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Need Hodgins Disease Doctor Experts --Urgent!!! What is this ?

 
Post new topic   Reply to topic    Cancer Forums Forum Index -> Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum


Author
edwardw
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Joined: 10 Aug 2005
Posts: 2
PostPosted: Wed Aug 10, 2005 3:21 pm    Post subject: Need Hodgins Disease Doctor Experts --Urgent!!! Reply with quote
Hi,

This is my first post here. I have a 13 year old daughter named Katie.
She has Hodgkin's lymphoma stage, IIB, and they said it was nodular sclerosing.
We went through four rounds of chemotherapy and the cancer was dead according to the PET scan. Yet the doctors wanted to do radiation therapy on her. She had a large mass in the chest and this would damage the heart, lungs, and breasts and usually results in breast cancer 6-10 years later. So we asked for a second opinion and Katie's doctor calls in Child Protective Services. And they take Katie to force radiation treatments on her. She didn't get any treatments for 40 days. She was very healthy at the time and it seemed her immune system had taken over and she would have been fine with no more treatments. She later had what we believe to be a false positive PET scan and that was her thymus gland rebounding from the chemo. They ripped out 90% of her thymus gland. Now they have decided to do 4 more chemo, High Dose Chemo, Stem Cell, and Radiation therapy on her. Sounds like over kill to me, and we are afraid they will kill her. They put her with some doctors that are not at all experienced in Hodgkins disease. The bad part is Katie is separated from her family for 2 months now and the treatments will take at least 5 more months. How can a judge and CPS do that to a child that is suffering from cancer? She needs the support of her family.

We need to find expert doctors in Hodgkin's disease. Could you please give me their full name and address and phone number. I need to find an expert that can evaluate Katie's biopsy samples and look at her treatment plan. Has anyone been through High Dose Chemo and stem cell transplants. What was it like? I see there is about a 1 in 10 chance that this treatment may kill her. Mad

We need experts on Hodgkins to contact so that we can try to get Katie back home. People can call the Texas Governor at 512-463-2000 and say return Katie Wernecke back to her parents, parents have the right to make the medical decisions for their children. For the full story go to www.prayforkatie.blogspot.com.
_________________
www.prayforkatie.blogspot.com
www.compassionchildren.org
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