CSN Login
Members Online: 9

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

metin
Posts: 1
Joined: Aug 2009

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

sue Siwek
Posts: 281
Joined: Jun 2009

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
Posts: 1
Joined: Aug 2009

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
Posts: 2
Joined: Oct 2009

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
Posts: 1
Joined: Oct 2009

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
Posts: 2
Joined: Feb 2014

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!!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network