Where Are You Christmas?

I just heard Faith Hill’s “Where Are You Christmas?” on the radio.  I’m not sure I ever really listened to the words of that song before…what a beautiful song.  I think I just adopted it as my theme song this holiday season…”My world is changing.  I’m rearranging.”  Yep, that kind of sums up where my heart is today.  But how ALS and Rudy’s absence is changing this Christmas and our family’s world in general is only magnified by what has been going on in our community for the past 12 days.

The Thomas Fire that broke out in Ventura County a week ago last Monday made it’s way to Santa Barbara County on Sunday and is snaking it’s way up through the south county communities of Carpenteria, Summerland and now Montecito.  We aren’t in any fire danger here in Goleta but Santa Barbara and Goleta have been blanketed with smoke and ash since the fire broke out which has severely impacted our community’s day to day.  Our local schools closed last Thursday and won’t reopen until after New Years, many businesses have shortened their work days significantly (if not closed all together) and we’re all donning attractive face masks when out and about.  It has been heartbreaking to see many we know affected by this massive fire (currently the 4th largest wild fire in CA history) and it will continue as containment is not expected before January 7th!

So far, the festive holiday events we typically participate in have all been cancelled or postponed…certainly adding to the question “Where are you Christmas?”.  It isn’t feeling particularly festive or Christmasy around here.  We were doing a great job making the most of the situation the first few days…Olivia had some friends over to bake Christmas cookies, we’ve watched a crazy number of Christmas movies and got creative with some crafts but the negative impact is starting to surface.  There is just so much to be depressed about and peppy, positive Patsy is fading.  Thankfully the house is filling up as Max arrived home on Wednesday, Wilson comes home later today and Aunt Andi flies in from the east coast this afternoon for a quick visit!!  That’ll switch things up and lighten the load considerably!  It may not feel like Christmas this year for lots of reasons but thankfully the wonder, the anticipation of good things to come, the hope of Christ and the reassurance of God’s presence among us is…always.

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Don we now our gay apparel.
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We woke up Sunday morning to a dusting of what looked like snow…but it was ash.
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Olivia and I decided to head south to escape the poor air quality for a few hours and do some Christmas shopping. We went from this…
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…to this in little over an hour!
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I’m horrible at taking fire pictures but we passed by the fire line on the ridge over Summerland on our way home later that day.  The fire fighters are doing an AMAZING job keeping the line contained to the ridge…so impressive and inspiring.
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Olivia and some friends headed down to the fair grounds to help with the animals that had to be evacuated from nearby ranches and the girls were given the fun job of comforting the animals! I’m not sure who enjoyed it more. 😉
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‘Went to Kyle’s Kitchen for some comfort food and found that Rudy continues to be “present” spreading his trademark Christmas cheer! Thank you Ferro Family for including Rudy in your decorating fun.

I’m particularly thankful, now, that the MOHD Squad got to go down to San Diego the weekend before the fire broke out to see Max perform in his PLNU concert choir Christmas show.  The variety of numbers performed made the show fun, festive and quite moving…it was the perfect way to kick off THIS Christmas especially.  I captured their rendition of my favorite carol…

Merry, Merry, MERRY Christmas dear ones.  May these last few days leading up to Christmas be filled with GREAT JOY, SUSTAINING GRACE, PERFECT PEACE and a STRENGTH of spirit and of mind that is truly beyond what the natural world can muster!  Thank you for your friendship and love.

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Kinda feels like this bears repeating…”It may not feel like Christmas this year for lots of reasons but thankfully the wonder, the anticipation of good things to come, the hope of Christ and the reassurance of God’s presence among us isalways.”

Pros and Cons

It seems most of my head space these days is spent praying about and contemplating the pros and cons of potential options available to me.  The reality is that there are a ton of theories out there but very few proven options.

