THE UPDATE

We met with Dr. Omid Hamid at the Angeles Clinic today, thanks to the introduction of  my childhood friend, Rachel Humphrey, who continues her amazing career at the top levels of Immuno-Oncology research in the world’s leading companies. Dr. Hamid was fully engaged in my case, took time with us, and, though he was clear that we were off the beaten path and we didn’t have trial data to work from, there were good reasons to pursue an experimental treatment (“off-label”).

Recall, without this option, in my current situation, there are very few effective treatments and the outcomes are not good.

Now the HOPE. Even though there are no trials with the new classes of drugs for my specific current diagnosis, there are some instances in other cases that show that there is reason to believe that these drugs could be effective in treating my condition. The mechanism they use lets your own (defective) immune system work against the bad cells, and that works across the blood-brain barrier as well. But just because it might help, doesn’t mean that the drug could be made available to me. Who would make the decision? Plan the treatment? Take me under their wing? Work with the pharma company?

While we need to work through how to transition over the next few weeks from the intra-spinal treatments and steroids I’ve been receiving to the new experimental treatment, it looks like I will be able to get access to the treatment and be a very interesting test case for all involved.  There are still question marks, issues of timing and transition, but this truly seems to be the best course of action available right now. And, through various twists of time and fate, it looks like I will get a chance.

THE MUSING

My father, Barrie Hannel, was one of Rachel’s early teachers. He taught Biology. A few years ago, Rachel relayed this story:

“Once he asked me to sit on the bookshelf in the back of the room.  Then he  gave me numbers to memorize.  First he gave me his social security number (sorry, Cliff and Allison, I can’t remember what it is now!),  then his phone number, then his birthday (I remember this clearly!) and with each addition, he asked me to repeat them all back from the beginning.  I don’t remember the point he was trying to make and, unfortunately, I can’t remember if he asked anyone else to do it but I do remember feeling deep affection for him at that moment.  He made me feel smart and capable.  When we were done testing to see how many numbers I could stuff into my head before I started to get them wrong, I sat back down in my chair and was happy.This may seem silly now, and perhaps it is,but the best part of a good teacher is helping us feel good about us. Goodness knows, there are so many reasons to feel inadequate when we’re young!!  Somehow, by proving that I could stuff lots of seemingly disconnected numbers in my head, I concluded I must be smart.  Silly, huh?

No, Rachel, not silly at all! And to think the path from nursery and elementary school in New York, to you having my Dad as a teacher after we moved out west, to me getting this chance for another win against this disease that won’t leave me alone. It is overwhelming.

WHATEVER

Wow. I don’t even know what to feel right now. I needed this. I’m digesting. I’ll fill you in when I have more details on how the next steps roll out.