Brain cancer in in kids AT/RT atupical teratoid rhabdoid tumor

metin
metin Member Posts: 1
edited March 2014 in Brain Cancer #1
Brain cancer in in kids AT/RT atupical teratoid rhabdoid tumor has anyone any knowledge about this type of cancer my 10 months old son was diagnosed with it i there any survivors doc gave less then 10% chance to live

Comments

  • sue Siwek
    sue Siwek Member Posts: 279
    #2
    i have no knowledge of your
    i have no knowledge of your childs tumor but, i would suggest that you him to a teaching hospital in your area it will be your best chance.
  • Cyndi710
    Cyndi710 Member Posts: 1
    #3
    I'm sorry to hear about your
    I'm sorry to hear about your sons diagnosis. My son was diagnosed with AT/RT when he was 13 months old. He is a happy and healthy four and a half year old. We are almost three years off treatment. If there is anything I can do, feel free to contact me. There are a few websites I can suggest and I have a long list of families who have been through the same diagnosis. We have a caringbridge site if you want to check to see how Owen's treatment went. www.caringbridge.org.visit/owenlyons
  • aidensmom
    aidensmom Member Posts: 2
    #4
    ATRT brain cancer
    Hi, My name is Amanda Allen, My son Aiden was diagnosed with ATRT in November of last year. Visit this website www.cbtrf.org they have a forum section to ask questions and it is a website for rare children's brain cancer and was started by the parents of a child with ATRT. It has info on clinical trials, treatment info etc. If you feel like there is no info out there you are not crazy or a bad parent, there really is no information out there about ATRT. As far as treatment goes my personal picks would be Children's Hospital of Philadelphia, Dr Beigel works there and she discovered ATRT, Texas Children's Hospital and St Jude Children's Hospital. My opinion:CHOP has produced the most survivors on a treatment but they have had the most treatment related deaths, St Jude has a very supportive enviornment but they are conservative in their treatments of ATRT,they are very concerned with a child's quality of life, Texas Children's seems to be a mix between the two. I wish I could help more... Again check out www.CBTRF.org my son's angel site is www.aidenstory.com. Keep faith and keep hoping. My son Aiden is in heaven and the prognosis is 10% but there are children who have survived and there is no reason why your child cannot be the one.
  • sunview
    sunview Member Posts: 1
    #5
    ATRT
    yes we do have a lot info .our 5 month old whose diagnosed whit atrt in april 2008 wee will try to help the must possible
  • Valentini
    Valentini Member Posts: 2
    #6
    Radiation??
    My son David, 4yrs old, was diagnosed with ATRT brain tumor on Dec 16th. He has since completed his first 2 rounds of Chemo Therapy and is getting ready to begin his 6 weeks of Proton Radiation followed by 3 more rounds of Chemo Therapy. I am hoping to find someone who’s child was diagnosed close to the same age and has had or is currently receiving the Proton Radiation therapy. My husband and I are feeling very conflicted about this step in the treatment and would love to hear some perspectives from other parents and/or drs. We are very, very concerned about the side effects this treatment creates versus the “chance” of a cure. I have read a lot about the side effects on younger children but have not found any for children age 4 or older. Thank you. You can find David on the CaringBridge website (search: David Valentini) or email me at msvalentini4@hotmail.com

    Thank You!!
  • Claudia Kester
    Claudia Kester Member Posts: 2
    #7
    Cyndi710 said:

    I'm sorry to hear about your
    I'm sorry to hear about your sons diagnosis. My son was diagnosed with AT/RT when he was 13 months old. He is a happy and healthy four and a half year old. We are almost three years off treatment. If there is anything I can do, feel free to contact me. There are a few websites I can suggest and I have a long list of families who have been through the same diagnosis. We have a caringbridge site if you want to check to see how Owen's treatment went. www.caringbridge.org.visit/owenlyons

    ATRT

    My 11 months old baby has been diagnosed with ATRT. 

    She is undergoing chemotherapy at the moment. 

    Could you let me know what type of treatment your baby had? 

    Where did you have the treatment ?

    I really appreciate your help and advice

    Claudia

  • kalai
    kalai Member Posts: 2
    #8
    I'm an Indian and my daughter

    I'm an Indian and my daughter 1.8 months old have diagnised with ATRT and our family is completly down after hearing this.

    Im hearing that below 2 years, its not advisile to undergo chemo or surgury but then how can I save my daughter from this serpant.

    People who have won this disease pls give me some energy for saving my daughter!

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