Western/Conventional medicine can offer me two options at this point:

  1. Radicava – a medication that was FDA approved in the US in August.  Radicava has been proven to slow the progression of symptoms in some cases of ALS! (PRO)   It is administered through intravenous infusions -much like chemotherapy…(two weeks on, two weeks off initially and then 10 days on within two week period, two weeks off each month thereafter)…(kind of a CON ’cause it’s pretty consuming).
  2. Stem cell treatment through a clinical trial at UC Irivine.  I applied to be a part of the study several weeks ago and they are conducting applicant interviews now.  On the surface, it sounds quite hopeful with participants in previous trial phases reporting not only a slowing of symptom progression but also reversal of symptoms!  (Super Big PRO)  To participate in the study, however, I must commit to the 11 month study and NOT take Radicava.  Risky because my functionality could change a great deal in 11 months and I’m not guaranteed the stem cell treatment as half the test group will be given a placebo.  (CON)  I’m simplifying it but that’s basically the gist.  I don’t mind being a lab rat but is the risk of diminished functionality, physical effort, time away from family, etc, etc worth what I’d be getting (if anything) from the study?  Hard to say.

Alternative medicine can offer me a variety of treatments to help manage the disease…not bad just time consuming and often expensive.  (PROS and CONS to them all)

The challenge is to find a comfortable balance between getting caught up in the hysteria of all the proven and theoretical options out there AND getting caught up in a fatalistic attitude.  Both extremes are paralyzing…finding a balance requires a conscious (and ongoing) effort to focus.   It’s exhausting and, to be perfectly honest, my heart isn’t in it.

What I’m deliberating day in and day out are details related to disease management.  For 8 1/2 years, our family submitted to an intricate system of disease management with Rudy and as I wrestle with the details of my disease and cry out to God for help, I’m discovering I don’t want to submit to disease management anymore.  I don’t want to “treat symptoms”.  I want a system overhaul…I want a system reboot…I want my nervous system to resurrect.

Let me be clear.  I’m very grateful for conventional medicine, current technologies and the research & resources donated to get us where we are today in ALS treatment.  I’m also very respectful of what alternative medicine offers people like me.  I appreciate it, I’m doing due diligence in all areas and I’m engaging in the therapies that seem to fit me best but what I really want is for God to heal me this side of heaven.  I’m sure some of you are saying “well, duh!” but it’s an involved and thoughtful process for me and the subject of miraculous healing could be a blog post of it’s own.  I’ll share my thoughts on it sometime but for now I’ll just say I’m doing my due diligence in this area as well and seeking God for wisdom to truly understand what my options are and for discernment in determining what is best for me and my family.  Will you please join me in prayers for wisdom and discernment in my process as well as the motivation to put on my big girl pants and do the necessary legwork?  Thank you dear friends!  ‘Grateful for YOU!!!

Giving Thanks

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There is laughter in the house this weekend…throw your head back, belly laughter.  It has been a long three months since the boys left for school and it is good to have them home.  It is good to have the house filled with sound and activity.

The long holiday weekend will fly by and we wasted no time jumping into the holiday traditions we hold so dear and establishing some new ones.  We were blessed to help host the Rescue Mission Thanksgiving Feast on Wednesday…the kids entertained the guests, I helped greet and Rolf worked the room connecting with guests, staff, volunteers and the media.  Rudy’s favorite camerawoman from our local ABC affiliate was there.  We had a quick exchange in the parking lot when we arrived and I couldn’t help but think how happy Rudy would have been to be in the center of it all.  There were a handful of homeless guests who arrived and asked how Rudy was doing.  It was difficult to share the news of his passing but it was very special to witness the impact he had on so many.  The celebrations at the rescue mission just won’t be the same without him…come to think of it, he took after Rolf in his ability to work the room and connect with everyone spreading smiles and joy…while being a bit mischievous too.

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Thanks for the pictures Dale!

After the feast, we ran home, picked up Harley and headed to the cemetery for a small gathering to honor and remember our boy.  We wrote down and shared favorite memories, brought toys to donate to Toys for Tots and stayed until the cemetery closed for the night.  😉  We finished the day with a pizza (Rudy’s favorite) and pasta dinner in his honor.

There’s lots for which to be thankful.

