Monday, September 3, 2012

A Door to a Door

Yesterday we met with Dr. G.,  the ALS doctor, we came to see. Come to find out he has little to do with the stem cell therapy trial other than conducting the initial exam to qualify one for the trial. We did that and he said we qualify for at least the next three months (he explained that patients often decline so quickly that data is often only good for 3 months). He assumes the next wave of the trial will begin no sooner than three months from now because the company whose technology is being tested is negotiating with the Israeli Ministry of Health to accelerate the trial based on initial safety data--most likely they are trying to increase trial dosage beyond initial plans and need approval for that. Dr K is the head doctor of the trial and is the MS doctor. He is very busy and hard to get in to see. He has a year wait list. But the ALS doctor said for us to try and see Dr. K before we leave to find out more about the stem cell therapy as well as how to apply for the "compassionate" treatment, meaning out of trial treatment. The ALS doc sent us to the international patient services who said it is nearly impossible to get an appointment to see Dr K. She then picked up and dialed his office 4 times in a row, saying each time, "see he doesn't pick up." The last time he picked up. (Surpise!)Then they continued in a very heated conversation. Israeli's are VERY direct. Even the ALS doctor said, if you get a no, it doesn't mean no like it does in the United States. We have heard this again and again. Be direct, tell them you will not accept a no. This doesn't run in my personality, I am more of a non-confrontational person, so its more difficult for me. I usually cry after confrontation. :) Seth, having to work in business and negotiation, is much better than I. So after the International Patient Service lady got off the phone with Dr K., she picked up the phone and called the ALS doctor and told him, since he had told us to get ahold of Dr. K. that he should talk to him and help us get an appointment. Again, a seemly heated conversation in Hebrew. Seth and I just sat there and smiled, both because of her boldness and the dramatic presentation (even though it is normal to them). After she hung up, she said, to go tomorrow and try and get an appointment by talking to his secretary and sitting in his waiting room until he sees you. She expressed the difficultly of getting into seeing him and how discouraging the long list of emails are to her. "BUT," she said,"You are here, so go make him see you!" We came back to our hotel room. Really exhausted. A bit later Seth received and email from the ALS doctor saying that she spoke with Dr K and that we can come into tomorrow between 10-11 a.m. to be able to see Dr K. No less than a miracle. So now we will see. For those who have been waiting for over a year to see this man, we apologize for jumping in line, but we are becoming Israeli- a little more forward and direct. 
Its 4:30 a.m. and I am wide awake. Nervous again for today, but realizing again and again that we are NOT in charge. That when the impossible comes, sometimes a door opens or an awesome advocate in the International Patient service office appears. If we put our best efforts forward, the rest will be taken care of. The details are more than I can write. But there is the short of the story. 
I will admit my heart is so torn. I keep trying to imagine myself here with my little family and it is very challenging for me. I miss my children desperately.  Yet, I want to help Seth, give him an opportunity for his body to heal. Seth reminded me again that all will be taken care of and I believe this. So we will watch and pray and join you all in prayer as we move forward one step at a time. Thank you for all your prayers and support. There have been times when we are sure that it is your prayers that have carried us through. Thank you, thank you!


  1. You will be in my prayers. Keep putting your right feet forward!

  2. amy, love the updates so much. thank you. you are in our prayers and we are thinking about you so much while you are there. please keep the updates coming when you can. i can't imagine your exhaustion on top of the jet lag! phew!!!