I'm so scared. I need support. - Mothering Forums

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#1 of 76 Old 11-20-2006, 07:03 PM - Thread Starter
 
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My son was just diagnosed with a brain tumor. He started regressing in his motor skills around 19 months old and we brought him in to our pediatrician who largely blew us off at that time. He made us go see an orthopedist to see if it was a leg length discrepancy. At that orthopedist appt., obviously no leg length discrepancy was found but he was tested for muscular distrophy and friedrich's ataxia. The stupid thing is that orthopedist had a huge reaction to ds's problems unlike our ped., but told us to expect "not ever knowing what it is." He did tell us to see a neurologist, but he intimated that this was most likely genetic and fairly hopeless. I regret relying on that. I knew somewhere in me that it could be a tumor but I ignored my instinct thinking that I must be off base since no doctor was mentioning this. Instead we stupidly opted to wait another year before subjecting our son to more of, what we thought were, useless tests. God I regret that.

We finally had an MRI done on the 16th, a few days ago and they found a large cystic tumor growing on his cerebellum, hence all of his motor problems. It appears to be "benign", although the neurosurgeon told us that nothing growing in your brain is ever really benign. They think and hope that it's a juvenile pylocytic astrocytoma (the biopsy will tell them for sure). He's also suffered hydrocephaly as a result and may need a shunt or something else. The tumor is compressing his brain stem thus blocking the normal flow of CSF (cerebral spinal fluid). He's going to undergo surgery to remove the tumor sometime in early december (they haven't told us a specific date yet.)

Luckily, we have so much faith in our neurosurgical team. They seem like they'll do their very best to remove it but not harm him more in the process.

I'm so incredibly scared. I feel like this isn't really happening.

Please send positive energy and thoughts our way. Thanks!

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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#2 of 76 Old 11-20-2006, 07:06 PM
 
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#3 of 76 Old 11-20-2006, 07:07 PM
 
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I can't imagine how scared you must be. My thoughts and prayers are with you.
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#4 of 76 Old 11-20-2006, 07:09 PM
 
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Couldn't read and not post. I am sending positive energy to you and your family and especially to your son.
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#5 of 76 Old 11-20-2006, 07:10 PM
 
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Just wanted to let you know, a friend of mine had a brain tumor removed when he was a young child, and he has been perfectly fine ever since. Hope that helps comfort you.
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#6 of 76 Old 11-20-2006, 07:15 PM
 
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What a scary situation. I'm almost crying just reading. I hope everything gets taken care of and that your son grows up to be healthy and strong.

Andi

Andi, wife of Seraphim
Mom to Elijah (6/05) and Moses (6/08) and baby Joshua, UBAC February 18, 2011!

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#7 of 76 Old 11-20-2006, 07:35 PM
 
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Sending lots of prayers and good wishes your way. :

Mamma to three boys : We love :::
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#8 of 76 Old 11-20-2006, 07:39 PM
 
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I'm so sorry. Please try not to blame yourself. I and I'm sure many other mothers here have fallen into the trap of trusting doctors even when it went against our instincts. We're human and want to trust those who are supposed to be experts. I think we also often want to believe that there's nothing wrong even when we think there is. I'm glad you have a competent team of neurosurgeons. I'm sure your son is in good hands with such a caring mother. Please keep us updated on his progress. I'll be thinking of you and your son.

Crafty Mama to 5 year old DD and 1 year old DS.
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#9 of 76 Old 11-20-2006, 07:42 PM
 
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Wow, that sounds so difficult.

s
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#10 of 76 Old 11-20-2006, 07:42 PM
 
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Hugs and prayers. My DD has a large cyst in the same area as your son's tumor. It resulted in developmental delays and hydrocephalus. She has two shunts and has had multiple brain surgeries. If you need to talk, PM me anytime!!!!

Is he receiving care at a pediatric hospital?
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#11 of 76 Old 11-20-2006, 07:44 PM
 
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Oh my God. I'm so sorry, I can't imagine how you must be feeling.

