One of the many difficulties of cancer is uncertainty, and we see that again with Ava's recent stomach pains. The plan is for the family to return home to Chicago by the end of next week hopefully, but that depends on how Ava is doing. There are two many factors affecting her discharge home:
1. GVHD/stomach pains - Ava may have an endoscopy tomorrow to take a look at her gut. Admittedly, there is reluctance about having this done. If they see evidence of GVHD, they will treat her for that. That means restarting steroids for however long, and needing to slowly taper off again. Because Ava had pretty severe GVHD, it wouldn't be surprising for her to have evidence of GVHD even if this isn't the cause of her current pain, but she would still get started on steroids to treat it.
2. Cyclosporine - I think Ava has less than two weeks left on cyclosporine. However, because some of her blood counts were down, she may be experiencing more hemolysis (destruction of red blood cells) resulting from cyclosporine. She got a red blood cell transfusion yesterday. If she is experiencing hemolysis, they will switch her from cyclosporine to sirolimus instead. Ava would then need to be monitored to make sure the transition goes smoothly, which will also delay her return home.
It would be pretty disappointing if Ava had to start on steroids again. The steroid itself is hard to take long-term, not to mention all the other things it affects being an immunosuppressant. Ava's viral levels would need to be monitored, antivirals started, and other medications given to treat the side effects of the steroids. The steroids really affected Ava's mood as well. It's been so refreshing for Mike & Esther to see Ava become much more herself again now that she's been off steroids, talking and playing. No one is eager to change that.
Certainly no one wants Ava to be discharged home prematurely, but everyone is eager to return home together! I understand that if Ava needs to stay longer, Mike will come home with Gwen first, and Esther will stay behind with Jude and Ava.
As always, thank you for your faithful prayers for the Lee family!