Hi everyone,
As many of you may have heard, after meeting with our medical team, and weighing my own experience with the drug trial we began in September (little evidence of benefit and some evidence of detriment), Amy and I decided to end that drug trial and return to our search for therapies that will benefit at my condition. We feel we are already making progress and hope to update you soon. We are deeply grateful to the doctors and administrators at the University of Utah who made this trial possible for us, and to all of you for your support, prayers, and faith. You are truly heroes.
Love!
Seth
Monday, February 10, 2014
Repost (from 10-7-13): medical trial begins, fundraiser thank you!
The following is a repost of a blog entry written on October 7, 2013 that was accidentally deleted:
*****************************************************************************
Hey all,
I apologize for not having written in quite some time. Following our return from Israel we spent the remainder of the summer visiting family and friends in Utah. We also used this time to meet with doctors at the University of Utah to explore irregularities, not known to be typical of ALS, in my lab work. Because many of these irregularities are more commonly associated with autoimmune disorders, we began to re-explore the idea of immunosuppressive therapy. Our exploration "just happened" to peak within days of a lecture at the University by my Boston-based neurologist--a lecture that included the theory that ALS may have a number of onset mechanisms including autoimmune irregularity. We also learn from her the details of an FDA approved drug trial of immunosuppressive therapy for ALS designed to test this.. Working directly with her, my University of Utah neurologist sought out and gained approval to treat me according to the FDA approved regimen. After rigorous baseline test, I began a six-month protocol on Friday, September 27th. My initial impression is that my body is handling the medication relatively well… I'll be sure to provide more detailed updates as we progress.
If this trial was the medical highlight of the past couple weeks, the clear emotional highlight was the outpouring of love and generosity we saw in the course of a fundraiser thrown for us by our dear friends Jenny and Paul Ahlstrom. The Tuesday before the trial began, Paul and Jenny called and informed us that they were launching a fundraiser for us. They asked for the email addresses of close friends and family, and an estimate of the costs we might incur for this trial. They launched the site on Friday morning just hours before my treatment began. Over the next 24 hours Amy and I were overwhelmed to the point of tears all day as family, friends, strangers, and numerous anonymous donors expressed support, hope, and faith for our family. The initial funding goal of $28,500 was raised within 24 hours, and you haven't stopped there…
I personally have never seen anything like this. I find myself overcome and unable to think about you people without becoming emotional. I find myself lying in bed at night, unable to sleep, thinking about the thoughts you shared on the site. I find myself wondering about you anonymous donors, and how I can possibly find you and thank you. I find myself thinking about whether I myself have missed similar opportunities to overwhelm someone as you have overwhelmed me. I made the following attempt to recapture some of the effect of this experience on me:
Now clearly I see that the good around me exceeds my beliefs' incline,
as mere mortals I know surprised me and showed their actual nature divine,
when a trial I'd embraced as given by grace and thought I shouldered with few
was taken by many as if were were anything I trading places would do?
How do I allow, with fear on my own brow, expressions of faith unashamed
from strangers complete with no cause for deceit, my burden communally claimed?
Why so sublime, such a blow to my mind, to learn of prayers for me by many
when in weakness of self my village I'd shelved, to be used maybe later if any?
Truly, how do I live when Angels would give everything to give me their turn
when these Angels, though clothed in mortality's robe, love I unworthily earn?
It seems all too clear the debt is to dear, this burden giv'n not for repay,
but to be passed along when sufficiently strong, I'll be Angel on love's needful day
I'll cry for my brother and weary the father though I see at best through dark glass
reaching out to new length seeking for a strength to act, though unsure, I will act!
My fear put aside, imperfection in stride, I'll express unashamed what I know
with unfurrowed brow, empowered somehow, finding grace lights my steps as I go.
Though I've only stooped shoulders, twas never a boulder so big it could never be moved,
no trial built so broad, by man or by God, that together we'll never improve.
