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Re: Carrie~~

March 16 2009 at 4:27 PM
carrie  (no login)

Response to Carrie~~


Thankyou so much Liz. It is so good to hear from you. We would love any ideas you could give us. Celeste's bone marrow transplant is going to be in june as long as she stays well. If she gets really sick then they will move the transplant up. We found out that she has a defect in the perpherin of her bone marrow so she won't be able to use her own bone marrow. Even if she didn't have the still's disease she would still need the bone marrow transplant. The oncologist said he really feels that it is the defect in her bone marrow that is causing the still's. Once she has the transplant she will never have still's disease again. We are so nervous about the actual transplant but can't wait for her to be cured. My self, my husband,and our son Austin are going to Dallas Children's tomorrow to be tested to see if any of us are a match. I am praying with all my heart that our son is a match because the doc says that it will be like she is getting her own bone marrow. Celeste has adjusted to the fact that she is going to lose her hair but would like to get a wig or some cool head coverings. We are going to set up a web page that everyone can go to that will have pics,updates and possibely video through out the process from getting us tested for match to comming home from the hospital. I am hoping to have that up in the next week or two.

thanks again liz

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  • Carrie, - liz on Mar 28, 2009, 1:42 PM
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