Please welcome Michelle and her daughter Kaitlyn to the list. Michelle, I am so sorry for your need to be here. Obviously I have read your websites (at least...
Thank You Loice for inviting me to Join PBT Angels. At this point I am finding that my biggest support is from message boards and different online groups. And...
Michelle, Glad you made it over here to one of these groups. I hope you find them helpful (I have). How is Kaitlyn today? And, how are you doing? This list...
I have typed this on microsoft word while waiting for the phoneline at my aunt's to open up (she has dialup internet), so I apologize for the copy-pasting. I'm...
Chelsea, My heart is breaking for you. I don't want to even imagine the shock of this new news. I only know to ask GOD to give strength and help in making...
Chelsea, I am so sorry. I don't know what advice to give but I will be praying that you have peace with the one you do make. Remember that what ever decision...
Please welcome Paracat22 from Arkansas Welcome and I am sorry for your need to be here. This is a very small group related to AT/RTs with just alittle...
Welcome to the AT/RT group. I am sorry for your circumstances that bring you here and I am sorr that I do not know your name. When you feel ready I would...
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...
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...
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,...
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...
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...
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 ...
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...
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...
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...
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...
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...
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