Thursday, September 20, 2012're going...

Hi all, this is actually Seth. So many of you have mentioned how influential Amy's blog has been, that I've started nagging her to keep posting. I realized that her main reason for not posting is because she's taking care of me and the kids, so I'm going to ghost write this entry as if I where goes...see if you can tell the difference between authors:

After meeting with Oz, we were on cloud-nine, and found ourselves with a little unexpected time for site-seeing. We packed our bags and Seth, my powerfully attractive husband, negotiated a rate at a hotel nearer the old city. Our friend Pini gave us a lift to the hotel. We dropped off our bags and headed to Damascus Gate.  Old Jerusalem is an amazing place where little changes. It brought back many memories from 16 years before when Seth, a powerfully attractive 21 year-old, and I had just met and got acquainted while wandering the markets and biblical sites.

 Here are the pictures of the day in Jerusalem. Commentary by Amy

                    Damascus Gate                                                                The market inside Damascus Gate

Seth in front of one of many (many, many) archeological sites. Note the arches.

This is in the Jewish Quarter of the Old City. Each Quarter is very different and distinct. 

Us after eating an awesome schwarma for lunch. 

The street band next to us. They may look a bit different than other street bands, but they sounded great.

Again the arches. So beautiful as we walked back.

Seth coming out of the market inside Damascus Gate.

The overlook on the city of Jerusalem. We are up by the United Nations headquarters. 

 Here's the view.
 And this was what I had to eat for dinner before I flew home. From the Waffle House. Yum. 

Back to Seth's commentary:

After wandering the city, we arranged to meet Pini again and got a lift to Arnona, a newer neighborhood SW of the old city where Seth, in his ingenuitive and powerfully-attractive way, had arranged to see a number of potential rental apartments. We had time to see two apartments, one of which we loved, before being dropped off for dinner. During dinner, we heard from our 'Airline Angel' (thanks Greg!) that our best shot at standby flights was that night! We hurried back to our hotel to get our bags. I've never been so powerfully-attracted to Seth as when he attractively-negotiated a refund for the room we would never get to use. One hour later we were in Pini's cab on our way to the airport. This good man dropped us off at the curb, embracing us individually and wishing us God's-speed. He begrudgingly accepted payment for the first time in days, saying that he felt guilty doing so. He said he would bring a big enough car for the whole family when we return.

The trip home was miraculously eventless--between the two of us, we flew standby on 14 flight segments never missing a single flight (thanks again Greg!). I dropped Seth, oooh THAT SETH,  off in Boston and returned to the kids in Salt Lake. Seth spent 5 days in Boston where he met with doctors at MGH, went to church with the Romney's, and met one of his hero's, Clayton Christensen. Many thanks to our good friends the Kaps for housing, feeding, and transporting my powerfully-attractive husband! After Seth, tired yet powerfully-attractive, arrived in Salt Lake, we made arrangements, said goodbye to family, and headed for Seattle on Friday morning. Thirteen hours, 3 stops, and one RedBull/RockStar cocktail later, we arrived at our home at 1am.  Both Elie and Sam were able to play in soccer games the next day, and all but Jacob started school on Monday.

Based on the miracles we saw while in Israel, we feel like we need to move forward in that direction. We are tentatively planning a move there as soon as we can make flight, housing, passport, and schooling arrangements....MORE BLOG ENTRIES TO COME!

Wednesday, September 5, 2012


Six years ago Seth went to interview with Microsoft. He did his homework and found out about the interviewing process. He would have five interviews, each interview getting him closer to the job offer. He was told if he made it to that last interview, #5, that it meant he wold be offered the job. We started to call that last interview 'Oz'. We he called me after the interview I asked him if he had met Oz? He had and was offered the position. As many of you know, it was a defining moment in life as Seth's job was being dissovled at Intel. He took his severance and it signing bonus the same day. Another miracle in our life as we watch God watch over us. 

