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ATRT · Atypical Teratoid Rabdoid Tumors
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Messages 122 - 151 of 183   Oldest  |  < Older  |  Newer >  |  Newest
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122
Hello, My name is Michelle Kees and I am the mother of Andrew Padfield. Andrew was diagnosed with ATRT in August 2007 and is in week #36 of 51 on the...
Michelle
mkees73
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Jul 6, 2008
5:54 pm
123
Hi I see a lot of names I recognize. Seems like without the updates being sent automatically, a lot of us have lost touch with the other Rhabdoid Kids...
netty365
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Jul 12, 2008
12:59 am
124
Wow 5 years!!!! That is fantastic. My son Owen will be two years off treatment in October. What a long process but well worth it. Owen has done pretty good,...
superowenrules
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Jul 12, 2008
2:19 pm
125
Hi Netty, 5 years is AWESOME!!!!!!!!!!!!!! Could you tell us newcomers a bit more about Jared. I am really interested to hear more about what treatment...
Michelle
mkees73
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Jul 12, 2008
2:23 pm
126
Thanks for sharing your story with us. It is amazing to hear about your journey and it feel a bit similar to ours. Many congratulations to you all. Maria with...
Maria Bölja
boelja
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Jul 12, 2008
7:44 pm
127
Hi Michelle, Thanks for getting things going again. I have to admit that somewhat of a normal life has crept in to our lives and I have not been keeping up ...
Kelley Canada
kelley_canada
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Jul 16, 2008
7:21 pm
128
Hi it's Owen's Mom, the surgery he is having is called a functional hemisphrectomy. They will be taking out the rest of his left frontal lobe, there's not...
superowenrules
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Jul 17, 2008
12:52 pm
129
I'd like to start a discussion about some of the different options for relapse that other parents might know about. I think this kind of information is...
M Kees
mkees73
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Jul 26, 2008
1:44 am
130
This has been a tough week for our ATRT families. Our hearts go out to the families of Caroline Howard www.carepages.com GICKA42107 and Natalie Cunningham...
M Kees
mkees73
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Jul 26, 2008
1:55 am
131
We are also thinking of Charlie Walsh's family. I just read on his website that Charlie, too, has had a reoccurrence. ...
Michelle
mkees73
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Jul 26, 2008
2:21 am
132
I think this is a terribly hard conversation that we all must have and we all must think about. Mark and I had extremely high hopes going into Charlie's MRI...
lily.walsh
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Jul 26, 2008
2:46 am
133
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...
M Kees
mkees73
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Aug 6, 2008
4:49 pm
134
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...
isisreturning2m
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Aug 7, 2008
12:11 pm
135
Congratulations to Zoe for finishing treatment!! And thanks, Mette, for posting. I would be interested in hearing from other parents about treatment...
M Kees
mkees73
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Aug 7, 2008
12:34 pm
136
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...
Maria Bölja
boelja
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Aug 7, 2008
2:02 pm
137
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...
superowenrules
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Aug 7, 2008
6:38 pm
138
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...
M Kees
mkees73
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Aug 8, 2008
2:13 am
139
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...
M Kees
mkees73
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Aug 8, 2008
3:05 pm
140
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...
M Kees
mkees73
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Aug 8, 2008
3:08 pm
141
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...
Jenn Sherlock
jesh260
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Aug 8, 2008
5:04 pm
142
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...
superowenrules
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Aug 8, 2008
8:06 pm
143
Amifostine protects against cisplatin-induced ototoxicity in children with average-risk medulloblastoma Fouladi M, Chintagumpala M, Ashley D, Kellie S,...
M Kees
mkees73
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Aug 17, 2008
8:10 pm
144
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?...
M Kees
mkees73
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Sep 12, 2008
9:59 pm
145
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...
chrissy4u30
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Sep 30, 2008
12:55 am
146
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...
Toby Padfield
tobypadfield
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Sep 30, 2008
5:11 pm
147
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...
Chrissy G
chrissy4u30
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Sep 30, 2008
11:41 pm
148
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...
Chrissy G
chrissy4u30
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Sep 30, 2008
11:46 pm
149
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...
Toby Padfield
tobypadfield
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Oct 1, 2008
12:01 am
150
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...
lily.walsh
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Oct 1, 2008
2:29 am
151
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...
KCJoeNSuz@...
suzsudo
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Oct 1, 2008
12:28 pm
Messages 122 - 151 of 183   Oldest  |  < Older  |  Newer >  |  Newest
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