neurofibromatosis cafe

A place to talk about NF, have fun and share.

wee lou makes the decision of her life

Wee Lou “Louise’ Cunningham

On Jul 24, 2008, at 8:39 AM, wee_lou_c wrote:

No unfortunately i had the scan yday and it said the tumor has
grown very large now because of this i would be cut off from the
things i call life also there wud have been a much heavier risk of
me dying straight away today. So i have chosen not to have this but
live slightly longer 2 years at the most and enjoy my family
friends and things i enjoy doing.   I thot my outcome would be so
much brighter but yet again i have to keep fighting to enjoy wat i
have left. Dont be sad.


Wee, am sad but in a way happy that at least the next two years will
have a quality of life that is better than if  you had the
operation. I wish I was as brave as you, Louise, to calmly say I have
two years left at the most. I wonder if there is a way to get your
records shipped to M.D. Andersen Cancer Center so our NF doctors here
could take a look at them. Are you flying back now or driving?



July 28, 2008 - Posted by | Friends, neurofibromatosis, nf | , , , ,


  1. well just know wee lou we support you 110% all the way and we really enjoy you being here and having you a part of the chat and a part of our lives we are here for you just be strong

    your friend always Brian

    Comment by Brian | July 28, 2008 | Reply

  2. I send me best thoughts to you Louise. You will always have my support as well as your other friends here. Your friend Reggie

    Comment by Reggie Bibbs | July 29, 2008 | Reply

  3. Amen Everybody

    Comment by Shelley | July 29, 2008 | Reply

  4. HI Everybody

    Comment by Shelley | July 29, 2008 | Reply

  5. hey Shelley whats up

    Comment by Brian | July 30, 2008 | Reply

  6. hey thanx guys i didnt actually know there was a blog but i appreciate all your support thanx your friend always wee lou

    Comment by Louise aka wee_lou_c | July 30, 2008 | Reply

  7. anytime we are here for you wee lou

    Comment by Brian | July 30, 2008 | Reply

  8. wee_lou

    missed you in chat. I hope all is well and you will email later. It’s 3:00am and I already know I’m crazy. I will check back after afew hours of sleep. All my best to you.

    Comment by Reggie Bibbs | July 31, 2008 | Reply

  9. Anyone blogging today?

    Comment by Reggie Bibbs | July 31, 2008 | Reply

  10. YO Brian not too much here

    Comment by Shelley | August 2, 2008 | Reply

  11. Saturday – had a round of lay-offs. My partner who serve my primary back up got laid off. I was sad about it. They tend to let the good people go, but the one who are so-so, they stay.

    Comment by John P | August 3, 2008 | Reply

  12. Sending You My Best Thoughts and Vibes.

    Comment by Jerry "KNOTTY" Willman | August 17, 2008 | Reply

  13. Sadly for your friend brain tumors are one of the highest morbidity for cancers but not even half the amount of money dedicated to research such as more well known cancers.

    My 10 year old with nf1 died earlier this year from a high grade astrocytoma (brain tumor) of her thalamus. I asked her doctor did her nf lead to this since I knew of two other kids she went to nf camp with in MD who had been diagnosee with cancer. She said the incidence is slighlty higher like 2-3% yet it seems I am constantly meeting or hearing of those with nf1 who are diagnosed with cancer.

    She had never had problems with her nf1 before except for some learning problms that were not diagnoseed. She was evalutated by a neuro-psychologist just before starting radiation and they found all the problems I had been descrbing for years.

    Comment by Ne-Ne's Mom | October 26, 2008 | Reply

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