survivor of childhood cancer

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  • AmazingHands
    AmazingHands Member Posts: 4
    #62
    showell07 said:

    Hey Everyone im a two time
    Hey Everyone im a two time cancer survior. I was diagnosed when i was 8(September13 1996) and than again when i was 16 March 2005) im 20 years old now and im doing better. I would also like to meet other survivors. Thanks everyone and congratulations!
    Steven Howell,WV

    8 year old child survivor
    I found this story about this young girl that developed a brain tumor at the age of 8. She was a normal girl, then one day she fell - just like any other kid may fall, and they later found out that she had a brain tumor. It is an amazing story so I thought I'd share it.

    http://youtube.com/watch?v=3ZGCrzTUp40
  • btcat
    btcat Member Posts: 51
    #63
    sparcky said:

    Hi iam also a survivor of a pediatric brain tumor . I was diagnosed with medulla blastoma in 1966 at the Hospital for Sick Children in Toronto Canada. I belong to a group at sick kids called Brain child. You may want to check out there website. Its kind
    of tricky to get into. Try www.sickkids.on.ca
    then go to family services. This is primarily a parents group but many survivors attend . write me any time.

    hi : )
    I was just looking over this discussion again. I haven't been back in a long time. Not exactly a great thing to do when you start a discussion. Thanks for the info on Brain Child. I'll check it out.
  • btcat
    btcat Member Posts: 51
    #64
    dbdiem said:

    Hi my son is an 11 year survivor of medulloblastoma. Did you have radiation back then? He is having severe side affects from it and I would really like to know more info if you can.

    hi : )
    Sorry it's been so long to respond. Yes, I had radiation. Order of things was operation, radiation and chemo. Radiation was high intensity. It caused a 2nd, benign tumor on my brain about 20 yrs later.
    How is your son? what kind of side effects?
    Again, sorry it's been so long for me to respond. I hope I can still help somehow.
  • btcat
    btcat Member Posts: 51
    #65
    Korena said:

    Hi. I just wanted to talk to someone and hear their story, instead of telling my own. I hope you respond. Thank you.
    Kory

    HI : )
    HI Kory. I'm sorry it's so long for me to respond. Have you checked out the chatroom here? First thing I tried here. Some great people there. Instant reponse, you don't have to wait for someone to reply.
  • btcat
    btcat Member Posts: 51
    #66
    sparcky said:

    Hi Christy
    Im also a survivor of a brain tumor. I was diagnosed in 1966. One of the few from the 60's. I also know a few brain tumor survivors
    up my way. We are all starting to go through some of the late effects. Our long term follow up clinics are no help. One thing that we find common is dizzyness. It comes and goes. Have you(or any one else) ever had this problem and has any one been able to do any thing for you?

    HI : )
    Sorry for long time to reply. I haven't been back to this in a long time. ( Well duh, obviously!) Not the greatest thing to do when you start a discussion. Possibly irresponsibility connected to the young child mentality that's stuck in my psyche somewhere.
    Up your way? Where is that? I'm in northwestern lower Michigan.
    I do get dizzy a good amount. I space out alot. So many things.
    Write me at kitty.cat72@centurytel.com
  • btcat
    btcat Member Posts: 51
    #67
    babygurl84 said:

    survivor of childhood ALL (Leukemia)
    Hi, my name is Kristi. I was diagnosed with ALL at 20 months old and was in a research and under went treatment until i was 5 yrs old. i am am now 24. I under went several years of Chemo. Radiation to the brain, spinal tap, bone marrow...u name it. But as i get older i have noticed that there are things im not up to date on or not as fast to catch on as people my age should... i was just wondering if you or anyone else have had the the same long term effects from their treatment. And if so is there treatment now to help, or follow up to find out what is going on? Thanks.
    Kristi

    HI : )
    I have problems like you mentioned; especially that it takes me longer than "normal" to process thinking. I had a 2nd tumor as a late effect of radiation about 20yrs after, on the brain not in it and benign. I now have a titanium plate in my head from that surgery. I hope I can help.
    Write to me at kitty.cat72@centurytel.net
  • btcat
    btcat Member Posts: 51
    #68
    bedoinbabe said:

    my 20 yr old son is receiving treatment for medulloblastoma - he's 20 - if you're up to it, i'd like to know more about your tumor (location, size, excision, any spread, treatments) you can e me at bedoinbabe@yahoo.com

    HI : )
    My tumor was inside the top right ventricle at the top of my spine. I don't know specifics about extraction, but I had surgery at the back of my neck. It didn't spread. I had operation, high intesity radiation and high intensity experimental chemotharapy.
  • btcat
    btcat Member Posts: 51
    #69
    themodeldoctor said:

    What have been your long term effects?

