Moving....our blog

Ahhh. the time has come to launch our new blog because:

1. We are no longer on an island ( though we miss it everyday!)
2. We have met many who rival our whiteness :)

Find and bookmark us at : http://christensensnomatterwhat.blogspot.com 

UP-date

Hey Ya'll. Seth here. Since our last entry, a lot has happened. We believe the Lord is most able to direct those who are seeking His will WHILE actively moving forward, For us, this this has meant continuing to approach The Project in two ways: A) researching/pursuing ALS trials like the Israel trial; and, B) continuing to search for alternative explanations/causes for my symptoms...It's been a bit of a horse race at times and it's been interesting to feel Divine direction and intervention on both fronts. 

 

Horse #1: While actively preparing to move the family to Israel to seek to join the stem cell trial (listing/showing our house, gathering passports, applying to schools, apartment hunting, etc.), we received the following email from those running the trial:

 

Dear Mr Christensen

We have now finished the first part of our clinical trial-the safety one and we are waiting for the approvals from the ministry of health in order to start the second part with a higher dose of cells.

 

We still do NOT have the approval and we unfortunately do not know when! But at the moment will have it be sure that will discuss your case among the others with the committee

 

Sincerely

Panayiota

This email, along with the recent unrest in the region, led use to delay our move plans...meanwhile horse two comes striding from behind...:)

 

Horse #2: With the help of some incredible doctors, I have undertaken a testing regimen beyond that typically used for ALS to explore other potential diagnoses. This regimen has included blood, urine, and fecal analysis; imaging including ultrasound and MRI; gastrointestinal workup; ophthalmology workup; muscle biopsy; and genetic testing.

 

Results appear to show evidence of treatable autoimmune issues known to cause neurological issues, but not known to be linked to ALS. Because the ALS / neurology community is fairly unfamiliar with these autoimmune indicators, and because the rheumatology community is fairly unfamiar with ALS, the path forward requires a team effort where no standard team has existed. For those with medical training, findings include: 

• positive antiphospholipid antibodies both by ELISA (antiphosphatidylethanolamine) and by lupusanticoagulant (by dilute Russell vipervenom time);
• positive ANA,
• persistently positive anti-double-stranded DNA; 
• high-titerrheumatoid factor.
• CPK is in the 600s.
• MRI of the LUE showed patchy edema of all muscles, consistent with myositis.
• Biopsy was negative for myositis
• slightly elevated porphiryns

My Boston Doctors met on Monday to discuss how/whether to treat me for these autoimmune indicators--there is literally one documented case ever (2008, Iran) of an individual with a similar medical condition. I post this entry from the Seattle airport as Amy and I await our flight to bean-town to take action on whatever outcome we're presented with.

 

We're moving forward in faith that we'll be guided. Thanks for your faith and continued prayers.

 

Love,

 

Seth and Amy  

Time in Salt Lake

(I wrote this a long time ago and forgot to post it. Here it is.)

I am sure you all enjoyed Seth's post. I told him he should write more often. Especially for a good laugh. One of the many reasons I love him.

After returning from Israel, I left Seth in Boston to meet with his doctor there and I returned home to the kids. I missed these little people. They were well taken care of by my parent's and Seth's parents. Even a little spoiled. :) 

After returning, the kids and I were anxious to return to Seattle for school and to catch our breath. But we decided to wait for Seth to return to come with us. So we filled our time with some fun events together. We got to go see cousin Margret dance at Park City High's half time.

Hike City Creek with Grandpa and Grandma. 

 Jayne, taking advantage of a pedestal to pose on.

We rode the Alpine Slide.

Since Jake was too little to ride the Alpine Coaster, he and I did some golfing. He loved it.

OK...so...we'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 Amy...here 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!

OZ

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 1:30...so..." 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. 

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!

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