Wednesday, January 23, 2013

Medical update...therapy begins

Wanted to post a quick note to share what we feel is progress: 

On Monday I started therapy for the host of autoimmune indicators we've discovered via lab tests over the past number of months. The therapy consists of a cocktail of steroids (Prednisone), immuno-suppressors (Methotrexate), and a couple OTC  supplements. It is expected to last 4 weeks before further tests are completed and further options are considered.

Thanks for your ongoing faith and prayers!


Thursday, January 17, 2013

Happy Birthday Amy!

In part of Amy's birthday celebration this year, I wanted thank her for being the truest, most beautiful, most inspiring person I know. In an effort to do so--against my better judgement--I'm sharing here a poem I wrote her in 2006, and today add three more verses:

There once was girl who got left at home
With no money to spend, and two little gnomes
She'd a bean on the way, And an 'ol chubby hubby
And a house that each day would make itself grubby 

And then one lone night, that girl had a dream
That she took those two gnomes and trained them to clean
And found a new hubby, better by far
Who had wads o'money and shiny new cars
And she got new clothes, and toys, and perfume
And long naps each day from 3 back til noon
And a fitness guru to be her own trainer
And a cook for her pasta who'd use his owns strainer

For these and all forms 'o daily duress
Her dream did provide and save her much stress
Ensuring her peace, ease, fitness and fun
And freeing her up to read, eat and run 

Now lets take a break from girly's nice dream,
And return to it a little later--on in this stream
To discuss that same night, cross the country in Boston
Where chubby ol' hubby was turnin and tossin
And dreaming himself of similar fluff
Of girly and gnomes and money and stuff
But his dream was tweaked and all 'bout a place
Where he'd already shown his chubby face
Where sometimes-tired girly and gnomes played around
In a self-grubbing place where finances were down
And cars, house and clothes were in need of attention
And time is constrained, triple-booked, not to mention 

Of these and all those other things that went with 'em
This hubby did dream, but not with derision
No 'twas not with disdain that he tossed and he turned
But, instead, for that place he found that he yearned
Each minute away from that oft-grubby place
Seemed always like days, and he long-prayed for grace
To take him back safe to her and his home
To see tired girly and he-and-she gnomes 

And lucky for him when ol' girly awoke
She laughed at her dream and felt it a joke
And accepted him each time that he returned
Though chubby and cheap and tired and life-spurned
And with open arms and within her stride
Did work with His faults and frustration did hide
And for clean house, money, ease, and fluff-stuff
Did settle for dreams and that was enough.

Now be-fore they knew, seven years more they had seen
And gnomes three and four had now joined the team
And hubby and girly traded-in Boston 
To move to Seattle and start Microsoft'en
And raising those gnomes the best that they could
With laughter at errors, and mistakes understood 

Now these recent years had not all behaved
And at times time stood still and seemed a dark cave
In which hubby and girly would take turns with the light
When one fell exhausted, the other one rose to fight 
And at these times, to hubby, it never seemed fair 
That girly would oft accept more pain than her share
And carry their family on her shoulders broad
And draw him to his feet and turn him to God 

So girly, I love you. And words soon disgrace
My desire to express how I feel anyplace
Where you or your laughter or your effect I feel
For you 'for my Maker I humb-a-ly kneel 
And know His perfection b'cuz me he so knew
To create perfection personified, my angel, my You.

Wednesday, January 9, 2013


Thank you to those of you who are taking action on our behalf. We hear regularly of friends who have, without telling us, dedicated long hours researching, making phone calls, praying/fasting, and seeking the answers we feel are coming. It's these interactions that buoy us up when the Project isn't cooperating. Examples this week include:

  • One of you approached Amy and I at Ellie's soccer game and blew our minds by telling us you had not only been seeking answers for us in your professional capacity, but that you had made progress and had a new team of experts interested in our case. We are excited to engage them! 
  • Another of you just found out about our Project this week when seeing me in one of my limpy-er moments at church. You shared by email your faith, hope, encouragement, and the details of a medical option you have had results with. We are looking into it! 

