Wednesday, August 5, 2009

Call Back from Dr. Pincus' office

Finally Dr. Pincus' office called today and said that Dr. Pincus spoke to 2 other doctors at Shands and they all agree that Jacob should do another MRI in October and go from there. The MRI is scheduled for October 21st. I was a little upset by this phone call because I left 2 messages over the last week for Leeanne, Dr. Pincus' nurse and she hasn't returned my calls. I have more questions! I sent Dr. Pincus 2 emails - one requesting info on a trial drug called Avastin that several NF2 patients are having success with taking and the 2nd about a doctor in Washington D.C who only sees patients with NF2. Instead of one of them responding to me - they had a receptionist call and relay the above message to me with info that we already knew. (I also am bugging the oncologist, Dr. Smith's office).

So I have contacted NIH in Washington, DC myself and started the ball rolling to get Jacob enrolled in their 5 year NF2 study. (Thank you for your help Laura!) Their care for NF2 patients is supposed to be outstanding.

I am also waiting to hear from one of my mom's friends who happens to know a woman who has NF2 and is on a trial drug and is having success. This friend also had spinal surgery with good results.

Remaining hopeful!

Then there is Jacob's appt Friday...that we were supposed to have on July 17th, until they bumped us. Ugh. Hope Jacob's MRI from July 7th will show them what they need.

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