So yesterday after meeting with the doctor that is impossible to meet, and leaving that meeting with the possibility of being accepted into the trial greatly increased, we sat in a little cafe, and I told Seth, "We met Oz." Then we both began to cry. 

This is Njoude. We stopped by this morning to tell her about the appointment and take her picture.

Written Tuesday By Seth:
We showed up at 10am at the international patient's office to work with our freind, Njoude, to schedule our appt with dr. Karussis. She arrived at 10:10 and smiled with a questioning look when she saw us waiting. When we showed her the email from dr Gotkine, she looked up at us with amazement and said "We win?"  She then dialed dr K's office and spoke to his secretary, explaining the email. She hung up the phone and said we were to be at dr K's office in 30 mins. She also said "Maybe he agreed to see you because there is something he can do for you?" and, smiling while shrugging, said "We can only charge for visits after" We thanked her and told her we'd be back.

The visit itself went incredibly well! What we expected to be a confrontational meeting was anything but. After some initial questions about my history, a brief exam, and after reviewing Gotkine's notes, Dr. Karussis agreed that I am a strong candidate for the trial. He explained the difference between embryonic, mesenchymal, and partially-differentiated stem cells like the NurOwn cells used in the trial, and laid out my options in three buckets:

NurOwn trial:
Following the release of positive initial safety data 2 months ago, study size and parameters are being renegotiated between BrainStorm, the Israeli Ministry of Health, and Hadassah. While this is being negotiated, Dr. K will take my case to the Hadassah selection committee and see if they agree I am a good fit. If they agree; if we move to Israel; and if there is a place in the study for me following negotiations (6 of 12 previously identified spots have been offered to other patients), I will be invited to participate. Treatment would take 4-6 months and would be limited to one treatment. There would be no cost to the patient.

NurOwn 'compassionate use' treatment:
Though the Israel Ministry of Health initially approved only three spots for 'CU', four individuals have been treated outside of the trial. Based on preliminary safety data, Dr. K is recommending that the IMoH expand the number of spots available for NurOwn treatment outside the trial. Brainstorm may prefer to limit the number of CU treatments due to the potentially negative impact on their pending FDA application. CU treatment would be less time intensive than treatment within the trial (taking 1-2 months), and would not necessarily be limited to one treatment. The patient may be asked to bare treatment costs if Brainstorm is not willing to pay.

Mesenchymal (MSC) stem cell treatment
Dr. K claims some success in treating ALS with undifferentiated stem cells since 2006 (one patient has had no progression in 2 years due to multiple treatments). This would be the least time-consuming of the three options, but also carries unique risk--there have been cases of undifferentiated stem cells behaving badly after injection and causing cancer. The patient bares the cost of only some lab costs.  

Of the three options, the compassionate use option seems most attractive due to its time requirements, and option for multiple treatments. This option depends on the Ministry of Health and Brainstorm agreeing on something that Brainstorm might be hesitant to agree to. Dr. K encouraged us to use what connection we have with BraunStorm to influence these decisions. Again, we will proceed one step at a time. We give thanks for these miraculous turn of events and are reminded to be at peace not knowing where they will lead us. 

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!

Sunday, September 2, 2012

Some Extra Prayers

This is the sunset from out window at the Hadassah Hospital Hotel in Ein Kerem. Ein Kerem is a little valley and village believe to be the place was were Elizabeth, mother of John the Baptist, and Mary met one another when both were pregnant. Also believe to be where John the Baptist was born. Its is beautiful and quiet here.