I will not forget, though we are mortals yet, that in each of us rest the divine
that kernel is so good that, once understood, we believe and achieve, our design.
I love you and thank you all.
SETH
*****************************************************************************
Hey all,
I apologize for not having written in quite some time. Following our return from Israel we spent the remainder of the summer visiting family and friends in Utah. We also used this time to meet with doctors at the University of Utah to explore irregularities, not known to be typical of ALS, in my lab work. Because many of these irregularities are more commonly associated with autoimmune disorders, we began to re-explore the idea of immunosuppressive therapy. Our exploration "just happened" to peak within days of a lecture at the University by my Boston-based neurologist--a lecture that included the theory that ALS may have a number of onset mechanisms including autoimmune irregularity. We also learn from her the details of an FDA approved drug trial of immunosuppressive therapy for ALS designed to test this.. Working directly with her, my University of Utah neurologist sought out and gained approval to treat me according to the FDA approved regimen. After rigorous baseline test, I began a six-month protocol on Friday, September 27th. My initial impression is that my body is handling the medication relatively well… I'll be sure to provide more detailed updates as we progress.
If this trial was the medical highlight of the past couple weeks, the clear emotional highlight was the outpouring of love and generosity we saw in the course of a fundraiser thrown for us by our dear friends Jenny and Paul Ahlstrom. The Tuesday before the trial began, Paul and Jenny called and informed us that they were launching a fundraiser for us. They asked for the email addresses of close friends and family, and an estimate of the costs we might incur for this trial. They launched the site on Friday morning just hours before my treatment began. Over the next 24 hours Amy and I were overwhelmed to the point of tears all day as family, friends, strangers, and numerous anonymous donors expressed support, hope, and faith for our family. The initial funding goal of $28,500 was raised within 24 hours, and you haven't stopped there…
I personally have never seen anything like this. I find myself overcome and unable to think about you people without becoming emotional. I find myself lying in bed at night, unable to sleep, thinking about the thoughts you shared on the site. I find myself wondering about you anonymous donors, and how I can possibly find you and thank you. I find myself thinking about whether I myself have missed similar opportunities to overwhelm someone as you have overwhelmed me. I made the following attempt to recapture some of the effect of this experience on me:
Our Design
Now clearly I see that the good around me exceeds my beliefs' incline,
as mere mortals I know surprised me and showed their actual nature divine,
when a trial I'd embraced as given by grace and thought I shouldered with few
was taken by many as if were were anything I trading places would do?
How do I allow, with fear on my own brow, expressions of faith unashamed
from strangers complete with no cause for deceit, my burden communally claimed?
Why so sublime, such a blow to my mind, to learn of prayers for me by many
when in weakness of self my village I'd shelved, to be used maybe later if any?
Truly, how do I live when Angels would give everything to give me their turn
when these Angels, though clothed in mortality's robe, love I unworthily earn?
It seems all too clear the debt is to dear, this burden giv'n not for repay,
but to be passed along when sufficiently strong, I'll be Angel on love's needful day
I'll cry for my brother and weary the father though I see at best through dark glass
reaching out to new length seeking for a strength to act, though unsure, I will act!
My fear put aside, imperfection in stride, I'll express unashamed what I know
with unfurrowed brow, empowered somehow, finding grace lights my steps as I go.
Though I've only stooped shoulders, twas never a boulder so big it could never be moved,
no trial built so broad, by man or by God, that together we'll never improve.
I will not forget, though we are mortals yet, that in each of us rest the divine
that kernel is so good that, once understood, we believe and achieve, our design.
I love you and thank you all.
SETH
Tuesday, January 7, 2014
A Conversation With A Friend
A recent conversation with a close friend provided some powerful lessons to me… I wanted to share a little of what I learned.
