Scheduled for surgery...

Once again, so sorry for the late entry. Life has been somewhat of a roller coaster ride lately and I want off!

My most recent doctor appointments have shown many serious increases in tumor & cyst size. Once again I find myself requiring immediate action. I have been working on developing a plan to follow through with the surgeries in order of priority. My optic nerve tumor continues to grow and is causing further decrease in my vision. I can no longer see the large "E" on the eye chart. Even with corrective glasses, I am considered legally blind. There are still no treatments or chemo therapies avalable at this time to help shrink or stop my tumor from growing. They feel a new drug won't be available for at least 9-12 months. Please pray for something sooner!

As for my abdominal scan, my pancreas has been totally replaced by cysts and continues to cause digestive problems, e.g. nausea and malabsorption of nutrients. Therefore, I have a decrease in my energy level and have lost weight. Last week I started on pancreatic enzymes to help with my digestion and absorption. My kidneys are also a mess. I have a total of one kidney remaining - 2/3 on the left and 1/3 on the right. My right kidney is only functioning at 15% of the total and my left picks up the other 85%. Unfortunately, it is the left kidney they want to remove due to large cystic masses and renal cell in that area. I am hoping there is some possible way they can save a portion of that kidney so I can avoid dialysis or a transplant. I see my local kidney surgeon tomorrow and am awaiting opinions from both NIH and MD Anderson.

My biggest and most critical dilemma lies in my brain stem and upper cervical spine. There now are two small tumors located at the base of my brainstem (the medulla - the worst spot for it to be). Attached to one of the tumors is a large cyst, about 20 times the size of the tumor, which is causing me many problems. About six weeks ago, I started experiencing numbness down my whole leftside, from my shoulder to my foot, as well as numbness and tingling in both hands. I've also noticed an increase in headaches, nausea and loss of balance. I've completed three neurosurgical opinions and have chosen to have surgery at MD Anderson in Houston. It is scheduled for November 11th, although I'll need to go earlier for testing. The surgery should last a minimum of eight hours and will require a two week hospital stay. One reason I chose this hospital is that I have family in the area, who can stay with me once Steve needs to return home to the kids. The main reason I chose them is that I was extrememly impressed by the doctor, not only his expertise, but also his wonderful bedside manner. There is a 5-8% risk of permanent neurologic damage with this procedure. However, if I do nothing, there is a 100% chance of neurologic damage/paralysis.

Start praying now & I'll continue to update you as things change. Lately, that has been daily! Also, please add my brother, Steve, to your prayer list. He had brain surgery last Wednesday and remains in neuro-intensive care with multiple complications and is still semi-comatose.

Thank you again to Nancy for being my travel buddy (and candlelight dinner buddy)! I couldn't have found my way without you...

Kim