The latest...

I apologize for the delay in this update. I have been patiently awaiting news, as well as further plans.

Upon returning from NIH, Dr. Meyerle (the eye Dr. at NIH) highly recommended that I do further laser treatment with my eye doc here - not to treat the optic nerve tumor, but to treat the peripheral retinal tumors. I did this on the Monday I returned (3/10). My local doctor was somewhat concerned because there was still bleeding and swelling. Still, he followed their recommendations, although he was worried I may have distorted vision again. So far, so good, due to the steroid pills and drops he gave me. My only concern is that I still see many floaters, as well as the previous blind spots - which once again is causing headaches, dizziness & nausea.

I have finally received most of my records from NIH & thankfully, my brain and spine are very stable at this time. My kidneys have increased tumor growth bilaterally, yet we will just continue to watch them until they grow larger. My pancreatic cysts have doubled in size in the past two years, which is probably an additional reason for my increased nausea. These cysts are benign & not dangerous unless they become solid. My tumors are ALL benign except for my issues with cystic changes in the kidney and pancreas, if and when they should become solid. Some tumors in my kidneys have become solid, but they are too small to do surgery at this time. My kidney function is already fair to poor, so I don't want to risk losing any more function by operating at this time.

My heart is normal! Yippee - there is one normal part of me : )

Another thing I have learned is that I was not rejected from the study due to my tumors (or changes in them). It was more due to the fact that it is not yet proven if this drug will even work on optic nerve lesions. They feel that it is more of a risk for me to take a toxic drug with all of my other issues when there may be no benefit. If, on the other hand, they find this drug to be beneficial, I will then be reconsidered for the trial. My search continues for other options. There may possibly be something opening at MD Anderson in Texas, but the Dr. I need to speak with is currently out of the country. Dr. Meyerle is hopefully going to contact this Dr. about my situation and keep me in the loop.

Everyone asks if there is anything I need. The only thing I need is for you to all keep praying that my vision will not decrease while I wait for a treatment...

I am looking forward to the nice spring weather! If nothing else, that should make us all feel a little better : ) I'm still continuing my nutrition kick. If any of you have any other alternative ideas, I am open for suggestions! My "life story" is now in progress and will be "published" on my blog soon.

Love, Kim