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PostPosted: Sun Dec 18, 2011 9:04 am 
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Joined: Sat Dec 17, 2011 1:35 pm
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Location: MI
I am 34 yr old female...I am a nurse and had headaches and was dizzy for about 1 week...being a nurse I immediately thought brain tumor (you always have everything when you are a nurse ;)) I went to the Dr. and insisted on an MRI..thank as they thought it silly to do an MRI...that was a Friday...Monday 10am I get the call...its a tumor in right frontal lobe...had surgery 11/21/11 so almost 4 weeks ago...patho came back grade 2 oligodendroglioma and I do have the 1p 19q deletion, good news or so I am told ;) they are doing the wait and see meget ththod which I am not so happy with but for now will live with....I am on Keppra (ick) never had a seizure, but for precautions am on it until my next MRI in Feb...plan to get them every 3months then move to 6mo then yearly...I have 2 small children and a husband who worry so much...I do not know what to say to the kids...My son is in therapy which has helped some...he is scared I am going to die, and I refuse to promise him a promise I cannot keep or have control over...I just tell him we hope not...so sad for Christmas he is asking Santa for me to be healthy...a 7 yr old should not have to worry about that...any suggestions for those with small kids? my 4 yr old doesnt really understand, just that I have a boo boo and they took it out...ho hum I am positive things happen for a reason and it was all so surreal how it happened. I get goosebumps sometimes....I had just taken a new job in August, that has great insurance and disability plans...it fell in my lap pretty much...then I feel weird pressure for an MRI and get a horrible diagnosis...but I do think it was a 'sign' to slow down and enjoy life and it all worked out well. I have an apt in the 2nd week of Jan to get my ok to go back to work, for now I am resting and enjoy my family...hoping I do not have to recover from surgery again in the future, but know that is probably more likely to happen then I want :( Again not in my control...I eat fairly healthy and went to the gym 5x week b4 all this happened. I cannot wait to get back there...gaining weight sitting around! anyone have ways to help little kids cope or a good website?


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PostPosted: Mon Dec 19, 2011 6:51 am 
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Joined: Mon Mar 10, 2008 4:03 pm
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Location: Australia
That's one of the hardest things we found - telling others.

Our child was not born until after my diagnosis, but more recently the subject of my dying has come up.

One option would be to seek professional advice. My opinion is it depends alot on what you believe and what kids understand.

I believe that I need to give age appropriate information and hope. Kids tend to think in black and white, while things are definitely grey today. It is reassuring, I hope, that my child believes I am going to heaven.

That is our experience, if your child is having trouble coping it may be time to seek help. A word of caution, you should be comfortable with how your child is treated. These days there is too much grey at a young age - no wonder kids feel hopeless today.

Just my opinion, but good topic to raise :).


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PostPosted: Mon Dec 19, 2011 12:02 pm 
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Joined: Sat Dec 17, 2011 1:35 pm
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Location: MI
We did seek help, it is just a slow process....ho hum...today they told me I am back to my 'old' self again and they are happy. apparently I have not been laughing or smiling as much the past few months.....wonder why?! yes I am feeling better kids, your mom is back ;)


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PostPosted: Fri Dec 30, 2011 2:28 pm 
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Location: MI
Headaches started up last 2 weeks. Had CT done, it was clear! Hooray for some good news. Next Dr. apt Jan 10th, hoping for restrictions to be lifted and back to work...reduced seizure med dosing also...seems a bit better. Still get occasional headaches but not constant, maybe it was just the meds?


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