Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 Timi: I have met parent with babies with Leukemia at Shands Hospital in Gainesville, Florida and know that MD in Houston, Texas has a division dedicated to pediatric Leukemia. I am sure that other facilities across the nation work with babies. Another good source is your local Leukemia Society. They can help you get help and fast. God bless and good luck. With warm regards, Matt ville, FL DX January of 2005 Gleevec Since May 2005 Father of 3 mtmaynor@... In a message dated 11/10/2006 2:24:24 P.M. Eastern Standard Time, timiet@... writes: Hi, I am trying to find anyone who has a child who has been diagnosed with CML. My friend's 3 year old daughter was just diagnosed with CML & started Chemo for it on Monday. As you all probably know, it is nearly unheard of in a child of this age & I want to find any information out there that is helpful. Trying to find the best Dr. the best hospital, looking for the best place for BMT. You name it. Even someone who I can swap stories with you know? So, I have started skimming through page after page trying to find & decided this could take hours upon hours & thought maybe if I posted, someone would reply. I'm interested in any & all stories, no matter what the circumstances are. I wish you all well & I hope to talk to you all more later, as I intend to be around allot! Thank you all so much for taking the time to read this! Timi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 Hi there, I have little education on CML (husband diagnosed 2 mths ago) but am wondering why Gleevec is not he first course of action as it has shown to completely revolutionize the care of CML? I would suggest the parents get second opinions...it has helped us for sure...as well as take info from this great group! Will pray for this little girl... shalyn > Hi, I am trying to find anyone who has a child who has been diagnosed > with CML. My friend's 3 year old daughter was just diagnosed with CML > & started Chemo for it on Monday. As you all probably know, it is > nearly unheard of in a child of this age & I want to find any > information out there that is helpful. Trying to find the best Dr. > the best hospital, looking for the best place for BMT. You name it. > Even someone who I can swap stories with you know? > > So, I have started skimming through page after page trying to find & > decided this could take hours upon hours & thought maybe if I posted, > someone would reply. I'm interested in any & all stories, no matter > what the circumstances are. I wish you all well & I hope to talk to > you all more later, as I intend to be around allot! > > Thank you all so much for taking the time to read this! > Timi > > > > " Catch on fire with enthusiasm and people will come for miles to watch you burn. " - Wesley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 Thank you for the info. She is actually taking Gleevic. > > Hi, I am trying to find anyone who has a child who has been diagnosed > with CML. My friend's 3 year old daughter was just diagnosed with CML > & started Chemo for it on Monday. As you all probably know, it is > nearly unheard of in a child of this age & I want to find any > information out there that is helpful. Trying to find the best Dr. > the best hospital, looking for the best place for BMT. You name it. > Even someone who I can swap stories with you know? > > So, I have started skimming through page after page trying to find & > decided this could take hours upon hours & thought maybe if I posted, > someone would reply. I'm interested in any & all stories, no matter > what the circumstances are. I wish you all well & I hope to talk to > you all more later, as I intend to be around allot! > > Thank you all so much for taking the time to read this! > Timi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 At 03:32 PM 11/10/06 +0000, you wrote: >Hi, I am trying to find anyone who has a child who has been diagnosed >with CML. My friend's 3 year old daughter was just diagnosed with CML > & started Chemo for it on Monday. As you all probably know, it is >nearly unheard of in a child of this age & I want to find any >information out there that is helpful. Trying to find the best Dr. >the best hospital, looking for the best place for BMT. You name it. >Even someone who I can swap stories with you know? Hi Timi, Go to www.newcmldrug.com on the left hand click on Child CML Talk there are parents there who's kids have CML and have had BMTs read the old posts, and if you find someone you want to write to, click on their name and you will be able to e-mail them directly Some of the best centers for transplant are: in Seattle, Fred Hutchinson Cancer Research Center (name may have recently changed, but you will find this on google............ in Los Angeles area...........City of Hope Duke University in North Carolina on www.newcmldrug.com you will also find links to other CML groups............ click on CML Hope Support Group there is a woman there who posts about her daughter who had a BMT at about age 12........and another woman who posts about her young son so there are others out there that you can connect with. Best wishes to the family, C. Quote Link to comment Share on other sites More sharing options...
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