Thursday, June 23, 2011

Jacob's poor right adrenal gland.....

Let me just say first that who ever came up with the "How's my driving?" bumper sticker on the back of trucks is an idiot. Who can jot down a number (or dial the digits!) while being ran off the road by a huge semi?! Not me. Too many semis on the road today, driving way too fast. Poor little Sally almost gets blown away when an eighteen wheeler flies by at 80+ miles per hour! Ugh. I'm so tired of the interstate!


Very glad to be home. Today was an easy trip to Shands. The reason we went isn't a light topic, but we were in and out of clinic in 45 minutes. Might be a record. We met with Dr. Islam and his senior fellow. They both did a quick exam on Jacob and asked him a few questions. Dr. Islam said they do believe the tumor is part of the adrenal gland and the adrenal gland will be removed during the surgery. He explained how an adrenalectomy is performed. Laparoscopic will be there first approach and if they can't preform the resection that way they will have to do an open surgery. He explained to Jacob that they would place the camera in through his belly button and he would use three very small incision on the right side to do their work. He said the surgery will take a little less than two hours and if done laparoscopicly the recovery time is about five days. Jacob would spend one night in the hospital. Because he will still have his left adrenal gland he would not need hormone replacements, which was a relief. I asked what would be done if the tumor ended up being a para-spinal tumor and Dr. Islam said it is clear of the spine. I forgot to ask if the tumor will be sent to pathology, but I assume it will.

As of right now Jacob will continue his Avastin treatments through the month of July. He will take the month of August off and is scheduled to have the surgery September 13.

Just to really stir things up, I spoke with Dr. Asthagiri from NIH this afternoon and he had their radiologist who specializes in endocrinology review Jacob's scans. He doesn't believe the tumor is attached to the adrenal gland at all. Dr. Asthagiri has put Jacob's scans out for their endocrinologist surgeons to review and will call me next week.

I also received an email from Dr. Brackmann today from House Ear in LA. He received the scans I mailed him last week and he agrees that the Avastin has everything stable. I sent him a request to review the CT scan of Jacob's adrenal gland as well. I'm curious to see what his radiologist and surgeons will say. I'm not sure they specialize in the abdomen area, but I'm sure they will have an opinion.

Now it's time to pack Jacob up for Boy Scout camp with hopes that he will enjoy next week, carefree of all the NF2 bullcrap he puts up with almost daily these days.

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