Amy and I were surprised when a dear friend of ours, though a self-described atheist, asked if she could speak with us about our beliefs / religion. My initial reaction was to be both excited and nervous--excited to talk openly about something we care so much about, and nervous about discussing something so sensitive as religion with someone we care so much about. We responded that we recognized the sensitivity of this topic, but were happy to share our personal experiences if it would be helpful.
A few days later our friend came to our home. She explained that she had had some recent experiences that had made her truly curious for the first time in her life about faith/religion. She further explained that she had seen many desirable things in her interaction with our Church's members, but had a few questions about our beliefs. She then said, "So… My main questions are about your beliefs in divorce, tithing, women's roles in the Church, and homosexuality."…MAN! I had never been asked such an explicit question by such a sincere person. Though I won't attempt to share here the specifics of our conversation (I've found it difficult/impossible to accurately recapture a conversation in writing), I will share that, for the next couple hours, we had one of those truly rare experiences of open, honest, high-fidelity, additive-free communication in which nothing is held back on either side...including convictions, beliefs, fears, aspirations, hopes, and tears.
I want to thank this friend publicly for one of the most memorable conversations of my life. Since that conversation, I've thought daily about what made it possible for us to have such a unique experience--our friends' example of being honest with self and with others, about living in a state of "remodeling" and willingness to seek out truth wherever we find it, about being open to reconsidering long-held assumptions, and about not fearing to seek answers to the BIGGEST questions of our hearts. Her example has led me to "re-test" many of my own beliefs and to seek to deepen and broaden my understanding of truths I learned years ago.
Because I continue to believe in "truth"--my definition has not yet changed since THIS blog entry--and believe that we can seek out and find truth, I believe that all honest seekers will, eventually, whether in this life or the next, come to the same understanding. Along the way, until/towards that day, I pray that I will be more like my friend (and that more of my friends will be more like her as well), and that conversations of this type become less rare… Ask me anything :-)
All my thanks,
Seth
Amy and I were surprised when a dear friend of ours, though a self-described atheist, asked if she could speak with us about our beliefs / religion. My initial reaction was to be both excited and nervous--excited to talk openly about something we care so much about, and nervous about discussing something so sensitive as religion with someone we care so much about. We responded that we recognized the sensitivity of this topic, but were happy to share our personal experiences if it would be helpful.
A few days later our friend came to our home. She explained that she had had some recent experiences that had made her truly curious for the first time in her life about faith/religion. She further explained that she had seen many desirable things in her interaction with our Church's members, but had a few questions about our beliefs. She then said, "So… My main questions are about your beliefs in divorce, tithing, women's roles in the Church, and homosexuality."…MAN! I had never been asked such an explicit question by such a sincere person. Though I won't attempt to share here the specifics of our conversation (I've found it difficult/impossible to accurately recapture a conversation in writing), I will share that, for the next couple hours, we had one of those truly rare experiences of open, honest, high-fidelity, additive-free communication in which nothing is held back on either side...including convictions, beliefs, fears, aspirations, hopes, and tears.
I want to thank this friend publicly for one of the most memorable conversations of my life. Since that conversation, I've thought daily about what made it possible for us to have such a unique experience--our friends' example of being honest with self and with others, about living in a state of "remodeling" and willingness to seek out truth wherever we find it, about being open to reconsidering long-held assumptions, and about not fearing to seek answers to the BIGGEST questions of our hearts. Her example has led me to "re-test" many of my own beliefs and to seek to deepen and broaden my understanding of truths I learned years ago.
Because I continue to believe in "truth"--my definition has not yet changed since THIS blog entry--and believe that we can seek out and find truth, I believe that all honest seekers will, eventually, whether in this life or the next, come to the same understanding. Along the way, until/towards that day, I pray that I will be more like my friend (and that more of my friends will be more like her as well), and that conversations of this type become less rare… Ask me anything :-)
All my thanks,
Seth
Thursday, December 19, 2013
Christmas Letter 2013
Merry Christmas!