Yesterday we struggled with jet lag throughout the day. We studied in the morning and then visited the International Patient Services. The lady in the office was the first very compassionate person we have come in contact with. It was refreshing. She probably understood a bit of our situation. We also talked with a  private company that help foreigners contact and receive services at Hadassah. Then we came back to the hotel room and fell asleep- again. Its like we are on the opposite time schedule or something. Oh wait, we are. :)
We got up later from our naps than we had hoped, and didn't feel so hot, but decided to go out to eat at one of the neighborhoods we had heard about. It was in what they call the German Colony, originally established by the Germans, but now a very multi-cultural area. The cab driver was very nice and asked us why we were here and after telling him that we would like to move here, he began pointing out neighborhoods that we shouldn't move into and some that we should. When he dropped us off on the main street of the German Colony he told us to call him and he will show us the neighbor he lives in and  others, for free.
We then walked the main street of the German Colony,  Emek Refaim Street. We stopped into the community center. We noticed how many families there were walking together and eating out. It was the first time I saw children out and about. It made me happy. We stopped and ate falafel (they are seriously good) and talked with the family eating next to us about the neighborhood. They said it was nice but too expensive.  Probably true. We grabbed a gelato and then called the cab driver who had dropped us off. This is the crazy awesome part is---His name is Pini. When we got in the cab, Pini, invited us to his home to see an Israel home. We accepted. He drove us through some more neighborhoods and into a quiet little neighborhood where he lived. His is from Iran but has lived here for 30 years. He says he is old, "more than 60", but as you can see in the picture below, he doesn't look very old. 

 He invited us for coffee and tea, but we told him we don't drink them because of our religion. He accepted that and got us some water. He had a nice apartment that he had just finished remodeling.  He introduced us to his son and his niece and the 5 of us sat on the porch and talked for about an hour. They asked us why were here. We explained and they said they too will pray for us. We talked about all the of the small miracles that had brought us here, including the Israel family that rented our home and helped us with some phone calls in Hebrew. Pini's son said, "It is what we call 'casting your bread on the water."He explained that it meant you seek to do good and good will come back to you in one way or another. We talked politics, work, and Israel. I asked a lot of questions about if we moved here. They were so kind and it was so nice to actually talk to those who live here. They told us to walk out of our door with "our right foot first" today when going to our appointment- for good luck. They said they would also be praying for us to be accepted into the trial. We will add the Iranians' prayers to the list. This little experience was a gift to us. It reminded me that we must always open our minds and hearts to those around us. And that no matter the language or form, God hears all of his children's prayers.

Pini's Son, Eyal and Niece, Liat

Saturday, September 1, 2012

Shabbat & Arches

Being at the Jerusalem Center was surreal. I can't believe it was 16 years ago that Seth I and were here. The students looked SO young and so single. I guess that's what we were. The students just arrived this week, and as the students shared their excitement of being there, I thought to myself- You have no idea. I was excited for them, how incredible their experience will be. It changed my life and I am sure will it will be the same for them. 

These arches are a special place for us. Sixteen years ago, we got to know each other while spending time sitting in the arches and having long talks about life, our dreams, and our testimony. We found another arch at the Sea of Galilee. Since then we have noticed, sought out, followed some incredible arches. But the first arch was here. 

The view of the Old City. Not much has changed. This is the view from the chapel where we sat today and took the sacrament. The view is helpful in remembering what we are supposed to be focusing on.

Another view of the majestic arches.

 After leaving the BYU Jerusalem Center, we ate on the streets in front of Damascus Gate. It was loud, noisy, dirty, and smelly. I didn't finish my shwarma because I couldn't get over the smell. But right around the corner behind a tall wall, is the sacred Garden Tomb. You step out of the busy streets into a quiet garden and you feel the sacredness of this place. 
 Seth and I sat there for quite some time and talked. We've had to grow up quite a bit in the last 16 years. A mission, 3 college degrees, 2 houses, 3 moves, and four kids later. And here we are again.We could have never imagined our lives those many years ago. We could have never imagined the joy, sweat, tears, and love that we have enjoyed. I will be forever grateful for the chance I had to go to Holy Land in my youth, not only because I would meet and 3 years later marry Seth, but also for the sacred experiences that I had that give me daily strength to face the challenges ahead. I need not search for the answers of who I am, or who God is, or if He knows me. I was given this knowledge long ago. And with this knowledge I have been shown again and again that He will lead us, and we don't need to doubt He won't do it again. 

