Wednesday, July 11, 2012

I wonder if I haven't prayed hard enough, long enough, often enough or said the right words. I was wrong about how I would feel if we were given bad news today. I write this somberly.

We spent an hour today with Dr. Asthagiri. Due to the fact that I am emotionally exhausted I will keep this very short and to the point.

Jacob's tumors have continued to grow on the Afinitor. His right VS is 3mm larger and the left VS is 1.5mm larger. His C7 tumor that has been of huge concern has grown and is out of room. We don't have the choice to wait any more. It has to be removed. The tumor a few levels below the C7 tumor has substantially grown as well and is now compressing Jacob's cord in the other direction. His spinal cord looks like a "S" right now. It will be removed at the same time. Jacob will be having them both removed in August. Probably the week before his 16th birthday. Happy sweet 16. I knew it was coming, that Jacob was running out of time, I guess I was just hoping for a miracle.
Once again we were reminded that we have to decide what to do about the right we sacrifice Jacob's hearing in the right side for facial nerve preservation?

Going to concentrate on getting Jac through spinal surgery first.

What the heck am I going to do with $14,000.00 worth of medication?

I will write more later

1 comment:

  1. wow, Tammy I am in tears for you, for Jacob, for our own son and all the other affected by nf2. Does this roller coaster never end? I have faith that all this pain & suffering is in God's plan but I sure wish it was easier. Sending you lots of love. If anything nf2 has taught me how precious every minute is & I know you all know that to!