SSSHHHHHHH…….. Don't tell Amy I am writing this. She banned
me 15 years ago, while writing thank you notes for wedding gifts, from writing
all future family press releases.… Perhaps because it took me 15 minutes to
write "the crockpot you gave us is cool, Thanks”…She also knows it's a
challenge for me to summarize a year in
a single letter because:
- · I feel, simultaneously, like I have nothing to say and too much to say
- · I want to sound wiser and funnier and humbler and handsomer than I actually am
- · I feel weird laughing and crying by myself while I write (I keep checking to make sure no one's watching)
- · Some of the Christmas cards you people sent us are major league material… My competitive juices are flowing… We hope to dominate this year's card competition by "executing the fundamentals", "leaving it all on the field", and "wanting it more than the next guy." (if I had a cowriter to celebratorally headbutt, I would!)
Here goes: This year has been an incredible year for our family. Due to The Project, we've continued to live with a higher degree of uncertainty (where we'll live, who we'll meet, falafel or schawarma?, etc.) than in years past. This uncertainty has continued to require us to exercise faith and advance (sometimes gracefully, sometimes not) through a minefield of our own fears. Although it's difficult to tell at times whether we’re actually making forward progress, at least we've familiarized ourselves with the location, size, shape, trigger apparatus, and post-explosion smell of more fear-mines than in any other year J. Words cannot express our gratitude to those who, along the way, have darted out onto our minefield to deliver emotional or physical help without stopping to tell us that most of our mines aren't really real. Perhaps next year the hovercraft I’ve ordered will change the game entirely…allowing us to begin a lifetime of returning the favor.
Individually, each member of our family has grown and seen
miracles.
Seth: Though this year was difficult physically, it was also one of my favorites! The highlight of my year was our families experience in Israel. It was surreal to take the kids to the place were Amy and I met in 1996…to see them have their own experience as they followed, primarily, Amy's unstoppable spirit of adventure and example of fearlessness (they have no idea Amy even has fear). Though I'm sure my kids will not remember many of our family experiences in the Holy Land, I hope they will remember some piece of the experience (people, ancient walls, modern walls, tombs, valleys, churches, seas, food, and feelings). More importantly, I hope they will remember that their parents, though flawed, sought to live by faith.
Amy: If Amy was the MVP of our family last year, she, this
year, has forever solidified her place in the Matriarch Hall of Fame: She took
four kids, a wobbly husband, and a mother-in-law to Israel. She gave up her space in the garage,
encouraging Sam and me to fill it with a non--driving 1968 Camaro. She dealt
gracefully with me while I was pharmaceutically not myself due to a one-of-a-kind
drug trial. She did all of this while continuing to look outside her family and
to serve others with her camera (beautifully) and her example (unbelievably!). I
believe we can safely say that this was Amy's most difficult year yet. I
believe we can also say it was her best--in my eyes she has never been more noble, pure, or worthy of
adoration.
Sam (13): Our boy is officially a teenager. Highlights of Sam's year include his first year of lacrosse, being one of the high scorers on his soccer team, getting braces, making the middle school's JV basketball team, and beginning work on a 1968 Camaro. A day doesn’t go by when he doesn’t steathfully sneak into the garage and burn, cut, dremel, or nail something. He is working on what Amy calls his “Boy Cave” (ie his room) and has asked for a mini fridge filled with his favorite drink, Hubert's Limade (the drink he would buy daily in Hawaii when we lived there). Funny kid. His favorite Israel experience was walking through the old city, which makes us think he might actually remember and "get" some of the experience.
Ellie (10): Highlights include making and excelling on the local "Select" comp soccer team, personally ensuring Jacob's safety while in Israel, dancing ballet and jazz both at classes and all through our house, and never running out of energy, ever. She loved this summer's travels especially painting herself in Dead Sea mud and our RV trip through Grand Teton and Yellowstone National Parks. She has a wicked quick sense of humor and is the most likely person to get me laughing until I cry. She is so similar to Amy physically and emotionally…I strongly suspect she's a clone.