    HI : )
    hmmm, major short term memory problems, nervous system problems, minor digestive system problems, slowed cognition, a majorly messed up spine, emotional problems, etc. Oh I guess I shouldn't forget the begning tumor on my brain I got as a long term effect of the high intensity radiation about 20 yrs after treatment.
  • btcat
    btcat Member Posts: 51
    #70
    swn1123 said:

    I am a 30 year survivor of cancer. Diagnosed with Ewing's Sarcoma at the age of 15. Treated with surgery , chemo, and radiation at M.D. Anderson in 1973 and beyond. I am a memeber of the Long-Term Childhood Cancer Survivor's Study conducted by the University of Minnesota. If you want to talk, let me know!!

    HI : )
    I've seen a lot of you talking about this Long-Term Childhood Cancer Survivor's Study conducted by the University of Minnesota. Can you tell me more about this please? E-mail me at c-cat@snailmail.net
  • btcat
    btcat Member Posts: 51
    #71
    IreneG said:

    Hello, crawfordc... I, too, was diagnosed with a brain tumor... medullar blastoma... in 1980. I am now 38. Write to me so we chat.

    HI : )
    Sorry it's taken me over a year to reply. I've not been back for a long time. I hope I haven't waited too long to reply. I hope you still want to chat. I'd like to talk to you. You can e-mail me at c-cat@snailmail.net
  • btcat
    btcat Member Posts: 51
    #72
    Vickie78m said:

    Hi I had All when i was 8 and now Im 29 and doing fine I just celbrated my 6 month wedding anniversary

    HI : )
    Beautiful picture Vickie. Congratulations on the wedding anniversary. That would be over year now I suppose.
  • btcat
    btcat Member Posts: 51
    #73
    sparcky said:

    Hi iam also a survivor of a pediatric brain tumor . I was diagnosed with medulla blastoma in 1966 at the Hospital for Sick Children in Toronto Canada. I belong to a group at sick kids called Brain child. You may want to check out there website. Its kind
    of tricky to get into. Try www.sickkids.on.ca
    then go to family services. This is primarily a parents group but many survivors attend . write me any time.

    Hi : )
    Hi Sparky. Sorry it's taken me forever to reply. Or did I talk to you before? Drain Bamaged memory! How old were you when you were diagnosed. I was 10, about 2 ,months before my birtday.
  • btcat
    btcat Member Posts: 51
    #74
    alaskana said:

    Thanks for sharing
    My son is 7 and had 3 years of chemotherapy for ALL. He is in 2nd grade, but teachers say he has trouble focusing and finishing work-tires easily. Otherwise everythings ok. He's only been off the chemotherapy since May. I was wondering if you remembered how long it takes to feel up to speed after chemotherapy and if lack of focus and tiring is normal this many months off the medicine? There seems to be a lot of information for undergoing chemotherapy, but not much for what happens after treatment? Thanks for any insight you can provide for me.

