written on September 18
Today is the day! Day 1 of 14. Radacava is here!!! It’s been 22 years since a drug has been FDA approved for ALS. It’s not a cure, but a “hope” for slowing of progression. Jeff is the ONLY patient in Indiana that is starting this drug. We don’t know why…is it the hefty price tag of $146,000 a year (our insurance covered this) or is it the intense life changing treatment of 2 consecutive weeks of daily infusions followed by 2 weeks off…repeated forever? I don’t know the answer, but we are willing to be a pioneer. Let’s do this.
We are currently downtown at the IU Simon Cancer Center. We are in the infusion pod and Jeff is relaxed in a recliner, sporting his North Face camping t-shirt, all while Radacava is dripping through his IV and we’re listening to the sound of rain pinging on the glass windows. It’s otherwise quiet in here. Jeff is reading the book of James and I am gathering thoughts to update you, my friends.
Medical update: Jeff continues to have progression in his upper body and it has progressed to his legs. He is still working full time, walking, and driving. Stairs are becoming difficult. Getting dressed and ready for the day is increasingly challenging. Jeff is happy, engaged, encouraging, and brings a smile to everyone’s face. This man is unique, one of a kind and touches the heart and soul of so many.
Our home goes on the market this week. Not easy for any of us, but something we need to do as we plan for the future. We will downsize to a ranch home.
Most importantly, we are LIVING! We are laughing, we are planning, we are doing. Our weekends are packed with adventure…lake, mountain biking, rock climbing, Cubs game, concerts, friends and family, Kings Island, you name it, we’re doing it. While Jeff can’t participate physically in a lot of things, he is there. He is supportive. He is encouraging us. He is present. We have good days, oh we have great days, and then we have days where we fall to our knees, weak, broken and hurting.
Friends, I’m impatient. I’m desperate. I beg and plead. Then, I ignore and withdraw for a few days because all I hear is silence. I’m human. I feel set aside…ignored…God rarely operates at a pace that pleases me and I’m growing tired and impatient in the waiting. Just this morning I found myself reminding God that Jeff is starting treatment today. I mean, this is significant, God…(as if He’s forgotten). Remember us? Can you hear us? We’re scared. We’re frantic. We’re grieving. We’re hurting. OUR dreams and plans are MESSED up.
Ahhhhhhh, but I am quickly reminded that He knows the entirety of our story from beginning to end. He also knows how our story weaves into the lives of others. God is good even when I struggle to understand. I don’t have the same capacity to love like He does. He loves Jeff more than I ever could and I find that impossible! He is worth trusting and following and putting all our faith and hope in. We can’t make sense of this, but we will trust Him and hope in Him. And the “hope” I referred to at the beginning of the post is different than our “hope” in God. Hope is the desire for something good. I “hope” this treatment helps slow Jeff’s progression. There is uncertainty. We don’t know what will happen. We desperately “hope” for a cure to be found. But hope in Christ is different. Based on what He has done for us, we can have hope that He is who He says He is and that He is in complete control and working all things for good. Hope. Hope is confidence. Hope is similar to faith in that you believe it will happen. Not just believe it, but you expect it to happen. God is faithful. God made promises to us – we trust, expect, believe it will happen. We have hope. Will you join us in that hope?
We love you!
Tara & Jeff