Neurofibromatosis (NF) Awareness Month - Day 28 This past week, I sat with Connors doctor & we looked through his most recent MRI. The most problematic tumor is the one behind his right orbit & extending down into his face. I thought I was going to throw up right there on the floor. The tumor is around the carotid artery, it is near the left optic nerve, it is right next to the brain stem, it is messing around with swallowing muscles and on & on. Why dont we have it removed? A question I am often asked. Well, there are many reasons. This wouldnt be one brain surgery. It would be at least 2 and then there would be the reconstruction surgeries. THEN it would probably grow back. These are not thoughts you want to mull over. We are in a holding pattern. Waiting until symptoms warrant surgeries. This is not a waiting game you want to play. This is not the only tumor our child has. There are 2 tumors on his hearing nerves that will need to be addressed one day. That means more brain surgeries & total hearing loss. Even that does not end the list of his tumors. These are not easy things to have floating in your future. Its not easy for parents, families & especially not for those with NF. Our hope lies in God who promises a hope and a future. Last night, I could hardly sleep. I woke up at 4am thinking of a young man who will have brain surgery to remove a trigeminal nerve tumor next week. I thought of a young woman who was taken to the hospital yesterday,leaking cerebral spinal fluid after a recent brain surgery. I though of a young girl who suffers from pain every day due to spinal tumors. There are so many more that come in & out of my thoughts, Jacob, Summer, Hunter, Bea, Reggie, Bailey, Damien, Tera, Johnna, Cameron, Sarah and many many more. We must find a cure! We must find a treatment that stops NF! #endNF #nevergiveup #nf2sucks
Posted on: Wed, 28 May 2014 19:31:09 +0000
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