AMX0035: Phase II

Jeff and I are currently in route to Ohio State University for an evaluation to be selected for a Phase II Clinical Trial. It is a 2:1 randomized, double-blind, placebo-controlled Phase II trial to evaluate the safety and efficacy of AMX0035 for the treatment of ALS. What does that mean?! AMX0035 is a combination of two drugs that he will take in powder form for 6 months. He has a 66% chance of getting the drug and a 33% chance of getting a placebo.

This clinical trial is designed to demonstrate that treatment is safe, tolerable, and able to slow decline in function. The trial will also assess the effects of the drug on muscle strength, respiratory function, and blood biomarkers of nerve cell death.

Jeff will continue to stay on the IV treatment, Radacava. We do not believe that this drug is effective, however we don’t know that. There is no way to measure the effectiveness of it so until a better option presents itself, we will continue the current course of treatment, in addition to the clinical trial meds if he is selected. We are traveling with IV bags for a hotel drip session tonight. Jammies, IV drip, junk tv and just the 2 of us sounds like a lovely date night. My, how our evenings have changed!

Dear friends of ours will bring Evan and Cole to us tomorrow night.  They have a rock climbing tournament in Columbus, Ohio this Saturday – that worked out nicely!  We get to spend today hopeful for a new treatment and this weekend watching our boys compete in something they love.  I’ll call that a WIN!  Make it a good day, friends!

It’s time…to Shred ALS!

Tara & Jeff

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STAMPED…URGENT

One year ago tomorrow, March 3, 2017, the phone call came. Jeff was at work and I had just finished teaching a fitness class. The Neurologist was about to issue her verdict, and our future hung in the balance.  Momentary silence.  A deep breath.  “Your EMG results are in and I’m referring you the ALS Clinic.”

STAMPED…URGENT

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One minute you’re driving down the road singing and dancing to a beautiful life, and the next moment the car spins dangerously out of control.  URGENT.

I think about my boys and the great responsibility I’ve been given as their mother. They have souls that will last forever and I only have a limited time to impact their lives for good. URGENT.

Jeff spends 40+ hours a week at work. Evan and Cole spend 35 hours a week at school and 12+ hours a week at the climbing gym. I spend countless hours teaching, working, and managing the activities of my home, children and husband. Our weekends are packed. Too often we get caught up in the busyness of life that we can miss the glory and splendor of Jesus Christ right in front of us. “Wake up Tara, don’t miss it!” URGENT.

Your life is meaningful.  Your life has purpose.  Your life has precious value.  What is the true significance of life?  I believe it is to know God, to love God and to reflect God.  He is more valuable than anything this world can offer.  Don’t miss it, don’t waste it. URGENT.

We want to live with urgency. We want to stop wasting energy with inconsequential and meaningless activities. Life and death hangs in the balance. The kingdom of God is just around the corner. It’s coming. It’s expected. It’s anticipated. AND…it’s meaningless when our lives fail to reflect that urgency

UPDATE:

It’s been exactly 2 months since I’ve written.   Life is a bit challenging, but we face it each day with strength, bravery and courage. Jeff’s attitude is encouraging and soothing to my grieving heart. He makes me a better person! We face difficult decisions on a daily basis. There is always something to do, paperwork to sign, research to be done, new things to learn, meds to administer, or daily care-taking.  But, I’ll never forget these words that Jeff recently spoke to me…and it’s now engraved on my heart…”I want Evan and Cole to see that no matter what life threw at us, we did it well.  We are happy, we are strong, we fight, we LIVE and we love hard.”  So that’s what we’ll do.  We will entertain the sadness and grief and anger as it comes…and then we’ll tell it to move aside because we’ve got a life to live well.      

We want you to know that every card, email, text, and phone call is so meaningful to us as we face the fear of the unknown. I’ve mentioned before that I knock on heaven’s door all day long. My simple prayer lately has been “God, please show up in a BIG way.” He sure has done that through all of you.

#shredALS

The Shred ALS shirts were a huge success and hundreds of shirts are now scattered across the nation.  From the beach to the mountains.  From the east coast to the west coast.  From the pilates studio, shred415 studio, boxing gym and track team.  It absolutely brings a smile to our face every time we see you post an image on social media wearing your shirt! We have a front row seat to the goodness in this world and it’s awe-inspiring to see.  We feel you behind us! 

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*Shred415  (fitness studio in Indianapolis, IN) poured their hearts into us and hosted a fundraising event this past weekend.  I’m still speechless at the way clients, co-workers, and friends showed up and loved on us.  It was so powerful.  God showed up.  God showed up in a BIG way and he’s moving mountains.

