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mvermeulen
Posts: 1
Joined: Jan 2004

Hi My name is Martie Vermeulen. I am not a cancer survivor but the daugther of someone living with CML. My mom was diagnosed in Feb 2003. Two months later she received a stem cell transplant. The cancer or bad sells was reduced drastically. My mom was so brave and good throughout chemo. All was well until November 2003 when everything changed. My mom had flu like symtoms and didn't eat for about two weeks. After some serious persuasion my mom agreed to be taken to hospital. My mom was admitted immediately. My dad was in Mocambique on business at the time, he came back home as soon as he could. Two days after being admitted to hospital my mom could not walk, her whole body was shaking uncontrollably. She could no longer speak, just made sounds. Two weeks later her eyes closed. The doctors gave her antibiotics and did every test they thought possible. Until today they cannot tell us what is wrong. It has been 6 weeks and we still dont know. The doctors say that the leukemia is under control and this is not causing my mom to be sick. My moms eyes are permanently closed, she lays in a bed and only rolls from side to side, we feed her liquids as she cannot chew. She has lost so much weight. Please help - if anyone has gone through something like this - please let me know. All the doctors say is that she has some virus - what virus they cannot say. My mom has gone for MRI scans, lumberpuch, etc. Please if anyone has some info let me have it.

jcl
Posts: 1
Joined: Jan 2004

Hi Marti my name is Joanne and my husband went through a stem cell transplant in Sept of 2002 and in Feb of 2003 he came down with an infection that started in his lungs and mooved to his brain. He lost all periferal vision in the right eye and was vomiting for a week. He ended up in the hospital for about one month and on all kind of medicine. Then in June of 2003 his adrenal gland quit working and he lost all his appetite for three to four months. and then in Sept he had seizures at home and ended up in the hospital from Sept. to the middle of Dec. While he was there he ended up not being able to walk. They did all kind of tests and they told me that it was all because he missed his meds. I don't beleive them. I think it was because he quit eating. Just a little tip they may want to check the brain.

moondancer830
Posts: 13
Joined: Jan 2004

I don't know anything about stem cell transplants- I received a bone marrow transplant- but if the two are anything alike it sounds like graff vs. host....

get a second opinion.

Good Luck.

One day at a time.

You are in my prayers.

cathyking
Posts: 4
Joined: Feb 2004

Hi Martie. Your letter really got to me. My nephew just went through almost the same thing. He ended up on life support and some doctor recognized that he might possibly have myasthenia gravis...ask your mom's doctors if they have tested her for this. My nephew tested positive and is now home, thank God. I am not a doctor, but it may not hurt to ask! Good luck, Martie and stay strong.

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