Devastating Mayo Clinic Diagnosis

Written on May 6


I’ve written and rewritten my post to you today a millions times in my mind and then typed and erased the equivalent number of times. It’s been 2 days since we received devastating, life changing, no…more like life destroying, news and I couldn’t bring myself to share it with you right away. The top Neurologists in the nation reviewed Jeff’s test results and said “I have to agree with your care team back home, you have ALS…and there is no cure.” We had a few hours to process this information with a team of Dr.’s, nurses and researchers. Then, the overwhelming fear set in as we opened the door, walked out into the main atrium of the Mayo Clinic and stood there in silence. Tears streaming, staring blankly at each other, we managed to choke out the words “now what?” No treatment, no plan, no course of action for this terrible disease.

What we know:

· Jeff has been taking a drug called Riluzole for a month now. In 22 years, it’s the best drug they have and by best I mean it extends life on average 2-3 months. While advancements are being made, it is still in the beginning stages. JUST yesterday, a new drug was approved by the FDA called Radicava or edaravone. It slows progression by up to 30%. Still no cure, just a slowing of progression. The price tag? $145,524 per year (hopefully insurance will cover this). The drug is given intravenously on a daily or near-daily basis for 14 days, followed by 14 days off the drug.

· IVIG (Intravenous Immunoglobulin Therapy) treatment – Jeff will receive IVIG treatment starting Monday, May 15th. The ALS Clinic in Indy had it narrowed down to 2 diseases: ALS (terminal) or MMN (treatable). MMN stands for Multifocal motor neuropathy. The disease mimics ALS and is treated by monthly IV treatments that are life long. The IVIG treatment was approved by our insurance prior to visiting the Mayo Clinic. He will go 5 days in a row for 4-5 hour long infusions each day. The Mayo Clinic ruled out MMN and said we did not need to follow through with treatment, but Jeff and I decided to continue. His body will not respond to the treatment with ALS, however, Dr’s have been wrong in the past and we (HE) is willing to go through this treatment “just in case.” We will pray for a medical miracle.

· Clinical trials – we are on a waiting list for a stem cell clinical trial anticipated to start in Minnesota this summer. It’s a phase 3 trial (which is good), however, it’s a year long trial and 50% of participants get a placebo. So, you have a very high risk of having an invasive procedure and getting the placebo.

· ALS Clinic – we will go to the ALS clinic every 3 months in Indianapolis to monitor progress and manage symptoms. We meet with a team of respiratory therapists, physical therapists, occupational therapists, nutritionist, an equipment team, nurses, doctors, researchers and social workers.

· We need prayers and we believe in the power of prayer. We have hope. We believe in a God of miracles. We know what is ahead of us, and the pain and fear we feel now is just the warm-up before the fight. We are preparing our hearts and minds for the fight of our life. We need you in our corner!

Sitting in my inbox this morning was an article from Proverbs 31 Ministries titled “Why isn’t God answering my prayer?” Timely, isn’t it? Coincidence? It never is. Jeff and I have a very strong faith our anchor is secure, however, we are holding on for dear life. It’s easy to quote scripture or sing songs about pain and suffering when times are good. But, to believe them when your entire world is crashing down is entirely different.


“Have you ever cried over something so much that you run out of tears? Your swollen eyes just give out and dry up while a current of unrest still gushes through your soul. And you look up toward heaven in utter frustration.

Then the seemingly unjust silence from God ushers us from a disturbed heart to weeping with bitterness of soul. And we start to feel something deep inside that comes in conflict with everything we hold true: If God is good, why isn’t He being good to me in this?

And in this moment of raw soul honesty, we’re forced to admit we feel a bit suspicious of God. We’ve done all we know to do. We’ve prayed all we know to pray. We’ve stood on countless promises with a brave face. And still nothing.

So what do we do when we feel set aside? What do we do when our heart is struggling to make peace between God’s ability to change hard things and His apparent decision not to change them for us?

We do what Hannah did. We keep pressing in.

The object of Hannah’s affection was the Lord Himself. He was the source of her hope. He was the source of her deep, soul satisfaction. Her devotion to Him was never tied to whether or not God answered her prayer. Her devotion was securely attached to who she knew God to be.

Oh, friends. This is where I believe we need to stop and do some personal heart examination. Where does our affection lie? To what is our devotion truly tied? We need to consider these questions carefully. Because that thing we’ve been so desperate to see come to pass? That unanswered prayer? That unrelenting ache?

Those answers and the easing of that ache aren’t the source of us finally becoming fully satisfied. They aren’t. And believing this lie is a scheme of Satan to keep us in an unsatisfied place. Not to mention that connecting our faith to whether or not God answers our prayers when and how we want is shaky ground.

If we want settled and secure hearts, we must tie our hope to the Lord Himself. We must set our affection fully and firmly on Him—delighting ourselves in who He is instead of what we long for Him to do. Because the depth of our affection for God directly affects the level of our devotion to God. And I want to live this life devoted to Him, no matter how or when He answers my prayers.”

Jeff and I long to have a faith that is not contingent upon our circumstances, but based on what we know to be true about our good and faithful God. This is absolutely the life we never imagined or wanted. If we believe God is who He says He is…and if we believe the Bible is true, then we must believe that God is writing a better story than we ever could. I don’t say this with ease…I say this with extreme hesitation, pain, fear, disappointment, hurt, feelings of abandonment and unanswered prayers. If I’m being completely vulnerable, I want to throw my fist into a wall and say “Stop it. We have endured enough.” But I have to go back to what I know…God has never failed at delivering a promise. His promises are good and His promises are true. So now we will do our best to love the life we have, even if it is the life we never wanted.

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