*”SHRED” has completely different meanings for SHRED ALS and Shred415.  Shred415 graciously allowed us to use a portion of their name because of the special bond and impact the community has had on our family.  “Defeat ALS” and “End ALS” already exists and “Shred ALS” has a similar, yet powerful message.  We need a world without ALS.  Let’s SHRED ALS!

Check out this short clip: SHRED ALS YOU TUBE VIDEO  (I’m missing a ton of photos!)

The Shred ALS t-shirt fundraiser raised $9,000 and the Shred415 fundraiser raised another $9,000 for a total of $18,000!  Jeff’s power wheelchair ($22,000) cost us $4,500 out-of-pocket after insurance coverage.  We will purchase a used van in the next few weeks and the wheelchair conversion is approximately $20,000.  We will continue to keep you posted on the specific ways you are helping our family in a BIG way.  With all that we have, thank you for your generosity.  We will never forget your kindness.  We certainly couldn’t do this without you!

MEDICAL UPDATE:

Jeff’s power wheelchair arrived in late January. The progression continues at a steady rate and he uses it daily in our home but he’s not quite ready for full time use. His niece and nephew (Britton – age 3 and Kensington – age 5) climb aboard and throw their arms up high for wheelchair races in the house! He’s a great uncle!

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Jeff is still walking, but can no longer do stairs and needs help getting into and out of bed, along with standing from a seated position. His core, arms and legs are weakening significantly, but his lungs and speech remain strong!  PRAISE.  Jeff is still working full time, however, once he goes on disability, the kids and I come off his insurance (there’s always something to navigate!). Therefore, I will return to work full-time so that there is no lapse in insurance coverage.  Jeff is still driving, but we all take turns buckling him in and starting the ignition.  We are a team.  We are so thankful for the weekly help from friends and family that assist with Evan and Cole’s active schedule.  This allows Jeff and I to have more time together (or simply a relief from all the other daily tasks) and that is a priceless gift.  

Jeff brings so much joy to my life (along with everyone else privileged to know and love him) and we are learning to love the life we never wanted. We laugh, we smile, we cry and we embrace what is in front of us. We have seen firsthand that God can use our greatest heartache. He can work through our greatest trial. He can reveal himself through our greatest pain. You see, God is always at work. He shows up in unexpected places, at unexpected times, and in unexpected ways.  He shows up in a BIG way. 

All our love,

Tara & Jeff

BE THERE!

“BE THERE”

Our parents worked hard to build a strong foundation…a foundation of faith that has sustained us through some very difficult trials of life.  That is our primary objective as we parent Evan and Cole.  Plant the seed and build the foundation.  I can hear my late fathers gentle yet confident voice saying “Tara, be there.”

It’s the start of a New Year. TWENTY EIGHTEEN. Our resolution is not elaborate or complex. You ready for it? “BE THERE.”  This is a simple, yet profound phrase that we want carved into our children and loved ones hearts.  We want you to BE THERE.  Physically, be there.  Emotionally, be there.  Spiritually, be there.  Ultimately…Eternity, be there.  If we accomplish that purpose, it will be our greatest legacy.

My dad is there…waiting….on the other side.  I can hear him saying “will you be there too, Tara?  Meet me there.”  Let that marinate for a second. Will you be there?  That is my prayer for me, my prayer for my family, and my prayer for you.  A day of celebration is coming like nothing that has ever been seen in the history of mankind.  Be there.  It is the only comfort to those who suffer, struggle and grieve today.  Be there.

He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away. (Rev. 21:4)

Our 2018 Prayer:

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This is the reward for the faithful. “I have fought the good fight, I have finished the race, I have kept the faith.  Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing.  (2 Tim. 4:7–8).

Be there,

Tara & Jeff

LETTERS

Good morning friends!

I’m reclined on a patio overlooking the bay in Naples Florida. Hello sunshine! Barefoot, in my favorite pair of soft black sweat pants, white v-neck men’s tee, wrapped in my tattered, somewhat embarrassing, ivory blanket that I absolutely can’t be without. Our boys are being loved on by friends and family back home. We were gifted this trip by dear family friends…we are so loved and so grateful for everyone that pours into us! I hope you know how much we love, appreciate and adore ALL of you…even though we can’t reach out personally to everyone. Nothing is insignificant. We are forever changed because of you. Thank you!