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And that brings us to today…Thanksgiving.  We will enjoy celebrating with friends later but our day is going to be pretty simple.  It is difficult to describe where my heart is today.  I did a lot of observing yesterday…I watched my family exercise their gifts and talents, joyfully interact with friends and volunteers at the rescue mission and embrace good friends at the cemetery and I ended the day knowing (and being grateful) that the awesomeness of my family and their love for God gives me great hope and confidence for my family’s future…but it’s also the core of my heartbreak as I engage in disease management, face the long, scary road ahead and lament all the awesomeness I’m potentially losing.  I’m optimistic but I’m also realistic and when my week is filled with meetings with my hospice case worker, my new ALSA case manager,  initial taping for a legacy video, lots of calls on Rolf’s part to coordinate local medical care, etc, etc, etc, it’s hard not to face our reality.  Rolf and I are beginning to tap into local resources for which I am so very grateful but at the same time cause me heartbreak.  I am amazed at the human spirit’s capacity to feel…and not just it’s capacity to feel individual emotions but it’s capacity to feel it all at the same time.  Every burst of laughter includes a a wave of tears.  They are inseparable for me right now.  It’s complicated…every day is complicated.  The goal today is to keep it simple, enjoy the simplicity of being together and give thanks for the many rays of light forcing their way through the dark shadows.  We are blessed and there is much for which to be thankful…it’s just taking a lot of mental energy to focus on that part of our reality today.  Thank you for your continued prayers and messages of encouragement today!  We aren’t able to respond to them all but we read and are blessed by every one.  Thank you!!!

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Rudy and I supplied Dr. Harake’s office with “Heart Hero Bears” to give to new patients over the past few years. In the midst of all the other appointments in this week’s schedule, I pulled out our remaining stash of bears and dropped them off on Tuesday one last time.  It felt good knowing Rudy’s legacy will live on in a few more young lives touched by heart disease in the near future.
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Happy Thanksgiving dear ones. If you see a hummingbird today, consider it a hug from Rudy!

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May your Thanksgiving be filled with fun celebration and joyful reflection on all that is good.  Happy Thanksgiving!

Not All Doom And Gloom

Although the crushing weight of life is pretty constant right now, it isn’t all doom and gloom around here.  We’ve had some sweet “full of life” moments sprinkled throughout the heaviness of the past couple of weeks.

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My sweet friends, sisters Tiffany and Kandee, treated Olivia and me to a hair and makeup makeover! Here’s our before…

 

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…and our after! Ha ha
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Kandee Johnson’s Dream Team!! Check her out on instagram @kandeejohnson and you tube.
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MOHD Squad fun
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Rolf and I celebrated our 25th Anniversary where our relationship officially began…the Pantages Theater in Los Angeles. We saw “Phantom of the Opera” 26 years ago on our first date and “Hamilton” this time around. 🙂
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Olivia got all dolled up for Homecoming…
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…and had a fun time!
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We were blessed to host the SBRM graduates to dinner last week before the graduation celebration on Saturday! We are in awe and oh so proud of the 13 men and women who completed the year long recovery program!

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A precious celebration (hosted by the church where we had Rudy’s funeral).
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The MOHD Squad left graduation and headed to Nashville, TN…
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…just in time to celebrate cousin Rachel’s wedding to Mr. Josh Hurt (along with cousin Emma and the rest of the Kansas Wilson clan)!
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Today was the official ribbon cutting ceremony of Rudy’s Buddy Bench at MountainView school.
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It was a sweet time with the student body, teachers and school staff.

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I got a tender hug from one of Rudy’s close friends…
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…and one of Rudy’s favorite teachers. 😉

Special celebrations and sweet tributes have filled November so far and the month is only 1/2 over.  We’re counting down the days until Wilson and Max come home for Thanksgiving.  ‘Can hardly wait!