Back to the Wall

Still trying to decide what time we are supposed to be following, we took the morning slowly.  I fell back asleep while Seth emailed some contacts. We had an awesome breakfast at the hotel. It was full of fruits, vegetables, breads, and cheese. It was heavenly (every trip is determined by its good food-right?). Just before noon, we went over to the hospital to try and meet with the international patient services, but it was the weekend to them (Friday/Saturday are their weekend), so they were closed. We walked through the hospital and found the neurology department. It's not far from where we are. 
We came back and Seth slept for a bit. We decided to go into the Old City watch the ushering of the sabbath at the Wailing Wall. This memory is an unforgettable one from 16 years ago. I was so excited to go be a part of this old tradition again. On our way into the Old City was asked the cab driver if there would be any food available in the Old City. Because it was the almost Shabbat, the restaurants would be closed, except for in East Jerusalem, the Arab sector. So he changed direction, and dropped us off at an open market street, Agrippa Street. It reminded me of many open markets I have been throughout the world. 

But we found food. No meat available. We had some awesome falafel! Apparently they were the "Best Falafel" in town. 

Here is our most famous falafel maker! I will be honest, it was way better than I remember.

We then made our way to the Western Wall. I was super excited to return. 

Even if I am a bit chubbier. I was glad to be there.

 We got there early before the sunset. We were hoping to see the Yeshiva students dance down to the wall. They never came. The military behind Seth in the picture below, joined together and danced into the men's section. 

Here is after the sun had set. There were many different sects -from Hassidic Jews in full orthodox dress to military and casually dressed men. The women's side, although smaller, was also crowded. It was very interesting to watch and hear them sing and dance. I remember being 20 years old and awestruck at these people. Their lifestyle was far from my realty and I became very interested in their beliefs and traditions. Not all make sense to me, but I have a great respect for discipline. 

The night began to fall on the old city. To give you a perspective on how close things are put together, you can see the Dome of the Rock behind the Wailing Wall on the right side of the picture. Like the bellman at the front desk said, "Every rock is claimed by at least 3 different religions- Catholic, Jewish, and Muslim, and for this reason we have a problem." After being here, and studying here, I too hold this place holy.

As we walked away from the Western Wall we were give the gift of watching the moon rise over the walls of the city. It was beautiful. 


Hello My Dear Friends and Family. I have yet to catch up on my blog. I need to finish recording the last month of our families stay in Hawaii. It was the best month ever, and to prove it, I had no time to blog. Too many nights, staying up with friends on the porch, drinking Samoan cocoa, and talking story (as they would say). Since my only time of day to blog was at night, my social life took over. The last month there was magical. To list a few things, Sam's fire knife dancing in the Laie Talent show, Ellie and Jayne dancing in the Tahitian Festival at the PCC, Jake turning Samoan, the greatest farewell luau ever. I am flooded with emotion when I think of these incredible memories. It was extraordinary (the best word I can think of). We are missing our family there in Laie- the Galeai family and all their extend family who adopted us, the Hughes family, the Johanson family, the Weeks family, the Harp family, and many more. When Seth and I arrived on the mainland, two days later we left our kids and flew to Seattle to put our house on the market to sell. We skyped with the kids the next day and Jake kept asking to "go home." He didn't mean Seattle, he meant Hawaii. It was such a short time of our lives, but it became our home. It was not without its challenges or stress free, but it grounded us to the importances of our family and the gospel.

Two days after landing in Utah, Seth was able to contact the hospital in Israel, Haddassah Medical, and make an appointment with the ALS doctor who is running the stem cell therapy trial. No short of a miracle, since we had been trying for 5 months to get through to them to make something move forward. The appointment was scheduled for Sept 3. This threw into motion our trip to Jerusalem.

