It has been over a month since we wrote our last update.

What can I say? Busy summer for the Yustiz family. Between finishing the school year, family vacation, watching the World Cup (no judging!), and 4th of July celebrations we haven’t had much of a chance to think about writing an update on Ela.

The good news is that we’ve had a couple very good months with her.

Seeing our girl jumping and running around with her brothers is such a display of God’s grace to her and to our family. It never ceases to amaze me. For vacation this year, we were able to spend some time in Williamsburg and got to enjoy seeing the kids at Busch Gardens and Great Wolf Lodge. Pre-heart-transplant Ela would’ve been puking all over the place and struggling to catch her breath. Post-heart-transplant Ela didn’t slow down one bit! A 6 year old doing what 6 year olds do!

Praising God in the good times…and

Praising God in the bad times.

That’s what we do right? Remember Job’s words to his wife? “Shall we receive good from God and shall we not receive evil?” (Job 2:10a). His rebuke to his wife in this passage is that not accepting the reality that God decrees both prosperity and calamity for our lives is the stuff of fools: “you are talking like a foolish woman” (Job 2:10b).

The bad news is that we thought her most recent doctor’s appointment was a good one when it actually wasn’t. Some of you heard from me and heard from Leslee and probably caught how excited we were: “praise God! We finally get a good visit!” Unfortunately, the most important tests came in revealing that she’s likely in active rejection again. Let me show you part of a text message I got from Leslee yesterday.

“Ela had a cardiac appointment and  IVIg infusion the week of July 4th. We thought the appointment and infusion went well and her labs looked a little better than before. Yesterday, July 7, I (Leslee) got a call from CHOP with the remaining lab results. Sadly, her Allosure (the test that is a more accurate measure of active transplant rejection) has once again doubled since last month. So we no have 4 months of data where this number continues to climb. Hers is at a 1.5 now. A good number would ideally be below 0.2. For Ela even a 0.4 would be acceptable. But her Allosure result continues to almost double every month. Antibodies are playing a factor into all this as well although hers are on the lower side, it seems that they don’t have to be high in her case to cause damage. So at this time, all of her team is in agreement that it is time to try the dreaded Daratumamab infusion again. (Remember, this is a very intense and rigorous weekly infusion that she couldn’t complete the last time we tried due to it causing blurry vision).”  

There’s still a few things that need to be hashed out with her team and some things that need to be hashed out with insurance (surprise surprise) but it is likely that Ela will begin this treatment at the end of July/beginning of August. Assuming this is God’s plan for our family at this time, Leslee will be in Philadelphia on a weekly basis once the treatment begins.

A quick word of thanks to those who have been praying for us. And a quick word of thanks to those who have been giving. We recently received some offerings from family in Christ where my father-in-law ministers, thank you all.

We don’t do this perfectly but it is our desire to get better at this, and I hope you join us in this endeavor.

Praise God in the good times and in the bad times.

Thank Him when there are good news and run to Him when there are bad news.