Hi, my name is Cyndi, my son Owen was diagnosed with AT/Rt back in April 2006 when he was 13 months old. He is 2 years off treatment. Sorry you had to find us...
Hi Chrissy, I'm sorry to hear about your son. I agree 100% with other parents about not paying attention to the statistics. When my daughter was first...
The TV station in Hattiesburg, MS did a short report on Cole and his mom, Terry (my sister). Its amazing how much was edited from all the film they made!...
Thank you so much, i am trying to stay hopeful. ... From: babyella418 <babyella06@...> Subject: [ATRT] Re: hi To: ATRT@yahoogroups.com Date: Wednesday,...
cindi, thank you for your inspiring words they mean alot to me, your son was the same age as nicky is now, i am glad to hear he is doin ok, they sarted chemo 3...
thank you, a couple of people have said to go to St Judes, but i need to see how things are going first. thank you for the sites. i hope your nephew is doing...
we set up a care page for nicky its Nicholas07.webs.com ... From: superowenrules <superowenrules@...> Subject: [ATRT] Re: hi To: ATRT@yahoogroups.com ...
Hi All - we have been on pins and needles watching a new "spot" that appeared on Zoe's MRI on Sep 16th. Possibilities were: radiation-related changes OR the...
IT'S WITH A VERY HEAVY AND BROKEN HEART, THAT I SAY NICKY EARNED HIS ANGEL WINGS AT 8:15PM OCT 8, 2008.HE WAS ONLY 13 MONTHS OLD. WE BROUGHT NICKY HOME AFTER...
Oh Chrissy, I am so so sorry. I read on your page earilier in the week that you were hoping to bring Nicky home. I am glad that he was able to make that trip...
Glad to hear you guys got some relief with MRI news. These spots can really scare you. The waiting is just terrible you hope for the best but prepare for the...
Many of you may or may not know of our our daughter, Mattea. She was diagnosed with ATRT in July 2006. We obtained one of the last openings in THE PROTOCOL...
Tara, Great question, and good area to explore further. There hasn't been alot of discussion about genetic issues on our ATRT board, and it is an area of...
My child Joey had the genetic testing. He does have the INI 1 deletion. No one else in our family was tested and will not be tested. In a message dated...
My son, Jonathan Shaddix, had the genetic testing which showed that the mutation is present in every cell (Rhabdoid Predisposition). Neither my wife or I have...
my son Michael had the INI 1 deletion test and his results were negative. he also had the p53 test and those results were negative as well. michael does have...
My daughter Sophiella has INI 1 gene mutation Neither parents have it No known related disease in either of families ... about genetic issues on our ATRT...
Charlie Walsh INI1 Gene Deletion in tumor and all cells Neither parents or other three siblings has the deletion My second cousin died of a brain tumor when...
Hi, Thanks for your email. Short reply to your answer as I am soon of to bed. It makes me wonder if we have this gene. I know that they have tested us but not...
Hi, Thanks for your email. Short reply to your answer as I am soon of to bed. It makes me wonder if we have this gene. I know that they have tested us but not...
Hi All - Zoe Earlywine does NOT have the INI-1 deletion. Her docs have noted that she has atypical ATRT. We have not been tested. No history of brain tumors on...
Paige - I wonder if Charlie's shoulder tumor was a schwannoma or neurofibroma. I know nothing about these two tumors, except that apparently they are also...
You read my mind. I'm going to discuss with the doctors. ________________________________ From: ATRT@yahoogroups.com on behalf of M Kees Sent: Thu 10/16/2008...
oh, i think they mean it's atypical because she does NOT have the gene deletion, whereas most kiddos with ATRT do have the deletion, in the tumor cells or all...
Joey was considered an Atypical ATRT- I thought it was because it was located in his neck versus the CNS or kidney. He does has the gene deletion. Hopkins...
Phone interview for ATRT families with Dr. Jaclyn Biegel of CHOP - 12/3 @ 7PM ET Jeff Shaddix, Jonathan Shaddix's dad, has talked with Dr. Jaclyn Biegel, the...
The foundation, Smiles for Sophie Forever, is creating an "awareness tree" for the holiday season to raise awareness about pediatric brain tumors. The tree...
Hi atrt@yahoogroups.com, I set up a Facebook profile where I can post my pictures, videos and events and I want to add you as a friend so you can see it....
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