The last month in Utah has been filled with ups and downs. The highlights have been the time being able to connect with family and close friends. The kids have been extremely happy to be with their grandparents and cousins. A huge thanks to Grandparents,  Aunts, and Uncles who have extended themselves and their families to our children. With this distraction, they were barely aware of the stress of us trying to sell our house, not knowing where we are going to live, Seth and I preparing to travel to Israel, and all the extra stuff. It's not they were unaware, just that they were supported.

So yesterday morning Seth and I left on our adventure/quest to Israel. We've come to get information about the ALS stem cell trial in hopes to be a part of it. We know the trial is already full, but for months we have felt prompted to try and be a part of it. But as I have learned before, sometimes we don't see the reason we are sent to certain places or to certain people. It may be that we will never be a part of this specific trial, but there will be some sort of connection that will lead us elsewhere. I can't seem to guess the Lord and His plans for us. :)

Steph, Seth's sister-in-law, has a brother-in-law, Greg Gerritsen, who works for the airlines. He gave us buddy passes to fly to Israel, saving us thousands of dollars. The trick was, flying standby. I was nervous about it. Especially because travel wears on Seth quickly. He doesn't sleep well on planes and its very tiring to anyone.

We landed in Tel Aviv at 4pm, were able to, finally, confirm our hotel by phone, and jumped on a train to Tel Aviv where we transferred to the train to Jerusalem. Here's the email I wrote from the train-

Photo From the Dirty window of the train.
"Not sure how to communicate with everyone, so I will send out an email. Right now Seth and I are taking the train into Jerusalem. We are staying at the Haddassah Medical Hotel, at least until Monday. Not sure how the accommodation will be? We were so blessed to make all 3 of our flights. We even caught the earlier flight from Houston to Newark, which was so great to be there without worrying about making our flight or not. Seth and I were the last two put on the plane and then Seth ticket was double booked, but there was one more seat and he sat there. We were able to have the isle seats to ourselves, 3 seats together, on the flight to Tel Aviv. I slept both the first two flights, the entire way. I think I was tired. Then Seth and I took turns laying down and sleeping on the bench on the 11 hour flight over seas. It worked out great. Seth was told the best way in to Jerusalem was the train. Hmmm, I think if you know Hebrew and the train system, that true. But since we know neither, maybe not. But we are making our way and always an adventure. Seth is deliriously tired sitting next to me and I am dazed as I watch the sunset on the bland landscape of the Israel countryside through a very dirty window.  And yet I feel so grateful to be here. I am hoping some of my memory returns of the many incredible places we visited 16 years ago. Seth and I laughed about what we remember and what I couldn't remember. He has always had a better memory than I. I was nervous to come, only to because I was worried about disappointment of nothing being offered to us concerning the medical trial. But for sometime, starting when we got to Hawaii, we felt prompted to come here. Its not always easy to move forward without seeing the next step. Something I should be getting better at, but am not. We will see. I am grateful for all of your support. The last three weeks in Utah have been great to be with family, and yet have been stressful as we've had to make so many difficult decisions. Thanks for your patience with me. "

 From there we caught a cab to our hotel which adjoins Hadassah Medical Center. The cab driver asked us in broken English where were from. Seth told him Seattle. He struggled his shoulders, having no idea. Seth then told him, its just above California. Awe, says the cabby. Everyone knows where California is. We use to tell people this 16 years ago, so I had to laugh to myself. Yes, we live just above California.

We made it to the hospital's hotel in Ein Keren.  We checked in, ate at a little cafe, showered and fell into bed. I called the kids as I laid in bed and kept falling asleep as I talked to them. Yes, I was that tired. Seth said I hung up an began snoring. I guess I was tired. We slept a whole 9 hours, more than we've had in a long time. Grateful to be here safe and without any complications. Ready for our next adventure.