Brain Stem Glioma

pjthurman59
pjthurman59 Member Posts: 2
edited March 2014 in Brain Cancer #1
my grandaughter was diagnoised whith brain stem glioma non operateable i would like to here of surivors of this type of cancer please she is only 5

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  • JC2010
    JC2010 Member Posts: 4
    #2
    Hi. I just found this site today. I entered the brain cancer section and was surprised when I read the title to your message. I had the same inoperable brain cancer when I was 3 back in 1991. I have not met or heard of anyone else who has had this. How many doctor's has your grandaughter seen so far? What have they suggested?
  • pjthurman59
    pjthurman59 Member Posts: 2
    #3
    JC2010 said:

    Hi. I just found this site today. I entered the brain cancer section and was surprised when I read the title to your message. I had the same inoperable brain cancer when I was 3 back in 1991. I have not met or heard of anyone else who has had this. How many doctor's has your grandaughter seen so far? What have they suggested?

    sorry i havent been here for awhile but the news is a little better she went for her treatment yesterday tay told my kids that she has gone from a 14% chance to a 70% chance of survival i am glad you answered me it does give us some hope oh she has been to several drs they are treating her at medical city in dallas
  • JC2010
    JC2010 Member Posts: 4
    #4
    pjthurman59 said:

    sorry i havent been here for awhile but the news is a little better she went for her treatment yesterday tay told my kids that she has gone from a 14% chance to a 70% chance of survival i am glad you answered me it does give us some hope oh she has been to several drs they are treating her at medical city in dallas

    I'm so glad to hear that! Back when I was sick I was given very little chance of survival, maybe 3 months or so. I was treated in Gainsville, FL. My treatment was experimental, and no one knew what the outcomes would be or if it would really work. Now that it's the 21st century and 1991 was like 17 years ago, I'm sure now doctors know what to do better and probably have better treatments than b4. I don't know much about mine because I was so little, but I know I had a bonemarrow transplant, hight doses of radiation, and chemo. What kinds of treatments has your grandaughter been given so far?

    I will keep your grandaughter and family in my prayers.
  • jfrankenberg
    jfrankenberg Member Posts: 2
    #5
    My prayers are with you, your family, and your granddaughter. Brain stem gliomas do not typically have good prognoses, but my son is a survivor. Diagnosed at 5 weeks, we were told he would die, but now he is 3 1/2 and going strong. No treatments, just a miracle. I pray your granddaughter experiences a miracle too!
  • 4lukesteam
    4lukesteam Member Posts: 1
    #6
    JC2010 said:

    Hi. I just found this site today. I entered the brain cancer section and was surprised when I read the title to your message. I had the same inoperable brain cancer when I was 3 back in 1991. I have not met or heard of anyone else who has had this. How many doctor's has your grandaughter seen so far? What have they suggested?

    Brain Stem Glioma survivor - Please help
    A little boy in my community was diagnosed with a brain stem glioma - inoperable - just last week. He has already begun radiation, and it doesn't make any sense why this is happening to such a good, sweet child; such a loving and caring family.

    The entire community is heart broken. We have not heard of a good ending to this terrible, terrible diagnosis. Please, go to www.caringbridge.org/visit/lukehansen and share your story on his guestbook. Not only will it give our community hope, it will give this family hope, as they have to be hurting more than anyone can or could ever imagine.

    We have all prayed and prayed and are prayING. Some positive news will be the most amazing blessing and a reassurance that prayers are answered. Seeing your post lifted a lot of weight off of my heart, knowing that this boy could live to be 8, 9, or even 10.

    I thank you for your consideration in this.
  • klassyt40
    klassyt40 Member Posts: 1
    #7
    jfrankenberg said:

    My prayers are with you, your family, and your granddaughter. Brain stem gliomas do not typically have good prognoses, but my son is a survivor. Diagnosed at 5 weeks, we were told he would die, but now he is 3 1/2 and going strong. No treatments, just a miracle. I pray your granddaughter experiences a miracle too!

    brain stem glioma
    Reading your post has made me feel so happy. we just found out in January 2011 an our whole world has been turned upside down but im trusting God through this whole ordeal an I know we are goona get the same results. We are on week 3 of radation and the steroids has my baby so swollen but now they have reduced her dosage so im praying that she will deflate soon. Just reading all of the post here has given me so much more hope. Im praying for this whole network and know that my heart and prayers go out to each and every one of you. God bless.

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