Note to Grace's Doctor
Hi Everyone,
My sleeping pill is not working tonight. Thought I'd share a note with you that I Emailed to Grace's head doc. Not sure if I have a point or if I should just be doubling up on my meds and accepting fate. Grace was absolutely wonderful today! Here's my note:
Dr. Buffet,
Tonight my mind is racing with the possibility that maybe we have not exhausted all options with regards to Grace’s care. I’m sure naturally all parents of terminally ill children must experience denial of the conclusion that has been dictated to them by poor fate, however as Grace continues to thrive 3 weeks post our discovery of such overwhelming disease, I can’t help but question whether we know for sure that our decision not to continue to fight is sound. In the past Ian and I have trusted and then been disappointed. As you are aware we were told in May 2005 Grace’s tumour was benign and nothing to be overly concerned about and then devastated in October when overwhelming disease was discovered. We were also assured of a benign second biopsy that 6 days later we were then told was malignant. This E mail is not intended to rehash area’s of Grace’s care that could have been more ideal, it is to explain why, based on 1 scan, we are unable to grip the conclusion that’s been guaranteed to us by your team. How do we know that the oral VP16 has not been effective to the point of making surgery once again an option? If surgery becomes an option, how do we know she is unable to handle high dose chemo, at least until radiation could be possible? If this tumour is so rare and so few doctors have experience with it, how do you know this is the time to stop fighting? Please do not only read this Email as a desperate plea from a mom wishing to save her baby, but please read it and truly consider whether every stone has been turned over and we are with out doubt doing the right thing. As Ian and I watched Grace shout “look at me, look at me everybody” as she attempted to stand on her head for the first time tonight, you can imagine why we are unable to believe that she is dying. We are willing to experiment. Please consider further treatment for our daughter.
Respectfully,
Lesley Stanley
My sleeping pill is not working tonight. Thought I'd share a note with you that I Emailed to Grace's head doc. Not sure if I have a point or if I should just be doubling up on my meds and accepting fate. Grace was absolutely wonderful today! Here's my note:
Dr. Buffet,
Tonight my mind is racing with the possibility that maybe we have not exhausted all options with regards to Grace’s care. I’m sure naturally all parents of terminally ill children must experience denial of the conclusion that has been dictated to them by poor fate, however as Grace continues to thrive 3 weeks post our discovery of such overwhelming disease, I can’t help but question whether we know for sure that our decision not to continue to fight is sound. In the past Ian and I have trusted and then been disappointed. As you are aware we were told in May 2005 Grace’s tumour was benign and nothing to be overly concerned about and then devastated in October when overwhelming disease was discovered. We were also assured of a benign second biopsy that 6 days later we were then told was malignant. This E mail is not intended to rehash area’s of Grace’s care that could have been more ideal, it is to explain why, based on 1 scan, we are unable to grip the conclusion that’s been guaranteed to us by your team. How do we know that the oral VP16 has not been effective to the point of making surgery once again an option? If surgery becomes an option, how do we know she is unable to handle high dose chemo, at least until radiation could be possible? If this tumour is so rare and so few doctors have experience with it, how do you know this is the time to stop fighting? Please do not only read this Email as a desperate plea from a mom wishing to save her baby, but please read it and truly consider whether every stone has been turned over and we are with out doubt doing the right thing. As Ian and I watched Grace shout “look at me, look at me everybody” as she attempted to stand on her head for the first time tonight, you can imagine why we are unable to believe that she is dying. We are willing to experiment. Please consider further treatment for our daughter.
Respectfully,
Lesley Stanley
posted by Lesley at 12:50 a.m.
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