Chicago?
Hi Everyone,
After sending the note to Grace's doctor we received an invitation to come into the hospital to speak with them in person. I wasn't really into it because I felt that I was going there to have them tell me in a more politically correct way that Grace is still dying and there was nothing else they could do. Why waste my time?? But I agreed because I truly respect these people who dedicate there whole lives, facing such overwhelming odds, to trying to save the lives of peoples children. I was anxious the whole way there but after popping an Ativan (anti-anxiety med) I was able to sit though another meeting, Ian, myself and a dozen others, explaining why we will most likely be arranging our daughter's funeral sooner as apose to later. Exhausting....... The doctors did agree that Grace is not deteriorating a quickly as they thought and she may have more than the 8 weeks originally granted to us, but for us to be hoping for cure is still unrealistic. As a result we left under the agreement that as long as Grace's blood counts are good on Monday she would be given another round (21 days) of oral VP16 (chemo) and then if she continues to thrive they would at that point scan her because miracles can happen and if we are granted one this is when we would know. Crazy.... sitting around watching you 2 year old thrive while being told she's dying. You'd expect more wouldn't you?? Well we do so we again searched the internet, found a doctor in LA who has successfully treated a 3 year old with ependymoblastoma and contacted him. We heard back from his Fellow (one step down from specialist) today and explained Grace's story. She agreed to forward the info to Dr. Fisher and said there my be a phase one study in Chicago that Grace may qualify for. Again we are filled with hope!
Please continue to pray for our baby.
With Love,
Les
After sending the note to Grace's doctor we received an invitation to come into the hospital to speak with them in person. I wasn't really into it because I felt that I was going there to have them tell me in a more politically correct way that Grace is still dying and there was nothing else they could do. Why waste my time?? But I agreed because I truly respect these people who dedicate there whole lives, facing such overwhelming odds, to trying to save the lives of peoples children. I was anxious the whole way there but after popping an Ativan (anti-anxiety med) I was able to sit though another meeting, Ian, myself and a dozen others, explaining why we will most likely be arranging our daughter's funeral sooner as apose to later. Exhausting....... The doctors did agree that Grace is not deteriorating a quickly as they thought and she may have more than the 8 weeks originally granted to us, but for us to be hoping for cure is still unrealistic. As a result we left under the agreement that as long as Grace's blood counts are good on Monday she would be given another round (21 days) of oral VP16 (chemo) and then if she continues to thrive they would at that point scan her because miracles can happen and if we are granted one this is when we would know. Crazy.... sitting around watching you 2 year old thrive while being told she's dying. You'd expect more wouldn't you?? Well we do so we again searched the internet, found a doctor in LA who has successfully treated a 3 year old with ependymoblastoma and contacted him. We heard back from his Fellow (one step down from specialist) today and explained Grace's story. She agreed to forward the info to Dr. Fisher and said there my be a phase one study in Chicago that Grace may qualify for. Again we are filled with hope!
Please continue to pray for our baby.
With Love,
Les
posted by Lesley at 1:46 p.m.
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