If you don't mind sharing, what is your son's name so I might keep praying for him?
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#12 of 76 Old 11-20-2006, 07:49 PM
 
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hugs.

I also want you to know I have several friends who have had tumors removed from their brains and have gone on to have perfectly fine lives.

just to let you know.

hang in there, mommy.

it sounds like your son is in great hands.

Check out New Moon on my Astrology Site

http://tracyastrosalon.blogspot.com/

 

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#13 of 76 Old 11-20-2006, 08:34 PM
 
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(((HUGS)))

I am keeping you, your son and your family in my thoughts.
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#14 of 76 Old 11-20-2006, 08:37 PM
 
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I am sorry your son has a brain tumor. I can't imagine how you are feeling. I am praying for your family.
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#15 of 76 Old 11-20-2006, 08:42 PM
 
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You and your little one are in my thoughts and prayers.
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#16 of 76 Old 11-20-2006, 08:45 PM
 
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Oh Mama, I am so sorry. I would be terrified as well. Please come and post as much as you need. We'll get you through this
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#17 of 76 Old 11-20-2006, 08:47 PM
 
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I will pray for you tonight

Amy, mommy to Ava, 6, Gavin, 4, Lila, 2, and Baby #4 due in early November! joy.gif
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#18 of 76 Old 11-20-2006, 08:50 PM
 
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Hey mama ( Hi from our due date club wow what a difficult thing to be going through.My daughter is 9 and has cerebral palsy and is having surgery on Dec 4th.It is scary and overwhelming,i know.My 'special child' has taught me so much and is the most amazing gift in my life.I know you feel the same way about your child and as difficult as it is having a differently abled child can be it, is also the most amazing.I send light and love your way~
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#19 of 76 Old 11-20-2006, 08:59 PM
 
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I am so sorry. My thoughts and prayers are with you and your little one.
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#20 of 76 Old 11-20-2006, 09:19 PM
 
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Mama of three.
 
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#21 of 76 Old 11-20-2006, 09:49 PM
 
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I just wanted to let you know I'm thinking of you.

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#22 of 76 Old 11-20-2006, 09:53 PM
 
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I'll be thinking of you and your little boy. I'm so sorry you are going through this.
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#23 of 76 Old 11-20-2006, 09:54 PM
 
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Sending good thoughts and prayers your way too mama.
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#24 of 76 Old 11-20-2006, 09:58 PM
 
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I'm so sorry! I hope everything turns out okay.
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#25 of 76 Old 11-20-2006, 10:01 PM
 
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sending positive thoughts and vibes *hugs* to you and your family


one love

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#26 of 76 Old 11-20-2006, 10:02 PM
 
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More good thoughts and hopes coming your way.
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#27 of 76 Old 11-20-2006, 10:02 PM
 
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do not blame yourself!! this is a one in a million thing and you did the best you could with the info you had at the time, I mean who wants to put a child under sedation for an MRI when all the doctors tell them not to bother?

my dd has been in surgery twice for something much, much more minor but I hope that what happened with me also happens with you- I get ultra stressed in the months/weeks/days leading up to the surgery and then once she is in there, it's like the weight is lifted a little and you just get recharged with energy to deal with the recovery process etc. I hope what you are feeling right now is the worst of it and that everything goes smoothly from here on in.

DD1 7/13/05 DD2 9/20/10
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#28 of 76 Old 11-20-2006, 10:06 PM
 
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I am so sorry that you are dealing with this. How terribly scary.

I can tell you that my cousin had a benign brain tumor removed as a boy, and a shunt placed. I think he was 8 or so. He did just fine after the surgery. It was very scary for the whole family.

I will keep your family in my thoughts.
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#29 of 76 Old 11-20-2006, 10:37 PM
 
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#30 of 76 Old 11-20-2006, 10:40 PM
 
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I actually know 2 adults that survived brain tumors with no significant lasting problems. I'll be checking in for updates.
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