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...
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...
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