God is Bigger than the Boogie Man

I have come to the conclusion that the “Boogie Man” is real because in the past 3 1/2 months, we’ve confronted one nightmare after another that are still so difficult to believe…i.e, the potential scenario that made the hairs on the back of my neck stand up in caring for Rudy over the years is what unfolded on the morning of July 25th.  When I googled my symptoms for the first time and ALS popped up as a possible match, I physically shivered at the thought but, of course, dismissed it as a crazy internet diagnosis.  “I can’t possibly have ALS!!”.  Well, today was my 2nd opinion appointment at UCLA and the ALS diagnosis was confirmed.

To be honest, I’m ending the day less devastated by the confirmation of the disease and more disheartened by our day as a whole.  I knew my expectations were too high going into today and tried hard to readjust those expectations in the days leading up to today’s appointment but I really wasn’t prepared for how today played out.  I have two responses…the practical and emotional.

Practically speaking, Rolf and I walked away from today with our second opinion and a clear feeling that UCLA doesn’t have much more to offer us than what is available to us locally and that is super helpful information AND important to remember.

Emotionally, however, I’m left feeling defeated and duped.  We had the expectation that today would include a clinic visit with assessments from the clinic MD, physical therapist, respiratory therapist, nutritionist, etc.  We were instructed to have Dr. C’s medical notes faxed to the clinic for the MD to review.  We were told the authorization needed to have the clinic director’s information specifically so there wouldn’t be a delay in getting the appt scheduled or restrictions in care…a request that required a couple more phone calls to the insurance company.  Bottom line, we worked hard the past 6 weeks addressing the checklist of “to dos” that ended up not having ANY impact on today at all.  Our appointment lasted less than an hour.  Although I have no problem with the doctor we did see, it wasn’t the clinic director which makes me question why we had to go to the trouble of getting a second authorization with her name on it.  The medical notes faxed from Dr. C’s office, could not be located and, therefore, were not reviewed by the clinic MD.  Confirmation of the diagnosis was determined by my answers to a questionnaire and a quick reflex & physical strength examination. I don’t doubt that is all the information the doctor needed to make his determination but I feel like we wasted our time coordinating the transfer of records that weren’t used.   I thought we’d have more detailed information and the beginnings of a game plan as a result of today.  Instead, I feel like we’re ending the day exactly where we started it and I can’t tell you how deeply disappointing that is for me.

To add insult to an already bruised spirit, I fell as I left the clinic.  (Ironic as we had just had a discussion with the doctor about the big threat and potential negative impact of me falling!)  It was an epic fall with bags flying and nothing to break the fall.  Rolf had already left to get the car and there I was on all fours with tears streaming down my face in the middle of a large hallway unable to get up.  Luckily, a maintenance employee heard the commotion, came out of a break room to inspect and hoisted me to my feet.  Needless to say, I’m pretty sore tonight and less confident on my feet in general.  😦

Before we left campus, Rolf and I made our way to the main hospital to donate a box full of toys to Child Life in Rudy’s memory.  It was difficult to be there without the boy so embedded in our UCLA memories.  It felt like a foreign place…the familiarity of UCLA that we felt would be our comfort in this next medical journey just wasn’t there anymore…making it all feel even more isolating and unknown & our boy further away.

So, what’s next?  I’m really not sure.  There are no specific follow up appts planned at UCLA for now.  We’re in the middle of open enrollment trying to figure out the best insurance plan configuration to meet our current needs.  Dr. C and the doctor we talked to today didn’t have any knowledge of or information on the stem cell clinical trial at UCIrvine so we are left to figure it out on our own.  And we will, all of it, one day at a time but not until next week because the MOHD squad has a SBRM graduation and Nashville wedding to go to this weekend!!!

I wish I could say some profound spiritual truth anchored me today in the midst of my frustration and disappointment but what did come to mind was the Veggie Tales theme song from the “God is Bigger than the Boogie Man” video my big kids watched a thousand times when they were little!

God is bigger than the Boogie Man, He’s bigger than Godzilla or the monsters on t.v.          Oh, God is bigger than the Boogie Man and He’s watching out for you and me.

