Monday, December 17, 2012

Christmas letter 2012

Dear Friends near and far,

Merry Christmas. We usually send out a Christmas letter with our card, but this year we decided to get ‘techie’ and, at the same time, try to introduce our loved ones to a more consistent source of updates from us. So welcome to our blog! Hopefully this will make up for our poor communication skills.

Every year Seth coins a new family motto: This year we have had many.

1st family Motto- “Christensens, We don’t care what you think.” How rude right? Well it isn’t meant to be rude, it just means when we step onto the beach very white and chubby, we don’t care what you think! :) Actually, it means that we’ve been reminded this year that we have to make decisions based on what we believe to be best for our family. We exercised this muscle with our decision to take leave from Microsoft and to move our family to Hawaii for 6 months. It was an incredible and life changing experience for our children and us. Among many blessings of our Hawaii experience was the chance we had to spend time together as a family. This included the many visitors that came to see us while in Hawaii—thanks again for coming. And despite many challenges, Amy deemed this summer “the best summer ever.”

2nd Family Motto- “Christensens, We’re gettin ready.” Life isn’t always easy. It has plenty of challenges around every corner. And we can’t always be 100% prepared, but we CAN ready our faith so when those hard times come, we can do our best.

3rd Family Motto- “Christensens…No Matter What.” Several years ago we met with some good friends in Boston. They told us of the difficulty of navigating through the roads of Boston “that originated as cow paths”. Every time they went out driving, before turning the key, they would say, “I love you, no matter what,” knowing that they would get lost and frustrated along the way. We have adopted this in our family- “I love you, No Matter what.” No matter what mistake, no matter what challenge, no matter what frustration-I love you. And we’ve had to remind ourselves, as there have been many events to make us pull out this quote- “No matter what.” This motto is why we chose our blog URL.

Our blessings have been countless since our last Christmas letter. Here are our some of the highlights.

Sam- Turned the big 12. He learned to fire-knife dance and surf in Hawaii. Someday he can use these skills to impress the ladies! But that being way off, he loved being homeschooled by his slacker teacher (mom), loved not wearing any shoes for 6 months, and even got to go spear fishing at night. He loves middle school (mostly the lunches), played soccer, is playing on two basketball teams, is playing piano, and learning guitar. His favorite nickname of this year was, “The Justin Beiber of fire-knife,” given to him by his adopted Uncle when Sam performed on stage fire-knife dancing. :)

Ellie- Turned 9 and we are happy to reported has broken no bones this year (still crossing our fingers for these last 10 days before the new year). She danced as the only Haole (white) girl on a Tahitian dance team for the Tahitian dance festival held in Hawaii. Her long blond hair and fair skin set her apart, but her smile made her fit right in. She learned to long board like a mad skater, and put wheel marks in the concrete circling our house as she looped on her board thousands of times (barefoot of coarse). She also learned to surf a bit too, but preferred tackling big waves as she swam in the ocean (something we miss since she is now tackling us in absence of the waves). She played soccer, taking her team to an undefeated season once she arrived, and currently plays indoor soccer, dances jazz and ballet, and plays the piano. And she still never runs out of energy. Ever.

Jayne- Turned 6 and took on the new life of a kindergartener. She loves school and tells us every detail of the happenings, good or bad, of her kindergartener day. She is killing many trees with her crafting and artistic creations. She started her soccer career by scoring 6 goals her first game (5 for her team and 1 for the other team). She plays like it’s not tough at all and comes of the field and wipes her brow like it was hard work—such a drama queen. She has also taken up the dangerous sport of wrestling with Jake. This usually ends in tears after a lot of laughing.

Jake- is about to turn 3. He is a talking machine. His unique vocabulary always astounds us. He greets Seth every morning with a- “Good morning Daddy Ogre.” And then usually lets out a dinosaur roar (just to remind us all of who is boss). Its taken him some time to adjust to clothing and shoes since returning from Hawaii. He doesn’t like it that the kids go to school and leave him alone, but has deemed Seth as his play buddy during that time. He’s rough and tough with a soft heart. His frustrations end in some very impressive tempter tantrums, and he can fall asleep in 3.7 seconds. He’s talented little man.

I am sorry if I bragged too much. They are the love off our lives and like ever parent, we think they are the greatest. And we love them,”No Matter what.(No matter how crazy they drive us, and we want to sell them on ebay).”