This was our first trip traveling through an airport with IV meds and requesting gate assistance and transport. Step stools are needed for shuttles, assistance standing from a seated position, and a hand to grasp for balance on uneven sidewalks or when legs fatigue during extended time walking. Oh how I love doing life with this man! His courage strengthens mine. You can’t properly exercise courage unless you expose yourself to situations that require it.

We spent our first day in FL Christmas shopping. We’ve been so overwhelmed lately that Christmas snuck in and demanded attention that we couldn’t give. So, time away together was just what we needed to shop, escape the day to day pressures, recharge and most importantly, plan. Plan for the future and plan for our boys.

Day 2-3 was spent poolside, soaking in the sun, writing to our boys. We have a lot of things we want documented for Evan and Cole…you see, we are all living on borrowed time. Let that sink in. Let that change your life profoundly as it has ours. We are no different than you, with the exception that we’ve been given an average timeline.

Jeff can no longer type on a keyboard so he wears a headset and uses “Dragon Speak” software for voice to text typing. We brainstormed a long list of topics including personal letters, advice and guidance, along with our hopes and dreams for Evan and Cole. We are a team, an amazing team might I add?!! We parent together and it’s been fun and very challenging to discuss, in the midst of our circumstances. I hope this gift of writings to them will be just as precious as it is for us creating it. They will know, without a doubt, that intentional love, thought, planning and preparation went into this. It’s raw, it’s emotional, it’s vulnerable, it’s honest, it’s beautiful, it’s encouraging, and it’s full of hope, faith and promise. We are so proud of it!

We will compile everything into a book, and have asked my sister to be the creative design behind it. She’s responsible for making it LOOK fun to read! Big job Amanda! Sample of what we’re covering so far (but not limited to):

FAILURE

LOVE

DATING

PEER PRESSURE

OUR FAMILY VALUES

WHAT SOCIETY SAYS VS. THE BIBLE

RECOGNITION/COMPLIMENTS

HOPE

FAITH

PROUD & CHERISHED MOMENTS

MARRIAGE

RESPONSIBILITY OF A HUSBAND & FATHER

IMPORTANCE OF FAMILY, GOOD FRIENDS, EDUCATION, GOOD JOB, FINANCIAL SECURITY

RESPECT

LIFE OF SERVICE

RELATIONSHIP WITH JESUS

CHERISH YOUR BROTHER

COURAGE AND FEAR

The Bible is our source for writing inspiration and we want our boys to know that everything they need to know, including the life lessons we cover, will come from God’s living word. Living? Yes, it’s not an outdated, inapplicable book.

Once printed, we will begin the age appropriate conversations now. This is just the beginning of what we hope to be on-going letters and written guidance to our boys. We finished the rough draft of all the topics above while pool-side, after 2 full days devoted to writing. We will soon focus on personal letters to Evan and Cole at (future) important life milestones, along with a small, short video series.

Yesterday was a FREE day for us so we took a ship to the Florida Keys (Key West) for the day. We meander at a slower pace now. Vacations look very different today, than one year ago. Last year you would have found us running on the beach, throwing kids in the ocean, body surfing, jet skiing, and playing football. Even just shopping is difficult now because a 1/2 mile walk leaves Jeff’s body feeling like he just ran a marathon. So today, we slow down. It’s our last day here and we will spend it on the beach enjoying each other’s company without distractions, without decisions to make on our home, job, insurance, disability, medical equipment, or “what’s next.” We’ll take a deep breath, close our eyes, soak in the warmth, and love and be loved.

Wishing you a beautiful holiday season with your loved ones. That is truly a gift…it’s certainly my favorite gift and the only thing I want this year. Merry Christmas from our family to yours!

Tara & Jeff

SHRED ALS

SHRED ALS has multiple meanings for our family.  Using the term “Shred” from Shred415 displays the love and support of a loyal client base and instructors/teammates in a unique community that comes together each and every day to work hard, motivate, empower, and challenge each other to grow mentally and physically stronger…together.  I love my Shred family!
SHREDALSClick on the link below to purchase a Shred ALS t-shirt.  100% of the proceeds will go directly to Jeff Homan‘s medical expenses.  Shirts will be shipped FREE to Shred415 Indy for pick-up (individual shipping is available).  Friends and family that are out-of-town, message me and I can pick up your shirts and distribute later.

 

WOMEN'S TANK
WOMEN’S FLOWY RACERBACK TANK
SOFT STYLE T SHIRT
SOFT STYLE T-SHIRT
YOUTH T-SHIRT
YOUTH T-SHIRT