How could anyone possibly look at that perfect angel face and not be blinded by her beauty? How could you look into her eyes and not see a shining light, brighter than the moon in the night sky? How could anyone hear her laughter and not want to dance to the glorious sound of it? How could someone ever give up on her?
In a heartbreaking meeting last week, Keeley's Neurosurgeon, the woman that performed her hemispherectomy, gave up. Keeley's seizures are still clouding her world, and we consulted her Neurosurgeon, for results of a recent MRI scan, with HOPE that Keeley would have options, some kind of a chance at seizure reduction or better still, seizure freedom. Keeley has a small portion of remnant tissue in the left frontal area, that was spared during her hemi, as the surgeon found that there didn't appear to be a corpus callosum in this area, and deemed it too dangerous to proceed, given that Keeley's operation had been going for 17 horrific hours. Her EEG shows interictal patterns in this area when seizures aren't recorded, and her seizure types are characteristic of frontal lobe epilepsy. All of this gave us the smallest bit of hope that maybe this tissue could be removed, and give Keeley a chance at a better life. The Neurosurgeon's response to this suggestion "WHY BOTHER". She went on to say that she believes that Keeley's prognosis is very poor, that she is severely impaired, and that she will not develop or progress any further in her life. If Keeley's seizures aren't life threatening, then there is no point doing any further surgery.
To say I was angry would be the understatement of the year. I was enraged, and more so, absolutely heartbroken. I could not believe that someone would just give up on Keeley like that. That she wouldn't even give her a chance. I could not believe that I had to sit there and try to prove my daughter's worth.
I am not even going to start on all the reasons why we should 'bother' because I don't need to. She is a human being. Of course we should bother.
Along this journey I have found that losing hope is only too easy, holding on to hope, on the other hand, is a much harder thing to do. But we must not ever lose hope. We must never give up. So for now, I am holding HOPE in my heart, and am continuing to search for answers..........
Oh, Sister. I am holding you tonight in my thoughts and prayers. May you feel the warmth and love I am sending you as you ceaselessly hope for your daughter and her future. I love you dear friend.
ReplyDeleteI know it is easier said than done but Mandy, we've got to get Keels to the US to have a second opinion. I just know in my heart that there is something that one of these brilliant doctors can AND will do for her over here. I have the upmost faith that Keeley can have a reduction in seizures and that she will progress far beyond where she is now. She is just too beautiful and smart to give up on. We have to find a way and that's just that. Love you sister!!!
ReplyDeleteJen