This is a message to a Chris Grabowski --
I don't even know if you will be returning to this blog or not. But you had posted a comment a few days ago about the niece of a friend of yours, named Lydia, who has just been diagnosed with MRT of the kidney.
I am just wanting to pass on some information to you to pass on to Lydia's family. One of the best internet resources for MRT is the www.cbtrf.org. This is the web site for the Children's Brain Tumor Research Foundation. It is an organization founded Jeff and Katie Shaddix in honour and memory of their son Jonathan, who passed away from AT/RT (the brain tumor verson of rhabdoid cancer) in May of 2009. Jeff is trying to keep a database of all kids with AT/RT / MRT / extra-renal & non-CNS MRT (basically all other Rhabdoid cancers). The web site also hosts a number of discussion forums and is a really good place to go to find out about the latest research and treatment protocols for rhabdoid cancer.
The AT/RT / Rhabdoid community is a very supportive one - we have all been through the experience of our children receiveing this heart-wrenching diagnosis and dealt with the challenges of chemotherapy and, in some cases, radiation. I would strongly urge them to register on the site into the database. As Jeff is trying to gather a database all children with MRT / AT/RT in the world to be useful to research.
If Lydia's family has set up a caringbridge page or carepage or web page or blog - could you let me know - Jeff Shaddix at cbtrf.org would also like to know as he tries to keep track of all of our rhabdoid kids. I would like to follow her journey and know how she is doing so I can be specific in my prayers for her.
Peace,
Cynthia
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1 comment:
Hi Cynthia,
How are things in Winnipeg? It was great seeing all of you again this Christmas, and I'm glad we had lots of chance to hang out. I miss that a lot living in Boston.
As I think I mentioned, I have a good friend at work whose daughter has a rhabdomyosarcoma - I'm not sure if that's close enough to have it be covered by the support group that you mentioned. If it does fall into the same category, I'd love to get more information to send on to Jim (my friend is also a Jim ;-).
I hope all is well with you, Henry, Lydia and Sebastian!
Love,
Jim
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