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| Sherry Hardeman |
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Posted:04/01/2005 2:57 PM |
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I want to share with you that another child with an ATRT dx is at UCSF. He is 2 1/2 yrs. The family lives in Fresno CA. It is a new dx, so it may be a while before they adjust and log onto this site.
Also, I wanted to share that our Oncologist has had 2 past ATRT kids under age 2 when diagnosed. Neither child had radiation. They are both 2+ years out with no reoccurrence.
One of our BMT doctors also had a set of twins where one had a Rhabdoid tumor. This was in Hawaii several years ago. The child survived and Dr. Horn followed-up for a few years. IÆm unsure if radiation was involved with this case.
There is also a little girl named Lindsey Ledwon in Chicago. She was treated at University of Chicago and is currently 30 months old. Her web address is: http://www.carepages.com/Login?TLCSession=Qk1tGcVdq3DdQyMlFf2l|7191357447438497977/168427826/6/7001/7001/7002/7002/7001/-1&ClusterNodeID=2&seed=633502. She is 2 weeks post stem cell transplant and doing well. She will begin Focal radiation in 2 weeks. I e-mailed her mother about this Rhabdoid site, but she may not want to participate for her own reasons.
Love to all,
Sherry Hardeman, Justin & LukeÆs mama
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| Renee |
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Posted:04/01/2005 3:42 PM |
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Sherry, If you know any more details about these children, esp. the ones that are 2+ years out, I would love to hear about their treatment and protocol, etc. Thanks for sharing. I do believe there are more stories and success cases out there than we know about. This would bring up the statistics of survival considerably. Thanks!\
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