Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 Kari, I am so regretful of your situation. I am much older and face the same " future " for my daughter who is 27. This is tough isn't it? The one in the spine is so important for her functioning. Anne has several there too. We are watchful waiting because we have her on a trial med. to see if some fluke of science it will work and deter further growth of themultiple tumors she has. She has had 3 spine surgeries and hinging on another if she is fortunate and we can wait to see if the meds work. Because my daughter is developmentally delayed, she relies on me totally and will for the most part do what her parents say. It is just a real tough situation no matter how we look at it. I await your updated Bio and think of you and your daughter. Love, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 Vicki, If you dont mind me asking what medication is your daughter taking? And how long has she been taking it? Thanks, in ny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 Vicki, If you dont mind me asking what medication is your daughter taking? And how long has she been taking it? Thanks, in ny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 , Anne is taking Thalomid and has only taken it for a little more than 3 weeks. She has started on a very low dosage to begin to acclimate her body. Anne has multiple tumors all over her body and they are mostly schwannomas and has had some plexiform tumors removed. She's had 11 surgeries to date and the doctors tell us of a downhill prognosis with each further one. Nothing new I guess. We've been in touch with Dr. Mia and she felt it worthwhile to try Anne on Thalomid as she has been using it on some patients like Anne at MGH. An oncologist and neurologist are right now monitoring Anne with watchdog Mom on all of them. Hope this answers your question. Vicki Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.