These interactions and others like them allowed us to better handle the challenges of the week: Our application for insurance coverage of IVIG treatment (see our 12/16 entry) was denied this week--we are appealing the decision. We also placed a call to Israel to receive a status update on their trial's pending government approval (see our 12/15 entry). We were surprised to hear that approval had been granted last week, and that the final spots in the study had immediately been filled--we continue to research options for receiving this treatment outside of the trial.

(Amy speaking now)
It really does feel like a roller coaster sometimes. When you are at the top of the coaster after climbing a big hill, you feel like your going to make it, and with a smile on your face your ready for what is ahead. But when the bottom drops out from under you or you turn a sharp corner you weren't expecting, the coaster ride seems a bit extreme.

I was sad last night after hearing the final spots in the Israel stem cell trial had been filled. It had taken me a long time to decide I had the courage to take my little family to this foreign land of unrest. But I was on board.  This past Sunday our family, including Sam and Ellie, our extended family, and friends, offered a fast for guidance to our next path for the project, knowing we had many important decisions pending. Seth receive a blessing that offered us hope that things would work out. And so the next two days of denial were difficult. BUT- I do believe that things will work out. And I even have an example. For example, a year and half ago Seth was first in line to for a drug trial for ALS (the drug was called Dexpramipexole). The trial started on the east coast of U.S. and by the time it hit the west the drug supply was gone. We got a call two days before the trial was suppose to start saying that it was cancelled at UW. We quickly called the U of U, who was also apart of the trial and they quickly added us to their trial, only to receive a call the next day that it also was cancelled. Again, we were sad. But two days ago, the results of the Dexpramipexole trial was release and there was no benefits to the drug and it was being pulled from the market. To me this information came right at the right time. The after our many attempts to be apart of this drug trial, and then we were told no. Not once, but twice. We came to terms that this was NOT the right direction for us. Now a year and a half later, we have been told no again. And as we learned from the Israelies, no doesn't really mean no, it just means you have to find another way. So here we go. Finding another way. The right way. And in the end, we will see. Right? Right. Love you all.

Thursday, January 3, 2013

Christmas is Utah

Christmas with Cousins- There is nothing better. We had a great Christmas vacation with our families in Utah. We did it a tiny bit differently this year, as we didn't juggle as many events as we usually do. Neither Seth or I had the capacity to do it. So we spent the first 5 days with Seth's family and the second 5 days with my family. It worked out better. 

This is Jayne and Hailey as the Angels declaring the birth of Jesus.

The shepherds and their sheep, named Jake.
I love the little sheep in this picture.

And we can't forget the Christensen's traditional pinata! Here's Jake and Jayne taking their swing.

This is Christmas morning. We decided that our kids would make something for each other this year. I am not sure what I was thinking, because I didn't have the time to help them make each others gifts. But Ellie and Sam finished theirs and Jake and Jayne bought something for Ellie and Sam. Below is the bed that Ellie made the bedding to for Jayne. Sam refinished Jake's scut bike into a batman scut. It was awesome. Pictures to come on that one.

Here's Jake in his new sharks robe and spider man jammies.
And here is Jake snuggling Aunt Rachel and Kaylynn. They look so comfy.

On Christmas Day we drove to my parents, The Hale Home, to have Christmas dinner and a cousins party there. The Nativity was re-enacted once again. The costumes were brilliant as usually and the participates very, very reverent. It was the normal chaos that I enjoy when it come to the kids doing the play. 
Jayne was happy to finally be Mary. Unsure of Ben's enthusiasm? :)
Jake again appeared as a sheep with his twin cousins Peter and Caleb. Although this time Jake appeared in his shark sheep robe!
The Twin sheep.
And the wise man came. 
Since I am number 5 of 7 children, my kids ages are right in the middle of all cousins. They love getting the attention of the older cousins. 

