
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Soundy ~
Let me add my appreciation for your update on Gabe. Once again, prayers were answered. While Gabe may be developmentally behind due to his illness, I'm sure his parents are thrilled and delighted to have him with them and will do whatever is necessary to bring their boy 's education up to his age level. Gabe's survival is a miracle and I'm just thankful for that.
Jim
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Soundy -
thanks for the update on Gabe.
Prayers continuing,
Jan
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I saw Gabe's aunt today ...
he is in a wheel chair but otherwise doing well ... he went back to school in January and she said other kids around him was great medicine ... she said there is damage from cancer that was in his spinal column that may be permanent and he may never walk again ... but he is almost caught up academically ... she says he is a silly little boy that loves playing pranks ... we got teary in Walmart and got funny looks from passers by ... it was so good to hear he is doing so well ... doctors won't call him cured until he is 5 years out and that count started in December ... but to have a happy silly little boy on their hands is such a blessing after the grim prognosis ... if he was still in this area I would encourage his mischievousness
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Thanks, Soundy, I have wondered about Gabe. I am glad to hear he is doing as well as he is, and will continue to keep him in my prayers.