Silly, I know, but it’s true.  God is bigger than our present circumstances and today’s lack of helpful information and options means there’s lots of room for God to work in His limitless power, mercy and love.  Thank you, dear ones, for the abundance of texts, emails, and prayers upon prayers throughout today!!!  Each one a reminder that we aren’t alone in this.  God is bigger and our circle is wider than we could ever imagine and we are deeply blessed by the love.  Thank you!

Rudy’s headstone was placed this week…another detail adding to our mixed bag of emotions.  The final detail in laying our boy to rest is done.  We’re pleased with how it turned out and hope it inspires some fun for those who visit him.  A fitting tribute for our boy for sure…

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Bracing Ourselves

Halloween is just a few days away.  The official start of the holiday season – my favorite time of year (Remember? “Happy Hallowthanksmas”!!).  It’s going to be a difficult season and I’m trying to brace myself.  If Rudy’s absence could feel any more acute, it’ll be in the next couple of months.  This month has already felt empty without the thought and planning we typically put into Halloween and Rudy’s costume…especially in recent years.  I’m missing the fun and creativity Rudy inspired this time of year.  I am missing Rudy.

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Rudy and his pit crew
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2014 with Nurse Sara
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2016  Superhero siblings

I don’t want to sit around and be depressed all season and if all we were trying to manage is the loss of Rudy, I’m pretty confident I’d be motivated to redirect on some levels and give back in creative ways in Rudy’s memory but we’re trying to manage so much more and my heart isn’t in any of it…yet.  I’m praying for holiday inspiration and joy.

Speaking of management, I had an appointment with my local neurologist on Wednesday (also the 3 month mensiversary of Rudy’s passing).  Like us, he is surprised by the long delay for my 2nd opinion and feels we shouldn’t wait any longer to begin disease management.  He is referring me to a pulmonologist for tests to gather baseline lung function data which will be helpful in the future.  He is also prescribing another drug (Radicava) that will take some time to get approved by insurance and wants to get the process started now.  It’s a drug that is administered intravenously (daily for two weeks, off  two weeks, etc).   Of course, if the diagnosis changes as a result of the 2nd opinion, we’ll cancel the plans in motion and redirect but I don’t think we’re going to see a change in my diagnosis…my symptoms are getting worse.  Rolf and I are beginning to explore local support resources specific to ALS and I’ve applied for a clinical stem cell study at UCIrvine (a long shot worth exploring).  Wednesday was hard.  I’m working on seizing today and not becoming overwhelmed by the heartbreak that blankets our holiday season this year or the heartbreak that seems to be blanketing everything right now.  I guess we’re bracing ourselves for more than just the holidays.

My appointment with UCLA is set for November 9th.  Had there been a cancellation allowing me to go sooner, it would have happened yesterday so November 9th it is!  Cedars got back to us with an appointment date on November 8th.  Since the timing of both appointments is essentially the same, we’ve decided not to go Cedars and just stick with UCLA.  It definitely feels like we’ve spent the past 5 weeks spinning our wheels but I’m still trusting in the timing of it all and eager to see where the next couple of weeks will lead.  Thank you for your continued prayers dear friends!

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Rudy’s Picasso Pumpkin

AUTH in Hand

We received the authorization paperwork we’ve been waiting for in the mail yesterday.  PTL!  It’s a relief to finally have it but it does feel a little anti-climatic…particularly, I think, because UCLA still can’t see us until November 9th.

Unfortunately, the momentum we initially felt with Cedars Sinai has faded too.  They needed to review my MRI images and medical notes before they’d set an appointment… we’re waiting to hear back from them.  Rolf and I would still like to go to Cedars as the more input we can get at this point, the better but it doesn’t look like we’ll be heading to the hills anytime soon.  It’s disappointing.

So, we sit and wait.  We’re good at that.  It’s unfortunate this step in the journey has taken so long and it’s unfortunate Rolf and I are left feeling wiped out by the process but we’re positioned, now, to move forward.  On a practical level, I guess our prayers are shifting from the acquisition of the authorization to a smooth 2nd opinion process, quick answers and OPTIONS!  It would really be nice to have some options.  🙂

‘Looking for lifelines,  Trish