Jayne (7): still our most high maintenance child. That is said with the utmost respect since the competition is fierce at our house. She also loves to dance, take gymnastics, and play some serious left footed soccer. She has decided that her new sport is basketball. She wishes everyday was Wednesday so she can go to basketball practice. A play date every day would almost be satisfactory for this girl. She is extremely creative and can whip up some impressive art, or create a game with Jake and all her stuffed animals. Travelling with little kids in foreign countries is always a bit nutty. Jayne was kissed and her blond hair petted as we walk through the old city of Jerusalem. She told me that they must like her. She won’t remember much of our experience there but she will remember that we were together.
Jake (3): keeps us rolling with his extreme vocabulary and phrases that he uses but that usually aren’t quite right. Right now he continually says, “Are you kidding me?” and “Come on!” He is lean and sinewy. This summer on our Yellowstone RV trip, the bathroom wasn’t working so Sam taught Jake to pee in a Gatorade bottle. Later in the summer at home, Amy found one of her water bottles filled with suspicious yellow juice in it. I guess we forgot to tell him when we pee in bottles and when we don’t. We continue to call him our “free range child.” Regarding Israel, if you ask Jake where he learned to swim, he will tell you “The Sea of Galilee.” The Galilee was definitely his favorite experience, though he often stated, "LOOK, it's Lazarus tomb!" (old walls DO start to look similar). I'll never forget watching as he finished a photo op with two Israeli soldiers and asked them respectfully, "Do you shoot good guys?" He will probably only remember what we will tell him about our Israel trip, but we are happy to have those many memories to tell him about.
Okay, this is Amy taking over. Seth had done exceptional as
he always does writing (except when it comes to wedding thank you notes). When
it comes to Seth, its hard to put into words the depth of love, respect,
amazement that I have for him. It has not been an easy year for him, but it has
been one of many blessings. Driving home the other day, I was overwhelmed by
the blessings that we have been given this year. It has been a year of faith,
hope, adventure, endurance, strength, joy, and love. Such an exceptional year
is credited to a three-part blessings- a loving God, our families, and our
friends. Yes, it is all of you reading this. This past summer, some friends had
a fundraiser for us to help us cover the cost of a medical trial. A goal was
set and met in 24 hours. The outpouring of love and support for us overwhelmed,
refueled, and humbled us. This was just one example of the many acts of service
and support give to us this past year. Thank you all for your continual
prayers, thoughts, and actions of service to us. We can’t thank you enough. At
this beautiful time of love and giving, we hope you know of our love for you
and the beautiful love of the Savior whose birth we celebrate at this
Christmas time.
Tuesday, December 3, 2013
Side Project
So… I've always been the type of person to overthink things. I can typically talk myself out of what other people would see as "fun". An example of this is my life long interest in classic cars. In fifth grade, during a school magazine drive, I signed up to a two year subscription to Popular Hot Rodding magazine. Ever since then I've been able to identify the year, make, model, and modifications for an unusual amount of cars (for a poser :)). Add to this an addiction to car shows, and a daily craigslist search for muscle cars, and you would think that I would have rebuilt multiple cars by now. The reality of it is, however, that I only recently sold the same four-door Honda Accord that I'd driven driven for the last 16 years.
On September 24th, I received my first email ever from my 12-year-old son… It was entitled "Sam's car":
As you can see, the car is on a trailer.… It was not running at the time we picked it up, but, thanks to the tireless work of a couple "uncles / car friends" (we've had to be specific about what we call these guys because, otherwise, Jake calls them "Dad's boyfriends") it's on its way to road worthiness.