Amy(Seth writing)- Turned 36 :). Beside making each of the experiences in this letter possible, she found time to do amazing things with her camera (evidence herein). It’s very hard to describe the 2012 MVP of our family: She’s kept an impossible pace, with an impossibly bright attitude (with impossibly few/short melt-downs), exercising impossible faith in the face of impossible trials. She simply defies the laws of human nature, physical limitation, and gravity. Her response to ‘The Project’ has been to draw us all together, to increase the depth of our experiences, and to be the first one into the surf (both metaphorically and literally) and the last one out—after playing harder than any of us! She was game to move the family to Hawaii without a confirmed residence, game for selling the house (on hold), game for moving the family to Israel (on hold), and game for anything that gives her children a life experience (she never, ever, puts this on hold). She is pure. She is beautiful. She is the hero and love of my life.

Seth turned “basically 40”. He has been saying this ever since he turned 35. His sense of humor remains 100% intact. He enjoyed volunteer teaching at BYU Hawaii: He taught two classes there, a religion and a business class, and he says he is much better at teaching filthy lucre than religion. He loved to snorkel and building castles with the kids on the beach. He continues to amaze me with his faith and positive outlook. When meeting a trial or set of trials (since they always seem to come in set of three or five or more), he always says, “There must be something good on its way.” And when his body doesn’t cooperate, he continues to press forward. Even when we are a mess, he is still the one I choose, "No Matter what."

So this is maybe too long of a Christmas letter but we want to wish you a Merry Christmas. We are so grateful for you and your support this year. What an incredible year it has been. We have faced the very hardest trials we’ve yet seen, and been blessed with the very richest blessings we’ve seen. It would have never come to pass without you, our family and friends. In Hawaii we learned of a term called Hana’i—loosely and with less meaning translating to “adoption”. The Polynesian culture teaches that once you are made part of the Ohana (family), you are Ohana forever. This is true in our case. You have opened your arms both physically and with prayer for our family and we have felt the power of our hana’ied Ohana in our lives. We are forever grateful. We are reminded that with God, nothing is impossible. We are grateful for your love and support to us. Even when we don’t call or communicate, as we should, you take us back, and continue in our support. We love you and can’t wait for the next time we are together- No Matter What.


Seth, Amy, Sam, Ellie, Jayne, & Jacob

Sunday, December 16, 2012

Boston report-out

What a whirlwind trip! Thanks to the service of many dear friends who provided airline buddy passes, Boston lodging, airport shuttle service and Seattle kid-watching, it was a good one.

On Thursday night we were able to fly the red eye on buddy passes on a completely full flight from Seattle to Boston! Though we got very little sleep on the flight, everything went smoothly. By the time we hit Boston we were blurry-eyed, but able to get to our rental car, get some breakfast, and get to Massachusetts General Hospital (MGH) with 20 minutes to spare. We changed in the bathrooms and then sat and waited for the Rheumatologist that we had come to see.

Unfortunately, the meeting was somewhat of a flop. In short, the new doctor was unfamiliar with ALS-like syndromes and, as a rheumatologist, those cases he sees that do sometimes have motor neuron impact (like clear-cut lupus, myositis, etc.) typically have stronger and more specific lab findings. He WAS interested in the unusually high number of 'weak-positive' findings in my labs, but was clear that our case did not met the criteria of the type of clear-cut autoimmune diseases he is familiar with. He was willing to run his own labs in hope for finding more evidence, but was doubtful the findings would be more definitive. Seth had his blood drawn and we left without a clear path forward.

After leaving his office we met with Dr S, a diagnostician we've been working with for six months. He joined us in our frustration with the unsuccessful appointment, especially since we had flown out specifically for this appointment. Before coming, we had contacted Seth's ALS doctor, Dr C, and asked to meet her since Amy had yet to meet her. Dr S joined us to meet Dr C. We all sat down and this is when the magic happened. They both agreed that the same weak positives that did not qualify us for a clear-cut case of lupus, ARE highly unusual for ALS. They both agreed that there are some things we can try in the way of immuno-supressors and IV antibody (IVIG) treatment to determine/influence the autoimmune component of our case. We left this meeting with a clear plan of action for us and our doctors, making the whole trip worth while. We give thanks for progress in all its forms:)

Lunch on Newburry Street

The Boston LDS Temple...not our favorite picture of us, but the building is amazing!

Saturday, December 15, 2012

Fresh Baked Blog


Isn't it FANCY! I haven't got around to any fancy design yet, but I am sure its going to be great. We're not really into frills.

Forgive the repost, but those new to the blog likely have interest in an update on what we call 'The Project'...Seth's health.

December 13:

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
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.
Seth and Amy