For those that may have missed the last update, Ela’s Allosure test (the one that can indicate active rejection and if the heart is potentially being affected because of it) continues to trend up— which is not good. Her team has been back and forth all summer as to if we should try Daratumumab infusions again. (The one that’s really intense and experimental in patients like her… that also caused her blurry vision when we attempted it before). Since her last admission for rejection in April, we have continued monthly “rejection maintenance” IVIg infusion treatments and added another immunosuppression medication to her now 8 meds. All of this, sadly, is not cutting it. Her rejection indication numbers are rising. Now, the whole team is in agreement that we can’t wait any longer to try Daratumumab infusions again.

Ela will be admitted to CHOP on Monday to start this infusion treatment. You may recall, she wasn’t able to complete the first of this Dara treatment a few months back due to the side effects. Our prayer is that she can successfully complete the Dara infusion this time with little to no complications. It will be a long and probably not very fun few days for her next week. Ophthalmology will do a baseline assessment first thing, then the infusion will run from Monday into Tuesday at the lowest possible rate we can run it at, hopefully able to complete the whole infusion, and then ophthalmology will assess her vision again.

Now, another piece to this particular infusion is that it is a weekly thing. If Ela can get through the first infusion, then we will be doing this every week for the next 2 months. After that, infusions will space out to bi-weekly for 3 more months. This means, in total, it will be almost half a year of treatments, lots of driving, hospital stays, and being away from family. This will be yet another strenuous challenge on our family. Every time something like this comes, I dread being away so much from our boys. I have to trust God’s timing is perfect. But to me right now it doesn’t feel very perfect with our oldest getting ready to start school again and me being apart from him most of the school week. Pray for him this school year. Our youngest is very clingy to me, so please pray for his adjustment to this crazy schedule too. God’s plan for our family has meant for us to be apart so often, yet although we have lots of experience it doesn’t get any easier. Although honestly, if left just to me, there would never be a “good time” for this treatment. So I’m thankful that God handles that and I don’t have to. Ela has truly gotten to have an amazing summer doing things she couldn’t physically do last summer…or ever for that matter. For that we are so grateful.

I have had some very candid conversation with Ela the last few days as I attempt to explain that we will need to be going to CHOP more often. Her questions of, “Why? What’s wrong with my new heart now? Why does it keep doing that?” And her comments like, “I wish I wasn’t born with a sick heart. Josiah never has to go to the hospital,” make the tears well up in my eyes, but also allows for some sweet moments to talk about God, sin and the world, and the hope to come. Maybe I will expound on these conversations in another post at a later time as this post is already getting lengthy.

To wrap up, a very dear friend gave me a book called, “When God Doesn’t Fix It” by Laura Story. My husband knows I have a hard time finishing books, but I finished this one in a week because her journey was so relatable and what she shared was such a good reminder of hard truths that we often forget about when in the middle of trials. She wrote the song, Blessings, that I have sung many a time over the years. But now, it means more. Yes, we do pray for things like healing, successful infusions, more time outside the hospital and so forth, all in faith knowing that God absolutely has the power to do all these things and more. Yet, can I trust Him even if He doesn’t “fix it?” Can I still say, “this is for His glory and my good?” Can I trust that God’s plan is better? Even if he says no to all the things we mentioned earlier to pray for, do I believe that it is because He has something better for me and my family? He has a big picture plan that only He can see. Can I trust Him in that? The chorus of Blessings sums it up perfectly,

‘Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
What if a thousand sleepless nights
Are what it takes to know You’re near?
What if trials of this life
Are Your mercies in disguise?

What if the blessing is the trial—the raindrops? What if He heals in the most broken times of our lives? What if we would come to know God in a deeper way that we wouldn’t have other wise if it weren’t for the sleepless nights? Isn’t our purpose as believers to know Him and make Him known? What if trials of this life bring us to that end and to also enjoy those mercies that often don’t look like what we think they should.

“that I may know him and the power of his resurrection, and may share his sufferings, becoming like him in his death,”
‭‭Philippians‬ ‭3‬:‭10‬ ‭

“In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ.”
‭‭1 Peter‬ ‭1‬:‭6‬-‭7‬ ‭

Oh that God would continue to help me and our family think biblically in our approach to trials of this life, so that I/we may know Him more deeply while joyfully giving Him all the praise, glory and honor He so rightly deserves.