Wish us luck!… Better yet, bring your coveralls and come get dirty with us :-)
Seth
On September 24th, I received my first email ever from my 12-year-old son… It was entitled "Sam's car":
Hey Dad,This email was followed by 10 craigslist links to 10 cars, none of which was for sale for less than $40K…No father has ever been so proud :-). Sam's interest, combined with my growing sickness of my own poser-ship, combined with Amy's encouragement, combined with the willingness of a few insanely gifted friends with real (versus poser) car experience, lead Sam and I to make the following purchase:
hows it going? it going great here. I want a Camaro. specificly a 1967 rs ss Camaro
anyways =) i found a bunch of them on craiglist check out the links
See you later.
smiley faces your son,
Sam
The car's arrival made quite an impact on the neighborhood!
As you can see, the car is on a trailer.… It was not running at the time we picked it up, but, thanks to the tireless work of a couple "uncles / car friends" (we've had to be specific about what we call these guys because, otherwise, Jake calls them "Dad's boyfriends") it's on its way to road worthiness.
Though our family CLEARLY has a number of other things on our plate, I'm finding this "side project" to be a much needed distraction from The Project…Sam and I are clearly in over our heads, but are very excited to have a project to work on together. Many thanks to Amy for being the rare type of insane wife/mother that encourages this type of thing! Many thanks to Uncles Tim and Tyler for an epic retrieval trip (full-length feature film expected in 2014) and for their understanding, mentorship, and wrench time!
Wish us luck!… Better yet, bring your coveralls and come get dirty with us :-)
Seth
Friday, November 22, 2013
Medical trial update
A quick of medical update: I'm happy to report that, after adjusting one medications level, I have seen an improvement in my leg function… Still not back to pretrial levels, but I'm now using the wheelchair mostly as a walker…we're taking this as an indication that the negative side effects of the regimen can be reversed! Based on this finding, we're giving the trial a few more weeks and one more round of expert examinations before deciding whether to continue or stop.
Best,
Seth
Best,
Seth
Thursday, October 31, 2013
Medical Trial Update
Hi everyone,
Month one of the immunosuppression drug trial is now behind us! After a rocky month that included a couple of falls and a rapid decline in leg strength (I'm currently using a wheelchair for my own protection :-)), Amy and I attended my first checkpoint with the University of Utah team on Monday the 28th. My neurologist agreed that the unusually rapid decline most likely results from the drug regimen itself. What is unclear is which of the five medications is having the undesired effect.We do have a leading candidate thanks to our discovery that one key drug, known to have some neurotoxicity, is concentrating in my blood in a way it was not expected to. Though we have already begun to talk about whether and how to bring the trial to a close, I'm considering it a silver lining that the drug trial IS having an effect!… this is something that was not a given at the outset of the trial... Because there is no known cause for ALS, including no known way to speed up or slow down disease progression, the fact that my symptoms have progressed dramatically is actually incredibly exciting AND very scary.
We hope to provide further updates soon as we work through the adjustment and or close of the trial. Sincere thanks to all of you for your ongoing support.
All our love,
Seth and Amy
Month one of the immunosuppression drug trial is now behind us! After a rocky month that included a couple of falls and a rapid decline in leg strength (I'm currently using a wheelchair for my own protection :-)), Amy and I attended my first checkpoint with the University of Utah team on Monday the 28th. My neurologist agreed that the unusually rapid decline most likely results from the drug regimen itself. What is unclear is which of the five medications is having the undesired effect.We do have a leading candidate thanks to our discovery that one key drug, known to have some neurotoxicity, is concentrating in my blood in a way it was not expected to. Though we have already begun to talk about whether and how to bring the trial to a close, I'm considering it a silver lining that the drug trial IS having an effect!… this is something that was not a given at the outset of the trial... Because there is no known cause for ALS, including no known way to speed up or slow down disease progression, the fact that my symptoms have progressed dramatically is actually incredibly exciting AND very scary.
We hope to provide further updates soon as we work through the adjustment and or close of the trial. Sincere thanks to all of you for your ongoing support.
All our love,
Seth and Amy
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