And they love to play with the little cousins.

The day after Christmas was the Hale family party at Grandma and Grandpas. We kicked it off with sledding at the golf coarse. The snow was great and despite the insanity of the sledding hill, no one got hurt. Jake can be cautious of things and took one look a the sledding hill and started running back to the car. I chased him down and we hopped on a sled and went down the hill. He loved it and asked to go again and again. Jake and Caleb (one of the twins) had matching coats, so you will see double in the pictures. Grandpa did lots of pulling up the hill.

This picture below is Jamus in front, Jake in the middle, and Ellie to steer on the back. They did a sideways somersault half way down the hill. I thought that would do it for Jake, but he didn't even cry and asked to do it again. 
Me, Jake, and Jayne

Grandpa and some of the grand kids.

Jake's snow angel.

The brave crew who braved the sledding hill. It was lots of fun.
We then had dinner at Grandma's house and then the adults and teenagers went to see Les Miserable, the movie. My family is huge fans of this book and play, so we were super excited to see the movie. BUT, we are harsh critics. Only because we have all read the book and know every word to every song. Quasi experts, I am sure. The review is- it was a good movie and a terrible musical. The best part was driving home after with Brad and Dad critiquing the play and then singing at the top of their lungs "Will you join in our crusade..."

Ski day with cousins. This was by far my favorite day. I always tell Seth not to get anything for me for Christmas, because all I want is to go skiing. Again, my wish came true.  I got to ski with two of my favorite people-Sam and Ellie. We were joined by cousins as well, and that made it double the fun. Even Jayne and the little cousins joined us for the afternoon. Its fun to have all three kids skiing. 

I will admit, its always bitter sweet to ski. Mostly because I love to ski and its hard not to have Seth join us. He is by far a better skier than I, and would have much more patience that I with the kids. 

Urban Skiing. That's what I call the cross country skiing we did with my parents. They both love to cross country ski and because there was enough snow we could just carry our ski's across the road from their house and ski along the hillsides. It was a beautiful day and it was fun to go with Sam and Ellie.

On top of the trail. My mom hasn't been skiing in two years because of a hurt knee and foot. It was great she could join us. 

Our last full day in Utah we a special day. We got to join our entire Christensen family for our niece Brooklyn's baptism. It was a special day for her and we were so glad we got to be with her. Then that afternoon we got to go the Nutcracker to see our cousin Ashley dance. It was really fun to have  the girl cousins there for the event. Ashley did great! It was the grand finale to our wonderful Christmas vacation. 


Every Tuesday morning BYU's campus shuts down for an hour, and students are encouraged to gather in the basketball arena to hear a guest speaker deliver a speech on an unannounced topic of their choosing. These 'devotionals' have been delivered by many world dignitaries, but are most often given by LDS Church leaders and/or BYU faculty.

Roughly 2 years ago, a good friend of mine made me aware that recordings of the speeches, going back more than 70 years, are free via iTunes podcast or at the following link: Since becoming aware of this resource, I've used it as a lifeline in times when I'm floundering--often searching by topic and finding answers to my questions while listening to these inspired speakers. Such was the case this morning after a difficult night as that same friend forwarded me a speech by John Groberg (the movie 'The Other Side of Heaven' was based on this man's life). The speech on life missions can be found at: HERE

Hyperlinks to other personal favorites include:

Truth: Richard G. Scott, 1978
Tragedy or Destiny?: Spencer W Kimball, 1955
Agency or inspiration, Which?: Bruce R. McConkie, 1978
Lord, Increase our Faith: Bruce R. McConkie, 1967
Cast not therefore away thy confidence: Jeffrey R. Holland, 1999
In the strength of the Lord: David A. Bednar, 2001
Called to serve: Neal A. Maxwell, 1994
If thou endure it well: Neal A. Maxwell, 1984
But for a small moment: Neal A. Maxwell, 1974