It is with great sadness that I share with you the passing of Grayson Ketab on Tuesday, August 5th. Grayson had ATRT. Our hearts are with his parents, Leslie...
Hello to everyone - I haven't posted yet but I'm really glad this group is going again - thanks Michelle. Just wanted to share that Zoe finished her last...
Congratulations to Zoe for finishing treatment!! And thanks, Mette, for posting. I would be interested in hearing from other parents about treatment...
Hi, Just wanted to add some info about hearing loss. Our daughter Olivia, 11, had (has) her tumours on the nerves that control hearing/balance/facial movement...
Owen is almost 2 years off treatment, as far as side effects from chemo, none. His hearing is great. He has right sided weakness from where ht tumor was...
Special thanks to Shaine's parents for posting this information on their website (http://www.caringbridge.org/visit/shainelynn) U of C scientists grow disease...
Thanks Cyndi, for sharing more about Owen and his journey. I know these days are a bit hectic for you while in the hospital with Owen as he recovers from the...
Hi Maria, Thanks for checking in! It sounds like Olivia was switched from the -platin durgs to cyclophosphamide, a very common med in most of the ATRT...
Just wanted to say congrats to Zoe and her family for completing treatment. Also to Owen, i have followed his story and he is such a brave little man, and...
The Intra Beam is kind of like a gamma knife, it is a one time high dose of radiation right to the tumor bed site. It is a wand. There have been no other AT/RT...
Amifostine protects against cisplatin-induced ototoxicity in children with average-risk medulloblastoma Fouladi M, Chintagumpala M, Ashley D, Kellie S,...
Welcome new member, suzsudo <KCJoeNSuz@...> who joined saying their son that was diagnosed with AT/RT in March of 2007. Does your son have a carepage?...
Hi, i'm not really sure how these support groups work, but was given the site by our nurse. My son Nicky was diagnosed 4 weeks ago with AT/RT, and after...
Chrissy, I am sorry to hear about Nicky's diagnosis. Can you provide some additional information on the chemotherapy treatment that has been proposed? How...
hi, his oncologist wanted to do the oral, intrathecal, and iv. DFCI IRB protocol #02-294 his craniotomy was on 9-2-08, and they removed 80%. we'r being treated...
sorry, i think half of my message got lost. how is your son? did they remove all of his tumor? which chemo did you decide on? ... From: Toby Padfield...
Andrew is doing quite well, all things considered. He is a little over 1 year from diagnosis, and the tumor responded very well to the treatment. The last 2...
Hi Chrissy - My name is Paige Walsh, and my son, Charlie was diagnosed in March '07 with an ATRT. We has just shy of his 3rd birthday. We are 20 months post...
Chrissy, I am sorry that you are now a member of our elite group. I just wanted to pass on this quick bit of advice- don't listen to the prognosis- there...
I agree with the statement made about not agreeing with the diagnosis! I sent you an email to your yahoo account, but to confirm the point, please don't take...
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...
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