    Hi : )
    I really don't remember a particular amount of time to get back to speed. Unfortunately, some of us don't, particularly those who've had radiation and or brain surgery like myself. But there are many out there who have come back to live full,or at least close to it, mental function. There are several books and organizations out there for survivors One book in particular I can think of is kind of a "handbook" for survivors of cancer. I can't remember the name exactly, but the author is Nancy Keene, i think. A great resource that I used from about the time of my operation/diagnosis is Candlelighter's Childhood Cancer Foundation. thier website is candlelighters.org . Check them out.
  • Aquagirl18
    Aquagirl18 Member Posts: 45
    #75
    Childhood cancer survivor
    Wow all of you are amazing. I am so glad I found this website and I just found this discussion today.
    I don't know what to say so I'll start by telling a bit of my story.
    I am 29 years old and I was diagnosed with Neuroblastoma stage 4 at around 13 months of age.
    I was treated in what my doctors have called the dark ages (1979-1980's) I was treated with chemotherapy and radiation because I had tumors on my kidney and adreanal gland, I had surgery to have them removed and the tumor also matastized to my skull area. They used radiation on my skull and lower chest/stomach area. Then my parents were told about an experimental drug and it caused me to go into heart failure. My cancer was wiped out and I have lived with the late effects of my treatments ever since. I have congestive heart failure its also called cardiomyopathy and disabilites in math and science. I grew up as a child feeling like a small adult and in a way my childhood was taken away. I had to grow up fast and I felt different than my peers and I had trouble being accepted socially. Having had cancer changed my life. I learned a wisdom and a strength that I have carried all my life. I feel blessed to be alive. I am proud to be among so many survivors and I strongly feel we are here for a reason.
  • betnyhope
    betnyhope Member Posts: 2
    #76
    showell07 said:

    Hey Everyone im a two time
    Hey Everyone im a two time cancer survior. I was diagnosed when i was 8(September13 1996) and than again when i was 16 March 2005) im 20 years old now and im doing better. I would also like to meet other survivors. Thanks everyone and congratulations!
    Steven Howell,WV

    WHAT TYPE OF CANCER DID U
    WHAT TYPE OF CANCER DID U HAVE
  • mghalayini
    mghalayini Member Posts: 1
    #77
    IreneG said:

    Hello, crawfordc... I, too, was diagnosed with a brain tumor... medullar blastoma... in 1980. I am now 38. Write to me so we chat.

    I need to find some survivors of childhood Medulla Blastoma
    Irene G...I saw your posting...and would love to reach out to you if you are willing...I have a 10 year old nephew that 4 weeks ago was diagnosed with Medulla Blastoma and underwent surgery the next day. He is now dealing with Posterior Fossa...and just started his 6 week radiation 2 yesterday.

    I am trying desperately to find some hopeful survival stories and people that have been through this and came out like a champ...right now...that is what his mother and father need more than anything...to know that there is hope for their boy to have a normal life...to be able to be himself again.

    If there is anyone out there that had this childhood Medulla Blastoma and is willing to share thier story, I literally beg of you to respond...we just haven't been able to find those stories of hope to focus on for the future...please respond and share your story...this family needs to know there is a way through and out of this nightmare. Please email me at jamara@pumpkinheadkids.com. thanks.

    thank you and prayers to you all....

    Jamara
  • liveformiracles
    liveformiracles Member Posts: 13
    #78
    hi!
    I am 23 years old and I was diagnosed at age 3 with ALL. I love meeting other survivors, and just sharing experiences! :)

    Laura
  • Unknown
    Unknown
    #79
    This comment has been removed by the Moderator
  • heart-2
    heart-2 Member Posts: 4
    #80
    Hi
    I'm new at this. I'm 28 now and had ALL when I was 3years old. The treatment I recieved back then has caused me to grow brain tumors. Currently I've got 3 on my brain and 1 in my left eye socket. It's good to know that there are people out there like me and want to talk. I am free to talk most of the time if you want.


    heart-2
  • heart-2
    heart-2 Member Posts: 4
    #81
    alaskana said:

    Thanks for sharing
    My son is 7 and had 3 years of chemotherapy for ALL. He is in 2nd grade, but teachers say he has trouble focusing and finishing work-tires easily. Otherwise everythings ok. He's only been off the chemotherapy since May. I was wondering if you remembered how long it takes to feel up to speed after chemotherapy and if lack of focus and tiring is normal this many months off the medicine? There seems to be a lot of information for undergoing chemotherapy, but not much for what happens after treatment? Thanks for any insight you can provide for me.

    learning disabilities
    Hi I hope this helps. I grew up with learning disabilities, and still have some. I don't remember when they started. I got my cancer (ALL) at 3 years old and recieved chemo and radiation. I just remember not doing well in public school and was pulled out. I was homeschooled from the 6th grade on till I graduated. I've gotten some tutoring in the past and have learned ways to get around my learning problems. I never got back up to speed with others. I have found the ways I learn best and use them. I'll be praying for you and your son.

    heart-2

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