This past week, Ela’s transplant team discussed her case. The most recent Allosure test (which is a pretty reliable indicator of rejection) came back higher than it should be again, her BNP (a number than can indicate heart failure/rejection) is again higher than it should be, and her antibodies are not responding as well to all the previous and current heart rejection treatments. Her echo results are also telling us that her heart is stressed out and rejection is still present, despite exhausting all typical, mainstream rejection treatments (repeated plasmapheresis, IVIG, rituxinab, bortezamib, steroids).

What does all this mean for her now? 1) We continue to go up on her immunosuppressants and steroids at home. 2) We try other different and not as common treatments (though there aren’t very many left to try). Ela is a difficult, non-typical post transplant case. The one medication that her team thinks gives her the best chance of being rejection-free for the long term is called Daratumamab. It’s an infusion medicine that is usually used to help treat some cancers. It has some, though limited, data for heart transplant patients. But the available data does seem to have positive outcomes overall. However, insurance is denying it and isn’t giving the option to do peer-to-peer or appeal.

If this treatment at some point does get approved for her, it will be very intense. We will go up weekly (3 day trips) for several months and then bi-weekly for several months with the whole treatment lasting 4-5 months. She would be severely immunocompromised more than she already is. She would probably need a port placed for medication administration. All of this is hard to process and figure out. This treatment plan poses great challenges for our family as you can imagine. Yet, it may be what we have to do.

One thing I have learned these last 6 years, is that the medical world involving a complex kid like Ela is a strange one and definitely a fight to get what she needs. I fight for treatments that, as her mom, I really hate for her to have to endure but praying that through this pain hopefully comes better days. I have never fought so hard for things that I wish she would never have to experience. For example, this Daratumamab treatment….I’m fighting for something that will bring hardship and separation from family, something that we pray works but no guarantees, something that will force us to drive miles upon miles weekly while she endures these treatments. I am fighting for something that will cause her to miss out on things she enjoys doing because she will be so immunosuppressed. Medically, our options are becoming quite limited if this rejection doesn’t resolve. But my God has no limits. In His grace, He provides the stamina for me to keep fighting and advocating. He is the Giver and Sustainer of life. If He wants this treatment for her, He will make a way for it one way or another. If He has other plans, well I have to trust that He knows best knowing that He loves our girl more than I ever could. His plans are always perfect, good, and right on time even though I may not always see it or understand. We must be fully submitted to His plan regarding our family as He alone knows the number of all our days.

Right now, since we are struggling to get insurance approval for the above treatment, we will continue with her monthly IVIG infusions and talk with the team about what other options are available knowing that the team feels they won’t be as effective for Ela as the Daratumamab will be. We will also be doing lots of praying. So please pray with us!

This is a lot to process for us. We didn’t think post-transplant life would be as difficult as it has been for her. We dread the pain she still has to endure way too often. We are tired. Don’t get me wrong, we are so thankful for her new heart and that she got it when she did. We know that none of this takes God by surprise and He is with us every step of the way no matter where this journey leads.

Pray for:

-Approval of this treatment, if this is what God wants for her

-Wisdom as we weigh our other options and less common rejection treatments

-Pray for Ela’s safety no matter what treatment she gets and for complete healing of this rejection if it be the Lord’s will

-Our whole family as we prepare to adjust again to changes, disrupted routine, etc.

Thank you for your continued love and support throughout the years.