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A question for the people who don't remember...

thenamescorinne
Posts: 2
Joined: Mar 2010

I was diagnosed with neuroblastoma at about 9 months and went into remission about two years later. I don't remember anything from my stay in the hospital. I don't remember anything at all because i was so young.
When people first see my scars (one of which closely resembles a c-section scar and since this whole "16 & pregnant" phenomenom well yeah you can guess) they always ask wht its from.

When i tell them there is always an "awwww" and then a "but you don't have it now do you?"
I usually laugh and say "no" because that is the funniest question ever

But then the annoying questions come in.
"What was it like?"
"Did it hurt?"
"Where was it?"
"What happened to you?"
"What's this scar from...and that one...and that one...etc?"

The truth is. I have no clue!
I don't remember!
My parents don't like to talk about it because it was a difficult time and I wouldn't want to bring it up now because they almost recently relived this situation with my older sister. (it was lupus. and this is the only situation in which i would say THANK GOD FOR THAT)

So finally my question is:
Does anyone of you ever feel like you're not a cancer survivor?
I know that sounds weird but adults are always saying "oh you must have been so strong" and "so brave". Well, I didn't do anything! I don't remember it and when people say they "fought cancer" I just feel like my family did, not me.
I don't know i always feel so weird saying i'm a cancer survivor when I think of that term as such an honor to be called. I didn't do anything to call myself a survivor. I sat there and cried. And did what the doctors and nurses and parents made me do.
They should have all the recognition, not me.
Anyone else ever felt like that?
Just wonderin...
xoxoCorinne

Mel Mikulak
Posts: 7
Joined: May 2010

Corrinne,

#1 - post this story to acor.org on the N-blast list. You'll find 100s of parents and warriors and survivors who would be happy to give you their input - as well as hear your side of the story as a teen, particularly those with very young children.

#2 - coming from a mom who spent four years in and out of the hospital with my child (who was old enough to know what was going on; 3-7yrs old) - you endured more than your fair share as a baby. You may be blessed not to have to remember it. But you were brave then. You held your mom and dad's hands when the nurse had to poke you. You didn't cry every time you threw up because you got used to it. You went to the hospital gladly (somehow) to get your bag of medicine every month because some nurse there had a toy for you and a smile.

There is strength within you that you may not be aware of that stems from your time battling cancer. There is also a strength that your parents never had before they had to endure the torture that their baby went through. (One day when you have your own children you will understand their love for you - but you simply can't fathom a parents love until you have your own!)

You are incredible and a survivor of a pediatric cancer that most children do not survive. Really. Neuroblastoma is terrible. Do you know that your little baby-body took in 100X the amount of toxic chemo of Lance Armstrong? 100X.

You are a gift to those of us who have lost our children to NB. Because through you we know there is hope out there. And through you, we continue our battle to bring awareness and funding to an overlooked, orphan disease: kids cancer.

Melissa Mikulak
Mom to Max, forever 7
cureNB@gmail.com
www.mikulak.com
www.MaxsRingOfFire.org

xoxo

jillebob
Posts: 12
Joined: Aug 2009

I too am a survivor of this terrible disease. I was about 6 months when diagnosed with neuroblastoma. I also don't remember really anything. I remember them opening the plates when I was in the hospital later on because of the hole in the top of the covers of the plates. I remember an oxygen tent. Other than that nothing. I also have had comments on my scars. I have a scar from the top of my shoulder blade and follows the shoulder blade to under my breast. I forget about them. I was a very skinny child. I was about 18 until I realized I had another scar on my back from what I believe to be drainage tubing. My parents never talked about it either. I just remember going back every year for tests at the U of MN. To my response "WHY"...

moonkai
Posts: 4
Joined: Nov 2010

To answer your question simply......Yes I have felt like that. I was 6 weeks old when i was diagnosed with neuroblastoma. I cannot remember a thing till I was about 4/5. Mum and Dad dont really like talking about it. It has been a bit of a jigsaw puzzle for me. I would love to know what I went through in detail, but in saying that I know that it is very hard for my parents to talk about. Im 29, and only 2 years ago I found out that I had tumours behinds my eyes when i was little.....and I only found this out through a conversation i had overheard.
Not many people know that i am a survivor, well not until they see my scars. Thats when the questions start, and I really wish I could answer them. From the age of 5 i have memories, some I have chosen to sweep under the carpet and some I have chosen to share.

dubc
Posts: 8
Joined: Apr 2008

I am a Medulloblastoma (brain tumor) cancer survivor of 38 years. I was a baby of two and a half at the time. Like you, I have no memory of it. My parents will give me some answers but never in much detail. I would like to remember some of it just to draw strength for the challenges I fact today.

You are right, our parents went through much more then we did at the time. You have to give yourself credit though you are stiil here and you ARE a Cancer Survivor.

I only recently accepted it myself. I originally felt I didn't want pity. I went to the Cancer survivor walks and all that.

You can Give hope to Parents of children going through the same thing now. You can show them there is reason to hope, and reason for you to draw strength from it.

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