I hope this post with encourage and give hope to families who's children have AT/RT.

Our daughter Sophie was diagnosed with AT/RT at 3 &1/2. We were a normal family living normal lives on the Gold Coast in Queensland Australia when our daughter was taken to Hospital on the 15th August 2012.  She became ill over the weekend with vomiting so we took her to the local Doctor.  He examined her and said she had a virus but it wasn't until he checked her legs and her left leg kept falling to the side.  He said to take her to hospital to have further tests as he wasn't happy with this.  The next morning she woke not able to sit and stand on her own so we took her to hospital.  The Paediatric Doctor examined her and thought she had Encephalitis which is a virus that can attack organs.  We then transfered her to the Mater Childrens Hospital in Brisbane where a Neurologist examined her and thought the same thing.  The next step was an MRI Scan which showed a Brain Tumour.  I didn't even have time to see my daughter as they rushed her straight into surgery as she had fluid on her brain and was quite critical at this stage.  They removed a small amount of the Tumour for a Biopsy and inserted a shunt to drain the fluid on her Brain.  The Neuro Surgeon advised us that she only had about 5 days to live if we hadn't taken her to hospital. I felt like my whole world had fallen apart just over night.  She was in hospital for 6 days and then came the final news from the Oncologist that she had an AT/RT.  He explained that her Tumour was located at the front left hand lobe, was very aggressive and hadn't been there for any longer than 12 months, she had about a 40% chance of survival and is a very rare form of cancer with ony about 300,000 world wide diagnosed every year.  After hearing this, you automatically think what chance have we got.  So then you get all of your friends and family praying and giving you all the hope you could ask for.

Sophie started her Chemotherapy in September 2012 which was a 16 week long, gruelling and very stressful treatment.  Her Chemo Protocol was derived from the States which is treatment SJYC07. Her hospital are members of the COG which is the largest Paediatric Clinical Trials Group. Over 240 Hospitals throughout the world participate in COG (The Children's Oncology Group). She finished her Chemotherapy in December and had her second operation on 23rd January 2013.  Her Neurosurgeon said her Tumour had shrunk from 8 centimeters to 1 centimeter after her Chemo which was absolutely outstanding.  We never imagined in a million years that we would get to this point.  They sucessfully removed all her Tumour and she is now recovering very nicely with no problems at all.  The next stage is Radiotherapy which will be 5 days a week for 6 weeks.  Her treatment is based on the Tomotherapy which is a very advance piece of equipment from the States.  Australia has only one of these machines so we are very blessed that we are receiving the best.  Will update you all after her Radiotherapy. 

A few things to keep in mind.  Never give up just because a Doctor tells you only have a low chance as every child is different when it comes to how well they cope with treatment and how well they respond.  Always maintain a positive attitude as your child will pick up on the positive vibes.  Don't surround yourself with negative people, this will only bring you down & most of all, love your child as much as you can & say alot of prayers.  "Hope is a wonderful thing"






  • kdnami74
    kdnami74 Member Posts: 1
    Need your advice for the autologous transplantation for AT/RT

    I'm writing from Korea and my daughter is taking the chemotherapy at the momet.  Unfortunately the tumor was not removed perfectly due to the surgical difficulty in the March.  We found that the left tumor was shrunk to 1/4 by this chemotherapy through MRI scan after 2nd chemotherapy.   We will scan MRI again after 4th chemotherapy.  Really hope to be removed perfectly in that time.  I want to know wheather the autologous transplantation is applying in other countries or not.  Also want to hear its effect if we take this.  If anybody know this treatment or took it, please advise for its result or effect.   My daughter will take the proton radiation therapy after the chemotherapy.  The autologous transplantation seems to be much more dangerouse and not to be proven treatment such like the chemotherapy and radiation therapy.  In this case I can't make sure wheather we take it further for my daughter or not. I hope to hear any advice and hope every parent do not give any positive thinking.

  • skimbubble26
    skimbubble26 Member Posts: 1
    Thank you for sharing your

    Thank you for sharing your story my son was diagnosed with ATRT IN June of this year... We have started chemo and are currently undergoing radiation therapy. He has a small tumor in his brain going into his fourth ventricle and a small spot on his lumbar spiNe after lumbar puncture with intrathecal chemo as well as systemic chemo his MRI sfortieth new growth and the spot on his spine was gone!! He still did have cells in spinal fluid however after the radiation they are Hopfull there will be none.  We still have chemo and stem cell transplant to under go but we are so thankful that treatments have been working so far!  Thank you for sharing your story and your family will be in our prayers

  • Nictan
    Nictan Member Posts: 1

    Hi Michelle,


    I hope Sophie is well now. can you share the type of chemo and radiation you had? As my child has just been diagnosed with atrt at 3months. I'm quite lost in gems of the treatment for her.

    Hope you can share more information and what to take note of.




  • Valentini
    Valentini Member Posts: 2
    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 [email protected]

    Thank You!!