Hi all! It has been a few weeks since we have updated. Ela has been continuing her weekly experimental Dara infusions and is doing well overall! Today is infusion day again (#8) so we are hanging out in the hospital on this cool rainy day here in Philly.

Today is a big day in the sense that we are getting a ton of labs. All of these results will take a few days to come back, but they are very important as they will determine what the next few months may look like for Ela. There’s 2 ways this can go: 1) The results aren’t as good as they would like and we will have to continue infusions bi-weekly through January or 2) The results show that the Dara infusions are working well, we take a month break from the infusions, do a heart catheterization end of October, and then make a new plan after that (which will probably consists of monthly visits for a while at the minimum). We will update with news once we know what the plan is.

September 6 marked 2 years with Ela’s new heart! We remain so thankful to God, her medical team and to her donor family. It’s a bitter sweet time of course and we never want to diminish or make light of the selfless decision that family made in their darkest hour. We don’t know who they are, but we will always be connected in a unique way and forever grateful. Even though post-transplant life has been much more complicated than we had hoped or wanted, she is still thriving in a way that was not possible before transplant. We try not to take the days, memories, and moments for granted and attempt to enjoy each one to the fullest. I love watching her get faster and stronger as time passes.

Thank you for your continued prayers and support along the journey. You all have encouraged us in so many ways over the years. We will post again once we have some answers regarding her continued transplant rejection treatment plan.