Hello all, I would love feedback on what everyone things is needed for AT/RTs (besides a cure). I have followed the rhabdoid kids board in the past but have...
Kelley, I did add a folder called our kids websites in the links. I put Collin's in. I am expecting this to be a work in progress. Any other suggestions are...
This recently was an article flagged by Al Mussella's site- Virtual Trials from J Clin Oncol. 2004 Jul 15;22(14):2877-84. The results are fairly depressing to...
Loice, This will be a great addition and I am happy to participate. When I read the article, it is funny because I look at it positively. When Sean was...
Hi, Maria from Sweden is now a member of this email group to see if I can find and give support to others in similar situations. I have been on Rhabdoid kids...
Maria, I have seen you on the Rhabdoid Board. I have added Olivia's webpage to the list of links under "Our Kids Websites". I am glad you are here. Loice ......
Glad to see you here. I agree in comparison the numbers are better to when Sean was dx. Amar Gajjar told me that I really needed to rewrite my paper and he...
Dear Loice, Your paper on ATRT was what put me in touch with you. It was so hard to find any grandparent friendly information on Ben's tumour. Your phone...
Welcome Glad you found us and sorry you need to be here. For linking in your daughter's website just go to the main site http://groups.yahoo.com/group/ATRT/...
My name is Julie Cook I have a daughter Emily Cook who was diagnosed at 13 months with Rhabdoid Tumor of the brain. She started Chemotherpy in March and...
Julie, Well lots of stuff from your post and I am sure we will have lots of stuff to talk about for a long time. On research on AT/RTs- did you see this paper...
Julie, Well lots of stuff from your post and I am sure we will have lots of stuff to talk about for a long time. On research on AT/RTs- did you see this paper...
Hi Everyone, I have had a busy week of ups and downs being in he hospital with Emily. As I read families updates I feel I should not complain, and I guess I...
I feel so out of the loop. Although we have decided to not treat with Chemo anymore, I still have so many questions. In a post someone said, "I think we are...
Dear Anastasia, Even though my daugters diagnose is ATRT, I feel just like you, there is no one that has excatly the same "problems" as she has. But I think...
Anastasia, I know I feel the same way also, that is why I joined this group. I could not get answers that I needed my just reading the upsates of the journals...
Anastasia and Julie, I remember how you feel. As you look for answers to your questions you are only left with more questions. My daughter Kate (the one...
Dear Anastasia and Julie, God, sometimes I am having the worst and most lonely day and then I read an email to remind me we are not alone! I completely relate...
Danielle, I will be praying for your family today. MRI are scary things. I do not think I will ever get used to the feeling in my stomach I have until I hear...
Ben had his MRI on Wednesday. I know I shouldn't jump for joy, but, there was no sign of the tumour. SO I AM JUMPING. The doctors are cautiously optimistic....
Hope is what keeps us going! Glad things are going so well. Kelley m/o Collin ... From: Marilyn Gallagher [mailto:marilyng@...] Sent: Friday, October...
Bravo for Ben...I too am jumping for JOY as Sean had a clear MRI yesterday too! He is now 4 years from diagnosis! There is always hope. Danielle McCauley Mom...
Way to go Sean and Ben! It does my heart well to hear good news. Karrie Kate's Mama DanielleRB@... wrote: Bravo for Ben...I too am jumping for JOY as Sean...
So happy for all of you with good news. I hope it infects to us who has MR coming. Heard today about a great discovery for treating children with cancer. I do ...
So glad to hear about the clear MRI s. This give me hope for Emily. She is having a tough time with this chmo drug she is taking a home. a lot of vomiting....
Anastasia, I saw your post and wanted to write to let you know you are not alone. My son, Pierce, was diagnosed at 4 weeks old with an ATRT that was in the...
