“I believe it’s not primary. It’s secondary.”

My mind hit a wall – yet at the same time was spinning to keep up with all that was being said. Since the heavy pollen hit us with an early spring, Raphael has struggled again with his lungs. It was the same timeframe last year when he ended up in the ER gasping for breath. This time we were at a planned appointment.

The amyloid clinic. It’s the first time in this journey that we have visited a team that actually focuses on Amyloidosis.

Currently, we are a year and a half post transplant. And his lungs still have good and bad stages. Our doctor reached out to Mayo Clinic for a second opinion on the best next steps to take. When you have had a stem cell transplant due to amyloidosis, they monitor several factors to determine your progress and remission stage. Typically the next step is for the person to start maintenance chemo meds. Yet some of the factors in the bloodwork would tend to lean towards not needing the maintenance. So that leaves the ‘why’ question about the ongoing lung issue. With one doctor pushing for maintenance and two others not thinking it necessary, the lead doctor decided on Mayo.

Secondary. From the beginning of this journey, each doctor searched to determine if Amyloidosis was the primary disease or was secondary caused by a primary. It was determined to be primary. And systematic. Two years after diagnosis we are now hearing the possibility that this was never primary. What do they say was primary? Common Variable Immunodeficiency. The cure – immunoglobin infusions.

The Mayo team asked questions as we described the events which led up to diagnosis. It was the first time we sat talking to people who were not shaking their heads attempting to understand the odd symptoms we described. When the lead doctor mentioned he thought it might have been secondary, lots of questions went through my mind. But his next statement took time to grasp. “I am not sure that the transplant was needed.”

There are no adequate words to fully describe all that went through my thoughts and emotions as each minute passed by. I was very much in the present hearing every word being spoken. Yet I also was in the past seeing EVERY – SINGLE – MOMENT – AND – EVENT! Like a movie, one scene after another flashed before me.

The chemo blast. The nausea. Loss of hair. Mouth sores. Loss of appetite. Pain. Weakness. Needles. Fever. The wanting to give up. The tears. And so, so, much more.

I left Ralph in the waiting room as I headed to get the car. My mind and heart were both racing with thoughts and emotions. Anger. Betrayal. Hurt. Disbelief. It all was very real and each one was clashing against the other for my attention. And as always, that quiet dialogue started.

“So much was lost. No one can give us back those two years. It’s gone. Events missed. And the cost of it all! So much money – for what?!?! We can’t get it back.”

“I will repay what the cankerworm has eaten.”

That inner fight started to calm but my thoughts were still running. “You have got to be kidding!! Really?!?! Could this really be happening?!?! Was it all really necessary?!?!! We trusted each member of our medical team.” My mind turned over every step that was taken. Did I miss something? Should I have pushed for a second opinion instead of trusting the first doctor who had a plan for dealing with something so rare?

Question upon question – so fast – and I still had not made it to the car yet. Betrayal started screaming louder inside of me. I lingered there awhile as I felt the pain of it all.

“You meant it for evil, but God meant it for good.”

Like fresh water being poured over me, my soul found comfort. The familiar passage spoken by Joseph to his betrayers was the balm I needed. The enemy of our souls has had a plan for harm – harm of us, our family, our calling. But God has a higher calling and purpose. That plan has always been for our good. His quite whisper in my spirit helped to turn my perspective around.

It’s been two weeks now since our visit to the amyloid clinic. When sharing about our report as I was still in a state of shock, I often heard the words, “You can’t go there.” Yes. Yes I can! And yes, I need to. I need to talk it out with my Father. I need to share how He holds us even through it all. I need to process all that has happened — and what is still coming. To not face these very real events is to live in denial. No, I can’t change past events. But to be able to embrace this news and live in forgiveness and hope is to walk life leaning into His strength.

So why would this happen to us? Well – why not? We are not the first people to go through life facing trials or injustice. None of us were promised a perfect life. But we were promised a perfect Love and Strength to carry us through this imperfect life.

As of today, I have come to recognize that even this team from Mayo could be wrong about transplant. It might have been needed. When the first report of amyloid was spoken, every doctor he was seeing took a pause and the scrambled to find out how to deal with it. They all had his best interest in mind. But even as Mayo stated, his case is rare. It’s a rare form of a rare diease and they did the best with the knowledge they had at the time.

I do know that I can’t deny when God showed Ralph, “You must go through this. But I will be with you.” And He was. EVERY STEP OF THE WAY – EVERY TURN OF EVENTS – HE HAS CARRIED US!

Why did he need to go through it all? It was for a nurse to find reconciliation with her family. A pharmacist to find comfort and strength during her own trying season. Patients to hear how a heavenly Father has held us. Doctors, nurses and so many more to hearing the story of God’s love and to see humans actually walking in faith despite the pain of the journey. Hospital staff to watch a husband and wife walk through a storm together. A people around the world who have followed our story needed to watch how to cling to hope through the storms.

He is Who we live for. To share about Him to others is what we desire. Even if it costs us the past three years. He is seeking a people that understand that love is more important than holding onto an offense or a betrayal. He wants us to be Christ to those around us – even if that means to wash the feet of the Judas in our lives. That is being Jesus with skin on to those He chooses to bring into our path.

And He will repay it all as we continue to trust Him in this journey. And He will always turn it around for good in His own time and way. For He is holy, He is faithful and He is good.

“Beloved, be confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ.” Philippians 1:6